Baricitinib and being told I’m in remission but still... - NRAS

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Baricitinib and being told I’m in remission but still in severe pain.

Lornap1 profile image
35 Replies

Hi there, just wondering if anyone has been told they’re in remission but still in a great deal of pain. I started Baricitinib last year due to trying so many RA drugs that they weren’t helping much at all. Within 6months of using it, I’m apparently in remission but my joints still ache like before only difference is the swelling has gone down. They now think I have fibromyalgia, at least that’s what they told my doctor. Has anyone else has this issue at all.

35 Replies
Mmrr profile image
Mmrr

I'm on Toficitinib, have constant aches and pains, hot hands, swollen ankles and fatigue. My rheumatologist says it is working as there is no sign of synovitis on MRIs. I'm seronegative.

I aim to contact her again when I return from holiday. She can be very dismissive, but I will pursue.

Sometimes I fail to understand the decision making. I guess it is worth asking for an other opinion.

Deeb1764 profile image
Deeb1764

There is an online test for fibromyalgia BUT you can have RA and fibro. The main thing is fibro is more muscular pain than joint pain. However I have both and on Barcitnib and been told the fibro is big issue but this is because the blood result show control of RA. Does not mean you don’t have RA and can’t have pain and swelling and all the other lovely stuff RA throws at you. Worth calling NRAS for a chat and how to move forward. I have done this a few tissues when frustrated about it all x

Lornap1 profile image
Lornap1 in reply to Deeb1764

Hi, I’ve had this for 15 years and nothing has really helped me, I’m always in some sort of pain and they definitely are not listening to me. I definitely do not think I have fibromyalgia as I don’t have the symptoms for it. I shall definitely give nras a call and see if they can help me out, and possibly give me some sort of way to be assertive with my rheumatology team as I’ve been far too nice and just been putting up with anything they say.

NannyNooNoo profile image
NannyNooNoo in reply to Deeb1764

Can I ask where to find the online fibro test please?

Deeb1764 profile image
Deeb1764 in reply to NannyNooNoo

fibromyalgiaforums.org/get-...

I used this to see as thought something was not right and then a week later the private consultant confirmed it even though had not mentioned it at the point of diagnosis.

NannyNooNoo profile image
NannyNooNoo in reply to Deeb1764

Thanks - I had the diagnosis a few years ago, just thought it might be interesting to see what an online test might show 😂😂

Deeb1764 profile image
Deeb1764 in reply to NannyNooNoo

I used it as a tool rather than THIS is it! And then did more research from that point. Then a discussion with the consultant so not just diagnosing yourself.

Brychni profile image
Brychni in reply to Deeb1764

Just looked at this: they can't even spell Raynaud's properly.

Deeb1764 profile image
Deeb1764 in reply to Brychni

I have it and I have to think twice but the test is about making you think about what you have as there is a difference between aches and pains of life and also RA pain to fibro so I found it as many others have a way of looking at things. I also was recommended a book by Dr Leon Chaitow which really made me realise more was going on than just RA at that point in time.

NannyNooNoo profile image
NannyNooNoo in reply to Deeb1764

I have RA, OA, fibro & recently added bursitis into the mix - sometimes difficult to distinguish which is which 😂😂

Deeb1764 profile image
Deeb1764 in reply to NannyNooNoo

I hear you some days like today everything is kicking off and normally not too growly but hubby go the full force of me in pain this morning. x

in reply to NannyNooNoo

Oh me too . I have RA, fibro, Sjögren’s syndrome and lichen sclerosis just diagnosed with calcification of Achilles tendon. One kicks off the others join in.

I used this site to test myself as they kept saying not RA . I was on Baricitnib and MTX.

I do get swelling but no pain with fibro in my hands but shoulder joint pain with Fibro 🤷🏽‍♀️🤷🏽‍♀️ don’t know if I’m coming or going then throw in the menopause ⚡️⚡️⚡️

Brychni profile image
Brychni in reply to Deeb1764

Fibro has only been mentioned once during a rheumatology appointment and I shut it down immediately. I'm absolutely not diminishing fibromyalgia but I think becasue treattments are vague it seems to be thrown about as a diagnosis too easily; dismissed as 'just fibromyalgia'.

