From zero to back to square one.!

[Sorop]

After having PMR for 8 years I finally was elated to have got to zero at the end of January having been on Pred and methotrexate.

In May after having blood tests because I was feeling achy my GP called me to say my CRP was up to 30 and it seemed my PMR had returned so was put on 15mg pred for a week and then reduced to 12 1/2 for a week then 10mg for a week and then 5mg to see if a short course would help. This did not and my levels and aches and pains continued. I was put on 7 1/2 mg which does not seem to be enough so have today taken 10mg but still feel very achy all over. I will ring my rheumatologist on Monday after the Dr referred me back to him but I am interested in advice from anyone as you have been so helpful in the past. Shoukd I take 15mg tomorrow or even more tonight as feel so stiff and achy.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this - are you sure it’s PMR if the trial didn’t help at all?

If a week at15mg didn’t help previously, not sure it’s going to make much difference over the weekend… but suppose it won’t do much harm until you speak to Rheumy on Monday. If it definitely is a return of PMR, sounds as if you might need 20mg to get a breakthrough.

I see you started on GCA doses at the very beginning .. do hope you don’t need as much this time around.

Please let us know how things go for you..

[Hulotsholiday in reply to DorsetLady]

Sorry to hear you news. I’m sure you’re very disappointed. It seems to be the nature of the PMR beast, lurking where and when least expected. I’ve had a similar experience. Got to zero once but it returned after a couple of months. I ignored it for about a month but had to go back on steroids. Got down to 2mg second time round and intended to stay there, but covid booster triggered a full blown flare. On both occasions I found the original 15mg dose wasn’t sufficient. I had to go to 25mg for a couple of days, then 20 for another couple of days then dropped to 15mg and started the whole taper again. Hitting hard with a high initial dose seemed to kick it. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to Hulotsholiday]

You’ve replied to me, but Sorop as author will see it anyway…

[Sorop in reply to Hulotsholiday]

Thank you so much that is very helpful. Sorry you have had to go through all this again. It is so disheartening to have to start all over again. Good luck

[Sorop in reply to DorsetLady]

Thank you, I have taken 15mg today and by lunch time felt better so hopefully I can take it for a few days and contact my rheumatologist for their advice.

[PMRpro Ambassador]

When symptoms return within a few months it often isn't because you have relapsed - it is because the underlying cause of the PMR was at a very low level and you thought it was gone. That last 1mg needs to be tapered VERY slowly! Over months, not weeks. The unmanaged inflammation builds up until there is enough to cause symptoms again. However - with that sort of scenario 15mg would normally have helped so it is a bit concerning it didn't and suggests there may be something else going on.

I do hope your rheumy is helpful.

[Sorop in reply to PMRpro]

Thank you. Unfortunately it was my rheumy who said to me ' I am going to get you right off the medication' and gave me a regime which obviously my body did not want to comply with. I had said to him that my mother had PMR and had to stay on a small maintenance dose for the rest of her life he did not think that necessary so I am not that confident that he is going to be very helpful.

[Sorop in reply to Sorop]

I was also on 12 1/2 metoject as well which was stopped soon after

[Sorop in reply to Sorop]

I was also on 12/1/2 Metoject once a week but that was stopped as well

[PMRpro Ambassador in reply to Sorop]

Hopefully he will learn that he isn't in charge - and that stopping pred and MTX soon after loses all the potential advantages there may be with MTX. If the PMR is still active - you need something. Occasionally MTX works brilliantly to suppress the inflammation - but you have to use it!!!