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Old 03-10-2009, 05:44 AM   #1
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Erosive inflammatory arthritis

I am new to this board. My question is this. Does anyone have Erosive inflammatory arthritis? I had been diagnosed with this over 5 years ago. I never came across anyone else who has it. It's only in the tips of my fingers and thumb joint. My RH factor blood tests always come back negative. What I have is very agressive. Mostly all the time there is inflamation. My drugs have been changed many times and the pain is lessened but not the inflammation. I recently changed Rheumatologists and she agrees with my other Dr. Has anyone ever heard of Erosive inflammatory arthritis?

 
Old 03-11-2009, 06:57 PM   #2
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Re: Erosive inflammatory arthritis

No, you're right...I've never heard of it either. I have Non specific Inflammatory Polyarthritis. It almost sounds like they're making it up as they go along. I have a lot of symtoms that just don't plug in anywhere....probably the same with you. I have Fibro too but it doesn't cause inflammation...not like I have it anyway.
Take care!!


Quote:
Originally Posted by linweid View Post
I am new to this board. My question is this. Does anyone have Erosive inflammatory arthritis? I had been diagnosed with this over 5 years ago. I never came across anyone else who has it. It's only in the tips of my fingers and thumb joint. My RH factor blood tests always come back negative. What I have is very agressive. Mostly all the time there is inflamation. My drugs have been changed many times and the pain is lessened but not the inflammation. I recently changed Rheumatologists and she agrees with my other Dr. Has anyone ever heard of Erosive inflammatory arthritis?

 
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Old 03-12-2009, 05:20 AM   #3
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Re: Erosive inflammatory arthritis

Now that's interesting. Non specific Inflammatory Polyarthritis. You're right. It does sound like they call it whatever they want if they don't know what it is! I keep getting new things such as hypothyroidism, memory loss, bordeline diabetes, mysterious itchy rash that comes and goes. Inflammation from arthritis can attack the thyroid. The Endocrinologist told me that. Do you think your arthritis inflammation attacks anything else?

Thanks for the response

 
Old 03-12-2009, 07:46 AM   #4
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Re: Erosive inflammatory arthritis

Although I am treated as if I have RA and with RA drugs, my official diagnosis is also acute inflammatory poly-arthritis. Acute because we he can't seem to get it to shut down and inflammatory because an MRI showed inflammation but only minor erosions. I build bone fast in one area and then it erodes in another. I had one bone spur I could watch grow on the side of my wrist. In 2 months it grew so much if I moved my wrist, it would cut the skin underneath and I'd bleed. It finally stopped growing and leveled off and stopped bleeding. I felt like I was growing a small volcano under my skin(it was hot and red too). But the only positive blood work I have is an elevated sed rate.

Recently they discovered an aneurysm in the artery leading to my spleen and inflamed blood vessels in my brain and optic nerves...but only the smallest vessels there but yet the splenic artery is a medium size vessel. And yes, some types of arthritis can cause aneurysms.

So I have bits and pieces of several different arthritic diseases but I seem to be responding to Orencia and methotrexate(so far....I've only been on Orencia since November). And I had severe osteoarthritis prior to getting this so there's not a joint in my body that's not affected. Even OA that strikes at a young age may turn out to be auto-immune.

My doc says we are part of a growing group of patients with a mix of symptoms. There is something called Mixed Connective Tissue Disease but that has specific blood factors. But there is also a group of arthritic diseases called "sero-negative" which means no specific blood factors are found and the are just as bad. He told me that 50 years ago there were maybe 10 different auto-immune arthritic diseases. Now there is over 100 and he expects it to rise to over 200 within the next 50 years. We are just ahead of the diagnosticians! That's why he refers to my illness as Jenny's Disease.

