Dear Newbies just a word of warning! I am three years into having Polymalgia. Really pleased with myself that I had reduced pred to 3.5.
For the last few months have suffered with raised temperature in the morning sore painful buttocks and hardly able to use both arms.
No! I kept telling myself not a relapse! Must be my thyroid. Eventually went to Docs last week. Diagnosis .....poly relapse! Told to up to 6mgs. Now feeling so much better. Why did I put myself through 3 miserable months? Because I am stubborn. So please if you feel like I did. See your Doc and go back to where you were comfortable! I know I am fortunate to have a Doctor who knows about Poly. Dissapointed at having to return to 6mgs but will try again another day! Sorry about length of post!🤞
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Xanthe12345
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That's a really good and brave reminder xanthe12345. I think most of us have done it. I am just entering year 4 and fortunately learned my lesson in year 1 pre forum days. I followed drs instructions as I knew no better and at 8mg felt shocking and markers higher than at diagnosis. Now I know if I have MY flare signals, burning thighs, stiff Frankenstein walk after rest and sore arms I do a quick few days higher and if it helps I stay there. I have also done the 3 days of 5mg then back to original dose too (Rheumy ok with this). So yes...don't live in pain and/or fatigue if you don't need to. 🌻
Been in that place ( usually due to doctor intervention though) hurry up etc. We just have to press on. Thank you for sharing. What do you think triggered this? The flare sounds horrible.
Really great advice , although I'm sorry you have had to suffer a relapse to have that advice to post.
Glad to feel you are already feeling a bit better with the increase , and not a step up too far , a little long on your journey with your high maintenance friend Poly , but you know you have the skills to do it .
Take it slow, be like the tortoise not the hare and you will win the race in the end.
I know just how you feel Xanthe,l have also had PMR for three years .l managed to taper down to just three mg., of pred,but had a bad reaction concerning a vascular problem in my neck,and had to increase up to six mg.l am now on five mg.,and my GP is putting pressure on me to decrease to 3 mg .again.l find that even 1/2 mg.,causes the tinnitus to become louder,and l also have pelvic pain returning.l find that l can function much more normally on 5 mg.,and l can walk without any pain or stiffness in my legs.l am beginning to have a problem with my doctor’s willingness to prescribe five mg tablets,he gives me a lot of one mg.,hoping l will follow his instructions !l know that none of us want to have to take steroids but it is something that is going to take a long time to be able to function without .l have found the practice receptionist understands more than my GP,you are fortunate that your doctor is well informed regarding PMR.🌸🌿
Reply to jake searcher,yes l believe it is because when the tinnitus was missing beats the pulse in my wrist was doing the same .My GP said that the PMR was nipping a blood vessel in my neck .l find it quite alarming when this happens.l am hoping that staying on 5 mg; of pred will help prevent this happening again but l cannot be sure that it will .The pulsing sound is there all the time,sometimes it becomes louder ,and it often interrupts my sleep at night .
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Maybe not as covered by Covid jab as others ☹️!
What's this obsession with Alendronic Acid?
Greetings from a fellow sufferer!
Strange sensation in neck
