OK so the past few days have been a bit of a nightmare to say the least, but at the end of the day, having spoken to several others who are on steroids for PMR, I have drawn the following conclusion.
I need to get off of them as soon as possible.
I have been on them for just over a year now and never have I had so many issues with my health!!
Blood tests - Raised Leukocytes, raised white blood cells, raised red blood cells.
It would appear repeated UTI's , traces of blood in urine from tests. , some diagnosed at hospital, others at GP ongoing discomfort continuous urge to go to the loo. Last visit to A&E for sciatica, diagnosed with UTI and given antibiotics, but would appear that only worked in the short term.
Bruising, at the slightest knock or bang
Redness and flushed face, skin is itchy and flaking. No moisturiser tried makes any difference whatsoever.
Generally feeling that I have really had enough of all of this !! Just one thing after another and I am totally convinced that there was none of this prior to the prednisone.
So I am tapered down to 9mg.
My God the temptation to reduce it by more and quicker than doctor suggested is so high, however, I am going to stick with the recommendation of 1mg per 2 months.
Fingers firmly crossed. !! 🤞🤞🤞🤞
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gillsky8
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I had fourteen steroid side effects I reckon eg hot sweats, straw hair, bruising, red blotches … it does get better as you reduce apart from the adrenals not liking being woken up!!
I know the feeling all of the above , my worst is weight gain and sweating , i am now down to 7,5 and im stuck atm. I taper half an mg every 6 weeks. I tried to come off faster and felt so ill, i could not do it. Waiting for a new hip ,so i keep plodding on till i can walk with out pain and be Pred free. Good Luck .
Thanks piglette I would be interested to read your whole list of side effects to put my mind at rest. For instance I had an endoscopy and the technician said that polyps in the food pipe and top part of the stomach were probably due to Pred. Now I am waiting anxiously for the results of the biopsies under the two week cancer window. Cataracts have now been done and were made worse by Pred. I had blurred vision for months. I have had bursitis below a hip and still have twinges and I read here that is another side effect.
Then I heard Dr Mackie say that they cause low mood and memory loss in the recent You Tube. I have short term memory loss suddenly and was considering having a brain scan for dementia. I do understand that UTIs can also cause this.
My hairdresser remarked on the straw hair on one side and had no idea what caused it. I had never heard of it before. If we had the list at least we would understand what Pred's side effects are and not worry so much.
sounds all too familiar. My doctor said “it gets a lot better when you get under 10 mg.; just wait until you get under 10 mg.” He was right…it did get better, especially the utis. Not a lot, but better. I don’t think I’ll get off steroids, but that’s another story for another time. in the meantime, just keep plugging away, take what you need, slow and sure; you can get there.
The adrenals start to complain for some people as they cut the dose of steroids and the adrenals have to wake up having been asleep for some time. I mainly was virtually comatose around 5mg and had trouble lifting my hand to scratch my nose even.
Now I understand what you mean by adrenals turning aggressive. Thank you! I've been feeling really well while on 7 mg., but today I go down to 6 mg. Today, while I still have some good energy, I must get a few tasks done before the adrenals notice pred is reduced.
Once you get to these sort of doses -always better to reduce by 0.5mg and one of the slower tapering plan we always suggest. Help illness and adrenals.
Thank you so much the UTI's seem to be a particular issue for me, nearly every blood test has shown high levels WBC and red blood cells. It is simply ages since I had a urine sample done, and although it showed just traces of blood it's got me really worried again !! Seems I get over one hurdle and another one throws up something else. Particularly concerning atm as hubby just diagnosed with prostrate cancer having had blood in urine and tests done. No wonder I am feeling neurotic. No other symptoms whatsoever, but I guess i am fearing bladder cancer for me now. Certainly from everything I have read and googled (not such a good idea I know) Steroids can be the culprit for traces of blood high Leukocytes which I have had and isn't that symptomatic of UTI ?
Last time at hospital UTI diagnosed and given antibiotics. Seems sensible then that I take an ongoing low dose which I assume 50mg. of Nitrofurantoin is to keep this at bay and hopefully that will take care of the issue.
Seems to me that a lot of GP's don't know so much about steroids and issues using them.
