What to do next?!!!!

Hi everyone, I saw Rheumy consultant yesterday and he is at a loss as to what is going on with my hands. He says there's Osteo arthritis, but doesn't think the swelling, stiffness, pain and heat is Rheumatoid Arthritis. I have had two hand scans which show inflammation, but he says this is in the finger and not the joints. I had another x-Ray and he said he'd contact me if there is anything significant on them.

I have been on MTX, couldn't tolerate it, same goes for Sulphasalazine, I have been taking Hydroxychloroquine since September, no difference as of yet, he has now doubled these to 400mg a day. He wants to try Leflunomide, but I have rather high or erratic blood pressure even taking my meds, so he's not willing to do this unless my blood pressure can be better controlled.

The final thing he did say was that it is probably diabetic neuropathy and my fibromyalgia causing these symptoms. I was on 12.5 of pred over the Xmas period and they didn't do anything I have to slowly reduce them now back to 7.5. I have now succumbed to the dreaded flu virus and got a chest infection so now on antibiotics, feeling rough and can't stop coughing. See GP Monday to get some answers. Really fed up now, this has been going on for nearly 2 years now and got nowhere, but took loads of drugs which didn't work.

Sorry for the long post, just feeling lost as to what to do next.!!!!


23 Replies

  • Really sorry to hear your story, my husband has a similar tale. He was diagnosed with RA over 4 years ago, put on hydroxychloroquine which caused terrible skin problems and mouth ulcers. He was told to stop them and went on methotrexate, which had no impact so they added sulphasalazine which he reacted to quite badly. He came off it all only to find he started with his skin itching and burning, he ended up scratching till it bled. The pain in his joints, muscles in his shoulder and hand no better. So he went back then had to come off again methotrexate. Each time he comes off his itching starts. He last came off methotrexate in May 2014 as his CRP levels are hovering around 50 and his white cell count below round about 1.5 (a new low set by rheumy). His joint and muscle pain no better or worse for being off but the itching and burning skin has started with avegence. His GP now says she thinks the pain in his fingers is osteoarthritis not RA but she is at a loss as to what is causing the itching. To add to the mix he is now aneamic plus B12 deficient. All tests so far negative and GP has finally, after 6 months of intense itching referred him to a dermatologist. So we shall see. His joint pain did improve with predesonel as did his itching, but the treatment was short term and low dose. He has also tried coming off naproxen, as GP thought this may cause the itching but after nearly 3 weeks of really bad joint pain the itching no better. He is due to see the rheumy specialist at the end of the month, who has already said the itching not RA related. No doubt he will just put him back on methotrexate and the circle will continue. Sorry for the long post but it is frustrating and I really do feel for you!

  • Thanks for replying, I can sympathise with your husband, it's so frustrating when the drugs don't work and make things worse. I have intolerances to many drugs especially pain meds, only being able to take paracetamol and pregabalin. I have other medical conditions which don't help with the interactions of all the meds. I am seeing GP Monday for blood test results for other problems eg B12 deficiency, Thyroid function, anaemia, celiac and a few others. Will be going into all these symptoms with him and hope for some answers soon.

    Hope your husband also get some answers do on.


  • Hope you feel better soon x

  • Thanks I hope so too.


  • It was you! I knew there was someone else I was going to ask how their appointment went!!

    Well, it wasn't what you hoped to hear I would think. Certainly nothing conclusive, unless the x rays show different, I hope so in a weird way, you know what I mean? Now the flu? That is going to be a you know what with all the other things going on. Do you have a diabetic clinic at your Practice? If your Rheumy thinks it's diabetic neuropathy then that should be reported to whoever takes it to see what they make of it. I hope your GP is sympathetic to how you're feeling & has some views of his own as to what's going on. Meantime snuggle up & keep warm. I've mentioned this before for others with chest & throat problems, I find Manuka honey & fresh lemon in hot water both eases a chesty cough & sore throat that usually comes with it. It really ease the tightness & soreness for me.

    Let us know what your GP reckons. Take care Jan. x

  • Thanks for replying NMHs, I did a long reply to you, but seems to have lost it along with my brain, somewhere. Tried the honey and lemon, but it just shot my blood sugar up so had to stop that. Seeing GP on Monday have had tests for B12 deficiency, celiac, anaemia, thyroid, FBC, liver function I think that's all. These were done by a locum over the Xmas holidays as I have had side effects from metformin for over a year and my GP just keeps saying it's the best drug for diabetes. Constant diarrhea in the am and having to take Imodium several times if I need to go anywhere. At least I'm now having this investigated and my tablet changed to gliclizide, but blood sugar all over the place at the moment. Feeling lousy with this flu/chest infection, the cough is driving me nuts. Finish antibiotics Sunday so see if there is any infection still there on Monday. All control is at GPs and Practice Nurse who is very good.

    Fingers crossed for some better news Monday.


  • Oh I know, it's so annoying when that happens. I find it's too easy to do that on my memo pad easy to type on but easy to lose!

    How much honey did you put in?! Anyway, not the best thing to send your blood sugars high. My h takes Eucreas (metformin/vildagliptin combo) & Zicron (gliclazide) but struggling a bit at the mo as they won't prescribe one he was given in Spain due to cost, Novonorm (repaglinide), he did really well on that one, the gliclazide replaces it. He's been doing ok & keeping it pretty even at 6 - 8 but gone up recently & unable to get it down. He also has similar problems toilet wise but won't take Imodium so it can pretty inconvenient! Diabetes is another one I wish one tablet would sort everyone out, I'm sure you feel the same! At least you have good support from the Practice nurse, it's really helpful to have someone who knows what they're doing at the helm so to speak.

