pma back again

[Wasps11]

i have had poly rh for a year now , i have a flair up in march went back up to 10mg and it went away,this time in october it came back after going back down to 3mg,back to 10mg makes no differance still in pain been off work for 3 months dont know which way to turn

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this -but too fast a reduction is the main cause -whether that because you were directed to, or by your choice.

PMR lasts a long longer than guidelines state and many doctors believe -and you are not relentlessly reducing to zero. Unfortunately very often a second or third flare does not react as well as the first with added Pred.

So it’s not back again as you title says -it’s never been away.

Have to say, it sounds as if you need to start again -and this time reduce much more carefully -and maybe have a read of this info post -

healthunlocked.com/pmrgcauk...

[Doraflora in reply to DorsetLady]

thank so much for sharing that link, DL. It’s extremely interesting.

When I was first diagnosed I was thinking “oh, I’ll get off these steroids pretty soon”. How ignorant was I🤣. . I’ve since learned hell of a lot.

I think that some of my relatives (including hubby) and friends just do not realise the extent of what PMR is. The word “hypochondriac” has sometimes been mentioned 🙄

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Would say you were more naive (like many) than ignorant -if your doctors don’t explain how are you supposed to know?

Many people don’t understand - fact of life I’m afraid ….

[Doraflora in reply to DorsetLady]

yep, you’re so right there. When my original GP diagnosed me (over the phone at the start of the pandemic) she said “you’ll be on steroids two or three years - maybe longer. Here’s a leaflet to explain it all”. No mention of a steroid user card: I read it on here I should have had one & had to go to the surgery to ask for one.

[Suffererc in reply to Doraflora]

felt exactly the same. 5 years later on 1.5 mg Pred. Think having a flare. Painful hips and sluggish walking. Phoned AskMy GP Wednesday told clinician would phone later in day. Still easing call

[Suffererc in reply to Suffererc]

still awaiting call. Think they have forgotten. GP wanted me to message if I was having a flare ……… and ….🤔

[PMRpro Ambassador in reply to Suffererc]

Which is why so many ask here ...

[Suffererc in reply to PMRpro]

my GP asked me to message her if I thought I was having a flare. Asked how and she said AskmtGP most prob best way. Thought she was going to take on this flare. Now don’t know whether to wait. It’s only in my hips at the moment 🙂. She may put in another referral to Rheumatologist and make it 4 😂🤣😂🤣

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

That’s not good enough -is AskMyGP a nationwide 24/7 facility. or just linked to individual surgeries..not used it.

Sounds as if it’s linked to your GP surgery , if so, then you aren’t going to get an answer until Monday -so if it is a flare then you need to take action yourself … and up the Pred. See below for treating a flare -and if your GP witters on -tell them you waited for reply- but didn’t get one

healthunlocked.com/pmrgcauk...

[Amkoffee in reply to Doraflora]

It's a shame that our own relatives treat us that way. While it doesn't really matter, their ignorance shows just by using that term. It now goes by the name somatic symptom disorder.

[Doraflora in reply to Amkoffee]

don’t get me wrong Amkoffee, my husband and friends are very supportive but they just don’t completely understand. My friends are like “0h, why are you still on steroids” 🙄

[Amkoffee in reply to Doraflora]

That's good. My husband tries to understand what I go thru and I know I'm overly suspicious that people thinking I'm faking it for some reason. I have so many comobilities that I hate going to the doctor for fear of yet another diagnosis. Fortunately, my PMR fizzled out about 2 years ago. But left in its place secondary adrenal insufficiency. So I have to continue to take steroids.

[Doraflora in reply to Amkoffee]

I must sound awful, as I couldn’t have a better husband. But Unfortunately I may have inherited a bit of my late dad’s hypochondriac traits🤣🤣

[PMRpro Ambassador]

It didn't "go away", the pred cures nothing, it is a management strategy to control the inflammation that causes the symptoms. As long as you are on enough pred to do that and you adjust your lifestyle you can be relatively free of pain. But if you over-reduce the dose the symptoms will return. You have to taper slowly and carefully - and the fact you have been down to 3mg in under a year that included a flare and return to a higher dose suggests to me there is nothing slow or careful about how you have been told to taper.

You are NEVER reducing the dose relentlessly to zero - you are looking for the lowest effective dose that manages your symptoms as well as the starting dose did and in the early days that is higher than it will be later. The average time taken to get from 15mg to 5 mg is 18 months - without hiccups for flares.

Unfortunately, if you get too enthusiastic about reducing the dose and have flares you tend to get into a yoyo pattern and it is the worst thing that can happen - each time you go up, the harder it is likely to be get symptoms under control and then reduce the dose again.

Also, pred is not the single magic answer to PMR - you have to do your part too. It usually means lifestyle adjustments and continuing to work depends greatly on what sort of job you do. I worked through 5 years of PMR without any pred because I wasn't diagnosed. But I was a freelance translator working from home so had no commute and I could choose my hours. I couldn't have commuted AND done a day of normal work.

Have you read the FAQs which has a lot of basic information about PMR and coping with it and pred. But without a lot more detail about your problems it is difficult for us to be able to make suggestions.

[Wasps11 in reply to PMRpro]

thank you for your reply i will read some faq to try and understand more

[PMRpro Ambassador in reply to Wasps11]

Do, and then ask specific questions about what you don't understand.

[yogabonnie]

Wasps11. Good luck. This time around it will go well I hope! It is a tricky confusing disease as is the treatment. Do follow the slow method of tapering. It is the only way. I had a couple UNNECESSARY flares because I was in a hurry and of course I just added time to the course. And now I am at 1mg. and can sit here for a long time and enjoy feeling better. a low dose isn't harmful at all side effect wise. But you really must take it easy getting there. You are in luck. you got Good (Dorset) Cop Bad cop (PMR PRO) (haha. PMRPRO though you'd like that! I love how you get straight to the point, as you know!! ) commenting right away!! and they are the wise ones to listen too. and you will have lots of other help and encouragement if you keep on asking questions! It is the only way we learn about this fool disease. I also have to add, being an incurable pollyanna, it could be something so much worse!!!

[DorsetLady PMRGCAuk volunteer in reply to yogabonnie]

Ahh…but I can do “Bad Cop” as well…. not making another other comment 🤔..dare not 😂🤣

[yogabonnie in reply to DorsetLady]

hahahahahahaha. I love that!!

[PMRpro Ambassador in reply to yogabonnie]

We were called the contemptibles yesterday! And I was said to be acerbic. Nice to know we're appreciated

And you are so right - it COULD be something FAR worse ...

[yogabonnie in reply to PMRpro]

the contemptibles !!!! You need T-shirts! or to start a band!

[PMRpro Ambassador in reply to yogabonnie]

Didn't think we were that old TBH!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well we don't obviously, but some do ???? 😲

[DorsetLady PMRGCAuk volunteer in reply to yogabonnie]

That could be a Christmas competition!...or maybe not 😏

[tempusfugi in reply to yogabonnie]

I'd buy a T-shirt!

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

Not with our faces on it - unless you wanted to frighten the horses ( referring to myself obviously 😲)

[Koalajane]

well, I think you are both very helpful and caring

[Louisa1840 in reply to Koalajane]

I AGREE KJ. where would be without either of them? It did give me a laugh though....!

[Doraflora in reply to Louisa1840]

these two ladies are our life-liners. What would we do without them😍