What next??? :(

What next??? :(

I have been suffering with RA & Fibromyalgia since around yr 2000 and

I went to the rheumo clinic on Thursday last & got told off as my ESR was up at 47 (as opposed to 13, on my last visit) & I have been feeling pretty rubbish for a while now. I was told that I should have called them straight away as I have had a lot of pain especially in my feet, shoulders & neck. I have been on Enbrel sub cut injection for about 3 years now along with amitryptylene for the fibromyalgia & prednisolone, naproxen, & codiene for the inflammation & pain & they also gave me metpid last time I had a really bad flare. I have tried mtx, which made me feel awful, sulphasalazine didnt agree at all, hydroxychloroquine, (which caused peripheral neuropathy, severe numbness of my toes & fingers along with the raynauds), I couldnt tell if the bath water was too hot or cold, I told them about this & they said it may be the cause but since stopping it, my feeling has returned although not fully in my feet. I ended up with a steroid injection & more xrays of hands & feet on Thursday, & now have to wait to see what else they can give me along with the Enbrel as it would seem that I have built up a resistance to it? I know there are other things out there, & I guess I was getting a bit too cocky as the Enbrel seemed to really settle things down for a while! I have tried diet changes, vitamin remedies etc, & just about everything I can think of. I do work but this is becoming increasingly difficult due to the tiredness & fatigue of not sleeping due to the pain! Am really not sure what is next! Trouble is cant afford to not work! so feel like Im up against a brick wall now!!!

14 Replies

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  • Sorry that you are struggling so much. But at least, as you say, there are other anti-tnfs and at least they seem to be concerned enough to address this and remind you to contact them if things aren't going well. Hopefully you will get back on track with a new anti-tnf. It is very confusing with pain when we have so many different things going on in our bodies I know.

    I too failed to tolerate the same DMARDs as you but unlike you have not been offered Embrel or any of the anti-tnfs despite being in a lot of pain and having an ESR of around 62 at my last appointment in June. I have a small fiber neuropathy which was recently put down to my 18 months on Hydroxy by a neuro physiologist during nerve conduction tests. I had no idea that this drug could potentially have been responsible - I was happy to blame MTX or my dodgy immune system/ RA. But whatever the cause the neuropathy has continued on and worsened despite being off all drugs now and I have Raynaud's type symptoms in my feet and elsewhere too. I do wish my rheumy and GPs would show some concern for my wellbeing and get me back onto medication which might hopefully modify my symptoms again.

    Take care, Twitchy.

  • Hi there thank you for taking the trouble to reply. A freind of mine who has the same condition actually knows the doctor who is responsible for the development of the anti tnf therapy, & it was her that told me about the hydroxychloroquine, and she said that she had asked him about the symptoms which she was experiencing & he had told her to stop taking it immediatley as it can cause total paralysis, and this is a warning indicator! Scary stuff! Trouble is what can you do when your in so much pain, your kind of grateful for anything that might bring about a bit of relief arent you? We are very lucky in this area as we have 2 brilliant hospitals & the NHS care is second to none (I can say that cos I work there)! lol! but joking aside I have had 2 very traumatic experiences with the treatment of the NHS & cannot fault them! If it wasnt for such wonderful care, I wouldnt have both sons & I wouldnt have a husband either! So I for one am very grateful. I also go to pilates 2 x a week & have found this a real help, as it is gentle excersise & keeps me mobile. Maybe you could ask about the anti tnf treatments available next time you go to clinic? Just tell them you need more help! Are there any support groups near you ? I do hope you soon feel better. Take care & keep me posted.

    Kind regards

  • My situation is a bit complicated to explain on your post but I have just posted myself. I'm glad you have had such a good experience of rheumatology and the NHS. Take care. Twitchy

  • Thank you will keep you posted! :)

  • Hi there

    Sounds like the Enbrel is passed it's best for you honey. If it was working well your Esr wouldn't be so high ( unless you had an infection). What you need is a new treatment. Ideally one that would keep your RA under control so you don't need any prednisolone!!! Are you taking calcium and vit D supplement and have you had a bone density scan? I have one every 3 years now but used to go annually. When do you got back to rheumatology?

