Everything has changed!

[Crossstitchfanatic]

Up to this weekend I felt alone, frightened, depressed and more having not long been told I had P.M.R. Then I found this forum and it changed my world! My G.P. hasn't been very supportive, in fact, I feel he hasn't managed my illness well at all. He has been quite dismissive at times and reluctant to start treatment. I am a retired nurse but, now, I am a patient who needs help and my confidence is low. However the forum has given me courage to question his decisions. The result is he has told me to adjust my steroids according to my symptoms. He agreed my dose had been reduced too quickly. I know I have a long road ahead but patience is the key and listening to all the advice that is at my fingertips!

[PMRpro Ambassador]

If all we manage to do is give people the confidence to take charge of their own body - we have done our job

[DorsetLady PMRGCAuk volunteer]

Good....stick with us!

[Sandyowl]

I found this group so helpful too. It does appear that we become our own experts at working out the level of our own steroid doses. I have learnt that the slower we reduce the better our chances are of success.

[SheffieldJane]

So glad to hear this. It can be a life saver, bringing your difficulties to this forum that is full of knowledgeable, supportive people.

[Mstiles]

Well done! I can relate to your struggles with your doctor and so can many on this forum!

[Bcol]

Fantastic, and I can do nothing other than agree with the other replies

[Maisiek]

Hooray! I totally agree: with Rheumys and GPs mostly unavailable , I’m managing my PMR with the daily help of this forum: thank you PROs and keep on cross stitching !

[-LJ-]

I found this forum the day after my symptoms started and saw a Dr 2 weeks later (soonest I could get in!) Agree....changed my whole perception of PMR. Armed me with questions for rheumi, gave me hope it might end some day, Allowed me to take control of tapering, supported me and answered questions through every weird moment for 2 years! You’re in good hands!

[Meggsy]

Good on you! 👏 Kate Gilbert’s book, Polymyalgia Rheumitica and Giant Cell Arteritis: a survival guide, is well worth reading.

[Bcol in reply to Meggsy]

Hi Meggsy, yes an excellent read and available on Amazon Kindle, well worth reading.

[Meggsy in reply to Bcol]

🌻

[123-go]

I'm so glad you found us. There are many on here who know the condition inside out and are wonderful at sharing advice. It's good that your GP has finally listened to you but it seems that he isn't familiar with PMR. A good rheumatologist would be of more help to you. You might ask him to refer you.

[Mondelo]

A lot of people on here will very much relate to your post: There appears to be a lack of in depth knowledge in the general GP/health system, and in fairness you will see that there is a range of complex conditions with PMR/GCA: Real people who have experience make such a difference in understanding and dealing with issues, and this forum is certainly invaluable to many, with some fantastic regular contributors

[whitefishbay]

This is the best group to belong to - super supportive and helpful.

[Lollybygolly]

I was so glad to read this! I have an excellent female doctor who listens and is very supportive. Being in charge of my own dosage - knowing I’m trying to reduce without allowing heavy pain- being trusted, is for me the key to managing. Only you know your pain. If I’m having a heavy busy day I up from 5 to 7/8 but I try not to as I know weight gain and side effects will help me taper downwards. Keep fighting for your voice! Stay well. 🙏

[Bern435413]

This is the best forum, I’ve had PMR for two years and realised early in my GP wasn’t interested or really up to date on how to manage it. This group have been amazing in answering my questions and giving advice. Good luck on your journey, you’re not alone x

[Gaycreasey]

Thankyou for that post. Although we all live with pmr and have our own daily battles we can become entrenched with all the negatives. I’m so glad that reading these posts gave you the support you needed to challenge your GP and that he was professional enough to agree that you had reduced too quickly. What I have never understood is, if you took the professionals’ advice and reduced at the speed that they want (regardless of all the pain and suffering caused by that) and you get to 0 - you still have pmr. What do the professionals do about your pain and inflammation then? I get more of a guilt trip from my GP because my Prednisolone is more expensive than usual because I have to have it in liquid form. It is hugely difficult to stand your corner when you’re feeling ill, confused and scared. Well done you. 👏

[tangocharlie in reply to Gaycreasey]

That's exactly what I keep saying, and all the experts on here, it's not a race to get Pred dwn to zero, the trick is to find the lowest dose of steroids that still manages the PMR until hopefully one day it goes away

[MrsNails]

Hi Welcome 🌺

So pleased you found us quickly & it’s been of help to you, sadly GP’s mainly feeling it’s a disease of old lady’s who’ll take a reducing dose of Pred & get better in two years!

As Dorest Lady says, ‘stick with us’ & ask any questions you might have.

Kind Regards

MrsN

[paulst955]

My G.P. hasn't been very supportive, in fact, I feel he hasn't managed my illness well at all. He has been quite dismissive at times and reluctant to start treatment.

I think your comment above is true for a vast number of UK GP's unfortunately most have no idea how painful and debilitating PMR is. I manage mine myself with the help of this forum and only go to the GP for other problems.

[michelle3]

I think that is great that your doctor has been willing to change and accept you as a partner in your treatment. It must be hard for doctors to accept that after all their years of training they don't know everything. I had the same trouble with my doctor who, though very nice was not willing to accept my opinion on GCA . I didn't know about this forum when I was first diagnozed. Great that you have this support.

[sandydame]

So glad you found us. I had no place before this site that understood PMR and what it is like to live with PMR, it is full of support, good advice and even sends out HUGS! I agree a Rheumy is the best doctor to have and hope you find just the right one to help you on through. Good for you positively asserting yourself. Wishing you well and stay in touch.