Gentle hugs.............Jenny

 
Old 03-13-2009, 08:05 AM   #5
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Re: Erosive inflammatory arthritis

Quote:
Originally Posted by jennybyc View Post
Although I am treated as if I have RA and with RA drugs, my official diagnosis is also acute inflammatory poly-arthritis. Acute because we he can't seem to get it to shut down and inflammatory because an MRI showed inflammation but only minor erosions. I build bone fast in one area and then it erodes in another. I had one bone spur I could watch grow on the side of my wrist. In 2 months it grew so much if I moved my wrist, it would cut the skin underneath and I'd bleed. It finally stopped growing and leveled off and stopped bleeding. I felt like I was growing a small volcano under my skin(it was hot and red too). But the only positive blood work I have is an elevated sed rate.

Recently they discovered an aneurysm in the artery leading to my spleen and inflamed blood vessels in my brain and optic nerves...but only the smallest vessels there but yet the splenic artery is a medium size vessel. And yes, some types of arthritis can cause aneurysms.

So I have bits and pieces of several different arthritic diseases but I seem to be responding to Orencia and methotrexate(so far....I've only been on Orencia since November). And I had severe osteoarthritis prior to getting this so there's not a joint in my body that's not affected. Even OA that strikes at a young age may turn out to be auto-immune.

My doc says we are part of a growing group of patients with a mix of symptoms. There is something called Mixed Connective Tissue Disease but that has specific blood factors. But there is also a group of arthritic diseases called "sero-negative" which means no specific blood factors are found and the are just as bad. He told me that 50 years ago there were maybe 10 different auto-immune arthritic diseases. Now there is over 100 and he expects it to rise to over 200 within the next 50 years. We are just ahead of the diagnosticians! That's why he refers to my illness as Jenny's Disease.

Gentle hugs.............Jenny

Hi Jenny,

I think your doctor is right. We are sero negative and we have a lot of different symptoms for a lot of things but we just don't fit because of the blood work. Mixed connective tissue disease...I had been tested for that and they also said I have Chronic Inflammation Disease. Right now the only thing I'm treated for is Fibro wth Lyrica, Cymbalta, Ativan and a pain killer which I need more than I would like to. I'm also on Pred for the time being and Vitamin D also. How long did it take your doctors to determine your conditions? I've been working with my current team for right around a year now. That's the Internist who is my GP and my Rheumy came into the picture in June last year. I don't know if I'm supposed to ask you this or not but do you have a high SED rate? How about your C Reactive Protein? My SED is never less than 59 and it's usually around 70 but my CRP has been going up the charts with a bullet!! It's 12.81 now!! They just can't figure out why. That's why I'm on Pred now.

Take care,
Sharon

 
Old 03-13-2009, 12:07 PM   #6
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Re: Erosive inflammatory arthritis

I'm lucky because I've got a rheumy who's worth his weight in gold. I've been his patient for 15 years.

Your sed rate is similar to mine but as soon as my CRP started to rise, he put me on Plaquenil(anti-malarial) that is a front line drug for all the inflammatory diseases and so it has stayed down. Then he added methotrexate which brought down the sed rate but the bone destruction kept on going. So then we went to Arava(didn't work and made me worse) then Enbrel(same thing as Arava)then Humira(allergic) and now Orencia which seems to be working. For how long I don't know but I'll take what I can get. I'm allergic to steroids(all those shots did me in).

I think the trick is finding a really good rheumy who you REALLY like. That personal relationship is so important to them caring enough to search and try all sorts of drug combinations until they find what works. and I have great surgeons too who fix what can't be saved.

good luck and stay in touch............Jenny

 
Old 03-14-2009, 05:46 PM   #7
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Re: Erosive inflammatory arthritis

Quote:
Originally Posted by jennybyc View Post
I'm lucky because I've got a rheumy who's worth his weight in gold. I've been his patient for 15 years.

Your sed rate is similar to mine but as soon as my CRP started to rise, he put me on Plaquenil(anti-malarial) that is a front line drug for all the inflammatory diseases and so it has stayed down. Then he added methotrexate which brought down the sed rate but the bone destruction kept on going. So then we went to Arava(didn't work and made me worse) then Enbrel(same thing as Arava)then Humira(allergic) and now Orencia which seems to be working. For how long I don't know but I'll take what I can get. I'm allergic to steroids(all those shots did me in).