I understand your frustration and annoyance with the side effects of pred but suggest that while you are coming to terms with the shock of finding out about your husbands prostate cancer you should not think too much about tapering your dose. Emotional stress seems to feed PMR which is never a forgiving partner at the best of times.
In my first year of PMR I had months of repeat UTIs which seemed to be related to the calcium supplement I was taking. Nitrofurantoin was not effective, Trimethoprim cleared them up and now I have about one episode a year. The GP prescribed a vaginal pessary to improve general internal dryness which can cause of UTIs.
For your skin You can ask your doctor for moisturising products which are better than OTC products, I think lots of people here use Doublebase which is quite costly to buy.
As others have said, it does get better in time but challenging PMR is unlikely to help and could lead to more frustration. Slow and steady wins the race. Take care of yourself and your husband, xx
Do you suffer from any other signs of dryness? It is common in autoimmune disease and contributes to persistent UTIs. I posted about this sometime back
Certainly, topical hormone treatments help a lot so do ask the doctor. Something also tells me the vaccine is being offered - didn't someone post about it recently?
you are down to 9mg...you are winning...don't rush the taper..you don't want the PMR to raise its ugly head again (or risk GCA). Many of the side effects ease off below 9mg but not anyinduced adrenal insufficiency. However, tapering slowly does help the adrenals to wake up slowl...a rushed taper won't help that situation either. You are entering a dose regime that has many less steroid side effects...rushing the taper won't help...slowly slowly
I’m in exactly the same position as you at the moment. I never had to take any meds before Prednisolone for PMR in 2022. Same blood results, bruising, flakey skin, UTIs etc, plus osteoporosis and memory loss, in fact someone (not my doctor) is going to phone me from the surgery tomorrow to discuss the blood results especially cholesterol.
I’ve recently had cataracts done as they suddenly got worse.
I’m down to 4.5 Pred but reducing at the rate of .5 every 6 weeks since I got to 5mg. Last time I managed to come right off, all the symptoms came back after a couple of weeks.
I agree 100% on your view on the side effects of steroids. Regrettably it’s currently one of the suppressants of choice for the symptoms that are generically termed PMR. It is not surprising that most doctors are so keen to reduce steroid intake as quickly as possible. Also unfortunately, a lot of people who develop PMR also have several other issues and the side effects of steroids all get a bit lost in the general overall health picture, but the damage is there… also for older folks like us, steroids mask the natural aches and pains of old age, giving that falso sense of well being… so when we start reducing and the old aches and pains and other gremlins like arthritis etc. reappear many folks mistake it for a flare or a PMR rebound and reach for more steroids. That is why self medicating is so dangerous, you can get trapped in the endless cycle of lowering and increasing steroids, hence this forum’s very healthy recommendation of never following advice other than from a clinical doctor who has the full health picture and health history of their patients.
"for older folks like us, steroids mask the natural aches and pains of old age, giving that false sense of well being..." I know what you mean! I hit a "sweet spot" a few weeks ago, mentally and physically, but today I lowered pred dose (per doctor's order) and predict that my sense of well-being will change.
I absolutely agree with you! I have a friend? Who almost puts the phone down on me if I mention the word!!!my sister says she’d rather go on painkillers than go on the steroid journey! Having seen what I’ve been through! So am now on 1.5 (as many of you know!) and am on the last! Very slow lap. But.. I’ve had my first ever FALL! Trying to close some high windows!! So am still in shock a few days later so must delay going down a quarter for a few days.. (Dorset lady’s regime..I )have had no flares! Can still put my arms above my head.. as I could a couple of days after the first steroid tablet..seemed like magic at the time… but 3 years later…. Goodness…the sweats .. hair loss.. etc etc etc
My daughters have found it very difficult to understand.. and I think it’s only people who’ve actually beeen on the steroids that actually do understand… and the confusion between advice from gps and rheumys!!! Ok!!! Enough.!!!! Am left now with lazy adrenals and the shock and bruising of the fall.. and I shall take things very very gently!unfortunately holiday cancelled .. daughter suddenly got job… Life at 86.. Byeee!
