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Old 12-28-2010, 12:58 PM   #1
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Seronegative Arthritis

About 2 years ago I was diagnosed with Fibro but I have a very high SED rate of 74 and my CRP is over 15 and since Fibro doesn't come with inflammation there have to be other factors at play. My then Rheumy didn't want to search further and said those two markers were "just one of those things" and didn't want to dig deeper. I have a new Rheumy now and he's very thorough. My first visit to him was intense and tons of blood work followed. They pulled 12 vials of blood for tests after that first visit. Some things were very surprising and he wanted me to see an Oncologist. The Oncologist said after reading all the blood work from that most recent to labs and test done 10 years ago that what I have looks autoimmune and she didn't think I had cancer. HUGE relief there!! I have to have a colonoscopy and then see the Rheumy again. Since I tested negative on my RA factor but have all the symptoms, my ANA was positive but the titer was only 1:40 and they considered that negative. All so confusing and the doctor said I have a little of a lot of things but not enough. He's hopeful when I see him again...after the colonoscopy he will have a diagnosis for me and we can proceed with treatment. He mentioned maybe seronegative arthritis. I've never heard of it before. Does anyone here have it? How is it treated? I have been in so much pain for so many years now. I would really like some relief SOON!!! The only thing I have for pain now is Hycodone and it's minimal at best...a little better than nothing at all. Because of all the pain I'm in, I am disabled. Whatever the condition is has robbed me of everything I enjoy doing. I've become old before my time...it's depressing but I try not to let myself get too depressed. It only makes me feel worse and that doesn't help at all. So, what can I excpect if I get a diagnosis of seronegative arthritis?
Thank you...
sharon

 
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Old 12-28-2010, 01:34 PM   #2
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Re: Seronegative Arthritis

My full diagnosis includes the "seronegative" part, for me it's the same as for those sero-positive. I laugh that it took more effort to prove I am really in pain- I've had MRA's, X-rays, full body scans etc. But I guess everybody goes through those lovely machines.
Luckily I'm not disabled and most of the people that are around me doesn't have to know I have such problems. The treatment varies for individuals, for me it's just Plaquenil, though I've been on MTX, Relifex etc.

 
Old 12-28-2010, 02:22 PM   #3
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Re: Seronegative Arthritis

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Originally Posted by Applegreen View Post
My full diagnosis includes the "seronegative" part, for me it's the same as for those sero-positive. I laugh that it took more effort to prove I am really in pain- I've had MRA's, X-rays, full body scans etc. But I guess everybody goes through those lovely machines.
Luckily I'm not disabled and most of the people that are around me doesn't have to know I have such problems. The treatment varies for individuals, for me it's just Plaquenil, though I've been on MTX, Relifex etc.
I've had all the tests are you except for the MRI....never had one and I don't think I could tolerate it. I had enough trouble with the bone scan. I was fine with it until it got to my neck and then they had to do the rest like a chest x ray. I probably won't see my Rheumy until February so we'll see what he comes up with then. I just need some help soon.

Thank you for responding.
sharon

 
Old 12-28-2010, 05:52 PM   #4
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Re: Seronegative Arthritis

Hi Sharon and welcome to our little home for the arthritic!

Sero-negative simply means that none of your blood work is positive to anything in particular. There is an entire group of arthritic disorders called the "sero-negative spondyloarthropathies" but they all have arthritis of the sarco-iliac joints and lower spine.....and nothing that can be found in the blood.

But you can have sero-negative rheumatoid arthritis and I have it. The problem with the Rheumatoid Factor test is that about 5% of the general population has a positive RF with no RA. And if you check the post I did on the Criteria for RA, a positive RF is only 1 of 7 criteria and you have to have at least 4. Check it out.

The doc's can diagnose you even without the blood tests. My doc did just by watching me for a while and then doing an MRI on my wrist which showed degeneration similar to RA. And I have it quite severely and yet no positive blood work except that high sed rate and barely up CRP. So I went on strong drugs very quickly and this Christmas, was able to crochet a sweater and jumper for my granddaughter for the first time in many, many years.

So yes, sero-negative forms of arthritis do exist and are quite common. Let us know what happens after the colonoscopy and what the rheumy says about your joints. In the meantime, I'll bump up the Criteria for RA post again.

gentle hugs..................Jenny

 
Old 12-29-2010, 07:52 AM   #5
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Re: Seronegative Arthritis

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Hi Sharon and welcome to our little home for the arthritic!

Sero-negative simply means that none of your blood work is positive to anything in particular. There is an entire group of arthritic disorders called the "sero-negative spondyloarthropathies" but they all have arthritis of the sarco-iliac joints and lower spine.....and nothing that can be found in the blood.

But you can have sero-negative rheumatoid arthritis and I have it. The problem with the Rheumatoid Factor test is that about 5% of the general population has a positive RF with no RA. And if you check the post I did on the Criteria for RA, a positive RF is only 1 of 7 criteria and you have to have at least 4. Check it out.

The doc's can diagnose you even without the blood tests. My doc did just by watching me for a while and then doing an MRI on my wrist which showed degeneration similar to RA. And I have it quite severely and yet no positive blood work except that high sed rate and barely up CRP. So I went on strong drugs very quickly and this Christmas, was able to crochet a sweater and jumper for my granddaughter for the first time in many, many years.

So yes, sero-negative forms of arthritis do exist and are quite common. Let us know what happens after the colonoscopy and what the rheumy says about your joints. In the meantime, I'll bump up the Criteria for RA post again.

gentle hugs..................Jenny
Hi Jenny and thank you for responding.