Although I have had episodes of fatigue, with hindsight I can put it down to a lot of other things (including very low iron on one occasion) fatigue has not been part of the problems I have and I make it clear at every appointment that it's not an issue. But honestly they all try to steer you in that direction. It makes me quite snappy and I told one rheumatologist before it even came up that I do not suffer from fatigue.

Lornap1 profile image
Lornap1 in reply to Brychni

This is the first time they have mentioned it ( to my doctor, I’m still waiting to hear from them) because I’m supposed to be in remission they think it’s got to be something else. I have severe and very aggressive Ra for 15 years and it has never been controlled. It’s my joints that are painful, the same joints that have been painful for the 15 years. I do suffer from fatigue but that’s down to my Ra not being controlled and not getting a good sleep. If I take prednisone my pain goes away and so does my fatigue. I will definitely not let them fob me off with something I have not got because they think Baricitinib is a magic pill and puts people into false remission.

Deeb1764 profile image
Deeb1764 in reply to Brychni

I knew I had something else going on and yes it is hard to treat but it is real and I needed to deal with it. For me the treatment is not much BUT more about trying to keep it in check but it is very weather based for me, so too cold and windy or too hot I seem to fibro flare. Windy days I am almost unable to walk. It is the skin sensitivity that I find hard. However the private consultant was clear that a bladder issue I was having was NOT RA which a&e had tried to fob off and he felt it was the fibro and I am now awaiting test uro dynamics based on his feedback to my consultant and GP.

I have days where I cannot touch for instance my skin at all even a clothes label can send me into a spin. I have just got over 3 weeks of the side of my thighs being so sore I kept asking my husband to check for bruising. It was 8inch length and 3 inch wide area on both thighs. Then I RA flared it was a mess!!

Today my Raynauds playing up and tips of fingers keep going very white and then of course the red as they warm up again.

DO feel I am playing an autoimmune version of murder in the dark (which is doing what to my body)

in reply to Deeb1764

Same here ..weather plays a big part and yes skin sensitivity like you seams and labels mean nerve pain . All my senses go in to over load.my smell is heightened it’s overwhelming as is hearing. Medication is no help when it gets a hold .

I was exactly the same.

I kept saying I had arthritic pain and was dismissed, wasn't until I saw an ENT consultant privately (for another matter) and he remarked upon my inflammation in my jaw that the rheumatologist took me seriously.

I have since changed consultants, they arranged a MRI, listed to me and helped me. It appears the biologic im on took a really long time to work and I wasn't going mad.

I had been diagnosed with fibromyalgia which I admit I find it difficult to accept but I'm trying to learn what triggers it and sometimes the line blurs between whats fybro and whats RA. Having a jaw so swollen you can't close your mouth and have gone temporarily deaf because of it you know its RA and not fybro.

RA has that really crappy pain to it doesn't it, when you know you know !!

I keep challenging everything I don't agree with ! Not in an aggressive way but persistent and I get them to reason their diagnosis , I'd like to think I've built up a good rapour with my rheumatologist so I feel comfortable saying what I'm thinking;I definitely couldn't do this with my previous consultants.

Good luck, dont give up x

Lornap1 profile image
Lornap1 in reply to Marionfromhappydays

I did ask for a different rheumatology team but was told it’s not that easy. I’m so frustrated by it all, mostly by rheumatology not listening to me, I actually don’t think they believe me to be honest and the only thing that helps is prednisone, they won’t give me that either now.I done an online fibromyalgia test that Deeb1764 said about and I scored 2 so I know I don’t have that. Im definitely on the war path now, 15 years of this and still no further forward. I have never asked questions or challenged any decisions that was made for me but that is about to change. I can’t even hold my 4 month old grandson due to my pain. Im hoping to get a call tomorrow from my doctor so fingers crossed I get a consultant appointment haha.

