Three months in to my PMR I am still coming to terms with all the facets of this horrible illness . I am not in huge pain, just moderate discomfort , however I have now got the problem of extreme weakness and wobbly legs , plus a constant need to relieve my bladder .I have a short walk daily which despite setting out feeling pretty weak usually helps a bit..I am being careful to get a balance of carbs and proteins, whilst watching for weight gain .I was given a full CT scan and thankfully there are no sinister underlying problems .I am resting much more , so trying to manage the disease effectively .Do my symptoms ring true with others ? I am currently on 9 mg of pred for the next month ( reducing slowly from 10 mg) I have always had an abundance of energy and good health , but this is a nightmare ...Anyone else feeling the same out there ?
Tiny _ Tim
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Tiny_Tim
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Yes totally! I can really relate to the bladder issues, I don't care what anyone says it is connected. I feel better for a walk too. However, I don't feel as weak as I did before I was diagnosed. I can't really say my legs are wobbly but I certainly used to have balance issues. I hope you are getting enough Prednisalone to control the inflammation. You sound quite symptomatic to me even though you say the pain is not huge. Three months seems to be a short time to have got down to 9 mgs. I have been diagnosed for over a year and am only on 8 mgs now having started at 20 mgs. It has been a long and complex journey and a bit of stop start.
Yes - didn't really register the first time I read your post: did you feel better on your starting dose? The level of freedom from symptoms you achieved then is your yardstick. You are looking for the lowest dose that gives you the same result as then. If symptoms are returning - you have overshot the dose you are looking for. If you managed better than "moderate discomfort" then - you should be the same now.
A supplement of Magnesium is thought to relieve irritable bladder symptoms. I've just started taking 180mg/day of Magnesium Citrate as a trial but too early to tell yet.
I seem to spend most of my days and nights relieving my bladder hourly or thereabouts. I do not have any other symptoms like burning or itching. I just have no bladder control. Is this a PMR symptom? I don't know.
Yes, it can be. It can also be a pred problem. But PMR definitely can cause irritable bladder syndrome - I suffered for most of the 5 years pre-pred and had another episode when I had a major flare 5 years ago. There is medication to improve it and sometimes a cystoscopy may shed some light on the cause. Do discuss it with your GP.
I did have steroid induced diabetes. I went on the 8 week blood sugar diet and apart from losing 2 stone or 28lbs or 12.7 kilos, my diabetes is now in remission. So the constant peeing isn't from that, thank goodness.
I had an accident 10 years agol and was crushed in my left side groin. The subsequent operation to save my life left me with half of my bladder and surrounding tissue being numb. Thus when my bladder is half full it feels bursting! Blooming nuisance.
Regarding what they don't know about a commonly prescribed drug like prednisone, when I started on pred. I got a haemorrhage in one of my eyesmore than once and
I routinely woke up w th blood-shot eyes - the more pred the more like the bride of Dracula I become, the less pred.........
My, GP who claims special expertise having worked in an eye hospital gave me dry-eye drops.
Likewise no one at the surgery seemed to know about the thinning of the skin you can experience when I was treated for the "wound" caused by knocking a flap of skin from the back of my hand when a coach lurched forward and it took for ever to heal..
My hands are the major site for thin skin. They look like an 80 year olds hands but without the bruising often seen. Wrinkled parchment could be the ideal description. I hope it thickens up again post pred! If and when! On the semi plus side my fingernails grow apace which they have never done before. Still don't wear nail polish though in case I have need for hospitalisation again.
Nobody warned me about the thin dry skin, was a major shock when I brushed my arm on a rounded pvc door frame and the skin just rolled up! Only my hands and arms are affected with the thin skin but all my skin is very dry, I have dandruff on my socks! I find Eucerin lotion or E45 are both helpful.
I have same symptoms....I am down to 8 mg having hard time getting to 7 as symptoms a lot worse when I did that. doing every other day see if that helps. I am with you this really sucks.........
However you try to do it, if you have reached the endpoint, the lowest dose that manages the inflammation and therefore symptoms as well as the starting dose did. And if 8mg works, 7mg doesn't - you have probably got there for now. It doesn't mean you won't get lower. Just not yet.
True! I have come to the obscure conclusion that it is best to let PMR/ Pred have their fun together and just go along for the ride! Nothing we do will alter what those two are going to chuck at us next. The only thing we can do is to go as slowly as possible on the reduction, ignore the doctor when he says speed up and do as pred decides!
my doctor is not so much trying to get me off as me. I don't like being dependent on taking prednisone. You have a good outlook though just go along for the ride albeit a bumpy one sometimes.
There aren't many people who like 'being dependent on taking predisolone' but you have to accept the fact that unfortunately it's the only drug that will control the inflammation caused by your PMR. And no matter how much you wish to be off it, there's little point if you still have the underlying PMR present, and as we all know no one can say with certainty how long that is going to be.
Many people take different medication for life for all sorts of illnesses, hopefully you won't be one of them, but if it gives you a better quality of life then why not depend on it? Not putting you in that category but I find it strange that some people think medication - bad, no medication - good!
You could try getting through PMR without Pred, but you would probably need to take NSAIDs or other medication which could do your body more harm. Plus your inflammation wouldn't be controlled properly, so even more damage to body.
Pred gets a bad press, but it's no worse, and certainly a lot better that some medication.
I agree with everything DorsetLady says. I had 5 years of PMR without pred - and believe me, that is a good way of learning to accept that pred is your friend and not an enemy. None of us LIKE taking pred - but it does give us our life back.
I understand I have to take it and am really ok with it as I know that without it I don't move...I don't like taking it as I don't like taking medications long term never sure if I am curing one thing and causing another..but this is what it is.....I agree with everything on this blog really has been so helpful to know that if I have a question every one is there to help. Thank you
I feel it might be partly due to the muscle weakness caused by the Pred. That ought to improve w reducing Pred dose.
Couldn't it also be linked to high blood sugar caused by the Pred? If so, you do need to check it out. Frequent urination can be a sign of diabetes. I have steroid-induced diabetes . . .
Yes, I did have steroid induced diabetes. I went on the 8 week Blood Sugar Diet and am now in Diabetic remission and not on any diabets drugs.
Highly recommended: The 8 week Blood Sugar Diet by Dr Michael Mosley. Free except for the cost of the book about £3 or 4. Tesco, Amazon, Sainsburys sell it or you find it on the website of the same name.
Hi Tiny_Tim, You fit my state at the moment, 6'3"-16 stone-81years.PMR,10mg going on 9-DSNS route. Wobbly ,weak legs especially noticeable when rising from a seat, relieve bladder often, some sweating ,comes and goes, little feeling in feet .a bit cramp and yet I had a good swim today. crawl-all arms, legs, feet going well but I feel my body is just not right and feel concerned-also heavy headed ,some pain now and then. What have you - dear fellow sufferers, please -John I have not had 'these' symptoms before - plenty other well known
All the best then😃. And one "side effect" of the diet is weight loss. I lost 2 stone, or 28lbs or 12.7 kg ( take your pick)! Despite being on steroids which had caused the increase in the first place! Bonus!
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