Stubborn

[Xanthe12345]

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!🤞

[Hidden]

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. 🌻

[SheffieldJane]

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.

[Xanthe12345 in reply to SheffieldJane]

Just my stubborness thinking I was better than the disease lol

[SheffieldJane in reply to Xanthe12345]

Oh but you are! You’ll see.

[Xanthe12345 in reply to SheffieldJane]

Now prepared to wait a bit longer. Lesson learnt lol

[Woolyhead in reply to Xanthe12345]

Nothing to be ashamed of. You're not losing the battle, you're fighting it.

[Hidden in reply to Xanthe12345]

Its usually it'll be better tomorrow that's my enemy.

[Blearyeyed]

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.

[SnazzyD]

Hmm, I hate to admit it but I’d probably would have been the same. Trying to find every other reason but THAT.

[Grants148]

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.🌸🌿

[JakeSearcher in reply to Grants148]

Is your vascular issue causing the tinnitus? I have pulsatile tinnitus.

[yogabonnie]

Thanks for this post!!! It MUST be frustrating but good advice for all of us, especially me..(as I approach 3.5!)

[Xanthe12345 in reply to yogabonnie]

Received blood test results today esr 27...which I think was high.

So 3.5 was definitely too low but will stay at 6mgs for a few weeks and start again! Good luck

[Hidden in reply to Xanthe12345]

So you know that if you feel as bad as you reduce...you should slow down. Hope 6mg works and keeps a lid on it. 🌻

[Xanthe12345 in reply to Hidden]

Arms and buttocks still hurting but not as bad thanks🤧

[PMRpro Ambassador in reply to Xanthe12345]

And get an ESR done and keep a record together with symptoms.

[Grants148]

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 .