I feel like I am finally getting closer to a real diagnosis after all these years. I have no doubts about Fibro but I also know there's something more than that going on with the high SED rate and CRP. My new Rheumy is in Philadelphia at Jefferson Hosp. and he's very thorough. I hope I can get a proper dx before too much longer and get on with the treatment because I so want to be able to get back into living my life again. I used to love photogrphy but it requires a lot of walking and bending and all that is way too physical for me in the last several years. I love doing art shows but if I can't take the pictures and can't set up my show...I'm in trouble. I'm so glad to see that you've been able to crochet again...it gives me hope that I will be able to get back to the things I love too. My hands are effected but so are my legs and my back...my arms..you name it. It's very widespread.

What types of medications do they have you on now? Are they injectables? I'm trying to figure what there might be that would help me. My GP put me on Prednisone for a while but that didn't help at all...well, maybe a little at first but after the first step down...it was literally downhill after that. The first Rheumy had me on the typical Fibro meds but they did nothing at all. I think I felt worse! I was so tired I could barely function. Lyrica was a total waste of time. Cymbalta..forget it. The last drug began with an S and I can't remember what it was called. I only lasted a couple of days on it the palpitations were so strong I thought my heart would beat right out of my chest!! I called and told her I couldn't take it and she all but insisted I continue. That's why she's no longer my doctor...that and she wouldn't entertain any exploration that anything other than Fibro even with the high SED rate and CRP was even wrong with me.

Anyway, thank you for renewing my hope. Hopefully I'll get that colonoscopy before the end of January and I can see the Rheumy again and finally get on to a DX and treatment.
Take care,
Sharon

 
Old 12-29-2010, 01:38 PM   #6
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Re: Seronegative Arthritis

Medications really depend on diagnosis. With the back pain, they might even be looking at one of the sero-negative spondyloarthropathies like Ankylosing Spondylitis. it is inflammatory but different from something like RA. and having both osteoarthritis along with an inflammatory arthritis is very common. I started with OA when I was in my later teens and only got RA 6 years ago.

For the OA, I was all sorts of NSAIDs like ibuprofen or scripts like Celebrex. I had many surgeries to try to fix joints and have had both knees replaced. Not many meds for OA.

For RA, I do an injection of methotrexate once a week and get a biologic drug(Orencia) infused every 4 weeks. Has made a huge difference. My RA hasn't done much damage to my joints but has instead, hit my blood vessels in my brain, affecting sight. It also inflamed the tissues of my eyeballs causing anterior uveitis. Recently, they found fluid around my heart....another RA problem. My very swollen hands have returned to normal and I can crochet again. Just my body is falling apart!

However, RA drugs don't help OA and my hips are quickly approaching replacement time and my replaced knees may need revisions. My whole neck is titanium from surgery for OA.

And if you do have an inflammatory type of arthritis, it leaves you vulnerable to others disorders. I have now gotten Sjogren's Syndrome...also affects the eyes and I may have developed a type of gout that can affect people with RA.

So I will hope and pray you don't have an inflammatory disorder and that if you do, it is singular and stays that way(and is mild). But if it isn't, that they get you diagnosed and into treatment quickly.

I'm glad you changed docs as I cannot tell you how many docs dump people into the "fibro diagnosis" instead of digging a little deeper to see if it's a sero-negative disorder. You have a good doc. A good rheumatologist is worth their weight in gold.

Ask any questions you want to....we have a great and knowledgeable group here. And it's a good place to vent when the pain gets too hard to take, too.

gentle hugs..............Jenny

 
Old 12-30-2010, 09:06 AM   #7
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Re: Seronegative Arthritis

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Originally Posted by jennybyc View Post
Medications really depend on diagnosis. With the back pain, they might even be looking at one of the sero-negative spondyloarthropathies like Ankylosing Spondylitis. it is inflammatory but different from something like RA. and having both osteoarthritis along with an inflammatory arthritis is very common. I started with OA when I was in my later teens and only got RA 6 years ago.

For the OA, I was all sorts of NSAIDs like ibuprofen or scripts like Celebrex. I had many surgeries to try to fix joints and have had both knees replaced. Not many meds for OA.

For RA, I do an injection of methotrexate once a week and get a biologic drug(Orencia) infused every 4 weeks. Has made a huge difference. My RA hasn't done much damage to my joints but has instead, hit my blood vessels in my brain, affecting sight. It also inflamed the tissues of my eyeballs causing anterior uveitis. Recently, they found fluid around my heart....another RA problem. My very swollen hands have returned to normal and I can crochet again. Just my body is falling apart!

However, RA drugs don't help OA and my hips are quickly approaching replacement time and my replaced knees may need revisions. My whole neck is titanium from surgery for OA.

And if you do have an inflammatory type of arthritis, it leaves you vulnerable to others disorders. I have now gotten Sjogren's Syndrome...also affects the eyes and I may have developed a type of gout that can affect people with RA.

So I will hope and pray you don't have an inflammatory disorder and that if you do, it is singular and stays that way(and is mild). But if it isn't, that they get you diagnosed and into treatment quickly.

I'm glad you changed docs as I cannot tell you how many docs dump people into the "fibro diagnosis" instead of digging a little deeper to see if it's a sero-negative disorder. You have a good doc. A good rheumatologist is worth their weight in gold.

Ask any questions you want to....we have a great and knowledgeable group here. And it's a good place to vent when the pain gets too hard to take, too.

gentle hugs..............Jenny
Hi Jenny,

Thank you so much for all the information. I feel like I'm starting to get a handle on this now. Is this considered an autoimmune condition?

