So glad I found this group!: I already feel less... - PMRGCAuk

PMRGCAuk

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So glad I found this group!

msdale profile image
13 Replies

I already feel less alone, having found this group. Diagnosed with PMR in June, after months of pain, a misdiagnosis, etc. Can't seem to get below 7 mg Prednisone without major difficulties so will stay at 7 for a while. Mostly just wanted to say what a relief it is to be able to read what other people are experiencing, get tips, share, etc. So - thanks!

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msdale profile image
msdale
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13 Replies

Welcome... It sounds like you have done the sensible thing by stopping. 🌻

PMRpro profile image
PMRproAmbassador

At 7mg after barely 9 months you are doing really well - no hurry!

Orpheus82 profile image
Orpheus82

Hi. There’s lots of useful advice on here about tapering very slowly. It is often difficult to get below 7mg so don’t worry. You’ve done well so far but make sure you keep comfortable. It can be a long journey with ups and downs along the way. You’ll find lots of knowledge and support on here to help you along.

SheffieldJane profile image
SheffieldJane

Welcome! I am glad you found us. I also got stuck at 7 mgs despite various attempts to try tiny tapers. I ended up spending a year at 7 mgs, then something changed and I got down to 4 mgs - where I am currently stuck, with symptoms, unfortunately.

Meggsy profile image
Meggsy

You are doing well in that time. Be patient and you will get there eventually. I got stuck on 10mg and took three attempts to get to 9.5. Presently on 4.5mg after 2 years on pred. Have only just tapered so have fingers crossed. I was two and a half months on 5.5mg. All the best 🌻

Meggsy profile image
Meggsy in reply toMeggsy

I meant 5 not 5.5.

lalabirdy profile image
lalabirdy

Hello msdale, I also had difficulty in getting a diagnosis of PMR, my first GP telling me the pain was in my head. Funny this week in Australia a re-run of Doc Martin Series 7, Episode 2, highlighted the condition, I’d only my doctor had watched this. I have just reduced to 7mg (prednisolone )this week but really feeling weakness in my legs, extreme tiredness and stiffness and awful insomnia. Best wishes to you 🌈🏡

Billswife profile image
Billswife

I too was diagnosed in June and find this group so helpful. I had tapered to 9 mg. in October when I started to feel unwell again so took this group's advice and went back up to 14 mgs. Since then I have been tapering DSNS and am currently on 11.5, on my way to 10.5. My GP is in full approval of this at the moment and I am still feeling well. If I get to 10 with no problems, I will begin an even slower taper. It is amazing that you are at 7 mg so soon and I reckon you could afford to stay there for a while and then maybe you would like to try one of the DSNS tapers which my GP says are brilliant for "chipping away" slowly at this disease. Good luck with your journey! And thanks again to all who make this group possible.

Daffodilia profile image
Daffodilia

I find the forum really helps too - struggling to get below 6 mg pred - on deadslow method now - diagnosed Oct 18

Marijo1951 profile image
Marijo1951

I've been taking pred since July 2017. I started on 60 mg as I had both GCA and PMR. I have this morning taken 6 mg after being on 6.5 for several months. The last time I tried 6 mg my shoulders ached so much I increased back to 6.5. I really felt it wasn't worth the pain for the sake of 0.5 mg. I'm hoping it's successful this time, but if I'm in bad pain again, I'll go back to 6.5. If you're down to 7 mg after about a year of suffering (both undiagosed and diagnosed) then I think you're doing well and should only reduce when it's really comfortable for you.

Suet3942 profile image
Suet3942

I totally agree. Without this site I would be panicking and lost. Truly a Godsend.

I felt the same it is nice to be able to chat about your worries, I felt quite isolated and didn’t know anybody else who had pmr to compare notes with, this forum is a excellent

msdale profile image
msdale

Wow! I feel so welcomed to this group, and I want to thank everyone who replied to my first post! I'm still learning to navigate this site..... but meanwhile so thankful for all of you. I feel more in control already, as far as the tapering (I may actually go back up to 8 mg) and I've been reading about other people's experience with exercise, as I have always been a regular exerciser and have been wondering if I need to do a bit less. Anyway, again, thank you all!

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