Sorry if a bit long winded but I need this off my chest as I’m banging my head off the wall at the moment .
I keep a very precise diary on my meds and symptoms . I have been taking pred at different doses for 8 years currently on 3mg , 10 months ago I started MTX injections currently in 10mg I hoped it would get me off pred but not looking that way . I’m 62 now started having LUTS issues when I was 50 , BPH was diagnosed got to the stage now that I have to take meds to control my constant peeing . About a month ago I started Saw Palmetto natural remedy for this issue and amazing result . I am constantly trying to reduce the pred using the dead slow system failed many times . Only this time as always when I got to 3mg not only did the backache start the knee issues , fatigue all the stuff that just makes you feel old , my prostate issue is worse than ever , even on the Saw Palmetto which in less then a month all most sorted it out . When I broached the subject with my Rheumy they said talk to urology , when I spoke to them they say speak to your Rheumy , is it me or isn’t it obvious the whole thing is connected and probably always has been , my bloods are completely normal ESR and CRP . My GP just telling me to contact the consultants . Dr Hughes Surrey Rheumy told me some years ago I would most likely be on pred at a low dose for the rest of my life , think he might have been right at 4 Mg I can lead a normal life just that 1mg and it all falls apart , question is what will 4mg do to my body long term , would you sooner have 10 years quality life or 15 miserable . I guess that’s what it comes down to .
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Gaz227
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Can't empathise on the BPH for obvious reasons but I have had LUTS problems for many many years. They were there long before PMR and it was originally decided there was a narrowing of the urethra that was causing an obstruction an incomplete emptying of the bladder which led to UTI symptoms. A slightly nippy procedure to stretch it improved things for about 10 years, as have the repeats over the years. There are a lot of reasons or LUTS with PMR and pred - and they aren't easy to identify. Do you take calcium supplements? They can cause grit in the urine and mechanical irritation - a bit more pred calms it down. Just a thought.
If there is a connection it may be of the same sort as my atrial fibrillation issues. I can have it under control for yonks and then a slight flare of the PMR sends it crackers. A bit more pred sorts it though - and the cardiologist just said, if you can manage it better with pred, go ahead, I have nothing to offer besides what you have now, and it is obviously inflammation somewhere that is the problem. That was part of the reason for me being on such a high dose of pred - but it was serving 2 purposes, good PMR symptom management AND better a/f management.
Last spring I was put on tocilizumab to get the pred down - worked fine, I was at 7mg pred (from 19mg) and then I got the bivalent Covid booster. Same evening - lots of a/f and it persisted, I was having days of 10 hours of a/f and more. I can't do anything, can't plan to go out. Normally I get an hour or so and can go weeks between - not since the end of November. Even preparing a meal is hit or miss, thank goodness for pre-prepared salad is all I can say! Next to no ready-meals here and I live alone. I think I have it under control now - but I had to up one of the heart meds and am back at 11mg pred, 1mg less, all comes back.
Even with the TCZ my rheumy is only expecting me to get to 5mg and even 7mg was a bit of a struggle adrenal-wise. I was very fatigued. I've been on pred for 13 1/2 years, much of it at above 10mg - I haven't crumbled yet, I have no osteoporosis, no diabetes, cholesterol is up, mainly from the TCZ, my skin was delicate at above 15mg but since I was able to reduce below 10mg it is much better. The thought of 4mg for the rest of my life that provides good management - bliss! I had 5 years of PMR no pred in my early 50s - and it was hellish! I have had 13 years of decent life with relatively high doses of pred - not just PMR causing that as explained but also 3 years of caring for my seriously ill husband. If pred makes life bearable - that is fine by me.
I tried to discuss the cardiac issues with the rheumy - the top arrhythmia expert cardiologist is confident that is due to the autoimmune part of PMR, the rheumy just shrugs and says I don't know anything about hearts! I probably know more than he does, but he accepted the pred situation. My pain specialist accepts the link between the Covid jab on the immune system and the arrythmia (she is an anaesthetist, sees it on the ICU). The GP isn't bad on the PMR - she is rheumy trained - but the rest is a mystery even to her.
I hope that, as is usual, the effects of the jab will fade over time and I will need less medication to manage the a/f. But I have no intention of having any more time like over xmas when up to 12 hours of a/f per day stopped me even going out for a pizza, my traditional meal on the 25th, and I couldn't even face cooking the duck and venison I'd treated myself to as I'd have had to stand at the stove. Bah humbug!