Marionfromhappydays profile image
Marionfromhappydays in reply to Lornap1

Really hope you get the help you deserve, congratulations on your new grandson too x

Mmrr profile image
Mmrr in reply to Lornap1

I'm 6 years into a diagnosis of seronegative RA. I've made a little progress by being persistent, but my symptoms are increasing again, despite 12 mgs prednisilone, leflunomide and toficinitib. I'm not taken seriously, I'm undermined and made look foolish at appointments. I'm offered opioids and antidepressants on a semi regular basis. I know that I have uncontrolled inflammation, the label (RA, Psoriatic and so on may be debatable, but I have an acute inflammation).

When I return from holiday, I'm about to enter into another dialogue with my consultant.

Keep questioning.

Brychni profile image
Brychni in reply to Mmrr

It's exhausting. I'm feeling quite grateful that I'm on an even keel at the moment. No miraculous recovery but an improvement and non worsening pain which I manage.

Ruth12345 profile image
Ruth12345

Yes I'm the same. In constant pain of varying degrees. I'm on pain relief 3 times a day. Pain wakes me up. I've been told I'm in 'my remission '. Also that I may have fibro myalgia but told it makes no difference to the treatment. Rheumy now talking about redusing my methotrexate, hydroxy and sulpha. I'm on 5mg of pred daily as well. I've given up to be honest trying to say anything. I wish you all the best. 🌻

Otto11 profile image
Otto11

Yes I was told I was in remission several years ago. I asked why did I have so much pain then? The nurse did more bloods & then it was downhill from then on. Very quickly swapped onto Rituximab. I’ve also got Fibromyalgia. Go with your own body. Patient knows best x

barbieg profile image
barbieg

Goodness me, it was the same with me. I was sero positive when diagnosed in 2004 and was repeatedly told I’m in remission and sero negative for the last 2 years. I was left with no medication for a year and told I would be discharged. I was desperate and emailed my consultant constantly telling her how much pain I was in. I never got a reply until I managed to get a telephone consultation with a wonderful doctor at my surgery. She couldn’t believe what had happened and immediately sent off an email to my consultant asking for an urgent appointment which I got. I lost all confidence in my consultant and started the ball rolling to change consultant. I had to really stand my ground when I saw her as she tried to tell me all my pain was probably Osteoarthritis and Fibromyalgia which I’ve had for over 30 yrs. I spoke very firmly and told her no! She changed immediately and sent me for tests and started me on medication straight away. 15 days of Prednisone too which really helped. Sadly, I’m afraid you have to fight for treatment, just when your feeling so stressed and tired and in constant pain. My blood tests never show inflammation, nor do I suffer swollen joints. I wish you all the best, don’t give up, ask questions such as “why do they think that?” Be firm but polite, it’s not easy I know. Wishing you a good outcome.

Mmrr profile image
Mmrr in reply to barbieg

I'm on a similar journey to you. I did make some progress, but my symptoms are increasing again. You just have to keep asking, questioning and being very firm.

barbieg profile image
barbieg in reply to Mmrr

Yes, just when you really don’t feel up to it. My consultant asked if she could examine me , I would have liked to have said “that will be a first!” Needless to say I didn’t. She had never examined me in all the years she was my consultant. The cynic in me thinks she went to town on me and pulled out all the stops as she was handing me over to another consultant.

Mmrr profile image
Mmrr in reply to barbieg

My hands, amongst other things are bothering me. My wrists are swollen and hot. My consultant dismisses my complaints.I sit as a patient for medical students. The Consultant (not mine) showed them how to do a hand examination in RA patients, asked them what they found. He then went on to explain that I still have signs of active RA, despite being on oral prednisolone, leflunomide and toficinitib. Yes, I know that ...the 4th year medical students do too but my consultant ?

Babaj12345 profile image
Babaj12345

I’m on sarilumab injections the bloods say low inflammation but my joints are all swollen and I’m in terrible pain they said I have fibromyalgia also but it feels like anRA flare up to me

Flipper12345yellow profile image
Flipper12345yellow

Hi, nothing like your experience but just to say I started baricitinib last August and no difference to my swelling and pain whatsoever. Would love to get 2 year old swelling down on knees, I've tried everything.

