Quickly diagnosed ....I think
Posted , 5 users are following.
I've added my story in the brief history , had all the symptoms five weeks ago and blood tests three weeks ago ...my esr was 84 not that I knew what an esr was or pmr for that matter . Anyway been on 30 mg for two weeks and my esr is down to 63 and I do feel much better . I'm trying to educate
Myself regards what I can expect . I'm 49 and work for myself as an electrician so to suddenly have to slow down has been a bit of a shock . My general day now is get up , breakfast , take steroids and rest for an hour then hot shower . Then I try to do a few small jobs but find I can get tired easily so don't want to overdo it . I've read lots of the tips on here and thanks for everyone who has posted as it all helps
0 likes, 13 replies
carolk
Posted
gary49
Posted
I'm not into much pain . I liken it to a dull toothache in different parts of the body . I do feel a bit tired but am
Learning to rest and not over things . Does anyone else get a slight headache with pmr ? Could it be dehydration as I find I'm visiting the toilet lots more since starting the pred
carolk
Posted
EileenH
Posted
Also, I think headache is one of the 82 documented side effects of pred. But as Carol says - mention it to the doctor and get it checked out.
Is the hour's rest in the morning because you are so exhausted after getting up or are you having to wait for the pred to work? Yes you need to take pred with food to reduce stomach problems - but the earlier you take it the better. Some people wake early and take their pred with a yoghurt or a sandwich they left out by the bed overnight and then snuggle down for another kip for an hour or so. If you need the hot shower to get moving - you could try an electric blanket that you use BEFORE you get up to warm the muscles to allow you to get going. You will find the amount you can do should improve over time - but since you need to work, don't allow the doctor to try to rush your reduction of pred. Coping with a job is very different to coping with day to day household tasks - which won't hurt if you leave them.
Eileen
MrsO-UK_Surrey
Posted
I replied to you on the pinned history thread so am just copying it here:
Hi from me too Gary and yes, of course, we'll try and answer any queries you may have from our amassed experiences with PMR and it's linked condition GCA.
I'm glad to hear that you have started to feel much better especially as you are of working age - we always feel in awe of those people who have to work with this painful and debilitating condition. Hopefully you have considerate and caring employers, although it's fair to say that no-one really understands the limitations of PMR unless they've experienced it.
Lots of good luck wishes for a smooth journey to recovery.
PS: Referring to you latest post, yes many of us get headaches along with PMR, probably connected to the inflammation or the steroids, or both! However, do be alert to any new symptoms of worsening head pain, jaw pain or any problems with your vision. These can by symptoms of the linked condition, GCA (Giant Cell Arteritis) which should be treated as a medical emergency with high dose steroids in order to protect our eyesight.
With regard to extra loo visits, I too suffered from that and at the time put it down to the inflammation affecting my bladder - it is a muscle after all and the inflammation of PMR affects the muscles. Don't cut down on your drinking though - water, that is!!!!!
gary49
Posted
Anyway he is very sceptical I have pmr as he says I'm far too young (49) and in his lifetime he will only see
Two or three cases of someone this young with pmr.
He says there is nothing he can do until my dosage starts to come down And here's what is annoying . The
First reumy starts me on 30 mg , the second says that's too high and he would have started me on 15 . It
Seems to me he's a bit annoyed I went private . I also asked him how I should feel after the steroids take
Effect as I still get a little pain in random joints and muscles but according to him I shoud be 100% the way in was before I got Ill.
I'm keeping an open mind at the moment as I too thought I was too young for pmr but to me I had all the
Classic symptoms and the steroids took say 80% of my problems away so generally that's an accepted
Diagnosis if I'm reading correctly .
carolk
Posted
worrynot
Posted
EileenH
Posted
Muscle pain is a side effect of alendronic acid - I have not taken it, my bone density has remained unchanged and fine for 4 years. You need a dexa scan before taking it and insist on it, AA is unpleasant stuff and the latest recommendations are NOT to take it forever, 5 years maximum to avoid the possible long term downsides. Many doctor still believe the marketing hype of "prevention is better than cure".
The pred doesn't CURE PMR, it allows you to manage the symptoms until it goes away on its own so the reduction is to find the lowest dose that works for you, hence our recommendations to go down in small steps so you don't miss the point at which you are just fine. Once the inflammation starts up again it is often more difficult to sort out. Constipation shouldn't affect your pred - it is absorbed from the stomach if it is ordinary pred (i.e. not enteric coated pills which are red and brown) so don't just assume that is what it is. All too easy to assume it is the pred causing things.
And yes - it infuriates me when the docs won't try to see the wood for the trees. I have PMR, it affects my quality of life badly, pred is my only option. You wouldn't demand a rheumatoid arthritis patient drop her drugs because of the long term side effects. Don't ask me to - without pred I have the same symptoms except for joint erosion. It hurts and stops me living...
Eileen
worrynot
Posted
Best wishes re your fight with PMR.
EileenH
Posted
The publicity in the media about that report you mention was rather biased: it was people with no real need for calcium supplementation who experienced cardiovascular problems when taking calcium-only supplements. Providing the calcium was taken parallel to an adequate vit D intake (preferably also as a supplement to be sure it's there) there seemed to be no untoward effect as is also the case with dietary calcium from dairy and veg. It is when there is a load of calcium floating around with no way of it getting into the bones (which needs vit D in adequate amounts) that it gets deposited in the artery walls, making them hard and less flexible. That is also the reason why if you need more vit D because you have been shown to be deficient (and a majority of us are) you should not simply take more of the combined calcichew or calceo tablets we are routinely given. That ups the calcium intake too far. Extra vit D should always be added using vit D3 tablets only. GPs seem unaware of that aspect - I have come across a few who think it is fine to take 3 or 4 calcium/vit D tablets instead of the recommended 2.
Good luck to you as well :-)
Eileen
gillb
Posted
Hope the sun has made everyone feel a little brighter even if not more active!
Gill
EileenH
Posted
You shouldn't take calcium tablets along with rhubarb or spinach either - it forms clumps of an insoluble substance in the gut which can't be absorbed!! Paediatric patients who need pred are told to take it once a day before 7am for best effect (not usually the antiinflammatory effect admittedly) and we are supposed to take it early in the day in one single dose - but there are patients who are told by their GP to take it in divided doses and I've come across quite a few who don't "get round to taking it" until mid morning or even later. Then they wonder why they spend half the day waiting for it to work!
And while we're on the subject - antacids, including omeprazole, interfere with the absorption of calcium too and are quite capable of causing osteoporosis on their own without the aid of prednisolone. Do you really need the omeprazole? I've only taken a PPI briefly last year when I was in hospital on a load of new and different drugs for another problem and having discussed it with the doctor no longer take it. I take an anticoagulant (a blood thinner like warfarin) and the concern was if I did have gut problems I could bleed badly. We agreed I'd take it if I used NSAIDs (aspirin, ibuprofen) more than just single doses as they also can cause gastric irritation and inflammation. The form of pred I take is a delayed release form, 4 hours after taking it with food it is no longer in the stomach when it is released so shouldn't cause a problem. The same applies to the enteric coated form. And loads of contributors to these forums take their pred with live yoghurt and find that they have no trouble at all - whereas the omeprazole caused them unacceptable side effects , some being quite serious.
I might appear a fount of information here - but I bet you know more about more lady-like stuff rather than medical science (not that I'm suggesting the science is unladylike but I haven't a clue about makeup for example)! Signs of a very happily spent youth :-) I suppose. The entire family works/has worked in the NHS as medical scientists/technologists, nurses, paramedics - and other ambo staff by marriage!
Eileen