    I hope the results show a clear indication of what's the cause of your issues & whatever is causing them is easily remedied. You really don't need anything else to have to address do you?

    I hope this awful chest problem clears soon & you can concentrate on your other problems. It's one thing after another & the not knowing that gets you down. x

  • Just hope the results are back of my bloods and they show what's going on. Will let you know what happens, don't need any more problems to cope with or any more meds to take, I'm rattling already.


  • I know the feeling! I hope whatever show up is conclusive one way or the other so you know just what's causing your problems & easily sorted. Fingers crossed for you. x

  • Thanks NMHs, can't cross my fingers but glad you can.

    Here's hoping for a good and satisfactory outcome, but not holding my breath (can't do that either).


  • Aw, hope mine will do?! Left hand only & not until the mid morning when the stiffness eases but will do so nevertheless once they're free! ;)

  • Thank you


  • Jan I'm sorry you have all this to contend with. The co-morbidities (as these other conditions are referred to) are often worse than the RA for some of us I think and we end up desperately looking for answers. The neurologist said he's used to uncertainty in his line of work and forgets that patients have to live with it personally which is quite different. If the symptoms you described are caused by diabetic neuropathy then perhaps they (your endocrinologist) will be able to address them by treating the diabetes more effectively? My late dad had diabetic neuropathy latterly and from his description it was much the same as the stuff I'm dealing with - I think it effected his feet only though rather than his hands although he also suffered from gout and high blood pressure and heart problems. I really hope your GP can help you get to the bottom of it all. Txx

  • Thanks for your reply, hope to get some answers tomorrow when I see GP. Will let you know how I get on. So frustrating when you think it's been diagnosed and treated then they say it could be something else. Back to the drawing board and more investigations are now needed.


  • Hi Jan

    Poor you. I would have thought that if your hand pain was RA related the pred would have made it better? Perhaps your right and it is the Fibro. Hope you get some answers soon. The not knowing is awful isn't it? Hope your chest clears soon, I've had it too then a throat infection and now sinusitis. So many bugs around at the moment. Take care x

  • Thanks Kikideelili for your reply, this is why the Rheumy has decreased my prednisolone, as he said they should have helped with the inflammation by now. He said from the scans it shows inflamation in my fingers, but it's not on the joints, there's no ra showing in the joints themselves. This is why he is not convinced it's inflammatory arthritis as all my bloods are normal. ( although last year he said it could be sero negative arthritis). Could be diabetic neuropathy and or my Fibro. Can't wait for this chest infection to clear up, the cough is really getting to me now and I've gone deaf in one ear too.


  • Have you got some Vicks vapour rub or olbas oil, do the towel over your head every few hours and the cold in your ears should unblock and help your chest too.

  • Yes got the Vicks, but not done the hot water with towel, will get started now. Why didn't I think if that, I think I have major brain fog, it might help with that too. Thanks Kikideelili.


  • Lol jan that would be fab wouldn't it if Vicks cleared brain fog!!!

  • Lol Kikideelili, yeh it would be brill wouldn't it. Think we'd be expecting too much though hehehe, we can all dream.


  • Go to a new rheumatologist or good immunologist! I suffer the same with red sore swollen spots on my body but can vary from day to day, I've been through the mill biopsies, bloods scans no results! I think the auto immune diseases are so variable! Blood pressure: magnesium glycinate (natural) compound chemist! Stops cramps helps with sleep help with blood pressure the list goes on! I have taken it for over 4 years and strongly recommend! 500mgs two tabs at night.

  • Thanks corrective for replying, will speak to GP tomorrow about where we go from here. Need to see someone who can shed some light on this awful ailment I'm suffering at the moment.



    Saw GP this morning, one good thing all blood tests were fine. Spoke about my Diabetes and he has upped the Gliclizide to 80mg a day, see how I get on with that over the next few weeks.

    He hasn't received the Rheumatologists letter yet, but I told him what was said that he doesn't think its arthritis, but diabetic neuropathy and or my Fibro. Well my GP doesn't think it's either of them so is waiting for this letter and said that as the consultant upped the Hydroxychloroquine and is thinking of putting me on Lufflonmide (sp), there is nothing he can do as I am still under the care of the consultant. He agrees there's heat in the hands, swelling, pain and inflamation, but he said if tests were needed they should be actioned by the consultant.

    I am not seeing the consultant for 9 months, so where do I go from here? I'm at a loss as to why my GP can't send me for tests himself, or is it all down to costs? He also told me that the Rheumatology Department at my Hospital is under a lot of pressure, so what, the whole of the NHS is, this surely shouldn't have any influence over whether you get tested for something or not. If these two medical professionals don't know what is causing my symptoms surely they should be sending me to see someone else who could possibly find an answer.

    Sorry for the rant, but this has been on going for over 2 years now and nothing that has been done has helped. I know I have some weird ailments and intolerances to medications, but it is the 21st century and I would have thought there is something out there that could help or someone.

    Hope you are all as good as can be.

    Gentle (((((hugs))))) everyone


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