have ra but my mri show that I do have ra. so needless to say im a bit frustrated. but I decided to get off prednisone and plaquenil after a year of being on both. some days are good and some days im so tired and knees,elbows, feet....anybody else have same things happen to them?
hi everyone, been a while but i'm back. things have b... - NRAS
Yes, you can still have RA that doesn't show up in your blood and it's called seronegative RA. I have it and the treatment is the same so that might be something to ask your doc about
I was fortunate (!) that there was no doubt I had RD from the first blood tests so not been in your situation but I have had three months without my meds when changing Rheumies, it wasn't nice! If there's the slightest notion that you could have the disease you need to think hard about not taking your meds, personally I wouldn't do it. What does the second Rheumy propose med wise? Is it possible that a change would be considered for you, that you don't respond well to the meds/doses you're on? It would be preferable speaking to your Rheumy about this rather than taking the decision yourself of stopping your meds. Of course you would need guidance to taper your pred so you don't risk withdrawal symptoms.
Your tiredness could be down to you being uncontrolled & your pain also of course.
I appreciate it must be frustrating not having a definitive answer but I would be guided by your Rheumy just now, I wouldn't like to think of you getting in the pickle I was in, it's not pleasant.
What worries me about your post is quite simple: if an MRI shows you have RA then presumably you have joint damage. And if that's the case then stopping the drugs that help prevent joint damage will put you at risk of further damage.
The drugs aren't just about making us feel better ..... sometimes they don't. The main point of many of them is to prevent damage and disability.
I have psoriatic arthritis. These days there is nothing whatsoever in my bloods to confirm this and sometimes that's the same with RA.
Obviously there could be more going on, other factors you've not mentioned .... perhaps it's all more complex than it seems. But from the little you have said, this is how I see it from a fellow sufferer's point of view.
I am concerned that most RA suffers on here seem more worried about losing the function of their joints than the serious side effects on major organs of drugs like Prednisolone. I got the type of RA that causes inflammation of the retina and have lost the sight in one eye, due to discontinuing my Prednisolone. I prefer to be alive at 62 years of age, with limited sight and painful joints, than gone early! The right was mine and the choice and I did lots of research before I took the decision. I wish I could have my eye replaced as easily as most joints can be replaced. My husband has RA too, and chose joint replacement, rather than the DMARDS or Prednisolone. He already had lung disease and getting rid of his immune system with these drugs would have shortened his life expectancy. He was just in hospital having his knees replaced, and there were young people in there, with RA, having joint replacements for RA. I asked them, and they seemed to find the joint replacements good, like my husband has. It is difficult to see that RA will continue in a joint resurfaced with metal and plastic.
I do agree about Prednisolone .... ideally it's a stopgap, taking it long-term is far from ideal & actually I think most people here are keen to avoid doing that because they know the risks.
In your original post, which is a lot shorter than your reply here, you said you were 'frustrated'. For all I knew that was because you wanted different and better medication but were unable to access it due to the contradictory diagnoses you've had.
Your views on joint replacement are very controversial. Of course there's a role for joint replacement. But for many, many reasons which I think are pretty obvious most of us seek to avoid that option until it can be avoided no longer. I think most rheumys reading what you said would probably need resuscitating, let alone joint replacement.
My husband had his knee replaced 27/05/15 with immediate relief of his inability to bend the knee and the pain. He was sitting with his knee bent at 90 degrees within 12 hours of the operation and no longer walks round with a leg resembling a broom stick that didn't bend in the middle! He's most likely had RA for years as the knee was fused up. He's never taken a lot of steroids or been thought suitable for DMARD's, all of which work by doing in your immune system. My husband has chronically diseased lungs and wouldn't last long if immunno-suppressed. The DMARD's and steroids made me so ill with my stomach, despite large doses of Ranitadine and Omeprazole, that I didn't have any quality of life. It might not be the same for other people though and everyone can tolerate different things and different levels of them. Both my husband and myself thought the "Rheumys" as you call them, bonkers, as they wouldn't listen when you said the drugs made you so unwell you no longer fond life worthwhile!
So do I understand that you're saying don't take the meds, have joint replacements instead & live longer?
Well it is what I chose after reading extensively about the side effects of the drugs offered which were Choloroquine & Prednisolone in my case and Prednisolone and Salazopyrin in my husband's case. The problem is if you take a lot of immuno-suppressant drugs, you might not be fit enough for joint replacement surgery, especially if you are older sufferers like us. My husband's Orthopaedic Surgeon who replaced his knee two weeks ago, said he would not have considered him for surgery if he was on the drugs, because he has a lung condition as well, and the likelihood of infection is greater if you are immuno-supressed. I did have an operation once when I was on 5mgs. a day of Prednisolone, and they had to give me a huge dose of steroids with the anaesthetic so that I did not get post operative shock, then recovery was months instead of weeks. Rheumatologists don't seem to warn people when they put them on these drugs, that if they need any surgery for anything, it might be difficult and I don't agree that people should take the drugs all the time like the Rheumatologists want, even when the disease isn't active, according to the blood tests, (my husband and I get spells of remission from the RA and are sometimes not too bad for two or three months at a time, before it flares up again, but if we took the medication all the time, we wouldn't know that, would we?
It is really tough when you have additional health problems that limit the choice of treatment, I can see that.
I know that steroids are the only drug option in some cases and I'd find that a difficult pill to swallow too, quite literally!
I don't like taking drugs at all. All I'm on is Humira, I don't take painkillers if I can possibly do without them which is almost all the time, I'm lucky in that respect. My rheumy said at the start that the aim was to achieve a long period of remission which would ideally involve stopping Humira.
My joints deteriorated rapidly before diagnosis, that's mainly why I take the drugs but it's also because the disease can start to affect organs and is just bad news for overall health. For me personally I think the drugs are the least worst option.
I have an online friend who also has psoriatic arthritis. She has had to have some of the same joints replaced twice. The disease has also affected her feet so badly that she now needs a mobility scooter to get around and straightforward joint replacement in her feet is not possible. She would need a very complex procedure, I believe, involving bone transplants, which is not guaranteed to work and could make things worse.
Nothing is straightforward with inflammatory arthritis. We all have difficult choices to make and I wish you well whatever you do.
But the main thing that hasn't been addressed is the situation with your rheumy .... the 'do you .... don't you have RA?' thing. It sounds as if you don't know what to believe and could do with a bit more clarity on that front. Have you had enough of a chat with your rheumy to get a clear picture?
As has already been mentioned, blood tests do not give a definitive diagnosis. I have put A link to our articles on diagnosis and blood tests, including seronegativity for you to look at:
Fatigue is a symptom of uncontrolled RA and it is perhaps worth discussing with your consultant how you are feeling rather than just stop taking your medication without them knowing you are doing this.
Hope this helps
Beverley (NRAS Helpline)
I would agree that self medication is usually not a wise decision. If your MRI shows erosion or inflammation of your joint then discontinuing drugs that are used to prevent it is simply not prudent. Take care.
Ask about Psoriatic arthritis which has very similar symptoms with no blood markers.
There was a full page article in the Daily Mail stating that it is a little recognised fact that at least one third of RA patients do NOT have the antibodies. Doctors are advised to treat according to the clinical picture. It's worth reading.
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