This is the first time I have ever joined a forum like this. (As a friend said to me, well done for joining a club you never wanted to be a member of!). I am 54 years old and recently diagnosed with PMR. The pmrgca.org.uk website and this forum contains brilliant information which has helped me to start coming to terms with what lies ahead. For now I have a query about my initial dose of 15mg pred. After 4 weeks I have about 80% improvement of symptoms. GP said once 100% under control then reduce to 12.5 (after approx 3 weeks). I gather this standard advice isn't always helpful. So wonder should I continue on 15mg for now and not worry too much? I also see that dropping by 1mg at a time is better. I am off on a family holiday in a week's time; after reading posts am nervous of making any dose changes before that.
On the AA bone protection issue, against my better judgement I took the first pill on Monday; felt a bit dizzy/achy this week. Again after reading various posts I think I will now wait for my first Rheumatology appt on 19th Feb to seek advice and ask for a bone scan. As a 54 year old, active and with a good diet, (also on HRT), I feel it might be unnecessary to take AA as this time.
Any advice welcomed ahead of contacting gp and seeing Rheumatology (things to ask etc). Thanks!
Written by
TillyBrown
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Would say best to stay on 15mg until after your holiday for a couple of reasons-
sounds as if that dose is not quite enough - and my advice is never to reduce just before a holiday -even though enjoyable -its stressful in it’s own way -travelling and change of routine …
Thank you so much for your speedy reply. I will continue as I am until I see the consultant. Yes, I have been reading through FAQs and read your brilliant article (which I have also sent to various family members to save explaining everything over and over again!).
Saw it as I was logging on having breakfast - had an early start - plumber arrived at 8.15 to install new h/w cylinder luckily just got out of shower... and I mean just!
Fortunately manged to contain it in boiler room - quite small -about 1 yd x 3 yds so manged to get carpet up and out the back door!.. I was worried about it creeping into hallway and then rest of bungalow.
New cylinder in yesterday - no flood damage to walls/floor tiles, although concrete floor that was directly under is still a bit damp.. so letting that dry out completely before I move stuff back.. Not a few days I want to repeat.. ever!
Oh, that’s good news. Somehow it’s worse if it invades, as you say, the hallway, then lounge, etc join in. Still a great nuisance for sure, & yes, concrete can take a while to dry, but otherwise cause under carpet mould. It’s a lousy thing to happen, too! Take care & chill a little now, S x
Missed last nights I wasn’t well enough to sit up, but really looking forward to six nations! Friend said last nights match was exciting, but kindly didn5 tell me the score! S x
I am wondering if 15 mgs is enough. I definitely needed 20 mgs to get my symptoms under control sufficiently to consider a taper - as outlinedin FAQs. 80% relief is pretty good, but not good enough for you to begin a taper. I must say you seem pretty clued up. Good luck on- going.
I think your GP is being a little bit optimistic - some are never 100% pain-free even on higher doses of pred. But I would stick with 15mg until after your holiday for the reasons DL quoted. And don't overdo it just because you feel well!
Just a word of warning - depending on the rheumy, they may decide that the lack of symptoms on pred and your age it isn't PMR and may want you to stop the pred so they can see you without. I do hope not, I think it causes problems in the longer term, but some get iffy about GPs having made the diagnosis. Don't let them convince you that 54 is too young for PMR, it isn't and one of the top UK PMR rheumies says she has several patients in their 40s.
Thanks that's really useful advice from you and others. I'm trying to arm myself with as much info as possible, which is both interesting and overwhelming at the same time. I will definitely be pacing myself on holiday - we're off for a big family get together in the Lake District. No hiking up mountains this time for me, maybe a wander to the pub instead!
I think most PMR in the uk is looked after by the GPs unless it escalates or there’s other problems. So you could be lucky having a rheumy appointment. Or unlucky depending on the rheumy!
You’ve definitely come to the right place for advice. If raising anything you learn with the rheumy or GP then I suggest you stress it’s the charity advice so they don’t think it’s Facebook or Dr Google.
You've already received the information you need right now from some of our most knowledgeable and experienced members. I can promise you that their advice is invaluable, but most importantly, always reliable and trustworthy.
I'd just like to say that in the five years I've been living with PMR, I've transitioned from being a very scared, apprehensive and somewhat naive patient at the beginning, to a more confident, well- informed & realistic one.
You'll probably read lots of things that may alarm you but you must remember that not all sources of information are accurate or from endorsed medical websites.
This forum however, always provides sound information with the emphasis on accuracy and safety.
I know from my own personal experience that although there have been some challenging times, neither the condition nor the steroids have proved to be as scary as I anticipated.
If there's one piece of advice I could give you, it would be to learn as much as you can about your condition and the side effects of steroids.
The more you know the better equipped you will be to make good decisions that are right for you.
You'll probably experience some side effects from the steroids but most can be prevented with a little 'investment' from yourself, and any that do appear can usually be dealt with fairly easily.
Be respectful of the steroids, but don't be scared of them. They're your ally, not you enemy in your fight against PMR.
Never be afraid to post a concern or worry here....someone will always respond.