  • Hi there, thank you for taking the trouble to reply to me. Yes they asked if I had an infection of any kind, but not that I know of, and I am on calcium tabs & I take multivits. I only take 5mg daily of the prednisolone, maintenance dose, the minute I try to go lower, everything flares up again! I had a dexa scan a couple of years ago & they were very pleased with the result of that & they havnt mentioned having another yet. I am waiting for the letter from the consultant following my visit to clinic last week, so who knows what theyll give me next! I guess the fact that Im menopausal thrown into the mix doesnt help either!!!!

    Will keep you posted.

    Take care

  • Anytime 141960!

    Do you know there's a thing, phenomenon that when you stop pred you can temporarily flare. I forget what's it's called but bear it in mind. But you obviously need the pred now so don't worry about it.

  • Yes I have heard of this, but I have been unable to stop them completely so they have left me on a 5mg dose for the time being. Hopefully if they can find another anti tnf then maybe I can come off of the pred totally! Im always hopeful! Take care now & thanks for the info.

  • My fingers are crossed for you. I failed 3 anti tnfs then went onto have a biologic in 2007 and still on it! Haven't need pred since. Yay!!!

  • Hi 141960,

    Fibromyalgia 'can' be down to just a symptom of undiagnosed or even under treated (under medicated) Hypothyoidism.

    (Hypothyroidism = An Underactive Thyroid.)

    I got rid of my Fibromyalgia Pains, tiredness, brain fog overnight, once optimally medicated with my prescribed Levothyroxine.

    Feeling colder than before and having cold hands and feet is also a symptom of Hypothyroidism.

    Along with Fibromyalgia, Cronic Fatigue and ME are also often down to Hypothyroidism, not saying everyone with F/CFS/ME has Hypothyroidism though, but it can be.

    Have you had any thyroid bloods taken. ?

    Many Doctors say 'your thyroid bloods look OK' or are normal 'within range', yet you might still feel terrible, these are the patients who are falling through the thyroid net and often get left being labeled with Fibromyalgia, CFS or ME. (again, not saying all F,CFS or ME is down to Thyroid problems.)

    Websites to check out STTM = 'Stop The Thyroid Madness' (American website)

    and 'Thyroid UK' (check out Fibromyalgia on them both.)

  • Hi there,

    Thank you for taking the trouble to reply to me. Yes I have had my thyroid checked quite q few times because Im always so hot & tired as well as all the other symptoms, and various other tests for lupus etc, but they do say that fibro goes hand in hand with the RA? My heat is mainly down to being menopausal, & I guess a lot of the other symptoms are too, but the fact that I am suffering with my neck at the mo (cervical spondylisis), and have to sleep with a rolled up towel round the back of my neck is not helping either! Hopefully I should hear from the clinic in the next few days and they will tell me what other meds to take along with the enbrel or maybe theyll put me on something completely different. The Rheumo nurse seemed quite confident that there are other things that I can try.

    I will keep you posted.

    Kind regards

  • What were your thyroid blood results 141960 ?

    Doctors often say your thyroid is 'normal' even when many of us still have FM, CFS or ME. tiredness weight gain, brain fog and feel far from normal.

    Over in Europe and in America the TSH (Thyroid Stimulating Hormone,) blood range has been changed (narrowed down) so now more patients with FM, CFS and ME are being spotted instead of falling through the net like they do over here in the UK.

    I always ask for a printout of my bloods and their ranges, Both Hubby and Daughter both had the tiredness and were found to have low FreeT4 thyroid bloods, but Doctor said their bloods were normal. I knew they were not.

    Since self treating them they feel far better, both no longer tired.

  • Sorry you are struggling and I can totally relate to the having to work, but finding it tough. I am on Humria for my RA, but not really sure what good it does. I find going to hydrotherapy twice a week really helps. I do gently exercise in a heated pool for 30 minutes and then spend 10 mins in a jacuzzi and then 15 mins stretching in a steam room. It only costs so £3.70 so totally worth it. I know they go on about how bad they are for you, but if it's really cold I find a 5 minute sunbed also helps and eating fresh non processed foods. Good luck.

  • Thank you, never thought about hydro therapy, but I know when we were on holiday last year, the spa really helped. I find the pilates does help too. I do eat lots of fresh fruit & veg avoiding the ones that cause flares like tomatoes, grapefruits etc tho & try to eat healthy things. Is the one your on an anti tnf too? I have hear of it? Take care & thank you for replying. Kind regards

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