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Old 05-01-2012, 12:37 PM   #1
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Unhappy New with questions

Hello, I am new to the board. I am a 40 year old, married Mom of 6. I was diagnosed with Rheumatoid Arthritis is 2010...I have an elevated sed rate, elevated crp and anti ccp was positive. I am also chronically anemic. I was al
also diagnosed with degenerative disc disease of the cervical spine with two bulging discs at c5-c6 and c6-c7. A rent MRI also noted facet joint inflammation and bone spurs along with a hemangioma at T2. I have osteoarthritis in one of my big toes and right knee. I also have sacroiliac joint disease; also detected on a recent MRI. I am currently undergoing epidural steroid spinal injections for my neck. I take Methotrexate, Folic Acid and Skelaxin for the RA.

My question is in regard to RA flares. I recently began a walking exercise regimine, walking 1 mile at a brisk pace (3 mph) on a daily basis. Well the first day I felt fine after walking and was only mildly sore afterward. The second day while walking I noticed an ache in my right hip joint. I kept walking and proceeded to walk the third day with noticeable hip pain and I cut the walk short. Well on the evening of the third day I was very sore with joint pain in my right hip and right knee and a crashing fatigue came over me. The next morning I could barely walk as my hip and knee were extremely painful. I also felt like I had the flu and could not function due to overwhelming fatigue. My joints are just now, several days later feeling somewhat better but the fatigue is still there. Does this sound like an RA flare and can exercise induce a flareup like this?

Thanks!

 
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Old 05-02-2012, 08:55 AM   #2
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Re: New with questions

That's an RA flare...the fatigue is the giveaway.

The trick with RA is to start an exercise program VERY slowly...do a quarter mile first and then a half and very slowly work up so that your body doesn't know. RA hates stress of any kind. You walk a mile....which seems perfectly reasonable...and it places some stress on the joints and energy levels and that is enough to trigger it. Emotional stress can do it too.

Many rheumies will allow you to increase your MTX when you feel a flare starting or will prescribe something on top of your regular meds to stop a flare. You could call and ask. Their aim is to stop flares. I know each time I get a flare, it also moves to a new joint. Just had my 3rd spine surgery and had to be off all my meds for 6 months(was supposed to be 3 months but surgery got delayed repeatedly)and the stress of surgery, despite high dose steroids during surgery, sent the Ra into my hips and jaw joints.

But like me, you also have OA...that is what is affecting your spine. Not unusual to have both. We have really good boards here for spine issues...Back Problems for the lumbar spine and Spinal Cord Disorders for the neck problems. Thoracic can go under either. My back is filled with OA as are my SI joints and most of my large joints like knees(already replaced) and hips and shoulders and then RA came along 7 years ago to affect the rest of them...although 2 years ago I ended up in the hospital unable to walk and it turned out I had developed RA in both of my replaced knees.

I am in an exercise program and I work out in a warm pool...a therapy pool actually. It's 92* so my muscles/joints don't hurt after. But I worked with a PT and learned what to do and how to go slow and slowly build it up. I'll be back in PT for my back starting next week and can't wait. It feels good to move again. This time, they will take me beyond the pool to the exercise equipment and teach me how to use equipment so that it doesn't flare my RA.

You might ask about PT and finding a PT who knows RA(my doc's office has it's own PT facility right there). They can teach you how to get into a good exercise program that won't flare you(if they know what they are doing...some are clueless....you have to ask who knows RA).

Any questions, I'm here and at the Spinal Cord Disorders board for neck questions.

hugs........Jenny

 
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Old 05-02-2012, 09:44 AM   #3
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Re: New with questions

Thanks Jenny! I was able to see my Internist this morning. I got a steroid injection in my knee and basal thumb joint. She thinks my Methotrexate does need to be increased and maybe a biologic added like enbrel (sp?) or Humira. A hand xray shows bone changes which were not there last year. The doc gave me the xrays to take to my rheumatologist later this month. I will check out the neck board and lumbar board as well. One more question...In my research on RA it seems that the joint inflammation and pain is typically symmetrical but I find that my joints often flare on one side or the other. What's your take on that? Again, thanks for the advice!

 
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Old 05-02-2012, 09:57 AM   #4
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Re: New with questions

It's supposed to be symmetrical but I have also found it may not be. Sometimes yes but other times no....and I think a lot of people are the same. I've had flares that are all on the same side too.

RA is changing. As they develop these biologic meds, they are finding that some meds can make one person much worse while another works beautifully. They know that Ra seems to come from a chemical in body that won't shut off.....usually a cytokine that is activated to fight off an illness that won't shut down after. In most cases of RA, that cytokine is Tumor Necrosis Factor and so they developed Enbrel and other drugs which are Tumor Necrosis Factor inhibitors. But it made me very sick and caused me to develop benign tumors. I now use a T-cell inhibitor as T-cells are the triggers for all cytokines and even some forms of RA itself. Other biologics stop cytokines like Interleukin 1 or 2 or 6. A new one is about to hit the market that inhibits the Jax enzyme. At least 6-7 more are in the final testing phases.

