Rheumatoid Arthritis questions

Ok, so been dealing with all sort of issues for the past 17yrs. Over that time I've been checked for Lupus, Lyme Disease, RA blah blah blah and for the most part all blood work has always come back normal/neg. And from having to switch Drs. etc. I always had to start over... Very nerve racking... Anyhow. Earlier this year my symptoms became unbearable and we started up the blood work once again. I don't have my results in front of me to give you exact tests etc. but once again Lupus, RA and Lyme were all neg. but my inflammation lvl was fairly high. He said it should be 20 or lower (not sure which test it was) and mine was 55. every joint/muscle in my body hurts, uncontrollably tired among many other symptoms. He still thinks it's RA even though my RA comes back neg. I just had new blood work done and go back on the 26th. to see what the results are... he has put me on 800mg of ibuprofen which has done nothing, Vicodin to help the pain which has done nothing. The only thing that seems to help is steroids but he's only given me enough for a week :( So, is it possible to have a neg. RA test yet still have RA? Plus I have always been under the understanding that RA is a small joint issue. I don't really have issues with small  joints although one joint in my fingers do hurt (same joint in both hands), it's mostly my hips, back, shoulders and ankles and knees but not very often with the knees and nothing compared to the others. I've also been getting swollen glands in my neck but my throat feels fine and I can chew and talk but can't turn my head without it hurting.

[carolanivey]

[[is it possible to have a neg. RA test yet still have RA?]]  Yes, certainly - a good rheumatologist will know this and treat you for it anyway.

[[I have always been under the understanding that RA is a small joint issue.]] No, it can affect any joint in the body, anywhere there is cartilage, including the ribs, pelvis, spine, jaw, small bones of the ear, etc. Also, inflammation can affect your eyes and other tissues as well. RA certainly is NOT limited to certain joints.

Because your immune system is going haywire, it's common to have swollen lymph nodes as you describe - along with severe fatigue, flu-like symptoms, skin issues, dry mouth/eyes.

Steroids help in the short term, but it is best to stay off these if at all possible. The long-term affects are not worth it, IMO.

There are all kinds of new medications out there now, so I'm confused as to why these haven't been tried. Check into the Arthritis Foundation's web site for up to date information on treatments. Good luck!

[blossom88]

Well, I assume the reason my Dr hasn't put me on anything else yet is because he wanted another round of blood work which I just had done and go back on the 26th or he is leaving it up to the Rheumatologist which would be fine but still no appt. from them. Not really sure, but I told my husband with all this pain ect. he has to do something when I go back on the 26th. I haven't been able to do anything in months. And sure can't keep living like this either :(

Thanks for all this info. Hopefully something happens soon, only 3 more days until my next Dr appt :)

[blossom88]

Ok, Drs appt today and let the games keep going!!!! My inflammation lvl went down to 14 from 55 which yes is good but since my RA is neg. and since my inflammation is down he is saying he don't think it's RA now lol Well, at this point I don't care what it is but I know this... I don't care what my lvls say, I sure don't feel any better at all!

This is just so damned annoying and frustrating.... Sooo tired of feeling like this with no help at all :(

[carolanivey]

I'm sorry this is happening. :(  All I can say is, don't be afraid to be the squeaky wheel. You have some inflammation, it's causing you pain, it needs to be treated, end of story. Even if it means treating only the symptoms and not the root cause, something needs to be done. Doctors work for you, not you for them, so keep after them to find something that will bring down your pain level, even if it's "outside the box."

Some of my RA friends have found significant relief by eliminating certain foods from their diets. Some do well on a gluten-free diet; others find their symptoms are worse with dairy, or certain vegetables/fruits. It may take a lot of trial and error, and always inform your doctors as to what you're doing. Keep a food/symptom diary to track patterns. Good luck!

[blossom88]

He's been for the most part trying to treat the symptoms until I get to the Rheumotologist, but nothing really helps that he's tried. He did tell me to try this one med. he said if it doesn't work or feel like it's working in the next two weeks to come back in.. Just stinks, cause even two weeks is a long time when your in pain or feel like this. I just got a letter from the Rheumotologist I'm suppose to go see and they can't get me in until Feb. Ughhh I sooo can not go another 4 months like this :(

But, looks like I have no option :( Thanks again!

[carolanivey]

[[Just stinks, cause even two weeks is a long time when your in pain or feel like this]]

Welcome to the world of RA treatment. :(  It often takes weeks or months for a medication to "kick in". Sometimes you get lucky it and starts working within a week or two, but more often it's a waiting game to see if your immune system is going to respond. Chances are something like methotrexate will make a difference, and if it doesn't go far enough another med like Enbrel or Humira can be added to the mtx. This combo works for a lot of people. The down side is that oral mtx can cause stomach and fatigue issues; injectible mtx seems to cause less problems - but you have to self inject, as well as the Enbrel and Humira. It's not hard to get used to self-injecting, it's just getting over that first "hump". :)

Read the package inserts of these meds, but don't take what you learn too much to heart. Mtx, Enbrela and Humira have been around for years (esp. the mtx - like decades) and their effectiveness and side effects are well known. Regular bloodwork is required and if anything look iffy, you can stop the meds right away with no harm done.

Once you hit on that combo, you'll know it and the wait will have been worth it.

Again, be the squeaky wheel. Call the rheumie's office AT LEAST a couple times a week to see if there's been a cancellation you can jump on. (politely) Eventually they'll get to know your name and think of you first when an opening occurs. Get your current list of meds, symptoms and questions together and ready to go out the door at a moment's notice just in case you do get in early. [[hug]]  Hang in there!