SOOOOOOOO glad to have found this forum. I was diagnosed with PCR about 4 mths ago and had a superb response to Pred. initially. Hadn't felt so good in years,full of energy, getting loads done, etc etc.! However on phased coming down from 20mgs to 12.5 daily, I got lots of breakthrough symptoms. My GP put me back onto 20mgs, but I am still getting muscle fatigue, cramps and a degree of tiredness. The contrast has really knocked me back. i have an appt. to see a rheumatoloigst in 5 mths time, par for the course I see from this forum.
BUT it has given real hope to a newbie! it has opened my eyes to what support is available on line, and it has cheered me up no end! I have a supportive GP, which is always more than half the battle anyway. I shall be joining properly . It's the old old story of being so glad you are not the only one who feels like this. You will be hearing more from me I'm sure.
Ledgemoor Lady.
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ledgemoorlady
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Would you like to put a bit more info on your profile, so we know a bit more about you.
Maybe have a look at this link as well, you’ve probably guessed by reading posts that you reduced too quickly first time around, which is why you had to go back to starting point - so a bit slower this time around -
I felt the same when I found it so welcome to the club! Read around and then if you have questions.. Just ask. It is quite common for people to overdo things when the pred miracle happens. It's a case of pacing, resting, eating right and tapering slowly. Sounds easy doesn't it. As you have found yourself, things can go Pear-shaped, so it's a rocky road! There's nearly always someone around and we are all in a very similar boat. 🌻
Please help yourself Ledgemoorlady. You are still ill even though early Pred gives you fake energy, you have to pace your activities and rest ( a lot). Welcome to the forum, it makes all the difference in the world. When you are ready to taper, use one of the slow, gradual tapering programmes on the right of your screen, under tapering steroid plans and you won’t go far wrong.
Hello and welcome. So glad you’re getting the same relief I got on finding this forum. I’ll echo what these ladies have said about tapering too fast. It is an odd combination of an autoimmune condition that requires rest and TLC but the meds can make you want to gad about. All the Pred is doing is damage limitation so you need to give your body the best you can in care while it decides when to go into remission. Popping back up in dose will just tend to make it less effective each time so one has to really embrace the hare and tortoise approach with more of the tortoise.
Re the cramps, are you taking a magnesium supplement and eating potassium rich foods? Pred makes you lose both.
I will get some magnesium next time I'm in town. It's all in my hands in the evenings and a real nuisance! Also thanks to those who recommend paracetomol. I am an ibuprofen fan myself, but take on board it's not very effective for PMR. And much better for my stomach lining!
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Follow up to my “what does GCA feel like”…….
LVV Relapse Update
Not sure what to do
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