So in the future, when they can finally find a way to figure out which chemical is causing YOUR Ra, they will be able to tailor the treatment to you and your Ra may be called Ra,TNF type or RA, t-cell type or Ra Jax type.

I also use MTX in injected form and take Orencia. After 3 years on it, you wouldn't know I had RA. I've just been off of it for 6 months and boy...what a difference....I can barely move. I'm 5 weeks post-op from spine surgery and re-started my Orencia last week and I can't wait for that sweet relief again. I hope you find the same thing!

Jenny

 
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Old 05-02-2012, 01:22 PM   #5
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Re: New with questions

What are the symptoms of a flare? This confuses me. I'm almost always very fatigued. Supposedly I'm in remission and the physical symptoms I had at diagnosis are gone or mild when they occur. I have chronic anemia now, neutropenia and other bad labs.
I also have CVID and early stages of lupus. I'm not sure how to recognize a flare as I feel bad every day...any answers/thoughts for me?
How is everybody feeling lately?

 
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Old 05-02-2012, 02:05 PM   #6
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Re: New with questions

Lupus flares are different from Ra flares so why don't you ask the members of the lupus board.

Basically a flare is a sudden surge in symptoms not brought on by anything in particular. Even if you feel bad all the time, sometimes you may feel decidedly more ill and that is when you are flaring. Your blood work will show it as well.

Ask your doc what makes a flare for you and when you should call and report it to get additional meds.

hugs.........Jenny

 
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Old 05-02-2012, 04:43 PM   #7
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Re: New with questions

Thanks, Jenny. I am in the early stages of lupus, plus the RA. There are definitely days when I feel a lot worse than other days. My rheumy increased my prednisone last visit because I'm neutropenic and anemic. That helps. I think I get what a flare is. I thought it was more like a full relapse, going out of remission.
Hope you are feeling ok. Hugs!
--Cate (NellieNunu)

 
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Old 05-02-2012, 05:41 PM   #8
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Re: New with questions

The problem with having both Ra and lupus is trying to figure out which is which when flaring. We have someone else here with both and she is having a terrible time trying to find a med that works. Look for posts by Moldova and read what she has dealt with.

The meds for Ra and the meds for lupus are often at cross purposes with each other....meaning they can cancel each other out so you need a very skilled rheumy.

We don't usually use the word remission with Ra as it rarely happens but I know it is used with lupus. Both disorders function very differently and have very different causes. I just came off of 3 years on a biologic drug for Ra and wondered if I had gone into "remission"....if I'd stay RA free without the drugs. Nope. For some, both with Ra and lupus, they can go into remission but the latest thinking on RA is that it really doesn't despite the patient feeling well....the damage continues even when they feel okay. You feel okay and your blood work looks okay but then they suddenly find that it has spread to other organs and you never knew it was happening. I know for me, I'll be on a biologic drug for life as every time I'm off, the damage spreads very fast and aggressively and is doing so even when I'm on the maximum dose.

But when you have both, you need to talk to your rheumy about what he/she considers an Ra flare or a lupus flare so you know which is which and what to do about it. I know I can increase my meds immediately when I sense something going down and they will call me if they find a blood factor increasing even if I feel fine.

Remissions? Don't know if they exist....seems like they don't. But a flare is any increase from your norm, even if your norm is pretty miserable. But you need to learn which is which.

I'm sorry you are battling both.

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

 
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Old 05-02-2012, 06:06 PM   #9
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Re: New with questions

Thanks, interesting info. So far my current meds are working. Don't know what will happen with me when they don't anymore. I have CVID so my immune system is shot; wonder if I will be put on a biologic anyway. My rheumy made it very clear that even though I'm "symptom free", RA will never go away.

What biologic are you on and what's it like? Is it Orencia? Know anything about benlysta?
I so appreciate "talking" with you, Jenny.
--Cate

 
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Old 05-03-2012, 09:33 AM   #10
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Re: New with questions

Yes. I'm on a combination of Orencia and MTX and it is working well. Enbrel gave me benign tumors and I had an anaphylactoid reaction to Humira.

I know my doc's office uses Benlysta but since I don't have lupus symptoms, it's not something they will use with me.

The biggest problem with biologics is developing antibodies to the drug...that makes it useless. So far, so good. And I've had almost no side effects either. Amazing for me.

Jenny

 
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Old 05-03-2012, 12:55 PM   #11
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Re: New with questions

Hi and welcome to board!
I have RA, Lupus, MS and spinal issues with spinal fusions, etc.
First of all, with both issues, you have any physical activities very slowly. If you do today for 10 min tomorrow 15 and so on. We all tend to rush things, but when it comes to affected joints and body in general - don't rush. Because exercise very important for all of us, we must do them every day and if you over do it today, tomorrow you cant move and what is this do for your health overall?
Yoga, stretches very good for everyone who cant handle hard excising.
For me personally flair is when my knees, wrists, ankles, etc. get very painful, swollen, feels like every cell in a body is very painful, fever is always presents (low grade), sore throat, pain in every small and big joint and soft tissue; feels like a bug sits in it and pulls every cell of my body apart, no end to pain and even my strong pain meds don't work. And feeling very exhausted all the time, dizzy just overall feeling sick. Often feels like I have a flu.
I can always say what kind condition flairs up, Lupus has it's own symptoms. They say that RA doesn't affect our lumbar area of the spine, but due to inflammation my spinal issues always get worse.

