PMR

[Olympian]

Hi I have just joined this group to share my experience with my recently diagnosed PMR. I have responded well to Prednisone so far and carrying out daily tasks with ease after four mounts of pain often agony. The onset just after Christmas was so so sudden. One question I have at the moment is has anyone gone onto develop GCA or is it GCT?? If so when did you first notice this and how has it affected you?

[piglette]

About 50 percent of people with GCA also have PMR, and about 10 percent of those with PMR also have GCA. I have PMR and was told to look out for really painful headaches. I have not got GCA, so cannot tell you what it feels like at the beginning.

I do find steroids a miracle drug.

[Olympian in reply to piglette]

Thank you for your prompt reply good to be in contact with fellow sufferers.

[Pondweed in reply to Olympian]

Welcome on board Olympian! This forum has been an amazing support, wealth of knowledge and pure empathy for my recently diagnosed PMR. My Prednisolone journey has started with a daily dosage of 15mg, the miraculous effect was within 24 hours. Alongside this forum, I highly recommend the book, 'Polymyalgia Rheumatica and Giant Cell Arteritis:a survival guide. 2nd edition' by Kate Gilbert. My copy arrived yesterday and I cannot put it down! Incidentally, Kate Gilbert gives credit to this brilliant forum in the final paragraph of her acknowledgements:

"Finally my special thanks to the many men and women on the HealthUnlocked/PMRGCAuk Web forum who have shared with me their experiences of Polymyalgia Rheumatica and Giant Cell Arteritis. Thanks to you, the struggle may not be so hard for those who come after you"

Say no more!!!

Kind regards..... you are not alone 🙏🙏😄😄

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

GCA - Giant Cell Arteritis ......and the possibility of PMR developing into that is about 15-20%. The warning signs are usually new headaches, maybe issues with ears, tinnitus etc, tender scalp, jaw claudication (when chewing food), and the most worrying (for most) sight disturbances.

I had GCA from onset, some have both, most PMR only.

You might like to have a look at this -

healthunlocked.com/pmrgcauk...

and also have a look through the FAQs -

healthunlocked.com/pmrgcauk...

[Olympian in reply to DorsetLady]

Many thanks for your helpful reply

[Grannyasbo]

Welcome to the group Olympian. I also joined very recently and have to say it’s been an excellent experience. I can’t help yet with expert advice or much in the way of experiences as this is all still very new to me. But I can send support and empathy. And recommend the group to you. 😀

[Cosmos22Marigold]

You will be helped by the forum so much so ask away and people that have the knowledge will reply. Wonderful site.

[DogAgilityObsessed]

Welcome Olympian. This is without doubt the place to help learn about your PMR which will be with you for quite a while. Almost everyone here speaks from personal experience. Some will become virtual friends I’m sure.

[daworm]

Not me, thankfully, once I started on pred I went to the eye Dr quarterly for check ups, it was always good...prednisone is just a very good drug for this PMR condition, wouldn't want to try to use anything else, and its really not that dangerous...I had very few issues with it, taking it for three years..sometimes I think I may have tapered off of it too early, but generally I feel pretty good..lots of OA in the old joints...

[Lori23]

Hello I was on prednisone for 4 years I never had any problems with them, and I was pain free all the time I had pmr. I hope you find they suit you and you get better soon good luck 😊

[Olympian in reply to Lori23]

Thank you so much for your response so helpful and encouraging!!!

[Sally001]

Welcome to the Formu Olympian. I started out with GCA first, then after about 7 years I developed PMR. When I was diagnosed with GCA (aka Giant Cell Arteritis or Temporal Arteritis) I was getting excruciating head pains - so bad I wanted to hit my head against a wall. I had never experienced pain like that before. On two different occasions I went to hospital where they gave me a shot of morphine which helped. Years before this I used to get terrible migraines but they were nothing compared to the pain of GCA. Along with the GCA head pains I was seeing shards of jagged images to the side of my eye which were very bright. However, I have never experienced jaw pain, which is a symptom. When my GCA went into remission in 2017 it was then that PMR started for me. I've been on a roller coaster ride with prednisione since 2011; first starting at 90 mg until it was under control, tapered down and stayed at 20 mg for quite some time then got as low as 4 mg. When the PMR got really bad I increased gradually to get it manageable and now back to 20 mg and can't seem to get off this drug. If you suspect you may have GCA your doctor will send you to a specialist who will do a temporal biopsy. It only takes a couple of minutes and doesn't hurt. I wish you the best of luck Olympian and please feel free to ask any questions. I have found this Forum invaluable as there are many people here who are so knowledgeable and have helped me along the way. My advice for your PMR is that if you are feeling tired - nap - it does help to recharge your batteries, and if it doesn't, then you should up your prednisone a bit until you feel better and stay at that dose for awhile before tapering again. I hope this helps.

[Olympian in reply to Sally001]

You have had a horrid time and hope all remains under control but thank you so so much for sharing your experience and giving advice which I really value.

[Sally001 in reply to Olympian]

You are so welcome.

[PMRpro Ambassador in reply to Sally001]

"have never experienced jaw pain, which is a symptom" - but like ALL the symptoms not all patients get it. I don't think any of the symptoms actually appear in more than about half of patients.

[Sally001 in reply to PMRpro]

I didn't realize that. Thanks PMRpro.

[PMRpro Ambassador in reply to Sally001]

Nor do a lot of doctors!