Puzzled!!

[Judywalks]

I posted a few weeks ago about the difficult appointment I had with my Rheumatologist.

After that appointment I had blood tests to check everything including Cortisol levels. I had a quick phone call today from a nurse saying that all tests were ok and no further intervention mentioned. As I said before I am experiencing a lot of pain in my hands since Pred was stopped in January to the extent that two weeks ago I couldn’t even dress myself. I decided to put myself onto 5mgms of Pred to see what difference it made. I have felt so much better.

I had an appointment with a GP yesterday because I have a UTI ( these occur frequently) I was given antibiotics but when I tried to discuss the difficulties with Rheumy she said that she couldn’t do anything about that and suggested I get in touch with PALS. I also told her what I had done re Pred and she said I shouldn’t have done that and that they wouldn’t prescribe it if I asked. ( I have some in hand.)I am still on 20 mgms Methotrexate which they said would be gradually reduced over time. As I said before my greatest anxiety is having another flare of GCA.This happened in 2019 when I was taken off all meds and I had a really difficult time.

I don’t know what to do next. Feeling very down and as I said puzzled. I am amazed at the info I read here. I have been on Meds for about 8 or 9 yrs and realise I know so little. Thank you.

[PMRpro Ambassador]

It is difficult when you have a strained relationship with a doctor. And you need a rheumy for MTX.

Are you sure the hands are PMR? They may be but OA is just as likely - in which case Flexiseq may improve the pain a lot. Have you tried that?

[Judywalks in reply to PMRpro]

Yes it is very possible it is arthritis as I have had two knee replacements plus a shoulder replacement in the last few years. I will get some Flexiseq.

[PMRpro Ambassador in reply to Judywalks]

It is always worth a try!

[Bcol]

Hi Judywalks, just a thought, I noticed that in an earlier post you mentioned Carpal Tunnel Syndrome. I have a similar problem in that I noticed that my CTS came back/started when I got down to 5.0mg of Pred. The first time it happened (middle of Covid) both doc and I ruled out surgery and as CTS can also be a side product of PMR I went back up to 10mg and then tapered slowly down again. It solved the problem. It's come back a little since I got back to 2.5mg-3.0mg but wrist supports at night and a slow taper is keeping it under control.I also suffer from OA but don't think mine are OA pains but I guess you can't rule out that possibility and your doc/Rheumy don't seem very conducive to the use of Pred.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you’re in pain again, but as others have maybe not all GCA related, but other things. It’s very easy to think it’s all down to current illness, but very often it’s not.. as PMRpro suggests try Flexiseq - it is good, and do also have a look at CTS as suggested by Bcol

If your GP is not going to prescribe any more Pred then you need the work out how you are going to reduce to zero with what you have without making yourself more ill.

[PMRpro Ambassador in reply to DorsetLady]

Just to add to DL's comment - am I right in thinking you have been on the 5mg for just a couple of weeks? If so. getting off it will be easy enough, you could just stop.

[Judywalks in reply to PMRpro]

I’ve been on 5 MGM’s for 10 days so I could stop. I have to trust that I won’t get another flare.

[PMRpro Ambassador in reply to Judywalks]

You do - although sticking to 1mg a day would probably do the job now it is sorted. BUT you are going to need symptoms to get the GPs to agree to provide even that low a dose ongoing.

[Judywalks in reply to PMRpro]

Thankyou. I have Pred left so will try 1 mg and try and persuade GP to give me more.

[Pixix]

OA was my thought, too! As I get to the lower doses of 1-3mg my OA has become so bad that I can’t pick up a cup without bad acute pain. I’m wearing splints most of the time. I think it’s because the steroids masked how bad my OA in thumb joint is. Also have a lot more (& stronger) pains in my toes. Just started using Flexiseq two days ago. I was on 2mg & having adrenal insufficiency trouble & contacted my GP urgently. He upped my pred from 1mg to 2mg & texted me a plan for a longer taper.

[Judywalks in reply to Pixix]

Thanks. I hadn’t thought about steroids masking the pain. I wear splints at night and in the day when I feel I need them. I have been using Voltarol but will try Flexisq.

[Pixix in reply to Judywalks]

I hadn’t…but when I saw my doctor…I was on about 6 or 7mg & declared that my OA seemed much worse, he explained it to me! If steroids were an ‘ordinary’ drug it would probably be used more in OA, though 5he injections are regularly used. I had 3 a year in each thumb before PMR started & they helped a lot! S x

[Judywalks in reply to Pixix]

I’ve had Steroid injections for CPT both hands but can’t have more so am waiting for op. Waiting list apparently is down to 3 months so shouldn’t be too long now.

[Pixix in reply to Judywalks]

interesting. I have CPT on one hand only, & wear full wrist splints at night. But not as bad as the OA. My husband had the surgery, ever so simple & quick recovery time!