Hello everyone - just an enquiry on behalf of a fellow PMR sufferer: has anyone experienced any bladder weakness since taking steroids? My thinking is that as the bladder is made up of muscle and as it is known that steroids can affect the muscles, then it may be a possible side effect. Also, have any other sufferers experienced tingling of the feet? Do hope this rainy weather is not adding to everyone's suffering, and there was I thinking I was going to melt in the promised 90 degree temperatures in August!!
I`m new to steroids for Polymyalgia having just been diagnosed but have had frequent courses of steroids for my COPD and yes I do have bladder weakness then. It`s another blooming nuisance to put up with.
Pelvic exercises are supposed to help but I just stock up on the pads!
All the best Shebob
Yes, I have tingling of the feet, practically all the time, after I've been up and on them for awhile. However, I have had this condition for a few years - but it's more prevalent now. Was diagnosed with PMR 2 months ago. I'm on 12 1/2 MGs of prednisone but have some fairly good days and once in awhile - almost like it was at the beginning.
Shebob and eleanorlane
Thank you both for your replies which I will pass on to our fellow sufferer - so now we have another couple of steroid side effects to add to the already lengthy list!
Shebob: good to have your reminder re the pelvic floor exercise which we are told we should all be doing.
Eleanorlane: Sorry to hear that you are yet another new sufferer of PMR but just enjoy those good days in the knowledge that the bad ones will lessen as you come down on the dose.
Best wishes to both of you and everyone else and do keep in touch as the information on this site is invaluable and it does so help to have people who understand to share our problems with.
MrsO
Yes. I was having bladder trouble, having been on steroids for a year but my doctor has given me some tablets which help. At least I have time to get up the stairs now days.
Spammy
Spammy - thank you for replying and I'm glad that you have found something to relieve what must be a very inconvenient problem. It may be useful if you could kindly let me know the name of the tablets you were prescribed please so that I can pass it on. Many thanks.
MrsO
HI I ALSO SUFFER WITH BLADDER WEAKNESS VERY EMBARASSING,ALSO TINGLING FEET HAVE BEEN ON THE STEROIDS FOR 1 YEAR NOW AND AT 20MGMS I HAVE HAD MORE THINGS GO WRONG WITH ME SINCE BEING ON THE STEROIDS?
JANETTE HOPE YOU ALL KEEP WELL
Hello Mrs O
The tablets (capsules)my doctor gave me are called Detrusitol XL 4mg tolterodine tartrate. for my bladder problem.
These may not be suitable for everyone as they do have a few side effects, but so far I have not had any problems with them. I think it is if you have some other health problems that you have to be careful.
I am trying to come down off the steriods from 10mg to 9mg having had to go back up to 10mg and today I am feeling terrible, like some old drunk, with the shakes and can't walk a straight line. You would not think just 1mg would make that much difference.
I hear that once you can get passed that first week it gets better, I must have done it once because I was down to 5 from 20 so must try again.
Good luck to everyone
Spammy 
Spammy - Thank you so much for letting me know the name of the tablets for bladder weakness. It's good that you are able to take them without the side effects you mention that some people have - in my case, for instance, I probably wouldn't have them prescribed as I have only one kidney and that is not filtering at 100%. Anyway I will pass this info on to my PMR e-mail contact together with the side effect warning.
Sorry to hear that you are having a bad day today - at least you didn't come over \"drunk\" in your posting! Hopefully within the week your body will adjust to the reduced dose and on the positive side at least you have got down there before! But it's so weird when you get these peculiar days that sometimes even come when you haven't just reduced. I had such a day on Saturday when I felt really disorientated and, like you, felt as though I couldn't walk in a straight line. I had been really overdoing it on the previous couple of days trying to spring clean a bedroom ready for an aunt to come to stay. I then find that a day or two without doing anything usually restores the equilibrium. So try and have a few days being positively lazy whilst your body adjusts to this new dose, and good luck.
Janette - thank you also for your reply although I'm sorry to hear that you have both of the problems I enquired about. Let's hope you manage to reduce down on the steroids to a lower dose where hopefully you will suffer from fewer side effects. Best wishes to you and everyone else out there and may you all have better days ahead.
MrsO
Spammy - Thank you so much for letting me know the name of the tablets for bladder weakness. It's good that you are able to take them without the side effects you mention that some people have - in my case, for instance, I probably wouldn't have them prescribed as I have only one kidney and that is not filtering at 100%. Anyway I will pass this info on to my PMR e-mail contact together with the side effect warning.
