New diagnosis

Hi Rachel, sorry to hear that you are suffering.  I am seeing a rheumatologist but I am only in the beginning of figuring all of this out.  I am still aching a bit too and seems to be increasing as the days go on.  I also have bilateral carpal tunnel and have to sleep with splints!  My hands are still a bit swollen too.  Awful not to feel like yourself.  The sad part is I am a very active person and it is hard for me to convince myself to work out - but I do in fear of weight gain.. I want to keep my weight below 130 lbs!

I wish I could gain weight. I've lost I 5 stone though I think that's due to muscle wastage because the GP weaned me off the steroid far too quickly. It is more usual I believe for people on steroids to gain weight.

Wow well it doesn’t sound like that’s much better than the gaining of weight. I hope you get back to where you want to be soon!

Bilateral carpal tunnel syndrome is a common part of PMR - and that your symptoms are increasing does suggest there is a lot going on your rheumy hasn't identified and confirms my suspicion you are not on anything like a high enough dose of pred. At the very worst your pain should be stable - but on enough pred you should get to a very low level of pain and then you reduce to find the lowest dose that allows that.

I know a few people who have lost weight while on pred - I'd swop!!!!

Sadly my GP doesn't seem to think I'm suffering. So on advice from people on this forum I've printed off a research paper - the Bristol Paper' and am sending it to him with a letter asking to be re-referred to the rheumatologist who first saw me. I've also had to push to be referred to the physio department of my local hospital and to be referred to a gastroenterologist regarding the problems I have eating. So if you have problems don't be brushed off but be determined to get the help you need

Yes weight loss is always more fun then weight gain. But if it’s muscle weight that you’re losing and that’s no fun you become weaker your joints become painful and you don’t look as good. Muscle weight and fat we are just numbers on the scale but if you can lose the fat not muscle all the better!

Whoops I lost 5 stone not the 15 that my previous post indicated but 5 stone is bad enough

I had muscular atrophy while on Medrol/methylprednisolone. It hasn't been a problem on prednisolone (UK) or prednisone (here). I am on Lodotra/Rayos which I think is great - worth the extra cost (not that it costs me) - as I have no morning stiffness and am sure I get away with a lower dose. Medrol was awful! Muscle atrophy, a black beard and major weight gain...

It is if you didn't have 5 st to lose in the first place! Even I would look skinny after that...

I thought the beard was due to me getting older but am wondering now if I've developed it as one of the side effects of prednisolone because that seems to have effected me in ways other people haven't experienced. I didn't get a choice of which steroid - it seemed it was that or nothing.

Hi Porgi, pred is very much the steroid of choice for PMR by the medical profession. I take Lodotra like Eileen, it is a form of pred but with a special coating so it gets absorbed when it gets to the gut rather than when it hits the stomach. I have had fourteen different side effects with steroids, some worse than others. I think while your hair falls out on your head, it grows on your face! 

Thank you for your very useful reply because I also used to have very thick curly bouncy  hair now it's very thin and has no curl or bounce. My hairdresser can't believe how quickly it's changed.

I had fine straight greasy hair. It is now very dry like a haystack, but it has gone curly!

Bizarrehow the curly goes straight and the straight goes curly.

Corticosteroids all have similar side effects although they can affect different people in different ways. But facial hair is a common side effect with any of them. I had problems with a lovely balck beard when I took methylprednisolone - but with prednisolone and prednisone no problem at all with that.

But don't you believe you are the only person with the side effects you have - list them here and I'll guarantee you will find someone else who has been there!

I have an epilator - it was a a life-saver then! For my face not my legs!!!!!

My hair has also gone dry and curly! I have a totally different look now: chubby cheeks, curly hair and thinner body than before.

Wish my hair was like yours - mine's gone from lovely condition, curly and thick to very, very thin and sort of greasy looking although it doesn't help that I'm so cold all the time that I have the electric blanket on all night and bury my head under the duvet. Plus I'm fed up of having to  clear the shower drain of it.

I have always wanted curly hair and the fact it is dry means I do not have to wash it so often. It has cost me a fortune in various hair moisturisers and boosters of every kind though!

This isn't a reply but  question re liquorice. I've just looked at the NHS website and it say's liquorice can increase the effect of prednisolone. I was eating  a lot of it when I was on a higher dose - as I love it - and didn't know anything about foods to avoid. I wasn't given any warning by my doctor and am wondering what effect it will have had.

Nothing worse probably than happens with some of the drugs they use as steroid-sparers - you get a better result for the same dose of pred. But anything that makes the effect bigger will also tend to increase the side effects to some extent as well.

This isn't a reply more of a question. I've just been on the PMR?GCAUK forum and notice that one person with PMR has reported brain for and Bladder problems. Well I have both; I'm getting better re remembering thing but at one time had to make lots of notes in order to remember the simplest things. I also have bladder problems and have to dash to the loo after almost every drink. Does anyone else have this problem. My doctor says it shows that I've got a strong bladder - holding on to urine - but I don't think I am.

"My doctor says it shows that I've got a strong bladder - holding on to urine"

If that is standard of your GP's medical knowledge I think I would be looking for another! What a silly comment!

Many of us have had memory problems both as a result of PMR and also due to pred - so sometimes there is a double whammy. The same applies for bladder problems. Both can cause problems, the bladder is a muscle so can be affected by the PMR too. Sometimes the bladder doesn't empty properly and the left-over urine causes problems and you may even develop an infection which then causes the urgency.

Pred can lead to interstitial cyctitis - and that causes the urgency. There are medications that will help.  

It is worth speaking to your doctor and getting at least a urine culture checked to see if you have an infection - not just a "dip" with a stick, a proper culture done in the lab.

Hi porgi

I developed bladder problems on preds i had frequent urination and urgency. My doc referred me to a Urologist and i eventually had a Urodynamics test where it was found i had developed an overactive and sensitive bladder.....my bladder could not hold urine and would not fill up and i would be going to the loo up to 20 times a day average is 8...since coming off preds it is back to normal..so it was the pred that was causing it for me...if you had a strong bladder it would hold the urine and you would not be dashing to the loo every time you drink...i do empathise with you it is such an inconvenience and really interferes with your daily life...my best wishes to you porgi....

I'm off the prednisolone, I came off it at the end of November and if anything it seems to have got worse. Saw GP this morning and forgot to take Eileen advivand ask for culture doing. However waiting for appointment with doctor at the hospital who is in that line so will tell him. However good news, my husband's and I wrote a formal letter to the GP enclosing the Bristol Paper about reducing steroid too quickly causing flare-up and asking to be referred back to rheumatologist and he read it and has already referred me. I also took a copy of details about sjogrens syndrome and he agrees it matches my symptoms so will chase up the other consultant I'm waiting to see and ask him to consider it. He is also referring me for other tests. Also he's going to go through my case notes with another GP in the practice, one who's not seen me before as he said it's good to get a fresh mind considering what is happening and then he suggests I see her. So it does pay to do some research and write a formal letter about your concerns. So thanks to all who told me about the Bristol Paper and Sjogrens syndrome.