I do not know what to do at this point? I just found out today that I have RA in my spine. In my C spine for sure. I am going to be needing more tests.

I have at CD since around 8 years of age. Back pain started in around 2000. Lots of problems with my lumbar, spinal stinosis, and Spondy. My C spine, also stinosis, and bulging, herneations(sp is awful tonight, sorry all)

Now, today I get a call from the Spine Clinic, and my tests came back RA! I wanted to throw up. I have no idea what this all means. With having both CD and RA, plus my other spine problems. I am 32 years old. I am so scared. I know that might sound dumb being so scared. But this was not expected at all.

I have arthrites in my hips, I have for years. Has or could that been RA? Could my CD, like sort of hid the RA? I just feel lost. They will not do surgery. Said they cannot do it. I got no reason why.
That is why I went in for the first place, to see for surgery for my lumbar. But then, more and more tests where coming up. Never going through this before, thought it was all normal. Never in my life thinking something else came up. And they started looking into that, the RA.

Do Autoimmune Diseases go together like this?

I did do some searching all ready on the internet. Found some really good sites that explain RA. Just need some support right now. To get this out of my thoughts.

Thanks,
Megs

Megs,
I am so sorry. I live with Sjogrens Syndrome, seronegative spondylaropathy, and RA. Yes, unfortunately they do come in multiples sometimes. Are they giving you Remicade for the Crohn's? There are other medications that are used for RA. But I'm not sure if the Remicade also covers RA. It is my understanding that Remicade is the best medication for Crohn's. I am taking methotrexate and Humira for the Spondylaropathy and the RA. Then they give me Plaquenil for the Sjogrens.

RA can be managed. Mine stays in pretty good shape. Wish I could say the same for the Spondy. I wish you luck and a good rheumatologist. Hopefully they will know what to do. If you aren't satisfied look for another one.

Billye

Megs, I'm so sorry you are going through so much all at once. As Billye said, autoimmune diseases do tend to go together. I had Graves' Disease, and now have Myasthenia Gravis. Have you got a good rheumy that you trust? That will go a long way toward relieving the anxieties. I've got a good friend that has RA, hers was brought under control by steroids. I forget just exactly which she was taking. But she's been weaned off them for a year now, and doing good.
Come and post anytime, and keep us updated on your progress and treatment.
Hugs,

Hi Megs
sorry to hear of what you are going thru

my 16yo son has Crohn's (dx this past summer) and, because of his also haveing Tourette Syndrome, the std meds are not suitable for him (corticosteroids are contraindicated in TS) plus he has a history of extreme med sensitivity

anyway, we have him on an alternative treatment plan that has been truly remarkable! My MIL has RA and she too has started to use some of the anti-inflammatory supplements (eg boswellin/curcumin, white willow bark, flaxseed oil, ginger, garlic, capcycin etc) and it is proving beneficial for her as well (and she has tried every RA med available!)

Remicade was suggested for my son at one point, but when we read the potential side effects we decided to pursue this other route and sure are glad we did!

We are also following the dietary recommendations in The Maker's Diet by Jordan Rubin, who also suffered severely with Crohn's at one time in his life


anyway, sure hope you find a treatment plan that can work for you, and if you need any more info on our treatment plan, dont hesitate to ask

In the meantime (((hugs))) cos I understand how you are feeling!

Thank you for your replys. I took Prednison for my CD and Asacol. It has been under control for two years now. And that is a great feeling!

I go in next month to my pain doctors. The spine clinic did say I need to get a rheumatologist. I do not even know where the closest one is where I live. I live in the middle of the boonies, big time, LOL.

I am sorry for all your problems too. I am new to RA world, so any advise would be very good.

Does it just stay in one area of my body? Does it, or can it go into remissoin? Like CD can.

Reading websites on it, is good for basic information. But it cannot replace getting information from people who have it and lived with it for years. Sorry for all the questions. I still cannot believe it all.

I look forward to getting to know you all. And I do thank you so much from the bottom of my heart for all your help.

Love,
Megs.

Megs
I am so glad the CD is under control for you

from what i have learned from my MIL, RA can also be "quiet" and then have flare phases.......for her that is mainly in the hot, humid summers here, tho she also feels worst when it is cold and damp, so the dampness seems to be a trigger in her case

She gets a lot of relief too from Epsom Salts sitz baths (hot tub of water with 2 cups epsom salts dissolved and a 20 minute soak)

I will post if I hear of any good websites and forums specific to RA

Hi there. I usually participate in the RSD territory but have been working outside the box for a little while now, to the point that I flew to Baltimore from LA a couple of weeks ago in hopes of getting a complete pro-inflammatory cytokine workup at Hopkins.

No luck, notwithstanding my neurologist letter of referral and a secondary referral from a rheumatologist at the Mayo Clinic. My file got passed to a very junior neurologist, who would have told me there was no point in coming, but the letter of referral to the allergist/clinical immunologist with whom I made the initial point of contact never made it to her. She came up with the name however of one lab that's testing for high levels of Interluekin 6, a cytokine that's been found in significantly elevated amounts the CSF of CRPS/RSD patients and to be the single most probative indicators of death from cardiac artery disease. (References available upon request.)

It's like I showed up at least a year before they're ready to allow clinical patients access to cytokine testing, that is outside of tightly established research protocols for drugs the would counter Il-6 for people with RA and Crohn's Disease. I was however advised that although my levels of I-6 would almost surely be elevated, where I had a small heart attack a couple of years before, three years after getting RSD, there was no assurance that just because a condition was associated with high levels of IL-6 there was no assurance that it could reverse the malady and secondly, and I had heard this warning earlier, there's a real risk with some of the drugs being associated with non-trivial infections, e.g. meningitis.

I'm not sure what all of this means to me, but I now know there are at least three medications in Phase III trials for the treatment of RA and Crohn's, on account of which one or more of then become generally available within maybe a years or so, assuming they survive scrutiny for side-effects.

So with that, hello.

Mike

Megs,

You might ask to also be tested for Celiac Disease (also known as CD), if you have not been tested. It is yet another autoimmune disease that can be underlying~ and has increased associations with RA.

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)

Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD (AAFP) Check out Table 2.

CNN just had a live segment on Celiac Disease today, and some of what was mentioned includes:

The time it takes to get a diagnosis is now 9 years instead of 11 years (this is after huge awareness campaigns for the last couple of years). The undiagnosed remains at 97%. The prevalence is 1 in 100. Dr. Green also said that CD is often misdiagnosed by GI doctors as IBS, IBD and Crohn's.

Between the RA and Crohn's... you may want to take a look at this possibility if your doctors haven't.

Cara