Sorry to hear that you are having a bad day today - at least you didn't come over \"drunk\" in your posting! Hopefully within the week your body will adjust to the reduced dose and on the positive side at least you have got down there before! But it's so weird when you get these peculiar days that sometimes even come when you haven't just reduced. I had such a day on Saturday when I felt really disorientated and, like you, felt as though I couldn't walk in a straight line. I had been really overdoing it on the previous couple of days trying to spring clean a bedroom ready for an aunt to come to stay. I then find that a day or two without doing anything usually restores the equilibrium. So try and have a few days being positively lazy whilst your body adjusts to this new dose, and good luck.
Janette - thank you also for your reply although I'm sorry to hear that you have both of the problems I enquired about. Let's hope you manage to reduce down on the steroids to a lower dose where hopefully you will suffer from fewer side effects. Best wishes to you and everyone else out there and may you all have better days ahead.
MrsO
I have had tingling feet since the beginning of my PMR (December, 2009) but just recently noticed the bladder weakness (which I had thought was a coincidental \"age thing,\" having had 3 children many years ago). I think I'm relieved that the weakness might be a side effect of the predisone, as I hope to get off of it eventually. Isn't this a wonderful web site? There are so many different symptoms, medications, prognoses, etc., but I find that to be comforting in perhaps a weird way. I wish the very best for all of us!
Hi Vierannie and welcome to what you have found, like so many of us, to be \"a wonderful website\".
With regard to the tingling feet, I have been advised to have cream massaged around the sole and toe area of my feet since having bad chillblains for the first time last winter in the belief that this would aid in the circulation of the blood into those very tiny blood vessels especially in the toe area. I am finding that the tingling has resolved so I don't know whether it is a conicidence that the massaging has helped or whether it is simply a case of now being on a very low dose of Prednisolone. The main worry was that maybe it was linked to diabetes but happily a recent blood test has proved negative. Still can't reach my toes very easily so am relying on my poor long-suffering hubbie to help out with the massage - He's not overly forthcoming with it (who would be?!!!) but better than nothing as I still can't reach my toes so I must be grateful!
Since my original post on this thread on behalf of a fellow sufferer, I have also developed bladder muscle weakness (a sort of urgency rather than stress incontinence). I now attend an exercise class which particularly works on strengthening all the muscles of the body including the bladder which are all at the risk of being weakened through the steroids, and I try to do the pelvic floor exercise whenever I remember! Not seeing a great improvement yet but still pulling in and hoping! :lol:
Very best wishes that you will have a smooth resolution of your PMR.
MrsO
Halo Spammy
I am trying to come down off the steriods from 10mg to 9mg having had to go back up to 10mg and today I am feeling terrible, like some old drunk, with the shakes and can't walk a straight line. You would not think just 1mg would make that much difference.
I hear that once you can get passed that first week it gets better
I shall be doing just that (10 down to 9 ) tonight ( My GP came up with what has turned out to be an inspired suggestion in my case. I had a lot of symptoms he assured me were reactions to the Pred. and taking the dose at night has alleviated many of them.
However I still get the \"old drunk \" effect from time to time. I'd be very interested to know if you can associate yours with anything. Time of day? Eating? Not eating? Poor night's sleep? Doing too much?
When I came down from 12.5 to 10 I had two or three bad days and all the experienced sufferers agreed that this was not unusual and give it up to a week, less if the pain was bad, before reverting to higher dose (Thank you Mrs.O, Eileen and everyone. I dare not go back to check who else in case I lose all this!! ) Well the pain was a bit much so I did go back to 12.5 but just for one night as I intended to alternate the doses for a bit. But, lo and behold as no-one ever says any more, after the next 10 day I was fine pain-wise so I shall try 9.5 for a week before trying 9 as my GP hopes I am doing. I think even half a mg. can sometimes make a difference. Trouble is we never know how or when or if any of the symptoms will manifest themselves. ( I think I must be in a Biblical frame of mind today. Can THAT be the steroids?? )
Hope this helps a bit, Spammy. It IS comforting to know that we are not alone as the wonderful video says. Until today, I thought I was the only one having to go to the loo at more frequent intervals.
Good luck and comfort to you all. BettyE
Hi MrsO
I have been on pred. since April and get tingling feet too.
I also get cramp in my feet.
Just ran a yoga class and had to stop half way because of bad cramp but then I'm having a 'fuzzy' day, reduced from 18 - 17 mg on Monday and today I'm all over the place a little achy in the shoulders but no real pain thank goodness. I do find that yoga helps followed by relaxation perhaps it's just something else to focus on
Koukla
Hi Koukla!
Just wanted to make a suggestion about the cramp in your feet. I mentioned in another post the other day about taking magnesium as a supplement in PMR. I often get cramps - before steroids as well - and have always used a magnesium supplement now and again which seems to help. My husband also gets night cramps and they disappear as long as he takes it reasonably often.