Those medications do have a lot of horrible side effects. I can't imagine that one day I could lose my vision from medications. Well, since I haven't even started anything in the way or real treatment (my moderate pain relief only treats the symptoms and not the cause) I don't have to worry about it all now. You mentioned Orencia and said it's an infusion drug. What does that mean? I understand about the injectable that you do weekly but don't quite know what the infusion is about.

I've had all these symptoms for so many years and they have gotten so bad over the years. I'm afraid I passed the mild stages ages ago on the pain meter. I didn't have health insurance for so many years and had to just put up with it until about 2 years ago. I found a local doctor who would give me a reduced rate office visit and I signed up for charity care at the hospital which pained me to no end but I didn't really have a choice. They covered all my labs and studies for which I am totally grateful. After I was approved for disability my Medicare started 5 or 6 months later which was this past May. It only took my disability 9 months I think to be approved which should give you a hint to my condition. Anyway, I feel very confident that a change for the better is on the way.

You mentioned going to a hospital in MA...which one are you planning? I used to live up there (temporarily here in NJ but plan to return to MA in the next couple of years) and I will be looking for a new crop of doctors there. The one I used before has stopped taking insurance!! I know it's a hassle but good grief!!

Did you get dug out from your snowstorm yet? Here in NJ we got about 20 inches and they finally sent a plow out this morning but our street is still a real mess.

Thank you again for all your good wishes and all the valuable information.
Take good care,
Sharon

 
Old 12-30-2010, 02:14 PM   #8
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Re: Seronegative Arthritis

Sharon...Moldova is also in NJ and she got 3'. I was born in Orange, NJ, used to live in Westfield, Mass. and I'm now in north western Conn. We only got about 15".

I have been having surgery at New England Baptist Hospital in Boston. It's a private orthopedic hospital, much like Hospital for Special Surgery in NYC. Private doesn't mean expensive but rather, a hospital without an emergency room. The docs love it because no "on-call" for the ER. They get weekends off and the residents at Brigham and Women's cover along with the in-house docs. Great docs and great service and a post-op infection rate of .4%. It's uphill from Brigham and Women's. Well worth the 2 hour drive.

But I see a rheumatologist in Springfield, Mass. They have a in-office infusion program so I just go to his office for my meds. Orencia is given by IV every 4 weeks. I drive up, get blood work done and then sit for 30 minutes while it infuses and then go home. Enbrel and Humira and Simponi and Cimzia are all injected but Orencia and Remicade are IV's.....I'm not sure about the new one, Actemra, if it is IV too.

My eye problems are not from my meds but from the RA. There is a drug that can affect the eyes(Plaquenil) but it is very rare and reversible but some get very nervous about it. Fact is, the disease can blind you at a far higher rate than the drug can.

All of these inflammatory arthritic diseases are auto-immune to one extent or another. Your body is attacking itself. In the case of RA, it causes the immune system to keep producing a "cytokine", a type of protein produced by the immune system that helps to fight off invading organisms. But it's figuring out which one of the cytokines is causing the problem. Enbrel and several of the others tries to neutralize the cytokine "tumor necrosis factor". Actemra goes after interleukin 6. A couple of other drugs go after interleukin 1 and 2. Orencia works differently as it stops all of them by causing the T-cells to not trigger the release of cytokines at all. Kind of a "shoot them all" technique but I failed to respond to the "tumor necrosis factor inhibitor" drugs.

And then you get drugs like methotrexate that slow the immune system so the other drugs can work better but for some, methotrexate is enough. Just slowing the immune system allows the body to work and control it.

If it turns out to be lupus by any chance, they have a whole bunch of different drugs that really go after the immune system, similar to drugs given to transplant patients. And those "sero-negative spondyloarthropathies" have their own drugs too although many overlap with RA.

Where are you planning to move to in Mass?

hugs.............Jenny

 
Old 12-31-2010, 10:13 AM   #9
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Re: Seronegative Arthritis

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Originally Posted by jennybyc View Post
Sharon...Moldova is also in NJ and she got 3'. I was born in Orange, NJ, used to live in Westfield, Mass. and I'm now in north western Conn. We only got about 15".

I have been having surgery at New England Baptist Hospital in Boston. It's a private orthopedic hospital, much like Hospital for Special Surgery in NYC. Private doesn't mean expensive but rather, a hospital without an emergency room. The docs love it because no "on-call" for the ER. They get weekends off and the residents at Brigham and Women's cover along with the in-house docs. Great docs and great service and a post-op infection rate of .4%. It's uphill from Brigham and Women's. Well worth the 2 hour drive.

But I see a rheumatologist in Springfield, Mass. They have a in-office infusion program so I just go to his office for my meds. Orencia is given by IV every 4 weeks. I drive up, get blood work done and then sit for 30 minutes while it infuses and then go home. Enbrel and Humira and Simponi and Cimzia are all injected but Orencia and Remicade are IV's.....I'm not sure about the new one, Actemra, if it is IV too.

My eye problems are not from my meds but from the RA. There is a drug that can affect the eyes(Plaquenil) but it is very rare and reversible but some get very nervous about it. Fact is, the disease can blind you at a far higher rate than the drug can.

