coming off Pred

[Doraflora]

I saw the referral letter today which the rheumatologist has sent to the ortho consultant. It’s obvious he’s wanting me off the steroids as it’s “muddying the waters” (quote) while my knee is being investigated!

I’m doing well on 2mg of Pred but as I’m doing a massively slow taper as it is then I’m feeling nervous about if the consultants try and speed the taper off. Do i just leave it to them?

I don’t really have any pain as such (apart from the knee) - and some days I do wonder if I still have PMR. any twinges I do have I’m putting it down to age!

[DorsetLady PMRGCAuk volunteer]

I wouldn’t t have thought that a dose of 2mg is “muddying the waters” that much to be honest - if it were higher then yes it might do.

As for tapering faster, then I’d decline that offer, and as for whether you still have PMR or not it’s difficult to say, 2mg may be doing a lot more than you think. You’ll only know when you get to zero and no return of symptoms ….and whilst you are having issues with knee..you don’t need to add the possibility of a relapsing PMR into the mix.

[Doraflora in reply to DorsetLady]

Ah, thanks DL, that’s reassured me. I’ll stick to my guns with them.

[Ruins67]

I had problems coming down from 4mg even on what I thought was extremely slow tapering. I finally had my second appointment with a rheumatologist in the whole of my almost 4 years experience of PMR. Bad day to have it as all the hospital computers went down. Notes written by hand by rheumatologist. Three weeks later information sent to my GP talking about a blood test. The letter was very ambiguous and not clear who was initiating the blood test. My GP said it was coming from the hospital. I’ve heard nothing for weeks so after discussing it with GP, I’ve reduced by half MG doses. Helped by actually being prescribed steroids that come in half MG doses too. It seems that the body is very sensitive to reductions when you start reducing whilst already on a low dosage. There are different ways of doing it and you have to go with what is best for you. But it seems the longer the withdrawal from steroids the more successful. I’m aiming to take one MG by the start of summer. Hopefully by the end of summer to be off steroids. That’s the plan. 🤞

[Janet57]

I really don’t think 2mg should be a problem (not that I’m qualified to say). But I had knee problems and last April had a full knee replacement, following years of pain in the knee. I am 67 and feel like a new woman. The op went well (the surgeons well aware of my 3mg Pred. No problems). Yes the exercises hurt like hell for a couple of weeks but I did them faithfully for 12 weeks three times a day. I’m still on 3/2.5 and my Rheumatologist said that I may be on them forever. I am doing an ultra slow taper. Dorset Lady is absolutely right about not tapering faster - no point taking that risk. Good Luck.

[Sharitone]

I don't really understand the muddying the waters comment. Surely if you've been referred to an orthopod, then something must have shown up on XP or examination to make the rheumy feel that it was an orthopaedic problem?

[Doraflora in reply to Sharitone]

Well I was with the orth guy to start with and he referred me to the rheumatologist. He did say that I might be bounced back to him. I’m like a yo-yo!🙄

I think the rheumatologist is thrown by there being hardly any arthritis showing & there’s nothing else he can do. it’ll be down to the ortho guy to decide if I need intervention or not - I’m assuming!

[Sharitone in reply to Doraflora]

I'll just mention, as it's a bit similar to your case, that a couple of years into my PMR treatment I had a lot of trouble with one knee. The rheumy had got me to come off pred fast a few months previously (with TCZ cover). They said there was not much arthritis in my knee and made it sound like I was fussing about nothing. But then it transpired that I was actually having a PMR flare, and when I took steroids again, the knee settled down. So it was PMR all along, even though knees hadn't been involved in the original presentation. If you're doing well on 2mg, I would try to stick to it!

[Doraflora in reply to Sharitone]

Hi Sharitone. I don’t have any intention of coming off the steroids. I’m on 2mg and will stay on that quite some time before tapering again.

I’ve been on Pred 5 years now and it was 9 months ago when my knee started. I keep telling ‘em it started when I did an exercise class and afterwards I knew I’d pulled my knee! I’m sure it is the cartilage which is the culprit.