Whilst I know there have been medical trials of giving magnesium to kidney dialysis patients (as they have a major problem with cramp and are magnesium-deficient) where they have concluded there it makes no difference, I lived in Germany for years and now live in the German-speaking part of northern Italy and all the doctors I have met over here immediately ask if you have tried taking magnesium if you have a problem with cramp. Certainly it is not uncommon to have a low level of it when you suffer from PMR (and other autoimmune diseases). I take it about 50% of the time, my husband more often (especially after he's not been bothering and then had night after night having to bounce out of bed to put his feet on the cold bathroom floor! :roll: ).
Wondered if you'd like to try it,
cheers,
EileenH
Hi Koukla
If you also, like me, have only suffered from tingling feet since being diagnosed with PMR and commencing Prednisolone, then I feel it is probably due to a circulation problem caused by either PMR and/or steroids. It did seem to be a temporary occurrence with me and hopefully as you reduce the steroids you will also find it disappears.
Cramp is another problem from which I suffered badly at one stage but which now seems to have resolved. Eileen has recommended magnesium and certainly I have a friend who suffered badly until she took magnesium on the recommendation of her neighbour, an allergy research scientist. Brazil nuts are a dietary source of magnesium and I have a few of these a week - not too many as, of course, they are high in fat but still very good for you.
I'm sure you're right in saying that Yoga and relaxation can help - in fact, I find my Tai Chi class of great benefit and always feel quite energised after a class and very relaxed.
Do hope you continue to do well on your recent reduction.
MrsO
Thank you, Mrs. O, for your welcome and kind words. I have noticed that you are very compassionate in your other postings as well, and that is much appreciated. Besides the tingling, my feet are also swollen much of the time (not the ankles, just the feet). I had a neurological conduction done, and the specialist could find no reason for this. It seems that this disease is as mysterious to the doctors as it is for the patients, so here's hoping they are willing to learn from our many anecdotes. And here's hoping we all have more good days than bad!
MrsO, the previous posting by \"Guest\" was actually from me, \"Vierannie.\" I seem to be having trouble communicating on this website, but Im sure I'll get the gist of it eventually. Anyway, thank you for your support!
Hello again Vierannie
I, too, suffered from swelling around the feet and, in my case, knee areas as well during my first year with undiagnosed PMR. I was bed-bound for 3 months during that year so at the time thought it had something to do with my lack of mobility. However, Eileen has since referred in some of her posts to knee swelling caused by bursitis so in my case that may have arisen as a complication of PMR. So perhaps your foot swelling is also PMR-related especially as your conduction tests have proved negative.
As you say, Vierannie, this is a mystery illness in more ways than one that baffles even the experts but at least through this forum we are able to find the reassurance and support so often lacking from some of those experts!
Enjoy those good days and rest and spoil yourself on a bad one knowing that more good ones are around the corner.
MrsO
Hi Vierannie!
I, too, had swollen feet with PMR before I was diagnosed, mainly around the ankles during the day but in the evenings it got to my toes too. I also used to wake with burning feet - like a hot flush but only my feet :lol: - when the PMR was really bad last spring. The other time I had had similar problems had been whilst I was skiing at the end of the season when it is quite warm and sometime my feet used to feel as if they were exploding inside my ski boots! If I took my boots off when I felt it start and let it pass before putting them back on it was OK but if I couldn't do that the pain was excruciating. I have Reynaud's syndrome too (like the white finger vibration syndrome from using power tools) and the feeling is a bit like what is called by scientists/medics a \"reactive hyperaemia\" which is due to the sudden return of blood flow after it has been reduced for some reason and which I have had in my fingers before but I'd never noticed cold feet before it happened.
Once I started on steroids I realised the swollen feet had gone and at my present dose I still don't have any problem. However, if I try to go down by as little as 0.5mg/2 days the swelling is back. One of things I had with the PMR was pain in the outer edges of my feet - it felt a bit like walking on sharp stones or broken glass but would ease after getting going though it never went away completely. I also get pain and swelling down my arm from the bottom of my thumb joints if I try to reduce the dose. Obviously they're all connected but it would be interesting to know what is causing the fluid retention and how much of that is the cause of the pain. Mind you - it's a great excuse to sit with your feet up (properly, above waist level!)! I realised mine was much worse on the days I had to sit in my office chair in front of the computer for long periods.
BTW - you appearing as a guest the other day was probably because you'd got logged out on your page. I had the same problem and didn't notice. For some reason I seem to get automatically logged out every so often (about once every couple of weeks) and I don't always notice as I'm supposed to be permanently logged in. Computers... :roll:
best wishes,
EileenH