All of these inflammatory arthritic diseases are auto-immune to one extent or another. Your body is attacking itself. In the case of RA, it causes the immune system to keep producing a "cytokine", a type of protein produced by the immune system that helps to fight off invading organisms. But it's figuring out which one of the cytokines is causing the problem. Enbrel and several of the others tries to neutralize the cytokine "tumor necrosis factor". Actemra goes after interleukin 6. A couple of other drugs go after interleukin 1 and 2. Orencia works differently as it stops all of them by causing the T-cells to not trigger the release of cytokines at all. Kind of a "shoot them all" technique but I failed to respond to the "tumor necrosis factor inhibitor" drugs.

And then you get drugs like methotrexate that slow the immune system so the other drugs can work better but for some, methotrexate is enough. Just slowing the immune system allows the body to work and control it.

If it turns out to be lupus by any chance, they have a whole bunch of different drugs that really go after the immune system, similar to drugs given to transplant patients. And those "sero-negative spondyloarthropathies" have their own drugs too although many overlap with RA.

Where are you planning to move to in Mass?

hugs.............Jenny
Hi Jenny,

How are you doing on this last day of the year? I hope all is well in your corner of the world. Or Connecticut. I've spent a little time in CT. I went to Torrington for a concert a few years back and or course I know 95 like the back of my hand. I lived on Cape Cod and running back and forth between there and here...if I had a nickel for each trip LOL!!

You're originally from Orange huh? You know that huge cemetery that is on both sides of the GSP then. I don't know much more about Orange than that cemetery. I live in a small town outside of Atlantic City which is where I was born. My mom remarried when I was about 5 and he was a civil service engineer so we moved all over the place. I feel very qualitifed to say there is NO PLACE like New England!! I love it so much. It really touches my heart and soul.

Moldova only got 3 inches of snow? She must be in the northwestern or southwestern part of NJ. Most areas seem to have gotten bombed. I'm only guessing about the northwestern part of the state but I know Salem County (about 45 miles from me) got about 3".

So, back to topic....is Seronegative Arthritis similar to Ro Lupus? I think with that you test negative for everything too. Lupus is one of the things the doctor tested for and I've always tested negative for it but I have some symptoms of that as well. I also have dry eyes and mouth so those are pieces to another part of the puzzle. He did so many tests and just about everything you can think of were within normal limits. All the tests for antibdies for these things were fine. It's just all weird. I guess that's a normal situation though. How long ago did they come up with Seronegative Arthritis and Ro Lupus? Imagine all the people (myself included) who have waited years and years for some sort of DX and treatment and since everything was fine and there were no signs of anything being wrong...we're just had to put up with it all. I guess that's how so many ends up in the Fibro pool. It really is a dumping ground for doctors who don't want to follow through. If it weren't for the SED rate and CRP being so very high...I guess I would be lost in space. I think everyone needs to be very proactive where their healthcare is concerned and not necessarily trust what you're told unless it makes sense to you and you know you're being told the truth. My GP had no clue what the problem was but they knew there was something inflammatory going on and something systemic and they referred me to the Rheumy who stopped at Fibro about 10 minutes after I was examined by her.

I'm a little nervous about all those medications...ok, I'm a lot nervous about them. I know I do want my life back though and I want to stop being prohibited from doing what I enjoy because of the pain and all. My new Rheumy (I probably told you) is located at Jefferson University Hospital in Philadelphia and I take the train up there. Being disabled I ride up and back and take a cab from the 30th St Station to his office and have lunch when I get back before my train back and it's less than the cost of driving up there. I'm a little concerned about the side effects of the medications...the infusions...for the first time. I don't want to be sick on the train coming back. I also wonder if I'll have to fight my Rx plan to get them to cover all this? I know those drugs are wicked expensive. I don't want to end up in that donut hole I keep hearing so much about. Well, first steps first. I can't wait to get the stupid colonoscopy done so I can get an appointment to see the Rheumy again and we can get on with the process. I'm the biggest chicken when it comes to all things medical. There no way I could ever have an MRI and be awake. Holy Cow!! Elevators are too closed in for me...don't put me in a tube!! I have visions of me tryint to claw my way out! OH NO!! Never happen. I've gotten pretty good at blood work as long as I tell the tech I'm a hard stick and need an infant needle. If I don't they use me for a pin cushion and can't get a vein they like. I have to point out the good ones. I'm good now though. When I was younger I used to pass out! I'm a bundle of nerves! Always have been.

Ok dear heart I'm going to stop here. If I don't get a chance to "talk" to you again before 2011, have a safe, wonderful and healthy New Year and we'll talk again soon. Thank you again for all the information. By the way I love your little gray kitty with the hat. Very cute!!
Take good care,
Sharon

 
Old 01-01-2011, 08:39 AM   #10
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Re: Seronegative Arthritis

Guess I should have used words....Moldova got 3 feet of snow! Tend to just go to the little " or ' marks and I can hit the wrong one.

Are you on disability and Medicare...that is where the doughnut hole is? There's a little trick to that. But they don't start you on IV's first...that is last.

Sero-negative arthritis is more like rheumatoid than lupus. But it can turn into almost anything with time and observation. That is the key..observing. Your doc will figure out with time just what is wrong. But the drugs you'll start on will be pills and maybe some shots after a while you do at home.......don't even worry about IV's. Don't get ahead of yourself.

Did you know they now have an MRI machine that can do hands and arms and stuff small that you just sit at? You don't have to go "in" it.

One of the things with all of these disorders is that they can overlap a lot. I had the skin problems of lupus on my arms and it has gone away with the RA meds. Since RA meds don't work with lupus(or most don't) it must have been an RA rash that resembled lupus or was overlapping with lupus. But it has disappeared. Backs of my arms were dark(dusky in color) and rough...like the surface of an orange...and it has cleared up. Used to get that redness over the bridge of my nose and that is gone too.