I think the trick is finding a really good rheumy who you REALLY like. That personal relationship is so important to them caring enough to search and try all sorts of drug combinations until they find what works. and I have great surgeons too who fix what can't be saved.

good luck and stay in touch............Jenny
Hi Jenny,

Good to hear from you!! I hope you're having a good day.

So far I'm able to tolerate Prednisone pretty well but I know when I begin the step down I'll go back to what it was like before. Actually I'm only on 15 mg daily which doesn't seem like too much really. It hasn't done away with all the inflammation. My rings are still too tight and I still have that pain in my feet and legs. When my step down starts..it only stands to reason it will get worse. Anyway, my GP said if it doesn't work well enough they might try me on Embrel. I'll have to try for charity care in whatever form they give it because I have no insurance at all and I know it costs a fortune. I haven't seen my Rheumy since January so I guess she'll be calling me soon. The two groups are trying to work together as a team but I think they sort of have different ideas to some degree. I have to rely on them both. At this time I'm not in a position to really change doctors and I'm pretty happy with them. I sometimes wonder about the Rheumy but I do think she has my best interest at heart and I do think she's trying to help me. They all are really.

Enjoy the rest of your weekend!
sharon

 
Old 07-29-2009, 04:59 AM   #8
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Re: Erosive inflammatory arthritis

Hello
I too have erosive osteoarthritis just been diagnosed

 
Old 10-16-2009, 05:59 PM   #9
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Re: Erosive inflammatory arthritis

arthritic vessel in my brain with spasms
with electrical shocks with a buzzing sensation and shock at same time, passed out three times, when walking it gets worse started on my right temple and gradually up to now top of head.help!!!

Last edited by MIGUELITO DEANA; 10-16-2009 at 06:03 PM. Reason: spelling

 
Old 10-16-2009, 06:05 PM   #10
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Re: Erosive inflammatory arthritis

sorry my issue is in the brain but may not be related to erosive .

Last edited by MIGUELITO DEANA; 10-16-2009 at 06:06 PM.

 
Old 06-29-2010, 04:59 PM   #11
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Re: Erosive inflammatory arthritis

Quote:
Originally Posted by linweid View Post
I am new to this board. My question is this. Does anyone have Erosive inflammatory arthritis? I had been diagnosed with this over 5 years ago. I never came across anyone else who has it. It's only in the tips of my fingers and thumb joint. My RH factor blood tests always come back negative. What I have is very agressive. Mostly all the time there is inflamation. My drugs have been changed many times and the pain is lessened but not the inflammation. I recently changed Rheumatologists and she agrees with my other Dr. Has anyone ever heard of Erosive inflammatory arthritis?

 
Old 06-29-2010, 05:05 PM   #12
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Re: Erosive inflammatory arthritis

I was diagnosed yesterday w/erosive inflammatory osteoarthritis. My RA factor is negative but my blood does show inflammation. I'm not familiar with this type of arthritis. My GP thought I had RA. The Rheumy diagnosted the EOA. I am talking Plaquenil for the arthritis and another medicine for fibromyalgia. I'm not quite sure what to think. Do you know the prognosis for EOA?

 
Old 06-29-2010, 08:50 PM   #13
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Re: Erosive inflammatory arthritis

Erosive inflammatory arthritis is just another way of saying you have some kind of inflammatory arthritis but we don't know what kind yet.

Regular osteoarthritis is not erosive...it actually builds bone. But disorders like RA erode bone and that is the main difference between the inflammatory arthritides and the non-inflammatory. And the non-inflammatory don't affect internal organs whereas inflammatory can.

I was in that category too until I developed some eye problems that are typical of RA so I was upgraded to sero-negative RA....my blood work is negative too. About 30% of all folks with RA have negative blood work. I started with Plaquenil and then added methotrexate and now I'm on Orencia and methotrexate and doing okay.