"My daughters have found it very difficult to understand, and I think it’s only people who’ve actually been on the steroids that actually do understand." I totally agree with this. Our condition is one that very few people have heard of. They don't understand the condition itself and don't understand the many side effects of chronic steroid use.
Tv advertisements educate people about psoriasis and its treatment plus a host of other conditions for which one can take a pharmaceutical. PMR is never mentioned because pharma does not have a new drug to promote for PMR. Cortisone treatment came about in the 1950s. You don't see marketing for a very old drug such as prednisone.
If a new drug could effectively treat PMR, there would be tv ads to familiarize the public with its symptoms. In the meantime, we might have to deal with not being understood, perhaps called malingerers or hypochondriacs, or perhaps offered a solution such as, "you need to get a dog." I'm sure readers of this forum could come up with any number of solutions (some of them laughable) offered by relatives or friends.
We gather strength from reading this forum. Thanks to the posts from people who do understand.
I should add that both my family and I have adjusted to the new me (the PMR me). My daughter who lives nearby has become a source of strength due to her friendship. I am thankful.
If there are only small traces of blood then I think that vaginal atrophy should also be considered. Thinning skin and vaginal abrasions can occur in the whole of the vulval area. I was recommended vaginal estriol and, so far (it’s early days), I haven’t had any further symptoms of a UTI. Two courses of Nitrofurantoin didn’t clear up my UTI. I was subsequently prescribed Trimethoprim, which I noticed from my records was the antibiotic which I had always been prescribed previously. I don’t feel that 3 days of Nitrofurantoin is enough to clear up a UTI completely. Previously, you were always prescribed a 5 day course of antibiotics.
I believe most of us share your concerns and desire to be off satan’s little helper. The side effects can be appalling. But for many of us, that has to be balanced against the effects of PMR; pain, inability to walk or move comfortably ( or at all at times), sleepless painful nights…Sadly pain killers and anti inflammatories have no effect. It’s a horribly complex, poorly understood condition and as I understand it, there’s no viable alternative. The steroid sparers are hit and miss and not without their own issues.
I’ll trade an acceptable, if not brilliant, quality of life given by steroids managing the PMR symptoms. I can function daily and after 7 years of ups and downs and much support from this site, I’ve reluctantly accepted my wish to be off them isn’t going to happen. I’d urge you not to reduce too quickly and don’t ignore symptoms. PMR is the beast that lurks and comes back to bite. Good luck.
I got to zero once after just under 5 years. Bumpy ride of ups and downs and I was thrilled. Short lived though as within a few weeks, symptoms returned. I decided to ignore. Turn a deaf to the stupid head; it just gets worse and doesn’t go away. Had to start again but at a higher initial dose, 25mg for a few days, then to 20 and a very slow taper from 15mg. By last November was down to 5mg and had Covid booster which kicked off a major flare. Had to go back to the beginning and start another slow taper. Im currently at 7mg but stuck as even a half mg drop is noticeable.
I found acceptance was the most difficult part of the condition. I’ve had cataract surgery on one eye, awaiting the other. Steroid induced. I’ve had a uti, for the first time in 74 years, I’ve got AF, the steroids are probably eating my bones, BUT I can function. I know from bitter experience nothing else helps this life limiting and life changing disease. I can walk the dog, pace myself for gardening, cook and clean and know when I must rest. That’s the acceptance bit that comes hard when one is used to being very active, fit and independent.
Some of those "pred effects" can be experienced with PMR itself - including the hot sweats, they are a common effect of autoimmune disease. My hair went mad with PMR, I gained weight because of immobility, was consistently in a low mood, starting to become real depression because of being practically housebound because if I couldn't drive somewhere and park very close I couldn't go on my own. I was also in constant pain which added to the deprssion. I couldn't continue with hobbies, standing to prepare and cook food was impossible, my hands made the process agonising. Even making a cup of tea was fraut as lifting the kettle when full was downright dangerous. I crawled up the stairs on hands and knees and stomped down like a toddler, scared I would fall. There was more.
You can taper off the pred whenever you like - but beware: you may jump from what you think is the frying pan but find you land in the fire.
What you describe is very much how I was when I tried to come off pred. And I was falling over all the damn time, because I was too sore and stiff to steady myself if I tripped or over balanced. Very much a case of jumping out of the frying pan into the fire. I've kind of made peace with the thought that I may well be stuck on pred, as I don't think the PMR is going anywhere.
