Does GCA become less immune to prednisolone over long period of time.

[Stkeyna]

I just wondered if anyone had any knowledge of whether the effect of prednisolone can wear off as regards GCA. Horrible thought....but I have had GCA for over 9 years now!! I had another relapse about 4 months ago and I am still struggling to get down below 15mgs of prednisolone which is unusual for me. I am also more breathless, have more mild headaches and giddy/light headed than I use to be despite blood pressure being reasonable. So obviously just wondering if there has been any studies etc carried out on whether GCA becomes less immune to the effects of prednisolone over a long period of time?

Any thoughts most appreciated.

Ian

[DorsetLady PMRGCAuk volunteer]

Hi Ian,

Never heard of it - but that doesn't mean to say there hasn't been any.

As you've been on Pred for so long, maybe it's your body that has become less effective at maximising the benefits. Have you discussed with GP or Rheumy?

[Stkeyna in reply to DorsetLady]

Hi, Much appreciate the response. Trying to make an appointment with Rheumy as soon as I can but he appears to be on holiday - GP wouldn't really know what to do.

Thanks again,

Ian

[DorsetLady PMRGCAuk volunteer in reply to Stkeyna]

Having read your reply to PMRpro would have thought Actemra might be worth a try.

[Stkeyna in reply to DorsetLady]

Yes thanks again. Never heard of it so need to do some research. I have tried the normal drugs methotrexate etc and didn't get on with them. However if needs must.....Let see what Rod Hughes says when I can get an appointment.

Kind regards,

Ian

[PMRpro Ambassador]

Not that I know of, although it could - but the activity of the underlying cause many have increased and be unwilling to calm down. I had a flare of my PMR about 18 months ago that caused that sort of symptoms - most unusual, the breathlessness and dizzy feeling came before the PMR bits. It required 15mg of pred to manage it (I'd been at 5mg) and it was a good 4 or 5 months before I could get below 13mg again and it took well over a year to get back to 5mg.

Have you been on pred the entire time? Has your rheumy considered you might be a candidate for tocilizumab/Actemra? It is approved for GCA in the USA and is being used on a case-by-case basis in the UK.

[Stkeyna in reply to PMRpro]

Many thanks - again! Sorry you have been there as well but good to know that I am not going nuts with it all!!

When I saw R. Hughes back in June all was well but I had another relapse a few days after seeing him and I went down hill after that. He has mentioned tocilizumab to me! I have virtually been on 15mgs of pred. since then. Every time I try to drop I seem to get a relapse but I perhaps tried to drop a bit quicker than usual. I had also had a booster of 125mgs before going on holiday in July.

I have been away in USA - wobbling around -for 6 weeks and have just got back. I tried ringing his secretary today but she's on hols until end of September - perhaps he is as well! I was then advised to contact another consultant. However you and I know how good Rod Hughes is so I will try and hang in there until I can ring at end of month.

Kind regards,

Ian

[Cheshy72]

Hello everyone. I have the classic symptoms of PMR with shocking pains in my shoulders and arms. Can hardly get dressed in the morning etc. This has been for almost 10 weeks but my blood tests have shown no inflammation whatsoever. My Doctor was perplexed and I was shocked as he is reluctant to treat me with Prednisone without a firm diagnosis. I am living on pain medication. Something has to be done. Cheryle

[PMRpro Ambassador in reply to Cheshy72]

Up to 20% of patients with PMR have been found to have ESR levels that are within normal range. Most authorities feel that CRP is mostly raised - but I don't agree, there are at least 5 people on the forums with PMR/GCA who have perfectly normal levels of both.

It never ceases to amaze me how doctors won't try a week of pred as described here:

rcpe.ac.uk/sites/default/fi...

to see how you respond. If he has ruled out the other things as described here:

uptodate.com/contents/clini...

then he could assume PMR as a likely option. If pred works at a moderate dose (15-20mg) the answer is fairly straightforward.

Show these two papers to your GP and ask him if you can try a week or two of pred. If it works you are at least pain-free while he thinks of other things. Pred is far less dangerous than long term pain medication - which doesn't work in PMR anyway, pred is the painkiller here - as described in this recent article:

practicalpainmanagement.com...

One of the authors is a top expert in PMR, involved in drawing up the guidelines.

If your GP won't accept evidence from the experts - it is high time you found another GP and at the very least, after 10 weeks of symptoms, it is time for him to refer you.