An Experiment Without Doctor Approval
Posted , 16 users are following.
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?
0 likes, 32 replies
Guest DebbieHurts
Posted
Hi Personally I wouldn't try anything with steroids without Doctors advice. Buyt good luck if you feel you should do this
MR._BELLA Guest
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Anhaga Guest
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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.
nick67069 DebbieHurts
Posted
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.
margaret22251 nick67069
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mary19068 margaret22251
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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..
BettyE margaret22251
Posted
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.
nick67069 margaret22251
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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.
nick67069
Posted
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.
margaret22251 mary19068
Posted
lynda62707 nick67069
Posted
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!
amkoffee DebbieHurts
Posted
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.
EileenH DebbieHurts
Posted
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?
Guest EileenH
Posted
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.
DebbieHurts EileenH
Posted
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.
lynda62707 Guest
Posted
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!
lynda62707 DebbieHurts
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EileenH Guest
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I have pain in wrists and base of my thumbs, always have done since the start of PMR and it returns if I am starting to flare. I know quite a few people with a PMR diagnosis who say the same - and 2 top PMR rheumatologists accept it is part of my PMR. You can't say it isn't PMR just because the patient has hand and wrist pain. Originally I had awful synovitis/tendonitis in my feet - also felt to be part of the PMR. It certainly went after a few months on pred - which really is all I cared about!