A month at 23.5 (up from 17.5), got me a couple of good days and now back to intense pain and muscle spasms.

[Wallysma]

WHAT THE HECK? What should I do? Do I go up by 5? After starting that dose it took 3 weeks for me to feel a good improvement but I hung in. Was really happy when it happened. 2 good days and then.....BAM!Now I am back to PMR high pain levels. This keeps happening. It doesn't make sense to me. I feel like I'm on a "non-merry" go round. I am at a loss. This time not due to my rheumy forcing a taper...I was plodding along. My muscles are a mess. I have torn 3 different ones and my joints are painful now like my shoulders, or like my knees...a lot worse. Is that the PMR norm?

I realize we have been here before but this is a tad different in my view. At least to me. Or maybe I just don't know what to do. Any idea of what this means?

Grateful for any ideas.....

[PMRpro Ambassador]

What did you do on those good days?

Mind you - I am very sceptical this is "just" PMR.

[Wallysma in reply to PMRpro]

I.didn't.do much because I could hear you whispering in my ear.....lay low! Seriously. So something else is stopping the improvement? Like RA? If that is true what should I do with pred? It is depressing for sure.

[DorsetLady PMRGCAuk volunteer]

“Grateful for any ideas.....”

Yes, you need to get medical advice, as PMRpro says sounds more than ‘just PMR’… vey easy to blame that when it’s not….

[Wallysma in reply to DorsetLady]

I am going to rheumy on Thursday but I like to get pred advice from you all. My PMR is bad....the muscle spasms in my back/hip.area particularly annoying. It was so great when it was reduced and then gone! Anyway ok. I am going to guess it is my 2nd flare of RA.....😔...first was in 2015...but I assume the pred still stays obviously. I know I am having fiber flares but those I can handle as of now. Not surprised about that. Ok...thank you.

[PMRpro Ambassador in reply to Wallysma]

I think the muscle spasms aspect needs to be treated as something separate from the PMR - if that is what is causing the pain, then increasing oral pred isn't usually the best way to sort it out. You are a complex patient which makes it harder to tell one thing from another - you need what a friend calls "A True Detective" doctor! Nit sure the one you have is ...

[Wallysma in reply to PMRpro]

I thought the pain was PMR because it's in the exact location as explained everywhere and then when I am on pred and things go well all of that PMR pain goes away. I was thinking the muscle issues...not the spasm but the weakness and tearing is pred and age. Thanks.

[PMRpro Ambassador in reply to Wallysma]

Mmm - because myofascial pain syndrome can be part of PMR it can be difficult to distinguish one from the other and some effects are the same But MPS responds better to targeted approaches than to just more pred.

[Wallysma in reply to PMRpro]

Such as.....so maybe not even PMR or both....sorry...I just want as much good info as I can get.

[PMRpro Ambassador in reply to Wallysma]

Yes, I do realise that but for us it is very difficult to know, you need a good clinical exam, some blood tests, maybe even imaging (x-rays and scans). It is obvious (to us at least) that whatever is causing your problems, it isn't a straightforward PMR, it may not even be PMR, it may be a polymyalgic presentation of something else. A good doctor who asks the right questions is needed.

[Wallysma in reply to PMRpro]

Ok. I am waiting on labs including RA tests. I have been thinking a scan or x-rays might be needed. I will say at first I didn't think it was PMR but then as things settled it was textbook....but yes it's all strange. I need a break for sure.and I need my arms back and my back to "knock it off." That's what a need. Too many months of up and down. You all have been so helpful. Thank you for the conversations. I don't know what's next but should be interesting.

I wish my old rheumy had not retired because of covid. You all would love him. Amazing diagnostician....expert in fibers which in DC was so needed. But alas he left early. I was so spoiled by him.

Ok have a good evening. 🖐

[PMRpro Ambassador in reply to Wallysma]

Don't suppose you have any contact with him? He knows you - he might have some pointers that would be useful.

[Wallysma in reply to PMRpro]

No....I wish I did..........I don't know where he's living.

[Wallysma in reply to PMRpro]

Hi...so it seems that the pred is not really helping...right? So could that mean I could start reducing to get off of it? If that were true, what would that reduction look like ....if you know. Does not have to be as slow or low? Or is that well just stupid....🤓 I am thinking through.various and assorted...not going to do anything. 🤡

[PMRpro Ambassador in reply to Wallysma]

A reduction to get OFF pred is different - you aren't seeking a lowest effective dose, all you have to deal with is the steroid withdrawal problem which is similar to what you already seem to experience. Down to 10mg is straightforward enough and can be quite quick. From 10mg there is the adrenal insufficiency aspect so you slow down somewhat.

But it is something to discuss sensibly with your doctor - because as it is you are getting nowhere.

[Wallysma in reply to PMRpro]

Thanks....I thought that was how it might go....I am glad I asked. I just want to be ready for my appointment so I am thinking through what might be.

[PMRpro Ambassador in reply to Wallysma]

And make notes - as bullet points.

[Wallysma in reply to PMRpro]

Yes...have to. Did you see Pameliza post below? I think that might be what's happening....I assumed the muscle tears were the pred....but the back spasms? ...interesting. of course I wonder what the hell are we gonna do...I can barely move. Anyway...thank you for the info.

[PMRpro Ambassador in reply to Wallysma]

Have you tried magnesium supplements for the cramps? What you have sounds similar to my myofascial pain syndrome - it can be dealt with but does have to be targeted and the answer isn't always a pill.

