I was diagnosed in June. I've probably had PMR for about a year before. My doctor wants to treat with injections of depo medrol. I had an injection in June, he said it would probably last 6-8 weeks. Well, it lasted three and I did not have the money to go back until this past Monday. I was in a lot of pain by then. I got another injection and he gave me a prescription for prednisone, but said he only wanted me to use them if I could not come back in for an injection. He said if I have to use them to only do a 9 day burst, in which I would have 40mg for 3 days, 20mg for 3 days and 10mg for 3 days. He said after that if pain returned in less than 2 weeks I would have to get in to see him for another injection. This is so different than anything I've read that I'm wondering if I need to see a rheumatologist, or is this just another approach. I've read all the articles, etc. that the different forums point to. My doc says he is concerned with the side effects; that the prednisone will help with the pain but "make me miserable" and that is why he doesn't want to prescribe it.
What do you think?Hi spotshouse,
Go see a rheumy! There are no guidelines anywhere that suggest that sort of therapy with steroids for PMR.
If you have PMR (as opposed to GCA) you will need a dose of not more than 15mg (absolute max 20mg) to start with and then can taper down to a dose that keeps the pain at bay which should be considerably lower than that. True, some people are made miserable by having to take steroids, they don't like the weight gain, the moon face, the furry face, some people have nasty side-effects, but they are in the minority. I had a furry face for a couple of months but it went away and the only real thing is it is difficult to lose the weight I put on before diagnosis when I couldn't do anything for pain. Until you try taking them you don't know how you will be affected.
As to being miserable on steroids - what does your doc think it is having the pain of PMR? Especially if you have to work. I've been on steroids for just over a year, I was miserable BEFORE I took pred - now life is worth living. There are still things I can't do and I still et tired but no, for me life on steroids is not misery! If I were being cynical (
good luck,
MrsE
I gotta agree with MrsE on this one Spotshouse. When I first was dx's with PMR my pain management doctor did the pack like you have. I felt great on the higher doses but by the time I got to 10mg the pain came back with a vengence and that is all I had until my next visit.
I made an appointment with a rheumatologist and started on 15mg daily, she wouldn't go any higher because I am small framed and only weighed about 125lbs. It's been about 4 months now and I'm at 12.5mg daily but also am taking methotrexate once a week. She thinks this helps with the tapering. I haven't seen any difference since starting the mtx but she is bound and determined that this is the way to go.
Do make sure you taper slowly. I was trying to taper 2.5mg at a time and got down to 10mg but my body almost went into a shut down mode. I got so weak that all I could do was lie down and my head wouldn't work either. My thought processes were all confused. Ended up going to Urgent Care and that is where they gave me a shot of depomedrol and I also increased my prenisone back to 12.5mg. After a week I was still very fatigued so I had to go up to 13.25 for awhile and this helped me get back to normal. I'm now tapering 1mg at a time. That was a scary situation and not something I want to do again.
Prednisone is very inexpensive even without insurance. I do have the moon face but haven't noticed any other side effects. It did make me feel anxious or jittery at first but that went away. Do take them with food though to alleviate stomach issues.
Good Luck on your PMR journey!!!!
I'm told by some ladies that they have no wrinkles whilst on steroids! Given how much some people spend on fillers to achieve that it might seem like a positive aspect of taking steroids . Just a thought - after all a good laugh never hurt anyone!
Russellcat - the 15mg dose is standard whatever you weigh (I'm rather more than you and I started on that too). It is because steroid dosage isn't worked out on an amount per kilo weight as many drugs are, it's based on the area of your skin! And that doesn't vary as much as you would think. Don't ask me why, that's how it is!
On my original 6-week course of pred at the very start I had 2 weeks each of 15/10/5mg per day. The effect kicked in within 6 hours, I was pretty much OK on 10 and had a bit of pain in my feet at 5mg but at the end all the pain was back within 48 hours. I retreated to bed in tears! I've been stuck at the equivalent of about 8mg/day at present but I have few side-effects, no nasty scares like yours - that must have been awful - and a minimum of wrinkles
good luck with your taper this time - remember, any pain that lasts more than a week, go back to the previous dose you were fine at, and didn't you say over on the other thread you're about to get a new doc? all the best for that too,
MrsE
Spotshouse
Just a quickie - go to www.pmr-gca-northeast.co.uk and under Useful Information look at the British Society of Rheumatologists guidelines (issued June 2009) on diagnosis and treatment of pmr.
Then get to see a Rheumatologist pronto.
As other people have said, elsewhere, the UK seems to have a better handle on pmr than the states. There is also a National Medical Foundation located in Arizona who run support groups and give information out on both PMR and GCA.
PS Tell your Doc that pred can also give you highs as well as lows when first on it - I knocked doors out of windows the first month then hit a downer. It all balances out and side effects affect people in different ways and none of us get them all.
Good Luck
Sorry wrong website address.
www.pmr-gca-northeast.org.uk
Thinking of my tea and suffering from CRAFTS (cannot remember a flipping thing)
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