Help

[chatshy]

Just diagnosed today with PMR . So need any and all advice and information possible . Main question is about the dosage of prednosolone 40mg daily for a month then reducing by 5 monthly . The chemist queried the dosage, now I am worried . Thank you in advance .

[daveD]

mornin chatshy. I was started on 15mg pred. for six weeks then a slow reduction. i am now down to 6mg. i like you had no info about this illness, but with first class advice from the mainly girls off this and other forums, i am slowly getting better (fingers +) YOU have come to the right place for info.I am thinking the cavalry will come to your rescue.All the best. Dave

[chatshy in reply to daveD]

Thank you . The chemist insisted on phoning the docs because of the dosage being so high . Within 24hrs of taking prednosolone hardly any pain .

[paulst955]

40 mg is a very high dose for PMR. Did your doctor think you may have had GCA. When I started treatment for PMR 2 years ago I started on 20mg as i had very bad symptoms. I have had 2 relapse's since starting, do not taper off your dose to quickly max 10% drop at a t time. But back to your question 40mg is high to start with ask your doctor why its so high .

[chatshy in reply to paulst955]

Not sure but I do have blurred vision and jaw ache . I see him again in 3 weeks . He didn't mention GCA. Thank you for replying . I also have pernicious anaemia which is under control although he is concerned my blood cells are too large .

[daveD]

chayshy it is i again, if you can i would try to post a bit info ie Blood test ect that you have had to confirm PMR. it will help with your replys.Stay positive. Dave

[Celtic PMRGCAuk volunteer]

chatshy, yes with the symptoms you mention of blurred vision and jaw pain (mainly on chewing?), it seems your GP has correctly diagnosed GCA and is treating you with the recommended steroid dose to protect your eyesight. Hopefully your pharmacist has now been made aware of this fact.

I, too was diagnosed with both PMR and GCA and commenced with the 40mg dose. GPs do aim to reduce patients from the very high doses down to a 'maintenance' dose that controls the inflammation and the symptoms, thereby reducing the possibility of side effects at this high dose. I was very lucky in that my blood tests were always repeated before each reduction, and providing the results had normalised and my symptoms corresponded, I was able to successfully reduce down from the high doses. However, as you reach the lower doses, you will need to taper in smaller amounts and over a longer period - however, we will save that for another time as you will be feeling you have quite sufficient to cope with for now. Hopefully, you will also find that all is well and you will be able to reduce by 5mg after 4-6 weeks. All good wishes that you feel much better soon.

[chatshy in reply to Celtic]

Thank you . Just a bit lost just now . I know he plans to deduce it by 5mg a month until I reach 15mg daily . Also to take something to stop thinning of the bones . Once again thanks.

[Celtic PMRGCAuk volunteer in reply to chatshy]

chatshy, don't just accept bone protection meds before asking for a DEXA bone density scan to check your present bone density levels first. Just Calcium plus Vit.D will suffice in the meantime until you get those results. I wasn't offered bone protection meds, nor calcium plus Vit.D, but my bones remained fine throughout treatment. Of course, if the scan reveals a problem, then you may need some intervention.

[chatshy in reply to Celtic]

I am wary of taking the bone protection heard the side effects are bad . Started vd3, take folic acid and getb12 weekly ,40mgdaily of prednosolone . Beginning to rattle when I walk .

[chatshy]

I was too pleased to have no pain or very little that I never really asked any relevant questions . Being able to get out of bed ,up from sitting lifting a cup was excruciating but most of this subsided within 36 hrs feet took longer . Think I need a list of questions to ask him . What would be the most important ones to ask . I have a melt down at twinges just the thought of all that pain returning . Thanks

[piglette]

I would recommend Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, from Amazon. It is in paperback and Kindle. It is a very easy read and gives you the information I wish I had known when I was first diagnosed. Kate had PMR so it is written by someone who really knows PMR at first hand.

[suzieh]

Yes definitely read the book. I had not heard of PMR either when I was diagnosed. The pain was terrible but the steroids do get rid of it so don't worry too much. Post your questions on here - someone will reply within an hour or two; also trawl through some of the past posts to find out more - great support!!

Keep positive.... Lots of us are in the same boat and we help each other get through it and become knowledgable which helps when visiting medics.

[chatshy]

Thank you everyone . No one I know has heard of either condition . X

[DorsetLady PMRGCAuk volunteer]

Hi chatshy,

Agree with all previously said, especially read Kate's book, bit scary in places as you are new to this PMR/GCA lark! but invaluable as she's been through it and explains in plain English. Trouble is, a lot of GPs don't know much about it, so can't explain to us sufferers!

As someone two & half years into GCA, I can tell you life will be difficult at times, but you are on the slow road to improvement, just remember that on the bad days. You need to rest as much as you can, and not do too much on the good days (very difficult).

Most important of all, if you feel down or want advice on the slightest thing (no matter how trivial you think it is) just ask. You will always get support from this forum. Good luck, and remember you are not alone, we've all been there, done it, got the t-shirt, and come through battered, but not defeated! DorsetLady.

[daveD]

Chatshy. As the saying goes. : You Are not alone; If you look at top right of this page click on what info you need you will get a load of feed back.All the best. Dave.