Newly Diagnosed

[ValFF53]

Hello

I was finally given a diagnosis of PMR (previously Fibromyalgia then Osteoarthritis) and felt miraculously better within 48 hours of taking Prednisolone on Christmas Day. A wonderful Christmas present!!

This seems to be an excellent forum as it feels quite isolating when you do not know anyone else with PMR.

I look forward to being a part of this.

[Hidden]

Welcome ValFF53 💐

I'm sure it must have been like a Christmas Miracle! I hope you are feeling much better now but please don't over do it, you need to take it steady.

You'll find plenty of great folk on here who are really helpful & very wise (from experience) so don't be afraid to ask anything you need or want to know, someone usually has an answer.

Best Wishes

Mrs N

[ValFF53 in reply to Hidden]

Thank you very much. I am sure I will utilise this very good forum.

[Charlie1boy]

Hi,

Yes, it is an excellent forum, where you can ask anything you wish to know, or just share your concerns. I have been visiting the forum for the full two years I have had PMR, and it has been absolutely invaluable for me, and has helped beyond measure to manage my PMR.

If you haven't got it already, I do recommend you get yourself a copy of Kate Gilbert's book: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. You can get it reasonably priced on Amazon. There is also another publication - Living with PMR and GCA, which you can get via the North East Support Group. pmr-gca-northeast.org.uk.

It is important to get to know as much as you can about this condition, but, at this stage, I would just say to you "make sure you give yourself plenty of rest and tlc" if you don't, you will most likely find the PMR will come back to bite!

Good luck, and God Bless

[ValFF53 in reply to Charlie1boy]

Thank you very much for your message. I do make sure I rest, too and, so far, things are going well.

[ValFF53 in reply to Charlie1boy]

Thank you for your reply. I have purchased and read the book you recommend and have found it invaluable. I have also visited my local PMR and GCA support group and will continue to attend when I can as it seems another way to lessen the isolation and increase knowledge of my condition.

[DorsetLady PMRGCAuk volunteer]

Hi,

Good advice from Charlie1boy, get as much info as you can, as you say it can be a very isolating illness.

Sure you will have plenty of questions as you go along, so please ask, no matter how trivial they may seem, if you're worried about something it's not trivial to you!

Take care.

[PMRpro Ambassador]

Re the "get plenty of info": here is a link to a post on another forum with collected links to reliable information.

patient.info/forums/discuss...

And in the replies section is the Dead Slow approach to dose reduction...

[ValFF53]

Thank you to all who have responded so quickly.

I must admit the complexity of information (and sometimes contractions) available is quite overwhelming at times. In addition, it seems, that everyone has had a different journey leading up to, and after diagnosis.

I feel very lucky that I have been able to return to work very part-time (as a Staff Nurse), look after my 5 year old granduaughter and do most of the running of the home without untoward effects.

I am aware that this could change at any time and am really making the most of it whilst I can.

I wish everyone well.

[piglette]

Hi Val, I am so glad that you got the right diagnosis, pred really does work like a miracle. I don't know if your doctor prescribed vit D and calcium but it is a good idea to take it with pred to counteract some side effects, also you should get a Dexascan for the same reason. Your doctor should recommend it, although some seem to forget. You may be lucky and have a good doctor.

[ValFF53 in reply to piglette]

Thank you. I am taking a Vit D and Calcium tablet. I am due to see the Rheumatologist at the end of this month so will see about the scan then.

[PMRpro Ambassador in reply to ValFF53]

It was my GP who arranged mine - I imagine it depends where you are. Some rheumies think it beneath them I think.

[SheffieldJane]

Welcome ValFF53, there is a lot of knowledge wisdom and kindness here. You've landed in the right place. X

[Hidden]

Like yourself, I am new to PMR. Having had terrible problems and severe symptoms for 2 months whilst living in a foreign country where I am not fluent in the language. Thankfully I am returning to the UK at the end of the month and in the meantime have been able to get Prednisolone from the chemist which is working up to now.

I do have a close friend in the UK who was severely ill with this for months before getting a diagnosis. However, I still didn't know much about it. So this forum has been wonderful for me and I still have many questions.

The one thing I do know is you have to inform yourself about this illness as it seems to me it is not always managed well be the GP's. My brother in law was left on Pred 20mg for 6 months because his doctor forgot to tell him he needed 3 weekly blood tests! So, be aware.

Hope all goes well with you.

Sandi

[ValFF53]

Hello Sandi

I was sorry to hear of your experience, too. I must have been made so much worse being in a foreign country. I am pleased you have been able to get some Prednisolone and that you will be returning to the UK later this month.

I think one of the main things that has got me down (apart from feeling so unwell) was how variable peoples' experiences are with diagnosis and treatment. I still find it amazing that people seem to be self-managing their steroid dosage according to how they are feeling.

I am a bit anxious about 'flares' as I reduce my steroids but am enjoying and making the most of good health at the moment.

I hope things work out well for you.