Alternative to Prednisolone

[suszannah]

Hello all, wondering if anyone can advice me please? Diagnosed with GCA in 2013 managed to get off pred for about 3 weeks in 2015 but needed to go back on as visual disturbances and fresh diagnosis of PMR. Most of last year I was on 10mg of Pred and also this year, I managed to reduce to 9mg eventually but when I went to 8mg had visual disturbances back ...so after speaking on phone was told to go to 30mg for 2 weeks and then reduce by 5mg per week till next appointment in June. I am back to 15mg as my CRP and ESR have gone up since I started reducing again.

At my last appointment 2 months ago my Consultant mentioned putting me on Methotrexate which I really do not want to do ...are there any other meds used for GCA apart from that? anything less damaging to the liver and still be able to have the odd few drinks now and again?

I still would like a life outside GCA, the only problems I get are visual disturbances and I'm one of the lucky ones so far that has not had the headaches ...

Thank you in advance for reading my post

Susz

[christine2715]

1 am taking Azathioprine as an alternative. Only been on it a week. Am told it was because it would not affect my liver as my liver function test wasn't quite perfect.

[suszannah in reply to christine2715]

Thank you Christine i will Google it no idea why Pred is only working for me at higher doses it was ok before? ??

[PMRpro Ambassador]

The mainstay of management of GCA is still corticosteroids. None of the so-called "steroid sparers" will replace pred altogether - they may (and it doesn't always happen) improve the result you get from a given dose of pred by changing the way the body processes it so you can get away with a lower dose. There is mixed evidence - 3 studies for PMR were done in the past, one showed an improvement, one was inconclusive and one showed no improvement. The most recent guidelines for management of PMR suggest trying it if the patient is in agreement - but I know several rheumies who feel it has no place in GCA at all because the risks with GCA are so much greater. In PMR you may be a bit stiffer - if GCA comes back with a vengeance there is far more at stake. I have a friend who is using methotrexate for PMR (it seems to work very well for her although she is still on a low dose of pred) and who drinks in moderation: I think her doctor said one drink a day and not on the MTX day. It very much depends on the doctor I think.

A clinical trial has recently finished for tocilizumab in GCA - the rumours are it looks very good but no results have been published yet. Pilot studies did look very promising - but there have been other pilot studies with DMARDs that looked hopeful but in real life the feet of clay appeared. It is used for RA but has not yet been approved for GCA so that is still a bit in the future. There are a couple of ladies in the USA who are on it for GCA (Actrema there) but even there the funding is a problem - insurance companies will only reimburse treatment of the approved conditions or you have to find other funding. To my knowledge that isn't an option in the UK.

The underlying autoimmune disorder that causes the symptoms we know as PMR or GCA probably cycles in activity, waxing and waning over time - and at a period of low activity you may be able to reduce. Then the activity increases again and you need more pred to manage the symptoms it causes. That is all pred does, manage the inflammation that causes the symptoms, it has no effect on the autoimmune part which is why the fatigue and ill-feeling may continue even though the blood tests look fine. Often if there is a flare then it is more difficult to get under control and then to reduce the dose again. I've just had a flare, probably due to a urinary tract infection and/or a viral chest infection (my husband had something similar at the same time). I had to go back to 15mg from 5mg and have only managed to get to 11/12mg so far after nearly 4 months. The specialist isn't bothered (a medical consultant with a special interest in PMR/GCA rather than a rheumy) and tells me to take my time reducing.

Is it possible you have something else going on as well? It isn't unusual and both CRP and ESR are so non-specific you can't say it is just the GCA - chest infections notoriously raise CRP as do renal problems and they may also affect your immune system and make the autoimmune bit worse. Then it is the GCA, of course, but dealing with an underlying unrecognised infection may reduce the GCA activity too.

[suszannah in reply to PMRpro]

Thank you PMRpro for the detailed reply I do have a sinus issue going on which may need an operation also a snapped tendon in my ankle which may also need an operation ( falling apart slowly)I have looked at information about Azathioprine and also Methotrexate and don't like the option of either cancer or liver damage

Is there anything on the market less dangerous?

I need to be armed before my appointment on 10th June

I don't feel ill as such just the side effects of Pred irritability, tiredness etc put 2 stone on which I managed to lose with weight watchers.....the PMR isn't bothering me at the moment, my white cell count is all over the place, Its just lost not knowing what's causing all this.

[PMRpro Ambassador in reply to suszannah]

"Is there anything on the market less dangerous?"

Well, no, that was really what I was saying in the previous post. Both the aza and the mtx are used a lot in RA, mtx is the first line approach, aza probably the second. Most people do well with them in RA - and remember that the side effects listed are everything that could possibly be associated with the patient being on the drug during the clinical trials plus those reported once they were in general use. Other DMARDs are kept for later - as their side effects are worse, but not worse than untreated RA.

I do understand your feeling of lostness - but you have to get past the "Why?" hurdle, at every level. It wastes a great deal of energy that can be better applied looking after yourself. PMR comes when it wants, it goes when it wants and very little you can do will change that. You can concentrate on the things you can control - you have already done so in losing weight and there are other places you can do much the same. Achieving acceptance is a great step forward.

You mention a sinus problem - has that coincided with the current problems? Are there any other things going on? Has anyone considered this might not be GCA/PMR but another vasculitis? Some forms involve the sinuses. Just a thought.

[suszannah in reply to PMRpro]

Thank you for reply and notice taken:)the sinus issue has gone on for about 3 years and only seen by ENT recently, example last year I had about 10 courses of antibiotics for it and so far this year about 3 I think may well be worth looking 8nto to see if that is anything to do with it...many thanks