But one thing I don't like is that all these drugs don't touch OA. That is still going gangbusters!

Your doc has his work cut out from himself watching and figuring out what is what with you.

I don't remember the cemetery in Orange as we moved from there to Montreal when I was 7. But I do know a lot about Cape Cod. Summered there as a kid and have gone there regularly as an adult. Took my Girl Scout and Boy Scout troops there. Love the outer Cape and the Sandwich area. I can find my way around Chatham and Orleans from memory from when I was a kid. I've paddled all over the upper area of Pleasant Bay. I can remember when we stayed in a house in East Orleans when old "Black Jack" Pershing was still there...my father knew him. Got to know the lady who wrote That Quail Robert...a Cape favorite. Learned to swim in Crystal Lake on Monument Road in East Orleans. Still go to check on the various breeches in the dunes....not just Chatham but the one they are really worried about in Truro.

I love Cape Cod and wish I could afford to retire there! Fascinated by the geography, geology, weather and wild life. Love to "bird" there. Can't do Monomoy anymore but that is such a neat place to go birding. Knees just can't do it.

And I remember going back and forth from Chatham, NJ to Chatham, Mass before I-95 was put in! It was good 10-12 hour drive back then. My mother had some very choice words for the roads of Providence(which you used to have to go through back then). But even here in CT, we have to either go north to the Pike and 495 or south to 95 to get there.

I know waiting for a diagnosis can be frustrating but you will get there. When I first started seeing a rheumy, the average time to diagnose lupus was 7-12 years and "sero-negative" anything didn't exist. I started with terrible tendinitis all over my body but no arthritis other than OA, 33 years ago. Started after an infection so every said it would go away....it never did. But by 2002, I was almost frozen in place from the inflammation and they finally saw calcium deposits in the tendons that would change where they were constantly. A sign of inflammation so they could start the stronger drugs. Now, after 2 years on Orencia, my tendons have stopped hurting. It was inflammatory all along.....a weird presentation of RA right from the get go. But I missed out on 25 years of early treatment that would have prevented a lot of my current problems. No ones' fault...just not what anyone had ever seen before.

So work with your doc on figuring out what this is so you can get the correct treatment....so important.

gentle hugs for the new year...................Jenny

 
Old 01-02-2011, 01:03 PM   #11
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Re: Seronegative Arthritis

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Originally Posted by jennybyc View Post
Guess I should have used words....Moldova got 3 feet of snow! Tend to just go to the little " or ' marks and I can hit the wrong one.

Are you on disability and Medicare...that is where the doughnut hole is? There's a little trick to that. But they don't start you on IV's first...that is last.

Sero-negative arthritis is more like rheumatoid than lupus. But it can turn into almost anything with time and observation. That is the key..observing. Your doc will figure out with time just what is wrong. But the drugs you'll start on will be pills and maybe some shots after a while you do at home.......don't even worry about IV's. Don't get ahead of yourself.

Did you know they now have an MRI machine that can do hands and arms and stuff small that you just sit at? You don't have to go "in" it.

One of the things with all of these disorders is that they can overlap a lot. I had the skin problems of lupus on my arms and it has gone away with the RA meds. Since RA meds don't work with lupus(or most don't) it must have been an RA rash that resembled lupus or was overlapping with lupus. But it has disappeared. Backs of my arms were dark(dusky in color) and rough...like the surface of an orange...and it has cleared up. Used to get that redness over the bridge of my nose and that is gone too.

But one thing I don't like is that all these drugs don't touch OA. That is still going gangbusters!

Your doc has his work cut out from himself watching and figuring out what is what with you.

I don't remember the cemetery in Orange as we moved from there to Montreal when I was 7. But I do know a lot about Cape Cod. Summered there as a kid and have gone there regularly as an adult. Took my Girl Scout and Boy Scout troops there. Love the outer Cape and the Sandwich area. I can find my way around Chatham and Orleans from memory from when I was a kid. I've paddled all over the upper area of Pleasant Bay. I can remember when we stayed in a house in East Orleans when old "Black Jack" Pershing was still there...my father knew him. Got to know the lady who wrote That Quail Robert...a Cape favorite. Learned to swim in Crystal Lake on Monument Road in East Orleans. Still go to check on the various breeches in the dunes....not just Chatham but the one they are really worried about in Truro.

I love Cape Cod and wish I could afford to retire there! Fascinated by the geography, geology, weather and wild life. Love to "bird" there. Can't do Monomoy anymore but that is such a neat place to go birding. Knees just can't do it.

And I remember going back and forth from Chatham, NJ to Chatham, Mass before I-95 was put in! It was good 10-12 hour drive back then. My mother had some very choice words for the roads of Providence(which you used to have to go through back then). But even here in CT, we have to either go north to the Pike and 495 or south to 95 to get there.

I know waiting for a diagnosis can be frustrating but you will get there. When I first started seeing a rheumy, the average time to diagnose lupus was 7-12 years and "sero-negative" anything didn't exist. I started with terrible tendinitis all over my body but no arthritis other than OA, 33 years ago. Started after an infection so every said it would go away....it never did. But by 2002, I was almost frozen in place from the inflammation and they finally saw calcium deposits in the tendons that would change where they were constantly. A sign of inflammation so they could start the stronger drugs. Now, after 2 years on Orencia, my tendons have stopped hurting. It was inflammatory all along.....a weird presentation of RA right from the get go. But I missed out on 25 years of early treatment that would have prevented a lot of my current problems. No ones' fault...just not what anyone had ever seen before.

