How to handle a flare?

[judyb100]

I was down to 7.5 mg of pred until a few weeks ago. Was so happy to be reducing and feeling quite good even though I was unusually tired. Then I caught a bad cold that lasted for a couple of weeks. After that, the old dreaded PMR stiffness reared its ugly head. I started taking more pred--first 8.0,, then 8.5, then 9.0, then 9.5, then 10, then 10.5. And I still have the stiffness. Should I have upped the pred by much more in the beginning? Before I caught the cold, I had almost no stiffness, even first thing in the morning.

I've had PMR since 11/2016 and started at 20 mg. Thanks again to this wonderful forum!

[piglette]

I usually go up by 5mg and then reduce if everything is OK rather than going up slowly. I just find it works better for me. You can reduce quite quickly to the correct dose with no problem as you are on it for such a short time.

[judyb100 in reply to piglette]

Thanks, piglette. It's still early morning here in the U.S. and I haven't taken my pred yet. So this morning I'll try 12.5 since my slow method hasn't worked at all! I hope I'll be able to reduce quite quickly, but I'll just have to see what happens. This PMR really has a mind of it's own.

[DorsetLady PMRGCAuk volunteer in reply to judyb100]

Hi,

As piglette says, most go up by about 5mg to nip it in the bud quickly.

Hopefully the 12.5mg should do that, give it a few days, maybe up to a week and then come back down. I would suggest maybe to 8mg, just slightly higher than you were - just because you said you were very tired, and that probably due to the fact that you are just on the cusp of your adrenal glands needing to waken up. They need a bit of help sometimes, so 8mg maybe be better than 7.5mg. Doesn’t sound much, but as we know sometimes it’s all the difference between success and failure!

[judyb100 in reply to DorsetLady]

Thank you, DorsetLady. I just took my 12.5 this morning and I hope to feel better. I'll know better what to do next time--although I hope I don't have a next time!

[DorsetLady PMRGCAuk volunteer in reply to judyb100]

I hope you don’t have a next time too - that’s why we all blat on about reducing as slowly as you can, especially from about 8mg down.

And don’t every be reticent about asking a question...even if it’s been asked before. There are always new people on the forum who may be thinking the same thing, so you’re helping them, and there are other people who have been through what you’re going through, so more help!

[judyb100 in reply to DorsetLady]

Thanks again for all your time spent answering our questions, even when they're repetitive. You must be spending a good amount of time helping all of us confused PMR/GCA sufferers, and we appreciate it immensely.

[DorsetLady PMRGCAuk volunteer in reply to judyb100]

It’s my way of saying thank you to the charity and those that helped me in the early days.

[PMRpro Ambassador]

Most experts would say add 5mg to the dose at which the flare happened. If it works you can stay there for up to a week and still drop back to the previous dose without tapering.

But always bear in mind that the infection may have prodded the activity of the autoimmune part of the disorder and woken it up - so you MAY need more than you did before. The unusual tiredness is almost certainly due to your adrenal function not keeping up with the reduction - so don't push too reduce to fast from here.

[judyb100 in reply to PMRpro]

Thanks. As you said, I'm afraid that the infection may have woken the sleeping PMR. I'll plan to stay on the higher dose for a week and then try to drop down. I'm having eye cataract surgery on Monday, so I maybe it's good I'm on the higher dose at that time.

Thanks for your reply. You and our other wonderful experts are so kind and patient when you get asked the same questions over and over! I didn't want to bother anyone with yet another flare question, but it's a little hard to search for just the right information on this web site. (That's is my one and only complaint--this is the most helpful and supportive online forum I've ever seen!)

[judyb100 in reply to PMRpro]

Sorry--I shouldn't have said that it's hard to find info on this web site. I just looked at the Home page, and on the right-hand side under "Related Posts" is a question about flares that's very similar to mine. I don't know why I didn't see it.

[PMRpro Ambassador in reply to judyb100]

Hehe - if you thought this site was bad - try the patient.info one for size. Their search function is so useless you are better using google to find something on it! It really drives me nuts.

But every question IS different - which is why I post an individual response.

[judyb100 in reply to PMRpro]

You are so incredibly helpful, and I'm still amazed that you provide customized, individual answers to so many people. You (and others) know SO much more than my rheumatologist. You must spend quite a bit of time every day on this web site.

[PMRpro Ambassador in reply to judyb100]

We do! It's a part-time job We know more than many rheumatologists simply because we have been there and walked the walk. And over the years have heard the experiences of probably thousands of members on the forums from all over the world.

[Lanakay in reply to PMRpro]

I check my email first thing every morning. It helps me so much to know I am not alone with this damn PMR. You folks always make me feel better. I am on a road trip now and arrived in Memphis , Tennessee last night. After nearly twelve hours on the road I stayed in our hotel last night and rested while my daughter and grandchildren went to my grandsons for dinner. This morning I feel rested and have a bus tour coming up in a couple hours. This is my first experience traveling with PMR so I was apprehensive but so far so good. Thanks for all the good advise everybody.