Sounds like you are already well informed and adjusting. I am so sorry you are suffering this at your age. You have all the relevant advice necessary to your post for now. Pred. is the only effective available medication but for some of us the side effects are devastating. Don't rush to get off it but do be wary. Pred. induced myopathy is a real issue for some. The older one is the harder it may hit and recovery also harder. For you age will be a favourable factor I believe. Good luck on this journey and have a good holiday.
I started on 15mg with about 90% relief from symptoms but GP put me up.to 20mg for 2weeks then back to original 15mg. Only after 6weeks in total did she recommend starting to taper and only by 1mg every 4 weeks.
What it used to be - until they developed this unreasonable fear of pred. They fail to understand that cleaning things up thoroughly to start with makes the rest of the process far more straightforward for most.
I was really blessed when I found this forum. They are brilliant and so much easier than discussing with a doctor who has little experience in the field! Don't be rushed into reductions by the doctors flares are quite unpleasant. Its a marathon not a sprint. Good luck
Welcome. Ask away, any time of the day or night. There's always someone around. For us longtimers (me 61/2years), we can talk from experience, which is so valuable because sadly the Drs have no idea what it's like to have PMR because they've never had it! The "text books" are way out of date in saying PMR lasts 2 years and Prednisolone is not the ghastly, awful drug that they make it out to be. Once you get things under control you can have a pretty good quality of life. To boost your spirits if you feel a bit low, I still play, tennis, golf, enjoy long walks, swim and SKI, but not all at the same time!!
I appreciate where you are coming from Pmrnewbie2017. Delighted you haven't been badly affected by pred. However, some of us have. Pred is a necessary evil and deals with the inflammation. However, for some of us the drug has had devastating consequences. It can't be helped but not everyone will agree with you.
Higher doses certainly have potential for difficulties- but it does seem to be very individual- as much in life is.
My intake of Pred [GCA] fortunately didn’t have long term affects on my health. But as you know much damage was done beforehand… so perhaps that’s Karma. Whatever, you can only play the cards that are dealt… 🌸
Cheers Viveka. Got chatting to a tall stumbling guy when visiting surgery Friday and turned out to be mad cyclist like I was. He's 78 and 4 yrs ago was competing in a masters event and crashed badly. 74 at the time. Broke femur and collar bone and ribs but worse, damaged lower spine. He's local to me so we'll meet up and chat about the dolomites and other rides we share as well as bikes and generally grumbling about our condition. 😂😂
I much prefer Jung's world view to Freuds. Popper surpasses them I believe. Maybe I recognised something about him being a cyclist. Probably instinctive or maybe it was just his condition made me talk to him. Either way we are now in contact. He was offered an operation to ease the nerve in the spine but told that if it failed he could lose the use of his legs. He refused the op.
Well done for finding the forum and taking advice onboard Tilly B. The only thing I would add is that docs are too fond of prescribing AA automatically and it is sensible to have a DEXA scan before you do, particularly at 54! If they won't do one on the NHS, then private is a good investment.
Also, although most people on the forum have had GCA or PMR for several years, some people do find the illness has burnt out within the two years the doctors think is the magic number. Thing is we don't know how long they last for us as individuals. The most important thing is not to try and rush, as you have already gathered, cause that is self-defeating.
Welcome! I am 55 and the steroids are a lifesaver for me, I am even working again Definitely stay on 15 mg and don't be surprised if you need more to really clear the inflammation and pain.
I was very recently prescibed Alendronic Acid by test message (I have been on Prednisolone for about 11 months!) So I got a DEXA scan (privately for speed - I needed a referal letter) and I have since discussed my results with my GP.
Do I really need to take them? The advice was "Yes: and that although my scan did not show oseoporosis, it is preventative - because I am on steroids and likely to be on them for some time (given my present speed of tapering.)" Then followed a discussion on my fears of side effects. My GP ended the conversation with "good luck!"
I then worked out my risks using FRAX calculation.
"Moderate doses of glucocorticoids (2.5–7.5 mg prednisolone daily or equivalent) are the assumed exposure in the FRAX calculation. For high doses (>7.5 mg daily), MOF probabilities are upward revised by about 15% and hip fracture probabilities by 20%. Simple adjustments can be made by hand"
Using this tool and adjusting for higher doses has put me in the take "the treatment" range. My GP was right. However I'm still full of reservations....
Good luck. Get a DEXA scan first if you can. At least you will be able to make an informed decision then.
I’d definitely wait until after the holiday to reduce steroids - an extra week ot two is nothing in the grand scheme of things . GP wanted me to take tablets for bone protection from the outset but prefer to wait for Dexa scan as nurse warned me the side effects are worse than steroids and they’ve nearly floored me ! Rheumatologist later told me not to worry as low risk. In the meantime I’ve tried increasing calcium in diet and take vitamin D alongside HRT too. It’s nearly a year since the scan was ordered so wondering if this is still sensible however
Hmm this all very interesting to hear about your gp/rheumatologist experiences. I now don't feel anxious about carrying on with the 15mg for another couple of weeks ahead of my Rheumatology appointment. Thanks!
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Definitely stay on 15 mg and don't be surprised if you need more to really clear the inflammation and pain.
Newbie!!
NEWBIE: My very first post: Can PMR and/or Prednisolone cause reduced heart rate?
Newbie with suspected GCA
Struggling Newbie
