What to do?

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.!!!!

Jan

12 Replies

oldestnewest
  • Hi, I can't be much help. All I can say is I've got Rheumatoid Athritis in every joint,but my hands and my knee play me up the most,but that's not very often because I take Sulfrasalvazine, ( don't think I've spelled that right ) it's a pity you couldn't tolerate it as I think it's really kept it under control for me. I also can reduce the tablets from time to time to give my body a bit of a rest. Because you've got inflammation Id have though it would be rheumatoid . Dose putting ice packs on help with the pain? I hope you get sorted soon .Take Care PS keep us updated.

  • Hi Gemeni71, thanks for the reply, apparently the inflamation is in the fingers and not on the joints even though my joints are stiff and painfull, he says the reason why I sometimes can't bend my middle fingers sometimes is due to the tendons, which he thinks is diabetic neuropathy or my fibromyalgia. Best and ice does help a little, but short lived. Will let you know what happens at GPs tomorrow.

    Jan

  • Hi jan I hope it goes well for you tomorrow ,I know how frustrateing it can be when nobody can give you answers. The other problem I've found with the medical profession is one tells you one thing then another tells you something else,so they contradict each other. The best advise I've got for you is find a consultant your happy with and stick with him. Also stick with it you want to know what's wrong. Take Care .

  • Thanks, hope to get my GP to get a bit more proactive with this as they seem to be tied by Protocol when it comes to Arthritis.

    Jan

  • Push,Push,and Push some more,the only way you will get any satisfaction is to stamp your feet and be determined. I wish I had years ago. If you sit back and go with the flow ,like I used to,you'll get know where. Fingers crossed you get some help I know what your suffering. Good Luck. I'll say no more .

  • Hi,I would google palindromic rheumatism,its a possibility

  • Hi Pippins2 thanks for your reply, I've had a quick look at Palindromic Rheumatism, but I don't have redness over the joints of my fingers, the redness is on the palm of the hands with heat, the swelling is in all fingers but worse in the middle two. The inflamation on the scan shows In the finger not on the joints. I have had this swelling, pain and inflamation for over 12 months with no respite whatsoever, just slightly receding after applying ice, but soon back to swollen thereafter.

    Back to GP tomorrow so hoping for some better news. Will keep you informed of the outcome.

    Jan

  • Try internet search on Sjogren's Syndrome and Small Fibre neuropathy symptoms before GP tomorrow.

    Ax

  • Hi Amythest, I do have dry eyes, diagnosed by ophthalmologist about 2 years ago, he prescribed various drops, but now use hylo Forte, which I use 4/5 times a day. I was never told that I have Sjorgrens Syndrome though.

    Thanks for the info.

    Jan

  • When you are over your chest infection go and see a massage therapist to work on the muscles in your forearm and wrist.

    Over contracted muscles in the forearm and wrist can play havoc with the functioning of the fingers. This not an area that Rheumatologists know much about as they never do muscular work on muscles.

    Give it a try and see if with more relaxed muscles in the forearm and wrist help the functioning of the fingers.

    Hope this helps

  • Thank you Johnsmith for replying, due to Myofascial pain and my Fibromyalgia I don't think I would tolerate a massage on any of my muscles, but never say never it is always an option to contemplate for the future. When I asked my Rheumatologist about a Fibro clinic he said they don't do one as the only thing they can do is send patients to the pain clinic. That's no help for me as I can't take strong pain meds. Devil and deep blue sea springs to mind.

    Hope you are as well as can be.

    Jan

  • WELL WHAT A WASTE OF TIME:

    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

    Jan

You may also like...