It's a wait and watch disease. Sooner or later they figure out which way the disease is going and so can adjust treatment accordingly.

Hope you find some relief soon.

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

 
Old 06-30-2010, 10:25 AM   #14
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Re: Erosive inflammatory arthritis

Hi Jenny,

I'm wondering I that's my problem too in addition to Fibro? I've always tested negative on my RA tests too but I took have markers for inflammation. My CRP was 12.81 and my SED rate was 69. I have been tested for everything you can imagine from Lupus to RA and I always test negative. I fired my Rheumy and for now I just have my GP. I see her again in September. How did the realize it was RA?? I have osteo and it shows up on x ray...my bone scans and Dexa scan. The symptoms and the inflammation have been a concern for me and my doctor for a while and we know Fibro doesn't come with inflammation...so I guess more testing will be coming in the fall. I'm on Ativan for my stressed out muscles and so they will relax and help me sleep. I take a BP pill and something for pain but that's all I have. Non of the traditional Fibro meds work for me at all. Lyrica was terrible and I kept falling. Cymbalta was bad too. By the way, if you don't mind saying....what is the eye problem you have that comes with RA??

Take care,
Sharon




Quote:
Originally Posted by jennybyc View Post
Erosive inflammatory arthritis is just another way of saying you have some kind of inflammatory arthritis but we don't know what kind yet.

Regular osteoarthritis is not erosive...it actually builds bone. But disorders like RA erode bone and that is the main difference between the inflammatory arthritides and the non-inflammatory. And the non-inflammatory don't affect internal organs whereas inflammatory can.

I was in that category too until I developed some eye problems that are typical of RA so I was upgraded to sero-negative RA....my blood work is negative too. About 30% of all folks with RA have negative blood work. I started with Plaquenil and then added methotrexate and now I'm on Orencia and methotrexate and doing okay.

It's a wait and watch disease. Sooner or later they figure out which way the disease is going and so can adjust treatment accordingly.

Hope you find some relief soon.

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

 
Old 06-30-2010, 11:48 AM   #15
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Re: Erosive inflammatory arthritis

Hi Sharon....you sound like me for many years. All the pain but none of the results to guide you to treatment.

What finally tripped my doc over into knowing it was RA was doing an MRI on my wrist. OA is not common in the wrist but in RA, inflammation of the wrist and the hand joints is diagnostic. It affects the hand and finger knuckles but not the joints at the ends of the fingers...that's OA. So if you have both, it makes it really hard to figure out what is what. Even that MRI didn't show erosions but did show changes consistent with RA. Since then, I've developed the eye problems and they are RA so despite still being sero-negative, it's RA until proven otherwise. For the purposes of insurance, my doc still calls it inflammatory poly-arthritis. Now I have some Sjogren's symptoms too. And possibly gout on top of it so I don't know where I'm going!!!!!!!

But here are the 6 criteria for RA....you have to have 4 of the 6:

1-morning stiffness for at least 1 hour plus
2-arthritis in at least 3 or more joints
3-arthritis of the hand/wrist joints
4-symmetric arthritis(same joints on both sides of the body)
5-positive rheumatoid factor
6-x-ray or MRI changes typical of RA

I have 5 of the 6...no positive RA factor.

Why don't you start looking for a new rheumy. I actually went out and "interviewed" several...told them that was what I was doing as I knew that this was going to be a life long problem and if we didn't get along, why even start. I gave the doc the chance to back out as well as me. Found myself a great doc. Younger docs tend to understand this much better than the older guys who still tend to see themselves as gods. All I did was talk to them to see if they were good at listening. Listening....the lost art!

good luck..................Jenny

PS....eye problem is called rheumatoid anterior uveitis. For me it caused wavy vision and rapidly changing eyesight....near sighted one day and the far sighted the next. Weird.

 
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