I have fibro too but that doesn't cause swelling, just severe widespread muscular pain.

Hope you are in remission, give your joints a rest.

Fra22-57 profile image
Fra22-57

I have rheumatoid arthritis aswell as fibromyalgia but on a few occasions have been told my rheumatoid disease is in remission.I have been aghast at this and asked the rheumatologist how that can that be possible when I was in so much pain.His answer was that my blood tests were ok.Next appointment I was out of remission !

Blodynhaul profile image
Blodynhaul

Very similar to you. After last year with the RA horribly active (sero-positive) and DMARDs then Biologic not working, I was put on Filgotinib jak-inhibitor similar to yours in December. Slowly it has really helped with the RA inflammation & agony - but left in a state still with chronic pain, stiffness, weakness & side effects from the drug. When I discussed the chronic pain with my rheumy I was told it's fibromyalgia & osteoarthritis. The worst chronic pain is fingers, hands, wrists, shoulders & upper arms (muscular) & varying aches & pains in knees, ankles, feet daily that play up & sometimes elbows. Hands are always a problem, 'crunching' finger joints when doing things, still can't do a fist or grip well at all, they get red & hot still & always feel I want to pull the fingers out as they feel they are compressing in. Lately also having a bit of what feels like RA pain again in hand/thumb, so hoping it's not rearing its ugly head again! Like you, bloods show big decrease in inflammatory markers, which is great - but the truth of it is although so grateful for reduction in agony & debilitation, I still feel rubbish & chronic effects (I think due to the drug) are annoying (loose unsettled bowels, chesty & breathlessness, sore gums, very funny head, lot of fatigue etc.

Sorry to rabbit on Lorna! But our experiences sound similar. My RA was SO bad last year, that it's great to feel that that side of things has improved to allow me relief from constant multiple-joint agony & to move again, but I'm no where back to what I was before last year and feel stuck like this.

Really hope things improve for you. It was a surprise being told suddenly I had fibromyalgia, though it makes sense as I kept telling the Rheumy something else was going on in the connective tissues on top of the RA joints side of things. Take care!

Lornap1 profile image
Lornap1 in reply to Blodynhaul

My goodness, you sound as if you’re having a really bad time, sometimes I read other peoples stories and think how much worse they are than me. I’m so glad I started this post but extremely sad to read how many other people are being told they are in remission when they clearly are not. I don’t have aches in my muscles or headaches etc associated with fibromyalgia and that’s how I know it’s just my rheumatism. I’m so grateful to everyone replying to the post and knowing I’m not alone because although I have a very big and close family a lot of the time I feel so alone due to being the only one with this condition. Physio have managed to squeeze me in next week and I think an assessment by my non existent rheumatology team on the way, I am definitely going to be heard as before I’ve never said a word and now I’m really annoyed by how dismissive they’ve been.

Blodynhaul profile image
Blodynhaul in reply to Lornap1

Thanks Lorna, good for you, Really hope they listen to you and seriously help you. Hope things will improve, pretty rotten to feel so alone with it. Like you, I'm glad this forum exists - sharing our experiences of RA is a good thing. Good Luck!

Lornap1 profile image
Lornap1

Today I went to see my rheumatology physio therapist, I am definitely not in remission. He’s emailing my doctor to get an emergency prescription of prednisone and taking my case to the consultants on Friday where they will discuss my case and see what other medications they will try. The physio used a Doppler scan on my hands and wrists and it’s showing a lot of my tendons are swollen as well and that’s why I’ve felt so much more pain. I’m just so happy to be finally listened to and now something is finally getting done.

in reply to Lornap1

I’ve been there . Spent the last 4 years in excruciating pain and mobility issues with my ankle. Using crutches and a walking stick to be told it’s not RA as joint is fine . Eventually saw leading Rheumy physio who used a Doppler scan which showed Achilles tares and calcification caused by RA. Why can’t they use these scans during appointments?like you physio much more helpful than consultants. Oh the temptation to say told you so 😁x

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