Rheumatology can't override the PMR - if the underlying autoimmune disorder is still active and causing inflammation you will need enough pred to "neutralise" it. ANd there is nothing they can do but wait. There are so-called steroid-sparers but they are not guaranteed to work, not even the very expensive biologics are 100% successful for everyone.
I don't blame you for wanting to stop pred, but just be careful and don't be tempted to rush it, or you risk a flare, besides the other issues with sudden withdrawal. Rheumatologist told me last August that I don't have PMR and to come off pred. I hate taking pred as I hate the way it makes me feel, so I went along with it, knowing in my heart of hearts that the PMR was still there. I reduced really really slowly from 5mg to 2-3 mg on 0.5 mg drops and still ended up in a massive flare. I've ended up on 6mg now and can't see that I will be able to reduce any time soon, so I am actually worse off. I would have been a lot better off listening to my own body than the rheumatologist, and there is the lesson learned.
The thing that you have to watch out for when you are reducing is that it is very easy to overshoot the dosage that you need to stop the inflammation and there can be quite a delay before the inflammation has built up enough for you to notice. I think that is how I got caught out. I think I would have been OK if I had stayed on 4 mg and that I was already in trouble when I dropped to 3.5 mg, but for me, it didn't show up until 3 months later. Anyway, I've given up the idea of getting off pred completely and my aim is to get back to 4 mg. I felt quite human at that dose.
From my own experience, I suspect that you might find that the side effects will be much more manageable when you get to about 6 mg, so long as the adrenals don't give you too much grief. But we are all different. Just listen to your own body and slowly slowly catchee monkey.
Unfortunately PMR will only go when it's ready adn there is no cure. You could try and do without enogh steroids but there aren't really any proven alternatives, and for me I'd take the probelems of steroids over how I was before I was on them any day, I was in agony and unable to do anything. Someone wrote a fantastic post on here called 'Patience' a few years ago which you might like. We all know how frustrating it is and can feel your pain. Best thing you can do is learn how to mitigate some of the side effects by reading through all the info on here. It is sh*t having PMR but we are where we are. Sounds like you may have more than just PMR goiing on there so make sure you keep asking questions re the bloods and UTIs etc. And we're here for you when you need us or need a rant, as I do often
I've had the same exact side effects you mentioned and more. They concerned me so much I spent lots of $ on medical appointments with specialists only to be told I am okay. So I've calmed down about them. Trying desperately to get off steroids also (2.5 years). 3 times unsuccessfully tapered (very slowly) to 1 and 2mg .
Everything you say is true; prednisone is indeed a double-edged sword. After five years, I got to zero (GCA)but remained on Actemra (States). Within six weeks, I flared and was indeed fearful of losing the one eye I had. It has been a roller coaster for two weeks, and I am now on 5 mg a day; possibly, I will taper a bit.....and maybe I won't. When I weigh the pros and cons, my choice is clear. I hope your husband's treatment is a success and wish you both well💞
Hi! I am a bit late to add to your post but as I have had horrible side effects I thought I would comment. I started at 60 mg and am now after 4 years down to 4.5 mg and things are better. I have heard voices and the door bell ringing someone calling my name when no one was there. Also hallucinations, the basin in the kitchen would suddenly change shape and tilt downwards, the same with the cooker. Very weird indeed.
I empathise and agree totally with the need to get off Pred, altho I’m on it for GCA so my situation is a bit different. All you say about nasty side effects, I have experienced but realise the need for a slow and steady taper. I will have been on Pred for 3years this Oct, I never imagined it would be that long! After a few flare ups iof GCA I slowed down my tapering and currently I’m on 2,5 one day, 3mg the next - I do this for 4weeks or a bit longer if my body is not coping. Dropping at a rate of half a 1mg tablet seems to work. Seems to be working so far and all my blood tests are normal - first time in ages that they’re all on the normal range tho. I’d say resist the urge to hurry things up as that could mean you are back at square one on a higher dose. I know it’s horrible and hard to endure but you will get there I am sure- we have to believe that and I do 😊x
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