This forum has been a godsend for me. Was diagnosed with PMR, May 2014. GP was wonderful in diagnosis. However, in March of 2015 I reduced too quickly. Right hand pain hit me so bad I had constant throbbing. Went to 40mg Predisone and it got rid of constant pain. Some aches when using-not bad. When to new rheumatologist. Sent me for blood work and lots of X-rays. Found no arthritis. He immediately wanted to put me on Methotrexate to get me off Predisone. Picked up the perscription and first line in information said "warning-side effects my be fatal". Doesn't say that with Predisone. Read forum and decided to follow "dead slow " reduction instead. I'm on 20mg, 10 mg am and 10mg pm. Four days ago I took 10mg am and 7.5 mg pm, and now 10, 10 for three more days. Question? After this how should I reduce. 7.5 mg am or just work on pm reduction? By how much?
Dont know what I would have this without your help. Would probably have had hand surgery if I hadn't read that hand pain happened with other PMR sufferers. Have a little hand pain? One 200mg ibuprofen and I can play golf and tennis with no problem.Thanks again
Why are you on the split dose? And why 2.5mg steps? Not criticising, just wondered because that has some bearing on where I'd suggest going next.
I don't get it - if a patient has a diagnosis of PMR and no evidence of arthrtitis why want to use methotrexate? It may potentiate the pred dose (i.e. you may get the same result for a lower dose though by no means everyone is so lucky) but it won't replace pred entirely in PMR.
Roberts I hope things are now improving. Have you ever been beloe 17.5mg
I am still new to all these Pred medication dosage & reduction regimes, but for all the research & reading I have done I have not come across anything that comes near your way of handling the Pred dosage & step down periods you quote. The am/pm thing is a new one on me + I'm not to sure about the 200mg of Ibuprofen being a wise move. It sounds in reality that you are out of control with your medication & that you should regroup & revert to a more stable regime to get back to the just prior to March 2015. I'M sure there would be a few ups & downs to achieve that situation, no pain no gain!!! I always try to take a pragmatic approach to such situations.
Sorry text thing went wrong. I meant to say Hi Roberta, have you ever been below 17.5mg? It was just that you seem to have been on quite a high dosage over the last year. Also it is not a good idea to mix Ibuprofen with steroids. I take all my steroids in one go not split, but it may work better for you splitting them.
My doctor told me in the beginning that I could split the dose.
I tried it because i had a really weird dizzy spells when I take the
upper amount all at once. When I did split dose the dizzy spell went away.
I can take l0mg at a time but when I get into the l5mg or higher
the weird dizzy thing happens...
However having said that guess not all agree with what worked for me
and might be better to ask your doctor about it...
Thank you Eileen for your response. I have so much respect for your responses to others. Want to reduce but wasn't sure of amount to reduce. Have 20mg, 10mg, 5m, 2.5mg. Probably should have done 18 total but what combination? In Nov 2014- at 10mg total.. Dec-7.5, Feb 2015-5mg, Mar-2.5 (big mistake) too eager to stop the Pred. With hand pain went to 40mg from May 11-26, 30mg May 27-June 1. Rheumatologist said to go to 20mg am but had some pain overnight. So I split it and it was much better. GP says no ibuprofen but Rheumatologist said that amount OK. As you can tell not getting much medical guidance locally. Looked at Bristol plan and made a pink and green calendar. Thank you again.
Your rheumy may think a small amount of ibuprofen is OK - but even small amounts can cause trouble for some people. One lady was told by her GP to take ibuprofen for early PMR (no pred at all) and after 3 doses ended up in A&E with a gastric bleed. Paracetamol (tylenol) is better - if it works. I might as well take M&Ms.
The usual suggestion for splitting the dose as you are doing it is about 2/3 in the morning, the rest in the evening. Can you not get 1mg tablets - they would make life much simpler? But cutting a 2.5mg tablet would give 1.25mg steps and if you alternate higher/lower doses from one day to the next that would allow total doses of .65mg difference. You don't HAVE to have the same dose every day.
However - if you can cut the 2.5mg tablet you could then use my "Dead slow and nearly stop" reduction to reduce by 1.25mg steps of the total dose over a few weeks.You can always slow it down by repeating steps. Don't worry about the absolute figures - find a dose that is easy to compile with what you have and then go down by a fraction of the 2.5mg tablet.
Your problems before will have been the size of the steps - the 5 to 2.5 was a 50% drop, a massive percentage for your body to cope with. You would probably have done OK with a much lower dose than 40mg if it is PMR, the advised top dose is 20mg and the high doses will have got your body very used to the large doses. Now you have the weaning problem.
If pain reappears the day after you reduce it will almost certainly be steroid withdrawal pain - hang in there and rest plenty and it should fade over the following week or so. Only worry if it gets worse over time. If you can't do tiny drops then clear the decks and keep a low profile to give your body a chance to get used to the change. But a single day of a drop down followed by a few days of the old dose really should make it not too bad at all.
It's fine to experiment a bit - we're all different and get different results. Hope this makes sense. I know what I mean but it is so difficult to explain!
Roberta, my doctor told me to split the dose when I had vertigo on 15mg back in May last year and it did help. However the real improvement came when I got down to 9mg. Now at 8mg using Eileen's slow method but staying there for a bit longer before taking the plunge to reduce to 7.5. Hope things start to improve. Kay