In remission but still have pain.

Posted , 7 users are following.

When I last saw my rheumatologist he was pleased with how I was doing and said that the hydroxychloroquine (only drug I'm on for RA) was working well and keeping the RA controlled. He said he felt I was in remission which of course was great to hear. That was several months ago now and despite at the time experiencing stiffness and some painful joints I've had a couple of particularly rough episodes recently. My GP did lots of blood tests as she was sure something wasn't right. I just thought that the test for inflammation would show up something and my probs would all be connected to the RA but they were all fine. It's a complete mystery to me why I feel the way I do when nothing is showing up on blood tests. My question is if I'm in remission should I still be getting painful joints? My hands /fingers are stiffer, one knee has been very painful and feet & elbows noticeably worse. It's all manageable but I only see the rheumatologist once a year so in between times I just get on with things....unless like recently when my BP shot up for no apparent reason and I was experiencing other symptoms and so went to my GP. Has anyone else been in remission but still had painful joints?

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  • Posted

    Have you checked the side effects for Hydroxychlorquine? Also, annual visits to the rheumatologist are for those in remission where everything is just fine. This is clearly not you. My recommendation is get back to the rheumatologist asap. Something is going wrong and they're the specialists whose job it is to find out what.
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  • Posted

    I can recall reading about people who were having RA flare-ups, but the inflammation markers in their blood tests were normal. It's not common, but  apparently it can happen. 
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  • Posted

    Hi Debra, I haven't been on here because I never remember password but took the time to look it up.

    i have some of your symptoms with all my texts showing nothing.  I took methotrexate along with other meds for about 8 months and still had knee, ankle, and wrist pain and burn g feet.  I am not impressed with my Rhuematologist at all.  She says I have inflammatory arthritis but the pain never went away.  

    Since the worst pain was my knee I went to my orthopedic doctor and he said no arthritis showed in X-rays.  He said there was one way to find out and he injected (cortisone I think) into m knee.  Beginning the following day m knee was and still is pain free.  

    I stopped taking the Methotrexate a month ago because of what I read.  I still only have the burning feet, mostly in bed once they are resting.  How bad the burning sensation depends on how much I am on my feet that day.

    We are moving out of state and I hope to find a better Rheumatolgist.  I suggest you do the same.  

    There is little known about arthritis.  They are in the dark about it after all these years.  So don't feel crazy like I did for years because my doctor couldn't figure it out.

    do you have any other autoimmune diseases?

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  • Posted

    Thank you for replies. I don't have any other autoimmune diseases but I'm on a beta blocker for paroxysmal atrial tachycardia, statin, high blood pressure tab and recently put on med for acid reflux which seems to have helped. I'm due to see my GP tomorrow to discuss results of recent blood tests....which I was told were all satisfactory. My rheumatologist is apparently quite high up in the field and lectures on RA so I can only presume he knows what he is talking about. After having RA for 7&1/2 yrs I'm still getting to grips with it and learning all the time...and often unsure of certain aspects.....but if it has been read that people can have flare ups but still have normal levels of inflammation then maybe what I experienced was a flare up. I will definitely discuss this when I next have the opportunity. I was told when you are on Hydroxychloroquine you don't need regular blood tests unlike Methotrexate (which I used to be on but chose to change)...it does have side effects but seem lesser than those of other meds.
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    • Posted

      I'm on hydroxychloroquine. No need for blood tests as you say. Have you had your eyes tested since starting hydroxy? My reheumy advised me to as it can affect them..not sure exactly how though. I think the optician said it was to do with gluocoma (spelling).
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  • Posted

    hello deb

    sorry you are experiencing these joint pains....the blood tests are on clinical remission as my rheumy informed me, im having a flare as we speak but my blood esr was 21 (which is low for me) and my crp is 6 but im clearly in pain and i dont always get swelling to experience pain... hope this helps... i also agree with looking the side effects of the other pills ur taking good luck buddy xx

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  • Posted

    Saw my GP this aft and she went through my blood test results ...I was tested for loads of things from anaemia to celiac thyroid to inflammation etc, etc. All clear. It's 2 wks since I was feeling really unwell, even a nurse at the surgery at the time asked me if I was OK as I looked so pale....I'm feeling so much better now so its a mystery as to what was happening. I'm to stay on the tablets for my stomach for just another 2 mths then come off them and see if the symptoms of acid reflux return. Ive been for a 20 min walk today and managed it comfortably. My GP doesn't seem to think anything I've experienced is side effects of any of the meds I'm on. I don't know how they can be so sure. Each one has a whole load of possible side effects and most of them are very similar such as headaches.

    I have yearly eye checks and also for glaucoma as my mum has that. So far so good. The only things I've noticed being on Hydroxychloroquine is my hair colour has changed...it strips the colour and is now so much lighter. I colour it every now and then to try and take it back to its natural brown but within a week it starts to really lighten again. Also sometimes when sitting in the sun my skin can slightly prickle or sting especially on my hands.

    Just trying to stay positive and make the most of feeling OK and hoping I don't get too many of the spells like I had recently. I just need to clarify with the rheumatologist about joint pain when you are in remission.... and can you have a flare without swelling or raised inflammation. Good luck to everyone managing their health.

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  • Posted

    I was under the impression that RA was a lifetime sentence!
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    • Posted

      Hi Tony, well that's a rather negative way of looking at it but its true there is no cure at present. The best that can be hoped for is management of the disease and ultimately remission which I understand not everyone with RA is fortunate enough to experience.
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  • Posted

    It's not negative at all just a simple truth, no point in sugar coating it!
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  • Posted

    i have to agree with Tony, bloody lifetime sentence of pain...I think your lucky if you find something that works, x
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