Told today I do not have RA
Posted , 9 users are following.
I was diagnosed with RA (sero pos) over 10yrs ago.I was put on Methotrexate, tablets then injections, which i could only tolerate for about a year then chose to go on hydroxychloroquine which i stayed on up until approx a year and a half ago. After being told i was doing well and then that i was in remission...i asked if i could stop the hydroxy. I was told should things get too bad i could always go back on it. I had a period of my feet and ankles swelling and some pain in my fingers and elbows but was told by the RA nurse some moths back it was not the RA but osteoarthritis. She said i was still in remission and not to be suprised if when i saw the consultant he discharged me. Today i saw him, the rheumatologist,who ive not seen for over a year and was so suprised when after a brief examination and recap of my notes told me "I didnt have it". He said that my case has been a bit a strange because at the beginning when i was diagnosed sero pos it was presumed that the disease would progress and potentially be quite debillatating as i had such high inflammation but it has fluctuated and changed to sero negative and then gone into remission until finally today I do not have RA. I said i thought once you had RA you always had it as there is no cure for it. Of course its great news but it is quite something to take in having lived with thinking i had RA for over 10 yrs. I say "thinking" because now im wondering if i ever had it. The appt didnt last long and i wished id asked more questions but i will be getting a copy of the letter he will be sending to my GP so maybe things might become a bit clearer. Ive tried looking up on line to find out if anyone has had same happen but all i keep reading is even if you go into remission it can still return...it never completely goes away because there is no cure for RA. In that case...if as ive been told(by the expert) i do not have it now....i can only think i never did have it. Something very briefly was said about no point in doing blood tests to see if i could have had another condition other than RA as ive no inflammation. Approx a year before i was diagnosed with RA i was very ill with salmonella food poisoning. I always remember the person who came out from the public health dept did say it can take years for the immune system to return to normal. This has never been mentioned and i wish i had asked the rheumatologist if prehaps this could have been the cause of the high inflammation and prehaps...as ive since read up today..caused "reactive arthritis" which can go away and not RA.
Any feedback would be much appreciated.
0 likes, 14 replies
diane77471 Debra1954
Posted
Hi, I've never heard of this but am curious what others have to say about it. Diane
deena13493 Debra1954
Posted
i would go to another well rated rheumatologist and get another opinion. I would ask that they do blood tests and xrays. usually they do xrays onthe hand to determine if there is visible deteroriation. the way you were handled was not professional or acceptable. good luck.
Debra1954 deena13493
Posted
I actually have an appt today to have blood tests, urine tested and BP checked. Nothing to do with RA just an anual check up as on BP medication. Will discuss yesterdays appt and will also ask for xrays. Thanks for reply.
Mollyjr Debra1954
Posted
I dont know about anyone else but I think doctors are too quick to put us on meds. I have a high RF which was found in blood test when I complained of a sore groin. The doc wanted to out me on hydrochloroquine right away. After I read about the side effects I said no. I went to an orthopedic surgeon a year later about my groin pain when a friend said I may need a hip replacement which I eventually got and have felt fine ever since. This was three years ago. More recently I went to the doctor about my wrist pain, she wanted to put me on methotrexate even though the xray showed no erosion. Went to my orthopedic dr who said it was tendonitis which I believe because the pain went away and Im fine now I feel great. I have never been fatigued or feverish as they say RA patients get. Am I in denial or crazy or what? Im 64 years old and thinking wouldnt the RA have manifested itself by now?
Debra1954 Mollyjr
Posted
I think you are a good example of how we need to not just accept everything without questioning and to make choices that we feel are right for us. Im so glad i made the decision to come off methotrexate which made me feel so ill and much later to come off hydroxychloroquine. If i hadnt of i wouldnt be in the position im in now..being told i dont have RA. To think i could have stayed on it permanently..taking a drug i didnt need to be on. Thinking about it now its taken over a year of being off the med and having no deterioration(which was expected) for it to be proved i dont have it. Your high RF factor could be due to something else...as has been proved with me. Finding out what exactly is the difficulty. Good luck.
karen612 Debra1954
Posted
Hi Debra,
This is a fascinating question. I was diagnosed about 3 years ago, also sero-neg, responded well to meds (MTX until liver values were bad, now Leflunomide) and I've been in clinical remission for over a year. I've detected a hint of this "was this really RA?" in my Dr and was wondering if it was just paranoia 😃. I feel strongly that I'm far from my normal, but I begin to question myself. Do you still have any RA symtoms?
Debra1954 karen612
Posted
Thats interesting to read because some years ago i questioned did i actually have RA as at the time id never had any visible swelling and was feeling pretty good. I was assured i did and that the hydroxychloroquine was working well and keeping the RA under control. Its only been in the last year or so that ive had any real visible swelling...in my ankles and right foot and slightly in the wrists and fingers. That i was told by the RA nurse was due to osteoarthritis and not the RA. I still get a lot of stiffness in my feet and ankles, some pain but not too severe...elbows and knees are quite bad when i try to kneel/bend down.I do also get very tired but im on quite a high dose of a beta blocker so its difficult to know which causes what. Im almost 64 yrs old too. Just finding it all a bit confusing at the mo but hopefully will get things sorted. Good luck with staying in remission.
EileenH Debra1954
Posted
It is possible that you DID have what is called reactive inflammatory arthritis - it occurs in response to an infections usually and at some point goes into remission once the immune system has got back to normal. Even RA itself can start in the form of palindromic rheumatism although episodes of that often last just hours or days and then disappear entirely until the next time - which may be days, weeks, months or years later. Or never happen again. Wren of RheumaBlog started with symptoms of RA while she was in Germany but it disappeared for years - and then returned as diagnosable RA. Remission can be short or long - you find out how long when it returns.
Autoimmune disorders of all sorts can go into remission - but it is felt the potential to reawaken is always there. It is only when you die they can say it had been "cured" - if you see what I mean.
I suspect the pushing of drugs for banal presentations is more common in the USA - the doctor only makes money out of you if s/he is treating you. And specialists are often very bad at lateral thinking.
deena13493 Debra1954
Posted
I'm sure you realize that a normal blood panel will show nothing really as far as RA. It is a specialized panel and shows alot of ununusal and specific information concerning RA.
Thanks.
Debra1954 deena13493
Posted
Blood tests i had today were for other things as im on medications for high blood pressure etc so just to check all ok there. They did also take extra to check levels of inflammation. Be interesting to see what results are.
alice20946 deena13493
Posted
hi, i was recently called into my dr. who told me i definitely have RA because of a new blood test and it was high lighted that i had it. am waiting for an app. with a R Dr and do not want to take the meds. i only hurt off and on. this is driving me crazy. there was also something on my blood work about speckled. anyone heard of this? i am very confused. tried to join a support group on fb but all they seem to talk about is pain meds and how to get disability.
Debra1954
Posted
Blood test results today all fine including no inflammation.
diane77471 alice20946
Posted
Hi Alice, I would definitely hold off on meds until you see rheumatologist. Maybe yours can be controlled through diet and exercise. You will know if or when you have a flare as it can be very debilitating and painful and then you could consider meds . Just my thoughts on the subject. The drugs do come with side affects. That being said, I am extremely grateful for the RA drugs out there because it helped my symptoms go into remission. Take care.
faye05942 Debra1954
Posted
Hi Debra
I have just recently been told I have RA. First it was PMR now its RA ?? But the interesting thing about reading your blog is that I had salmonella food poisoning about 10 months ago. It took me about 4 months to feel I had recovered, then 2 months later I was supposed to have PMR ???? I am now questioning everything.
Faye