Reducing steriords
Posted , 4 users are following.
I was put on 15 mg. of predinsone 8 wks. ago for Polymylagia Rheumatica. Doctor told me last week to reduce the amount to 6 mg. The first day I started with headaches & some of the same pain I was feeling prior to taking the initial dose. The higher dose also helped my fibromyalgia. By day 2 I was sweating more than usual & feeling very dizzy. I was also very irritable. I called the docs office and was told I should have reduced the dose to 10.5 mg. apparently as mis-communication. (big mistake on his part) the PA told me to take another 5 mg. immediately. I do feel better but now I am having terrible headaches. It's starts around my skull & down my neck. I also feel very tired. I was feeling so good before starting to reduce the dose. I believe I need to contact the doc again & tell them I need to go back to the 15 mg. What are your experiences?
0 likes, 3 replies
Rimmy irene_88946
Posted
'Mis-communication' - oh dear - that is really NOT 'good enough' I'd say !! Even the drop to 10.5 is quite dramatic - not more than 10% of the current dose is recommended and it sounds like you may even have some GCA type symptoms !? Watch for any vision changes or disturbances in the meantime and I would certainly be back at the doctors (or even A & E if you are worried) fairly promptly to deal with this possibility at least.
Best wishes
EileenH irene_88946
Posted
I agree with Rimmy - that is simply NOT good enough and I'd make that clear. Though - I'd vote with my feet I think, they don't sound to have much idea. By the way - if pred helped your pain, it wasn't due to fibromyalgia. It is far more likely your "fibromyalgia" was early PMR.
To drop from 15 to 10 mg when you have PMR is still far too fast! As Rimmy says - not more than 10% is recommended by experts. You aren't "reducing" the dose to stop taking it, you are supposed to be tapering it to find the lowest dose that manages the symptoms as well as the starting dose did. PMR is not a short lived disease that is cured by a short course of pred - it last usually at least 2 years (for about a quarter of patients) but for half of us lasts more like 4 to 6 years before the underlying cause burns out and goes into remission. It isn't a race to get off pred.
You know there is a PMR and GCA forum on here too?
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
james82021 irene_88946
Posted
Hi, Irene,
I'm sorry to hear about your experience so far. I too would be concerned by a doc who treats your dosage issue so casually.
My experience with PMR was a bit different, though if you have fibrimyalgia toom, that may affect your response to the prednisone. I was in misery with PMR for at least a couple of months as my family doc did not diagnose it. He set me up with a rheumatilogist, but it took 6 - 8 weeks to get in to see him. I was amazed at how quickly his PA was able to diagnose my condition. It's been at least 10 years since this occurred, so I'm a little vagoe on exact dosages, but i do recall that my original dosage was either a declining dose packet, or else a dose of perhaps 10 mg of pred. I My symptom (excruciating pain in shoulders and back) disappeared almost within a day or two, and I never had any side effects from the pred. I would say that within a few months my dosage had dropped to 5, then 2.t5, and eventually to 1 mg.
Judt a side note: I am now on a 5 mg maintanence dose of pred, as I have beeen disagnosed with myelodyspoasia and tmy hematologist recommended that to arrest progression of the condition. Again, I am fortunate that I have no untoward symptoms from the pred. I have been assured that the 5mg dose will not be harmful to me.
I hope this is helflpful to you, Irene. I do hope you feel better soon.
Jim