Thanks for your words, I keep telling myself there are people out there a lot worse off than myself, but when these things affect you to the point that even going out for a walk is stressful, thinking where the next toilet is, it's no fun. I think to get any sort of conclusion i will probably have to go private. I have more blood tests on Monday and a phone consultation with the Rheumy the following week, if i don't get any answers or a game plan think that will be the kick to go private, thanks again good luck with your a/f.
Sorry but I suspect even throwing money at it may not help - private specialists don't know any more because they charge you than they did when they saw you in NHS clinic. What you WILL get is s bit more lateral thinking from Rod I suspect.
I'm just hoping they will at least consider the two issues are related at the moment it feels like both areas of medicine are in denial of the other. I'm a firm believer the whole body should be treated not just one area , especially when it is auto immune, as it can have so many knock on affects.
I hesitate to respond as I am a relative newbie at PMR - diagnosed November 2021 and struggling to get lower than 16 prednisone. As I’m female the plumbing is certainly different but I will relate how I have discovered a way to have a vastly reduce the number of bathroom stops. Frantic bathroom stops sometimes! I put on 30 lbs within a few months of taking prednisone. Now I’m taking those extra pounds off. Mainly by only eating once a day and eating just protein, healthy fat and green veggies (not peas). Low glycemic index carbohydrates. I drink a few full glasses of water too (which I hate doing but doing it anyway). I’ve lost 15 lbs and magically stopped peeing 30 times a day. Do I get hungry? It was quite difficult to start with but now I just don’t feel hungry. I did ask my Internist if was ok to do this - and he said it was OK (begrudgingly I think). I’m not diabetic but this process has also lowered my blood sugar AIC. I hope others can contribute something useful coz all those bathroom stopovers were a real nuisance for me.
thanks , that’s really interesting , I’ve been doing intermittent fasting on and off for a while , and I hear of so many people that get great results from it , I wanted to try an extended fast , but being on pred it’s not really practical , not a good idea to take pred on an empty stomach , been there not good. Reduces the carbs is without a doubt the way to cut wait the wait , I am very active as I teach martial arts 6 days a week that’s without my own training so fortunately never had issues with my weight even on my highest dose of pred I never put an ounce on . Thanks for the info 👍
yes I stopped using them 30 years ago , I really struggled to eliminate sugar from my tea but pleased to say it’s been a few years now since I used it. I have a little honey in coffee as I still have a sweet tooth .
I thought I had replied but doesn't seem to have gone through. If you have BPH then this should be dealt with by the urologist. If the problem is your prostate having grown & is stopping urine flow you need to have a day op called Rezum, not very invasive & very successful. Don't want to scare you but prostate cancer can be obscured by other problems & therefore missed & not diagnosed. You should have this checked out with an MRI & if necessary a biopsy. If caught early this can be dealt with. Because I had problems peeing, that's how my cancer was uncovered, aprox 11 yrs ago now. I'm one of the lucky ones.
thanks for the reply , I have my PSA checked regular , the urologist was happy with that side of things . It does concern me , but they think my issues are more bladder related , urology have discharged me back to my GP to monitor , they refer to it as watch and wait when your PSA is very low , the consultants exact words where , prostate cancer in people with very low PSA are like hens teeth .
I'm glad you have it covered , but according to the NHS 1 in 7 with normal PSA readings have prostate cancer. I'm under Active Surveillance, that's my prostate.
yes I’ve heard that , I think the only way I will get anymore treatment or investigation is to go private , as the urologist discharged me and can’t get another referral from GP . I guess I could request a private MRI from my GP , I think the reasoning behind it is a very high percentage of men will have cancerous cells in the prostate by the time they reach their 60’s , but with a low PSA the biggest majority will be low grade cancers which will probably never progress massively in a standard life span, so they avoid invasive surgery etc as the side effects can have a massive influence on your life . But if the PSA starts to rise they will investigate hence the watch and wait concept .
It sounds as if you have it covered. I guess mine is a low grade cancer, but the reason I mentioned it to you is a good mate was undiagnosed & found to have stage 4. He has lots of other underlying problematic health issues & very sadly it was just missed. As I said you have it covered. Back to PMR! All the best.
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