Hi again. If you have read my recent thread about SED rate going up and down, you will know why I am trying something out. Since reading the article Eilleen put up and your thoughts, too, I decided to take 30 mg of Prednisone for two days and see how I felt. Well, today was the first day, and I felt very good! The pain up and down my shanks, my shoulders and arms calmed so completely I forgot to take my pain pills. Toward evening I began to feel it again, but not as bad as previously. My experiment is to take 30 tomorrow morning also, and then take 25 for awhile and then go down slowly. I sent my reluctant dr the article. I hope she reads it and helps me. What do you think of my experiment?
Hi Personally I wouldn't try anything with steroids without Doctors advice. Buyt good luck if you feel you should do this
I have PMR for 1year. My experience with Rhumeys is; Eileen knows 10 times more than most Rhemeys. I would listen to her rather than a Rhumey or a GP.
I have PMR for almost 3 years. During that time I worked on Rheumatologist so he trust me to handle my dose. While I strive to go as low as possible, I do not hesitate to increase the dose as needed, based on change in symptoms. The key is to be very sensitive to changes and react immediately to get "in front of inflammation". If you wait week or two or longer, it might develop into full blown flare and it would require much higher dose to get rid of accumulated inflammation. Usually I can add 3-5mg to my daily dose for several days and then go right back to previous lower dose ( or just a bit higher) . There is no need to taper, if you keep the increased dose under the week or so.
Think of the prednisone as cleaner. One needs to clean house every day to keep it comfortable. If the dirt (inflammation) gets out of hand, you increase your cleaning to catch up. If you wait longer, then even more cleaning is needed to get back to comfortable condition.
are you saying, if my pain increased, i would up my pred by say 2mg for 2 days if this helped me then back to normal dose, i get confused with all the different ways people cope with rducing and increasing.
Hi margaret22251
It all boils down to that fact again that everyone is different.. one method does not work for everyone. You have to do what is comfortable for you..
Remember to say three things to yourself. Listen To Your Body and Slowly, Slowly.
It's inevitable that on here you will read of different regimes and schedules because the third thing to say to yourself is We Are All Different. If you are lucky enough to get that through to your doctor you are, if not home and dry, then at least on the right road.
You might try splitting your dose. Take 2/3 of 30 mg in the morning and the remainder in the late afternoon. This will help you avoid the pain in the afternoon. But as others have said don't do this without your doctors okay.
I can only tell you how I deal with that issue. You have to try to see what works for you. An example was last week. Out of a blue, my knees starting to hurt. I was on 3mg in the evening + 1 mg morning ( split dose) at the time. That afternoon I took extra 4mg. In the evening I took usual 3mg. By morning my pain was gone. I took 2mg in the morning ( just in case) and for next few days I was taking 3 + 2mg split dose. Since the pain never cane back, I am now taking 3+1 , my usual dose.
The alternative was to wait and try to make appointment with doctor ( rheumi) which may take few days and risk that inflammation buildup is much higher, which would require even higher dose to clear up.
just to add that I "self-medicate" in a limited way. If my pain was persistent and did not go away or if it returned, then I would have gone to see a doctor. But if you are not comfortable to do what I am describing, then you should see doctor when you have a problem. Like Betty said, we are all different.
Personally I think it is a good idea - it definitely shows that 20mg isn't enough and as I suggested your weight almost certainly means you need more than most of us. This gives you some information and leverage with your doctor. If when you go back to her she isn't willing to listen to you and work together with you then you should seek another who will. Leaving you on too low a dose to achieve anything is just letting you in for all the downsides with no upsides to balance them out. Predm does have adverse effects - but if she let you have enough to get things under control to start with you might well be able to get to the lower dose she wants you to have.
She isn't going about it in a very logical manner - and effectively is suggesting she doesn't believe you about the pain and other symptoms. Because if it isn't PMR - it must be something else. And she should be looking for what it is. Or is she fat-shaming and wanting to say if you lost weight it would all go away?
thank you all for your inormation, i am on split dose so shall increase in the afternoon and see how it goes.
I really shouldn't speak for Debbie here, but there are lots of people on the forums whose doctors give them such bad advice they are unfortunately forced to take matters (and dosage) into their own hands.
Hi Eileen an d everyone with PMR Seen a different Doc today and she is of the same opinion as the first that the problem could not be PMR but something else because of the problem I have with my wrists and thumbs.
Has given me steroids to tide me over for 2 weeks. In the meantime have Blood test on Friday but different tests than for PMR. Will see the Doc after blood tests and before I finish steroids.
Will keep you all up to date and thankyou for your an swers. They are reassuring.
Nick, I love your analogy of comparing prednisone to cleaning house! When I picture things in my head that I'm very familiar with, it makes it so much clearer as to how to handle this pred. rollercoaster. It makes much more sense to me to just go up 1mg. or so for a few days and ward off a full blown flair then to have to increase alot because you ignored your symptoms! Also, as afraid I am of prednisone side effects, I don't think a short stint on an increased dosage will create anymore problems...certainly not what having to go back up on a larger dosage for a longer time would do! Thank you for painting such a clear picture. Btw...I think I'll go dust right now!
She has given me every test under the sun, looking for something, and I appreciate that. I, too, believe something else is going on with me, but I think PMR is there, too, in a big way, which causes all the intense pain. I'm the one who fat shames myself. I feel like if I lost weight I'd be OK. But that wasn't true of fibromyalgia, and I don't think it would be true of PMR, either.
Don’t go up & down like a yo-yo. Give the 30mg a few days to settle everything. If you’re still having any pain by day 3, there’s an issue. Also, you mentioned pain medicine. What are you talking for pain? Your doctor should have told you that narcotic pain medicine will do absolutely nothing to relieve PMR pain. If 30mg’s doesn’t completely relieve your pain, then perhaps something else is afoot.
15mg’s of prednisone generally relieves all PMR symptoms. If you’re not sustained and pain free on 15mg’s, your doctor definitely needs to be made aware.
Best of luck♥️
15mg is the bottom of the dose range as recommended in the 2015 Recommendations. Many people require 20mg or even 25mg to get full relief. An Italian study also found that there was a difference in response related to the size of the patient - larger men needed more than smaller women. Debbie is a prime candidate for needing a higher dose.
I took 30mg again today of pred. and my shoulders and legs and sides feel nice and clean, lightweight withou the PMR pain. However I'm not as happy today because my lower back still hurts pretty bad. I have had things done to ease that pain, including a scraping of the bone so it doesn't touch the nerves, or something like that. They said that lasts three months and it has been at least six, so I suppose I need another. I have more than one thing wrong with me, kathy, so the pain pills are partly for one thing or another. I think I could go without them, but afraid to try. Two days in a row, I've not needed the one I take at night.
Margaret, please DO keep us posted!! I'll be watching with interest as some of my main pain was im my fingers, thumbs and wrists ( along with other places) when 1st diagnosed. I'm going in for more blood work and a bone density test tomorrow, so I guess I'll have more info then. Good luck!