GCA relapse

[Lara119]

Hi everyone

I have had pmr/gca for 4 years and after a long tapering came off the pred about 2 weeks ago. Unfortunately I have had severe pmr symptoms with gca symptoms as well (scalp tenderness, some headaches and jaw problems). The blood test showed my esr was 40 and I was slightly amaemic. My doctor says the pmr and gca are active again and suggests 10-20mg until symptoms are under control.

My question is do I go high or low? I have taken 5mg on Thursday morning and 5mg yesterday morning whilst waiting for results and then another 5mg yesterday afternoon once I heard.

I feel a lot better this morning and am tempted to go for 10mg but my husband is advocating the higher to make sure the gca is under control.

What do others take for gca relapses?

Many thanks

Elaine

[SheffieldJane]

Personally I would not take any chances. I am with your husband. Zap it at the high dose and once the symptoms have settled taper slowly until you find your best maintenance dose. Hope it settles soon. If not I would consider even higher. The inflammation is too dangerous to be allowed to spread. And yes, I know, I know. 🌷

[Lara119 in reply to SheffieldJane]

Thank you so much for quick reply. I think you are right but like you say it's so hard and disappointing to start again so high. Although I was on 60mg when I was first diagnosed.

I suppose it's just because I have always been tapering apart from a long sticking point at 15mg so to have to go up so drastically is hard.

[PMRpro Ambassador]

I agree with your husband - back to at least 20mg and preferably all at once. If it were "just" PMR it would be a different matter but the GCA symptoms mean you really can't mess about.

I had to go back to 15mg from 5mg a couple of times - and when I say I've been on pred for over 8 years you'll realise that is hard too. But it is far better than the alternative!

[Lara119 in reply to PMRpro]

Thanks. Yes I have decided to go high and see how that goes and take it from there. Onward and upwards - at least it is a condition that responds quickly to the medication. 15mg was my sticking point for a long while I would go down and have to come back up but I really thought I was good this time. Ah well next time!

[Orchid47]

Hi Elaine

The same happened to me. I have PRM /GCA for also 31/2 years now.

Started with a lot of pain on both shoulders a few weeks ago.

I was down to 3mg Predisone like last year in November.

I have increased Predisone to 10mg and my shoulders are still very painful, so I also think it is wise to try 20mg.

I am also increasing now to15mg

and I have now only PMR.

I know it is very depressing after reducing only 0.5mg a month's to start the whole journey again. As you see it happens to others as well.

Wishing you better.

Orchid47

[Lara119 in reply to Orchid47]

Hi there

Thanks for your support. Yes it's very depressing to have to start again but I am feeling so so much better now. Just managed to go for a lovely walk in the snow with my dog which I wouldn't have been able to do a few days ago.

I know it's crazy but I felt a bit of a failure but feeling so much better since I have joined the group and realised that sometimes a relapse happens no matter how slowly you go.

Let me know how you get on as we seem to be in a similar situation.

Hope you feel better soon

Best wishes

Elaine

[Orchid47 in reply to Lara119]

Hi Elaine

Thank you very much too for your support and good wishes.

I shall Keep you information about my progessing.

Rheumy wants me now to try out another Steroid sparing drug called Plaquenil, but I prefer to take only Predisone.

Can't get Acterma.

Only for People who are on 80or 60mg Predisone.

Speedy recovery and good luck.

Orchid47 Flow

[Telian]

I've always been told to go back the last dose you had no symptoms on then follow your doctors advice on reduction - good luck - it always works for me. I've been stuck on 3mg for 15 months now but so be it for now.

[Lara119 in reply to Telian]

Yes I think I got too complacent at the end. We are going away for a long trip after Christmas and I think I was so focused on being steroid free I took my eye off the ball. I should know better after all this time!

Lesson learnt that maybe some of us may never be steroid free but that's ok.

Best wishes to you

[PMRpro Ambassador in reply to Lara119]

Never say never - and if you are lucky you will be back to 5mg or so quite quickly.

[Lara119 in reply to PMRpro]

That's right! I took 15mg this morning to see if I hold steady on that with an option to take 5mg extra if gca symptoms return. As you say never say never and next time I will take that last few mgs at a snail pace!

[Lara119 in reply to PMRpro]

Had to take the extra 5mg as a precaution just now after jaw pain eating my lunch. Will see what happens tomorrow.

[Lara119]

Sadly I have had to go up to 30mg to get the gca under control but today is the first symptom free day thank goodness. Was going to take 30mg for a few more days but wondered if anyone knew if I could then try 25mg and then 20mg fairly rapidly or whether the tapering should still be very slow. To go from pretty much steroid free to this is not really what I wanted and I would like to get down at least to 20mg as soon as I can.

Would appreciate any advice.

[PMRpro Ambassador in reply to Lara119]

30mg is absolutely the bottom end of the range for dose to manage GCA. If it really is GCA then you need to stay at 30mg or at least a month - many people start at 40mg, often even higher - so 30mg really isn't a particulalry high dose. It is protecting your sight - no dose is too high for that.

No-one chooses to be on pred - you have a serious systemic illness. Please don't ignore that fact.

[HeronNS in reply to Lara119]

I haven't had GCA but I've recently had a PMR flare and I can tell you from experience that it's better to bite the bullet early in the flare and take enough to really get that inflammation under control again. The problem is if a lower dose doesn't work, and it hasn't in either of our cases, we end up taking more not less. So, please stick with the 30 mg for a few days at least, or up to a month as PMRpro recommends. Do not be tempted to taper immediately. You may then be able to taper relatively quickly down to 10 and a bit more slowly lower, but do be cautious.

[Lara119 in reply to HeronNS]

I will. Thanks for your support. How are things with you?

[HeronNS in reply to Lara119]

Touch wood things seem to have turned around the last few days, thanks for asking. Please keep us updated with your progress....

[Lara119]

Thanks for replying. When I was first diagnosed 4 years ago it took 60mg to bring the gca under control. Thought the relapse may need less. Having minor symptoms this evening so will stay on the 30mg for a month like you say with an option to go up to 40mg in the next few days if it doesn't completely clear. I think I am beginning to realise that there will be no quick fix.

[christine2715]

For me it takes months and months to get the Pred down so I am having a relapse at the moment and have gone for 7.5mg. I have taken this for 4 days so far and I must admit the GCA still not back in control. Seeing Rheumatologist on Wednesday so will hang on until then.

[PMRpro Ambassador in reply to christine2715]

Had you noticed this thread is over 5years old?