[Wallysma in reply to PMRpro]

Yes. I started taking magnesium a few years ago. But I had to.go off of it for 10 days recently because of the antibiotic I had to take. I just think the timing of being in a good place for a few days and that tanking so fast is well just interesting. Anyway...I am back on it now. I just want to get on a plan to fix things.....whatever it is.

[piglette]

Have you taken a pain killer to see if that helps?

[Wallysma in reply to piglette]

Ms. P...hi! I have been on painkillers for years. So I take hydrocodone and tramadol as I have been doing. The issue is as you all have taught me the PMR pain and problems are different from my other stuff in location and type of pain. So on the one hand I can tell what is what...and when the pred works for a day or so those pains reduce or go away. I have thought about testing with a slight increase in the hyrocodone.to see if it helps. But I have to be careful.

[piglette in reply to Wallysma]

Do you take the same amount of painkillers all the time? I was going to say you could cut them out for a day and see if things get worse? Rather drastic though.

[Wallysma]

Not sure my tits are up to that. LOL I would rather increase some and see. I think stopping both of my main pain meds could be really bad.. stopping them completely after all these years. But I appreciate the idea....because often there are things to try that might not be obvious to one person. Thank you.

[Pameliza]

I had very bad muscle spasms from high dose prednisolone. I was diagnosed with GCA and PMR. I lost kilograms of muscle very quickly and suffered a lot of pain in my back particularly. I went from fit to ending in a wheelchair and couldn't climb into bed for a couple of months. As my dose went down I recovered.

[Wallysma in reply to Pameliza]

Thank you for replying.....I have wondered about that issue. I figured the muscle tearing was pred...but I had not thought of the back pain...spasms because I thought it was PMR. Thank you for the info. I am glad you recovered.

[Wallysma in reply to Pameliza]

Hi....I forgot to ask... what did you do once you realized the pred was the issue? How did you connect the dots on that? I hope you are doing better now. It's so crazy!!

[Pameliza in reply to Wallysma]

I had a dreadful time with side effects from prednisolone in general. I suspect I had undiagnosed PMR for quite a while. My GP didn't recognise it until I had GCA symptoms and biopsy. The muscle problems started quickly and the rheumatologist didn't seem at all surprised or concerned. My back spasms were awful. My ion balance was always good. ( I do take magnesium) but one hospital initially thought my kidneys were failing because of all the creatinine etc. All due to muscle breakdown. Even my diaphragm was affected. Muscles in my arms and legs twitched for hours at a time. Two years later when nearly off pred, I had symptoms that suggested I was losing my sight. In hospital twice, I received gram infusions of prednisolone. Within days the twitches started again and then the back spasms. Luckily it wasn't GCA again, Prednisolone levels were reduced fairly rapidly and the muscle problems went away again.

[Wallysma in reply to Pameliza]

Wow....so you stayed on pred for 2 years then......did you reduce it slowly or....not sure what you do with GCA. It's crazy how awful this stuff is. So debilitating. I actually have no clue what is what at this point.

[Raewynne]

Are you taking magnesium. IT has helped me tremendously with muscl stuff.I have been getting terrible tendinitis in my ankles lately .I am finding old fashioned Tiger balm to be very helpful rather than filling myself up with more pain killers.I think prednisolone lowers our immune system and whatever weaknesses we have they come back to haunt us.Well that's been my experience. After a while it seems to improve. We could write a book couldn't we.😊

[Wallysma in reply to Raewynne]

I would write a book if I wasn't so tired...lol. yes I do take magnesium but I had to stop for.10 days because of an antibiotic. I am back.in it now. Maybe it's another reason things tanked last week. Thanks...take good care.

[HeronNS in reply to Wallysma]

Apparently magnesium can be absorbed through the skin. Epsom salts bath (even a good foot soak) will help.

[Wallysma in reply to HeronNS]

I take it so I am good.....can't remember when I started but I think it helps. Thanks.

[HeronNS in reply to Wallysma]

Just for if you have another time when you can;t take it orally for some reason....

[Wallysma in reply to HeronNS]

Yup!

[Ps99s]

Had a flare after 7 months off started on 20 , no pain control then 25, then 27 1/2, then 30 that is wher pain controlled all day each day then stayed ther 3 weeks and then tapered by 2 1/2 every 3-4 weeks. Now at 15 andwell controlled. Will continue to taper by 2 1/2 per month until at 20 . Then will taper by 1 mg per month all they way down . Did this first go round and will do it again with hopes that it will be gone after. At least this is what advised by the three different rheumatologists here in Washington state and in Alaska. All of same opinion and it seems to work .

[DorsetLady PMRGCAuk volunteer in reply to Ps99s]

“All of same opinion and it seems to work”.

But, if I’m reading correctly it didn’t work or you wouldn’t have flared.

It’s not a matter or reducing come what may to zero -it’s a matter of reducing to find the lowest dose that controls your illness on any given day. Go below that dose and you flare. …..and no-one can say when your illness will go into remission -no matter how eminent they are.

Maybe have a read of this - healthunlocked.com/pmrgcauk...

[Wallysma]

I hear you. I have gone back and forth on this....is it that I have never gone high enough? Or.....something else is going on. It's so hard to know. Thanks for letting me know. I hope things continue on a good road for you.