So work with your doc on figuring out what this is so you can get the correct treatment....so important.

gentle hugs for the new year...................Jenny
Hello Jenny..

How are you doing today? I hope you're having a good day today. I think I'm in for busy week so I'm trying to get caught up with paying bills and laundry..fun stuff like that today. It's a rainy one here today but it's 50* so our snow is melting which is a good thing.

I have heard of the open MRI's and those that you sit in but I don't think they have anything like that around here. I haven't looked into it to be honest with you. I might be able to handle one that you sit in...maybe. If it comes up that I will need one I'll see if maybe there are better options in Philly than we have down here. Maybe they have more options at Jefferson where my Rheumy is located.

I've had a rash on my face that looks like a butterfly and it's been there for years. But, I'm told it's Rosecia or however it's spelled. My Rheumy took notice of it, and my hair loss and all the other lupis-ish things. I used to get gum boils a lot when I was a kid which is also common to lupus but I don't get them anymore...thankfully.

When did you start going to the Cape? The first time for me was in 1982 although I heard the song when I was about 17...around 1968 I guess and fell in love with it sight unseen. I knew one day I had to go there. I moved there the first time in 1984 and left in '87 after a death in my family here. I thought I should be here but I guess I was wrong. Returned there in '96 and then after medical problems with my mom (cancer and both hips replaced, etc) I thought maybe I'd better come back even if just for a while. That's where I am now. My mom is ok by the way. You mentioned Pleasant Bay...my GP was in that area and so was the Vet I used for my kitties. I lived in S Dennis. When I return this time I'll probably be living in Wareham but it won't be any time real soon. I was just thinking back to when I first started going to the Cape and the ride up 95...they had toll booths back then and the trip took longer. CT traffic on 95 doesn't need anything to slow it down and the toll booths sure slowed it down. They could use a few more lanes actually. The last time I went through there was in November and I plan to go back in February. I am hoping to attend a one day workshop in Providence and I'll squeeze in a few days on the Cape while I'm up there. I prefer it in the winter..less traffic. I understand people on vacation there and wanting to see so much but not everyone there is on vacation. When you're trying to get to work or make appintments on time it's next to impossible in the summer.

Yep, I'm on disability and have Medicare and an AARP Supplement that I'm so glad I opted for. It's expensive but it covers a lot. I have a different Rx plan though and that's where the donut hole thing comes in. I only have 3 scripts now and they're inexpensive to start with. If/when I get into more expensive medications...I don't know what will happen then. But...we'll cross that bridge when we come to it.

Gotta run for now. I hope you're having a really great day and feeling well.
Take good care,
Sharon

 
Old 01-02-2011, 02:41 PM   #12
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Re: Seronegative Arthritis

Believe it or not, the first memory I have of Cape Cod was going through Hurricane Diane in 1955. I had just turned 4. We were on Tonset Road in Orleans.

I'll cross that bridge on the doughnut hole right now so you know what I'm talking about just in case your doc wants to order anything(would you prefer the Sagamore or the Bourne Bridge?). The biologic meds they prescribe for RA and other disorders can cost a fortune. We're talking about $1500/month for Enbrel shots at a minimum. Orencia is $2500/month. BUT and it's huge BUT, Medicare Part B pays for IV drugs such as Orencia and Remicade so they are picked up at 80% with Part B(considered a "procedure") and then your supplement can pick up more. The biologic drugs that are shots, get put on the Drug policy and you are into the doughnut hole in 1 month. Most of the manufacturers will reduce the cost for those on Medicare but it doesn't matter. You still end up having to pay for the doughnut hole. But if you can convince your doc that for financial reasons you need to go on an IV administered drug, then you get it covered much better.

I'm also on Medicare(broke my neck 4 years ago) and got a Type C supplement policy that covers EVERYTHING. I pay no deductibles or co-pays for any docs or surgery or anything. My monthly infusions are covered completely. They discontinued that policy this year(for all disabled persons) but as long as I keep paying, they can't take it away. So I have the drug benefit and I watch it carefully but I do the IV drug for the RA and hope it continues to work. I can't afford the shots. At least not right how. In a few years, I'll have enough money set aside of I need them but not now.

So if they think you do have RA or another inflammatory disorder and talk about "biologic drugs", tell them about your finances and ask about going to an IV drug so it's covered by Medicare Part B. Orencia is every 4 weeks and Remicade is every 6-8 weeks.

I noticed a real increase in the number of people getting IV's at the docs office and asked the nurse if it had to do with Medicare and she said yes. We aren't stupid!

I know the Wareham area a little bit. My son went to college in the area(Norton) so we made lots of trips to the south shore area. My hubby does a lot of work there too(sales). Maybe if you come up, we can get together..... the Cape Lovers support group.

Stay warm...turning very cold again. Another storm on Friday. Don't you love the winter in the northeast! 50* one day and 10* the next, snow one day then rain then ice....and often all the same storm!

Oh well....glad I've got a generator!

Take care............Jen

 
Old 01-04-2011, 10:03 AM   #13
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Re: Seronegative Arthritis

Quote:
Originally Posted by jennybyc View Post
Believe it or not, the first memory I have of Cape Cod was going through Hurricane Diane in 1955. I had just turned 4. We were on Tonset Road in Orleans.

