Quickly diagnosed ....I think

hi welcome to the club nobody wanted to join your esr is a blood test indicating the ammount of innflamation caused by the pmr some drs use another blood test called a crp but at the end of the day its all relative ,your infammatory markers only give guidance to how you are responding to the steroids some people do not have high results ,you will learn as you go along that it is how you feel that has most significance . once your symptoms settle your steroids will be slowly reduced keep in touch and we will guide you through the journey but its a long haul so be kind to yourself , the good news is men tend to have an easier journey than women !!!!! i am sure others will come along to help but post your ??? as and when they crop up carolk

Thanks Carol , without being unkind I do hope your right about men not suffering as much as the women .

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

hi always be aware of gca get lots of info on signs and symptoms re headache .steroids can cause problems with waterworks including causing diabetes in the early stages of this condition it pays to keep your dr informed ,sometimes its not the pmr and you will get more able to sort out which is which as you go along , also steroids mask infections and as pmr is an auto immune condition we are more prone to urinary /chest infections its fun this pmr .keep the ?? coming you will be full of info by the time you have finished be aware not all drs get pmr right especially as you start to reduce because many aim to get you off pred too fast lets hope yours is a well informed dr .carolk

One of the things that often happens with inflammation is fluid retention around the inflamed areas and I had slightly swollen hands and feet - my shoes felt too small and I had to throw several pairs out. It is possible that the pred is reducing this as it calms the inflammation and the fluid has to go somewhere!

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

Hi Gary

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!!!!!

Well a quick update from me after my first visit to the nhs rheumy .( my first reumy was a private consultation because I couldn't wait a month ) . When he found out id had a private consultataion he asked why I was here today !!! Told him I coudnt have waited a month and he then said my gp should have phoned him .

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 .

oh no here we go again a rheumy who is bogged down with issues , there are young pmrs not many but they do appear . the dose your private rheumy put you on was high usually 20 to 15 is the starting point so that got your nhs rheumys back up ,you are never 100% free from symptoms steroids are not a cure only a controller of the symptoms , i had quite a poor result from my first start on steroids but without them i would not be able to live a almost normal life !!!! 2 yrs on i am down to 7.5 mg but i still ache and have fatigue ++ so your rheumy is talking through his hat , make sure they look at alternative diagnosis just in case because unfortunately pmr does not have a definiative test that says yes you have got pmr . keep plugging away and dont give up i must admit i do not see my rheumy he was not at all interested so i manage my pmr with my gp good luck carolk

If it helps anyone.------ I've had PMR for just two years. I've been able to drop the dose down twice, to 4mg but it has flared up again and I have to take 7mg per day. I get really annoyed with the medics. All they bleat about is cholesterol, but PMR is my immediate concern. It did go completely for a couple of weeks but the Doctor kept me on 5ng and added Calcium tablets and Andrionic (spelling ?)acid tablets. It immediately flared up again !!!!!!! Since Prednisole is used to correct for excess calcium, I suspect the Calcium tablets neutralised the Prednisole Anyway, I appear stuck with it until it abates naturally and keep trying to slowly reduce the dose. (P.S. At the risk of giving too much information, I find constipation appears to slow down the prednisole, bugger, and I have more pain than usual then.)

Calcium only interferes with pred if you take it at the same time - you should always allow 2-3 hours between so if you take pred in the morning - take 1 calcium tablet at lunchtime and one with your evening meal. It should always be taken with a small amount of fat - a cup of tea or coffee with milk is enough to transport the calcium and vit D from the gut to the blood.

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

Thanks Eileen. I dropped both the Calcium and alendronic acid after a few weeks. Coincidentally, there has been a recent report which links high calcium intake to Heart problems.

Best wishes re your fight with PMR.

I wouldn't have dropped the calcium - pred makes you excrete more via the kidneys and having more gives you body a better chance of getting it into the bones where it needs to be.

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

Eileen - you are a real fount of information. Why shouldn't you take calcium at the same time as prednisolone? Have often taken mine at the same time as pred and omeprazole and GP has never told me any different.

Hope the sun has made everyone feel a little brighter even if not more active!

Gill

It is known that patients taking higher doses of pred apparently don't absorb calcium as well - and that is part of the osteoporosis problem if it is longterm. There is some dispute as to WHY. Some evidence exists it may be something to do with the way vit D gets turned into the active form but no one really appears to know. It does tell you in some data sheets (the paper that comes in the box with your tablets) to keep a few hours between taking them and a lot of pharmacists will tell you when you pick up your drugs. Though thinking about it, I suspect that is much more likely in a small independent chemist where the pharmacist knows you and sees you regularly. How often do you see the pharmacist in the big chains, and it's even worse in the supermarket dispensaries.

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