Confused and Discouraged

[Pinto24]

Been dealing with non-stop pain for 3 months! At first just intense in both Shoulders and 4th finger of left hand (so weird). Then back of knees and front of thighs along with elbows, but sholders & knees most intense.My blood inflammation markers were all normal so Dr did multiple tests. Meanwhile I was in agony trying to manage with 10mg or 12mg methypredisone (regular prednisone doesn't work for me; = 12 to 15 prednisone) I split the dose 1/3pm & 2/3 am out of am pain desperation. No sleep issues so far.

4.5 weeks ago she reluctantly started treating me for PMR since all else was negative; increased to 16mg (=20mg prednisone) and said to take for 2 weeks. I did well (not pain free but tons better and hopeful)

I thought 4mg taper was too much so did 14 ... seemed ok so tried 12mg but horrible symptom returned. Went back to 14 for rest of the 2weeks, pain seemed tolerable at first but only gotten worse. Pain has gotten so hard plus now hands are stiff and weak too... plus fatigue increasing.

My Dr thinks I should start on 10mg this week but I went back to 16mg yesterday. I hate feeling gittery and shaky but the pain is worse.

I havent told my Rheumatologist b/c she said at the start if I can't taper steroids smooth and quick she want me to add methotrexate or a biologic UGH! I do NOT want to add either. It seems more drugs with more side effects will not be helpful. I don't mind taking Methotrexate but not at the same time as large dose of steroids. (Have taken it in past for RA -in remission; it worked eventually but made me feel horrible)

Instead I think I just needed to be on 16mg (=20 prednisone) Longer than 2 weeks!!.. like at least 4 weeks.... though that's kinda scary as I don't want side effects.

So confused now. Should I start over and do 4weeks on 16mg or just 2more weeks?

I already feel "drugged" and don't want to add more!!

Sorry for such a long post but hard to explain....Any body have advise?

[PMRpro Ambassador]

Hi and welcome! I assume you are in the USA?

Is she sure that this is PMR - why isn't she considering that possibly the RA is no longer in remission?

However - that is a rather low dose for managing PMR, 15mg pred is quite low, 20mg is better, so 16mg methyl pred woud be the right dose. And you need enough - too low a dose just doesn't work - and then you need it for long enough to get the inflammation under control. You are quite right, you almost certainly need to get 16mg for at least a month and then taper by not more than 2mg at a time but if you can manage longer and then less, that would be better. They are always in such a hurry because they are so scared of pred - and in the end the patient ends up taking more, not less!

If MTX made you feel ill before I have every sympathy - made me feel awful and I only lasted a month!! But the biologics for PMR in the USA do seem to work quite well and also seem to have few side effects so if your insurance covers them, it may well be worth trying. I have been on Actemra for over 2 years - with absolutely no problems at all.

[Pinto24 in reply to PMRpro]

Thanks for the welcome, for reading my long post and for your helpful reply. Yes, I'm in the USA.

Dr kept thinking it was my RA but I have zero RA presentation. No swelling or my other normal symptoms and it feels completely different from RA. However, we both acknowledge I could have/be getting RA symptoms that the steroids are masking.

I prefer MTX to a biologic. MTX totally controled my RA, no symptoms and no inflammation makers but after 10 started liver issues. Dr said RA would come back if I didn't take something so she talked me into Humira.

24hrs after 3rd shot I got bad shoulder pain but dr to keep going. 24hrs after 4th shot shoulder pain intensified 100x and the history zi started before started.

Discontinued Humira and Dr thought it was Lupus or drug induced lupus. She checked for that and much more but all has been negative. She says she's still not certain of PMR but symptoms and response to steroids "seem" to indicate.

I tolerated MTX pretty well and was on 20mg for 9mo, my liver issues weren't super high so she said we could try a lower dose with frequent monitoring because I'm horrified by biologics now.

I have a history of getting the rare side effects no one else gets (ie: Humira) Side effects for biologics are pretty scary. MTX side effects aren't great either which is why I want to try longer on the right dose of steroids before adding anything.

I look for RA symptoms all the time but absolutely nothing. This feels so much different.

[Pinto24 in reply to Pinto24]

That was supposed to be "after 10 months on MTX I got liver issues "

[PMRpro Ambassador in reply to Pinto24]

If you are aware it "feels different" , that is good enough for me! If you were good on MTX then it would probably be worth trying a low dose - sometimes 10 or 15mg works really well in PMR without going to the usual rheumy dose of 20-25mg and the effects are dose related.

Hope you can sort something out.

[Dydee]

Wow, you have really been through the ringer. I am also in the US and other than thyroid issues PMR is all I had to deal with but docs took over 9 months to diagnose it. Then they were apparently not completely familiar with treatment procedures and put me on 40mg Prednisone for 3 days, then 30mg for 3 days then 20 for 2 days and 10 for 2 days. Well, it sure did the trick, absolutely no pain. Stayed on 10mg for months before trying to taper then did a VERY slow taper to 7.5mg before symptoms returned. Now 4 years later my VERY SLOW taper has gotten me safely to 1mg. It sounds like you have a doc like my original rheumy who wanted me off really quick. It just doesn't work that way.

[dougy8419]

Johns Hopkins/ Baltimore put me on 200 mg of celebrex when I was at 4 mg of pred (after 3 years) trying to taper. It worked and after 3 years off pred, I'm thankful. Don't know if it may help you ,but I did not want to go the methotrexate route either. Prayers to you.

[PMRpro Ambassador in reply to dougy8419]

Celebrex is an NSAID - not recommened alongside pred - and if it worked on your pain it is very unlikely it was pain due to PMR.