Wishing you the best
Moldova

 
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Old 05-03-2012, 02:17 PM   #12
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Re: New with questions

Thanks, Moldova, for your note. You give great advice and knowledge; I've been reading your postings and they're very helpful.
I do whatever movement and exercise I can tolerate. For me the pool is the best and I'm grateful for that.
I'm starting to get that butterfly rash. It comes and goes. I'm going to take a photo of it for my rheumy in case it's not evident next time I see him.
Be well. --Cate

 
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Old 05-03-2012, 02:32 PM   #13
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Re: New with questions

I agree with you 100% about pool - the best ever. I was lucky enough after my knee surgeries and spinal surgeries to have my PT at the place with warm water walking pool. But... they closed after 35 years in business.
This was the best excising time for me, they would work with us while we are in a water. I was very easy to walk in that warm water while I couldn't' walk at all on the ground.

Why do you need your pictures sweet heart? While RA is very hard to diagnose, luckily Lupus is a very easily diagnosed disease. Blood work show it all even when then rush is in remission. I wish RA would be such an easy diagnosed condition. Did you get your little red "stars" on the palm of your hands too? Did you have your lungs checked? Not necessarily to have symptoms, usually damage to them found by accident or when they do testing for something else.

thank you for the kind words, nice to hear.
Best wishes, Moldova

 
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Old 05-03-2012, 03:06 PM   #14
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Re: New with questions

Hi!
In my case, the RA was quickly diagnosed, but for some reason my rheumy is reluctant to give me lupus dx.yet. He still believes these are RA related, even though labs and symptoms strongly suggest lupus. The butterfly is new, as are my decreasing oxygen saturation and shortness of breath at rest. No stars. Those sxs, besides the butterfly, could also be from my anemia. The lung stuff scares me because of interstitial lung disease, which is associated with lupus. I know I shouldn't be so pessimistic

Anyway, I'm pretty much on the lupus meds for my RA.
God, sweetie, I can't believe all you've been through so far, with the surgeries and all. And MS too. My heart goes out to you.
One thing I love about the forum is all the love and how I can distract myself from how sick I feel, at least for a little while. I'm sure that on really bad days I won't feel like posting, but enjoy it otherwise, and will take advantage of the days I'm not so bad.
It's nice chatting with you, Moldova.
--Cate

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Old 05-03-2012, 03:32 PM   #15
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Re: New with questions

Dear Cate, I am glad to meet you too.

I have been through so much, so many major surgeries, lost of my wonderful job due to disabilities which killed me the most, so I dont get surprised anymore. Just on Monday when my PM told me I need another spinal surgery and C-level I wasn't' surprised, I just "take my lemons and make lemonade"... I cant change anything, I pray every day just for one thing: less pain. I got Arachnoditis as a complication after spinal fusion and this spreading severe pain all over my body on top of RA, Lupus and MS give me - most of the day is unbearable. Unfortunately even strong pain medication cant help much due to tolerance and it doesn't do miracles anyway.
If your Dr has a doubt about your Lupus, than you right about taking pictures. I wonder why he is in doubt though. My RA Dr told me long time ago, that Lupus is very easy to diagnose, its clear while with RA they get a lot of false positive/negative. Many people may have RA and have normal blood work and vise verse, this is why so hard to diagnose it.
Would you believe that I was diangosed with fluid on a lungs and enlraged nodules, they sent me to see Pulmonogist who was watching me for cancer for 3 years. I had to have CT scan every 6 month. Only after I saw my wonderful RA DR she said this called "RA lungs", this is due to my auto-immune condition. Where were these doctors before? Didn't they know this? this is a big problem in nowadays medicine: every doctor so close minded just about their specialty, not even thinking to maybe a person has something out of that box?

I had reconstructive elbows surgery,knees surgery, shoulder surgery and nothing heals or getting better. I don't mention spinal surgeries only b/c lumbar areas of the spine doesn't get affected by RA.
You would think that at least one ortho surgeon would ask himself why do i have so much pain and so many damages? I was financial professional, not unloaded trucks worker, so why one has ruptures in
tendons and ligament, tears in muscles and every big and small joint involved, why her/his joints so swollen? Nope, nobody even wanted to think, they saw $$$ and nothing else mattered. I am talking about good doctors, very nice ones too!

This is why, I am for so many years on this board trying to help people, trying to share my own experience. I feel for them, I know what they are going through and feel responsible to be there for people, same way they are there for me...

Hugs and all the best to you dear
Moldova

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