polymiagle 1943

[Polymiagle1943]

i am not very good with this site. as I cant seem to find my way around i couldn't find replies to my last post. so just look at post written in by other members. hoping they may answer my worries. I wrote a post a few months ago when PMR came back as a flare up.

This time my G.P. put me on 30m of pred straight away. I was amazed how quickly my symptoms dissapeared.

I felt like i was back to 7 years, when i was nearly 73 years old and full of energy and gardening in my acre garden with energy all daylong.

that was when iwas diagnosed. with PMR. then about about a year later. iknew nothing of polymiagle or the side effects of steroids.until i fell, broke my hip and was diagnosed with osteoporosis. then diabetes they said it was pred induced. I had not had a dexan scan or calcium until after I broke my hip. My hip replacement never took me back to full fittness. I have had a permantly swollen leg and ankle pain in my knee and painful piriformas muscle, sciatica on off for the last 7 years. I was fed up.

i was highly dissaointed when PMR symptoms came back after 7 years. i didn't know you can get it twice.

In the seven year interval I have ben given a pacemaker. blood thinners blood pressure pills beater blockers, and more. I also have Atrial fibrillation as pacemakers dont get rid of AF.

I do sound sorry for myself, I'm not as there is so many of you all out there with much worse.

I just want to understand what is going on.What i would like to discuss is my GP has told me to reduce the steroids very quickly, which I was pleased with because of the side effects. I am now down to 3 mg a day started 30 mg few months ago. i tried 2mg 10 days ago but felt very fatigued and jittery.so the next day i went back to 3mg still feeling jittery and fatigued now. had very high blood pressure i was given extra blood lowering pills, now feel a little dizzy so probably too low now. 185

I was pleased with the fast reduction, now not sure if PMR flare has gone. As I have a very painful back and neck and cant tell if its wear and tear. my hip pain and piriformis muscle pain have now come back. i have been reading on this forum about the low steroid does and the andrenilin not making natural cordisol. GP does not have time to discuss problems like this in phone calls. Ive nevered been offered a rumatoligist appointment.

Now Iam going to post this. though i think i will never find a reply as i didn't last time. As i don't quite understannd where togo to look for one.

thanks to anyone who can help.

[DorsetLady PMRGCAuk volunteer]

If look at your profile [just tap your picture either at top of your post or picture on top banner] - there you can find all your previous posts and replies.

Also if you tap MENU [again top right of screen] you can select to get email notifications when anyone replies to your posts.. those notification will take you directly to your post.

I would say 2 things, you have reduced very quickly so your PMR may still be very active, and at such a low dose your adrenals are struggling. If you cannot get your GP to discuss your illness properly -and in person not on the phone - with you then you may have to request to see a Rheumy, but unless you can afford to pay privately not sure how quickly that will be.

I would suggest you return to 5mg and stay there until you can get some help… and is there anyone [family member or friend] who can help you with this forum and the GP.

[AtopicGuy]

Thank you for putting your age in your profile. Many of those using the Forum do not, so it can be impossible to compare one's experience with those of a similar age group. PMR and GCA respond to steroids because they are autoimmune conditions, where our own body attacks its own tissues. As we get older, parts of our immune system weaken, while other parts can begin to overreact. Which parts go which way is very specific to the individual, as is their body chemistry and how they respond t medicines. So it's important to focus on what does and doesn't work for you, and not to expect the same as others, who may have little in common. Among all the suggestions, I hope you find some that work for you.

[Sillydogsmum]

Hi there, how did you get on making contact with your GP? Success 🤞🤞?