I'll cross that bridge on the doughnut hole right now so you know what I'm talking about just in case your doc wants to order anything(would you prefer the Sagamore or the Bourne Bridge?). The biologic meds they prescribe for RA and other disorders can cost a fortune. We're talking about $1500/month for Enbrel shots at a minimum. Orencia is $2500/month. BUT and it's huge BUT, Medicare Part B pays for IV drugs such as Orencia and Remicade so they are picked up at 80% with Part B(considered a "procedure") and then your supplement can pick up more. The biologic drugs that are shots, get put on the Drug policy and you are into the doughnut hole in 1 month. Most of the manufacturers will reduce the cost for those on Medicare but it doesn't matter. You still end up having to pay for the doughnut hole. But if you can convince your doc that for financial reasons you need to go on an IV administered drug, then you get it covered much better.

I'm also on Medicare(broke my neck 4 years ago) and got a Type C supplement policy that covers EVERYTHING. I pay no deductibles or co-pays for any docs or surgery or anything. My monthly infusions are covered completely. They discontinued that policy this year(for all disabled persons) but as long as I keep paying, they can't take it away. So I have the drug benefit and I watch it carefully but I do the IV drug for the RA and hope it continues to work. I can't afford the shots. At least not right how. In a few years, I'll have enough money set aside of I need them but not now.

So if they think you do have RA or another inflammatory disorder and talk about "biologic drugs", tell them about your finances and ask about going to an IV drug so it's covered by Medicare Part B. Orencia is every 4 weeks and Remicade is every 6-8 weeks.

I noticed a real increase in the number of people getting IV's at the docs office and asked the nurse if it had to do with Medicare and she said yes. We aren't stupid!

I know the Wareham area a little bit. My son went to college in the area(Norton) so we made lots of trips to the south shore area. My hubby does a lot of work there too(sales). Maybe if you come up, we can get together..... the Cape Lovers support group.

Stay warm...turning very cold again. Another storm on Friday. Don't you love the winter in the northeast! 50* one day and 10* the next, snow one day then rain then ice....and often all the same storm!

Oh well....glad I've got a generator!

Take care............Jen
Hi Jenny,

How are you doing today? I hope all is well on your end and you're having a good day. I have heard we could be in for yet another snow storm coming up this weekend. It appears that it will be more a New England storm than for us down here. They said that last time too though and look what happened.

I went to meet the GI yesterday. I have to call in a week to schedule the colonoscopy and I probably can't get it until March. UGH!! It will take forever to get back to the Rheumy at the rate things are going here. I'm going to have a test to check me for Fructose/Lactose allergies which could be adding to my bowel problems. It's a hycrogen breath test...did you ever hear of this? I have to drink something when I get there and then I have to break into some machine or something ever half hour for 2 hours and then they'll decide. ?? This could be good information if they come to some determination. I was there for over 3 hours and had a good examination but I don't know anymore than I knew when I got there.

I'm thinking about sending a fax to my Rheumy and tell him that I won't get my colonoscopy until March and does he want to wait that long to see me again. I was supposed to be there today.

I'm so sorry to hear about your breaking your neck. That had to have been horrible!!! Are you ok now? If you don't mind me asking...how did that happen? You were very lucky though.

I have a pretty good supplement thru AARP and I haven't had to pay any co pays or anything like that. Aetna is my Rx provider so we'll see what happens with that when they start talking about drugs. I'll see how it plays out when the time comes...whenever that is.

It would be great to get together when I go up there sometime. I'm not sure exactly when I'll be going this time. I don't know if it will be before or after the workshop we're attending in Providence on the 5th of February. I just hope the weather cooperates.

I have to run for this time. Be well Jenny. We'll talk soon ok?
Take good care,
Sharon

 
Old 01-04-2011, 05:30 PM   #14
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Re: Seronegative Arthritis

Sharon........I can guarantee that the storm on Friday will be bad...it's my daughter's birthday and when we get storms on her birthday they are always bad. Had one when she was born(ice) and many birthday celebrations interrupted by them. Can't believe I'll be the mom of a 35 year old.

I get my IV med tomorrow and so I'll be feeling much better in a couple of days. It takes time to work and then you feel really good for a couple of weeks then you can feel it going out of your system and by week 4, I'm craving it. I've become an Orencia junkie.

I hope you can get the colonoscopy done sooner than March or at least see the rheumy before that. My hubby is lactose intolerant but didn't have the test. We knew by how horrible he felt with milk products and how much it changed when he went lactose free. but I have heard of that test. Many with RA are gluten sensitive. I'm starting to wonder about my own system. I feel so much better when I stay away from both wheat and milk except for yogurt. Love my yogurt! Mind you I also have many food allergies so I never know if it's allergy or intolerance. Just recently became allergic to black grapes(allergic to multiple blue colored foods) and sweet potatoes.

The broken neck is a long story but I'll keep it short. I had severe OA in my neck along with 3 herniated disks, all compressing my spinal cord and spinal nerves. I was going numb from the neck down. I went to Boston for surgery and elected to try a new surgery that didn't use fusion but instead, re-built the bones in the back of the neck to make more space. I was able to go back to work after only 2 1/2 weeks but my boss violated every rule my doc set out when I came back and I left after 2 weeks, in pain, and decided to stay out the 3 months that I wanted to be off. But then my gallbladder got bad very suddenly and I had to have that out only 6 weeks after the neck surgery. Between those 2 things, someone hurt my neck and I don't know which did it but at 12 weeks post-op, the ligaments in my neck let go. I dislocated 5 vertebrae and broke 3 of the 4 bone grafts that had been put in my neck. One of those grafts fell into the spinal canal and actually penetrated my spinal cord and hit the C6 nerve causing paralysis on my left side. So I was back in surgery and fused from C3 to T1. Almost didn't survive the surgery but I am here and my left side is about 90% back. Weak but working. Took about 3 years to recover.

