Is this overkill?

[humlies]

Hello again,

Last Monday I had ultrasound scans on my very painful hands and wrists, on the advice of my rheumatologist. I was amazed to receive a phone call the from the hospital the very next day, telling me that I urgently needed to up the steroids to 20mg, and also start taking 2 steroid sparing medications, one of which is Methotrexate. ( The other was to have been a sulphonamide, to which I am allergic, so they are due to recommend another). The Methotrexate has not yet arrived, but I have had 4 days on 20 mg. of pred; while I know that for some of you this is a comparatively low dose, I am having huge side effects - almost complete lack of sleep, feeling spaced out, dizzy etc. plus visual disturbances.

I have been told that the synovitis in my hands is so bad that I run the risk of the joints being permanently damaged if I do not keep up the medication. However - the rest of my body is fine, and has been for some time. (I started taking Pred.in August 2020). Do any of you think that this is a rather excessive dose for just hands, or do I just have to put up with the side effects? As usual I would be grateful for more wise advice. love to all of you.

[PMRpro Ambassador]

It takes what it takes - and they obviously want to get the inflammation down quickly to reduce the damage being done. Has any of the pain improved? I had synovitis in my hands and feet at the start of PMR, at times I couldn;t hold a glass and walking was awful, and while it did improve a bit quite quickly it was a few months before it was really gone.

[humlies in reply to PMRpro]

Thank you for your unfailing support; the pain is definitely a bit better, and it is good to hear that yours eventually went away .

[Lochy]

I had awful pains in my right hand a few days after my Mum’s funeral, nearly two years ago. Never experienced pain like it and it was very localised. My rheumatologist saw me within the week and gave me a steroid injection in my hand. Phew, huge relief! The same hand has flared again, usually after activity, but never the same excruciating pain. In May after it has been painful for a few months I had another steroid injection, again what a difference. My rheumatologist uses ultrasound regularly and she could see large areas of inflammation around my wrist and a little around some of the fingers but there was no obvious swelling. The same hand is now showing signs of arthritis in the fingers and I’ve had to have one of my rings enlarged. Fingers stiff in the morning but ease off very quickly after walking. As seems to be the case with me odd joints flare up at odd times. I’ve been diagnosed with polymyalgic onset RA and I inject Etanercept and am currently on 4mg prednisolone after wrist playing up again. It’s been a long 7 years for me but my frustration levels are marginally reduced……I’m fed up!

[PMRpro Ambassador in reply to Lochy]

" odd joints flare up at odd times."

That is typical of palindromic rheumatism - often a precursor of an inflammatory arthritis that presents more normally.

[humlies in reply to Lochy]

Interesting that your hands flared at a stressful time - the same happened to me. No-one has suggested to me an injection; I am sure at least one of all you wise people will be able to say when this is more appropriate than a higher oral dose. Well done for keeping going over 7 years and being able to say that you are slightly less frustrated. That is indeed a triumph!!

[Lochy in reply to humlies]

It’s always good to feel triumphant 😁

My rheumatologist agreed trying the steroid injection first before increasing oral steroids dramatically. I was down to 1.5mg quite comfortably and currently on 4mg for a week before I’ll drop to 3 and then gradually back down 🤞I’m waiting for my rheumatologist follow up to discuss how best to move forward and whether Etanercept is the right med for me.

I do feel long term steroid use has weakened my muscles, tendons etc but I do Pilates twice a week and dog walk for up to an hour daily. Conscious that strengthening exercises are important.

[Gimme in reply to Lochy]

I think that the rheumatologist that I saw 2 weeks ago thinks that I have RA, not PMR. Oh joy!

[Feelingpoorly]

Sounds like you have a good Rheumy Team, so trust in what they suggest. It’s worrying I know and steroids can cause a range of symptoms that can be troublesome and concerning. My initial diagnosis was PMR later changed to RA after a scan of my hands and wrists. I was prescribed methotrexate which helped enormously and I was able to come off steroids completely. It’s not so easy for others I know but main thing is to keep good use of your hands and all joints, try to stay positive (this website helps with that) your Rheumy Team are trained specialists and they will want to know if you have any problems with dosage of prescribed drugs, they have various suggestions that could help.

Good luck with your journey ♥️

[humlies in reply to Feelingpoorly]

Thank you! Good to hear that Methotrexate really helped you; some on this forum found the side effects difficult, so it is good to be reminded that for others it is fine. It apparently can take quite a long time to arrive, so I have not started it yet.

Yes, the Rheumy team seem to be amazing; suddenly they have started to take an interest, and I can't quite get over the fact that the nurses are ringing me up to find out how I am! (Torbay for anyone who lives in this part of the world).

[Sharitone]

Could you perhaps get some medication to help with the sleeping, once in a while? It is much harder to put up with everything when you get no sleep.🙂

[humlies in reply to Sharitone]

Yes, thank you, I was thinking of asking for some Zopiclone to tide me over this period. However the last 2 nights have been much better; not a great deal of sleep but feeling really relaxed.