I don't blame the doc or the new surgery...I felt great after surgery. I blame myself for allowing my boss to intimidate me so and make me do things I knew I shouldn't. And I blame the anesthesiologist for the gall bladder surgery as she was specifically told to not over extend my neck and did. The pain was back right after that surgery. But since the ligaments didn't go for another 6 weeks, I can't pin it on anyone. But my boss said I could never come back to work for the company the way I was so I applied for and got SSDI. Would never want to work for him again anyhow.

Anyhow, I'm very tired tonight....need my RA med. And that makes me very tired too. So I'll say good night for now and see if I have the energy to post tomorrow. If not, take care and watch out for the storm!

gentle hugs.............Jenny

 
Old 01-06-2011, 10:24 AM   #15
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Re: Seronegative Arthritis

Quote:
Originally Posted by jennybyc View Post
Sharon........I can guarantee that the storm on Friday will be bad...it's my daughter's birthday and when we get storms on her birthday they are always bad. Had one when she was born(ice) and many birthday celebrations interrupted by them. Can't believe I'll be the mom of a 35 year old.

I get my IV med tomorrow and so I'll be feeling much better in a couple of days. It takes time to work and then you feel really good for a couple of weeks then you can feel it going out of your system and by week 4, I'm craving it. I've become an Orencia junkie.

I hope you can get the colonoscopy done sooner than March or at least see the rheumy before that. My hubby is lactose intolerant but didn't have the test. We knew by how horrible he felt with milk products and how much it changed when he went lactose free. but I have heard of that test. Many with RA are gluten sensitive. I'm starting to wonder about my own system. I feel so much better when I stay away from both wheat and milk except for yogurt. Love my yogurt! Mind you I also have many food allergies so I never know if it's allergy or intolerance. Just recently became allergic to black grapes(allergic to multiple blue colored foods) and sweet potatoes.

The broken neck is a long story but I'll keep it short. I had severe OA in my neck along with 3 herniated disks, all compressing my spinal cord and spinal nerves. I was going numb from the neck down. I went to Boston for surgery and elected to try a new surgery that didn't use fusion but instead, re-built the bones in the back of the neck to make more space. I was able to go back to work after only 2 1/2 weeks but my boss violated every rule my doc set out when I came back and I left after 2 weeks, in pain, and decided to stay out the 3 months that I wanted to be off. But then my gallbladder got bad very suddenly and I had to have that out only 6 weeks after the neck surgery. Between those 2 things, someone hurt my neck and I don't know which did it but at 12 weeks post-op, the ligaments in my neck let go. I dislocated 5 vertebrae and broke 3 of the 4 bone grafts that had been put in my neck. One of those grafts fell into the spinal canal and actually penetrated my spinal cord and hit the C6 nerve causing paralysis on my left side. So I was back in surgery and fused from C3 to T1. Almost didn't survive the surgery but I am here and my left side is about 90% back. Weak but working. Took about 3 years to recover.

I don't blame the doc or the new surgery...I felt great after surgery. I blame myself for allowing my boss to intimidate me so and make me do things I knew I shouldn't. And I blame the anesthesiologist for the gall bladder surgery as she was specifically told to not over extend my neck and did. The pain was back right after that surgery. But since the ligaments didn't go for another 6 weeks, I can't pin it on anyone. But my boss said I could never come back to work for the company the way I was so I applied for and got SSDI. Would never want to work for him again anyhow.

Anyhow, I'm very tired tonight....need my RA med. And that makes me very tired too. So I'll say good night for now and see if I have the energy to post tomorrow. If not, take care and watch out for the storm!

gentle hugs.............Jenny
Hi Jenny,

How are you doing today? Did you go for your infusion yet? I hope you're feeling better now.

Thank you for telling me about your neck problems. You've really gone through so horrible experiences!! How is your neck now? I hope all is well. I can't begin to imagine what you went through.

Employers can be so hateful!! I had a problem many years ago over a health related situation at one of the casinos in Atlantic City. Nothing as serious as what happened to you though. In my case I dislocated my knee and had to be out a few months from work. They knew exactly when I would be returning to work and hired someone to take my place two days before I returned leaving me without a job. I was still having physical therapy and needed my insurance so I had to take a job that paid less just to keep benefits. Those places get away with murder! They've done worse to people in way worse shape that I was in. I know of someone who was going thru chemo and trying to work around a schedule where she could work then drive about 50 miles to where she went for chemo and then take herself home afterwards. This went on for months and they complained to her daily about her work and that they didn't know how long they could keep her because she needed to be there full time and her work was failing and it was just one thing after the other. I think in the end they fired her. I guess they didn't think having cancer and chemo was stressful enough...they wanted to add to it.

No, I don't think I'll be able to get the colonoscopy before March so I wrote a note to bring my Rheumy up to date on my information and asked if I should see him before that or wait. I faxed the note and I'm waiting for a response. That was 2 days ago. ?? I didn't expect he would drop everything and call me but he could have had someone go through my file and make a decision. It just gets frustrating.

I have an appointment for the Lactose test on the 13th and the Fructose test on the 20th...I'm hoping there are no big storms. I don't want to miss them or have to reschedule. I like dairy and I hope I don't have to give it up but to put an end to my "running" problem and the horrible cramps...I'd gladly give it up to feel better.

Look out for the snow tomorrow. Are you in an area that is expecting a lot? We are expecting an inch of slush...that's it. It's enough!!

Gotta run. Take good care Jenny and I hope you're doing well today.
sharon

 
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