I am so sorry if this is too much info but has anyone had increased urgency and increased need to urinate.
I sometimes feels like I pass more than I drink and the sudden urgency is worrying.
I never had this before PMR / Pred.
I’ve also had cramping in my legs and feet recently - so was wondering if it could be unbalanced minerals related?
I do drink about 2 to 2 & a half litres of liquid a day. Mostly water.
Thanks.
Being on pred makes it easier to develop urinary tract infections, Both PMR and pred can contribute to irritable bladder syndrome. Pred can raise blood sugar levels - which the body gets rid of via the kidneys and sugar in urine increases the UTI problem. All reasons for urgency and frequency.
I had a UTI last week, just sort of "is it? isn't it?" until it was too late to get to the GP! I took d-mannose, 3x 1.5g a day, over the weekend and it helped a lot, Monday I rang the GP and got the antibiotics! Bliss!
Muscle cramps can also be due to pred - it makes you lose magnesium, potassium and calcium through the kidneys. The first thing to try is a magnesium supplement - all doctors here in mainland Europe ask if you have tried that before they consider anything else. If that doesn't help get your doctor to check your blood electrolyte levels to be sure they are OK. Bananas are good sources of potassium if you want to try that but don't take potassium supplements without checking with the GP.
Thank you.
Yes - I don’t think it’s an infection but very possibly irritable bladder.
I do take magnesium.
Can’t eat bananas due to the histamine issue.
I will look up other high potassium foods that I can tolerate.
The sugar may be an issue too.
Thanks again xx
Forgot the histamine issue - but in that case it is perfectly reasonable to ask the GP to keep an eye on electrolytes - every couple of months would be plenty. Always the lo-salt stuff - that is half potassium.
As a salt additive you mean? Should I look for lo salt that is half potassium?
Have you seen this before?
histaminintoleranz.ch/downl...
Yes, I basically follow that unless I am being bad. Am under a Functional Doctor. MD - but has shifted focus.
Thank you for the interest.
Hello, as per usual, lots of questions- Have you spoken to your doc at all? Sounds like you may need an electrolyte check and diabetes. Is your urgency because your bladder is full or that your bits feel irritated? Are you drinking 2 litres per day because you feel you ought or because you feel thirsty?
I haven’t spoken to him.
Im a bit of a shocker like that - don’t have great faith.
Also don’t want meds - and certainly would like to avoid antibiotics - they are most likely what landed me in the whole histamine intolerance hole.
Possibly drinking 2 litres thinking that it will keep my kidneys healthy. I don’t really drink teas or coffee - so it’s hot water with ginger, rooibos tea and plain water.
When I have a histamine reaction I get a dry mouth too.
I will ask for electrolytes and sugar next.
Thank you
What dose of Pred are you on?
Alternating 6 and 5 &1/2 at the moment. But I’ve had this for quite sometime now. Some days worse than others.
Out of interest, have you cut out salt at any point along the way?
No - should I? I use Himalayan and pure sea salt.
Some people need to cut it out on higher doses but as one goes lower, salt may need to be reintroduced. Anyway, you haven’t so it doesn’t matter. If you haven’t had any basic bloods done for a while, it may clear up the picture in one fell swoop and also a check of a urine sample would help.
I am on 1mg pred and I still get UTI's every six months or so. I need the seven day course to get rid of it. Good luck and take d-mannose.
Can you get d-mannose over the counter?
Yes even on Amazon or 2 for 1 at Holland & Barrett.
Thank you
Oh it comes in pill form or powder. Not awful to swallow.
that happened to me too- so much so I wore panty liners day and night (sorry for over sharing details) in case I couldn't get to the loo on time. I asked my rheumy: she said, 'drink less then'. So I did and my bladder went back to normal. I think I was over enthusiastic about taking on liquid. I have read somewhere it's just as bad to drink too much as it is to drink too little. So if other possible causes have been eliminated you could try to stick to the usually recommended 1.5L per day?
With the onset of pmr I became incontinent, the doctor and rhuemy weren't interested. It was more upsetting to me then not being able to walk. Gradually as I've reduced pred I've improved, I gave up alcohol entirely for sober October, after 2 weeks I found I did not have to wear incontinence pads during the day and mostly dry at night, so I have put it down to the alcohol irritating my bladder, I hate water and soft drinks but have a mugfull of water first thing, the rest of the day it's green tea and black tea pm. I'm currently on 5.5 pred. Hope this helps
Thank you yes - so could be an inflamed / irritated bladder.
Ooooh yes. I call it Honolulu bladder. First night in Honolulu, wandering down 'eat street' in the evening and IT struck. I sucked myself inside out or outside in. It was instant urge ! I made it. At the time I was going to hopeless Dr so went to Dr Google instead. This was 4 years ago. I cannot remember the info I got, but it was something to do with kidneys, and so to help yourself, you had to hold on as long as you could, everytime you wanted to go, to retrain your ?????. I tried this. I get a bout of this about once a year....... only once it has happened at home. It is most disturbing when it happens when out. I am looking forward to seeing your replies.
Very disturbing indeed.
Thanks for that input.
I had episodes of urgency and incontinence about 18mths into my pred journey that ended up being caused by changes to my anti hypertensive meds due to my usually stable B/P became unstable ? PMR I just couldnt maintain bladder control had to wear pads everytime I left home so demeaning. After finding the right combination of antihypertensives all went back to normal until 3mths ago when I had major flares of PMR , OA, and diviticular disease all at once. My pred was increased from 5mg back up to my starting dose of 15mg . Thats when my urinary urgency returned and I'm back to wearing pads again ugh! Hopefully as I taper back down my urgency reduces to a more manageable level. I do not have any other signs of infection I have never had a UTI.
We used to say we should have taken out shares in Tena! There's nothing demeaning about using them - a very large proportion of the population need to for one reason or another,
I also had the experience of an increased thirst and need (obviously connected) need to urinate more often. MD recommended tapering back on Preds which I am currently doing (down to 2 1/2 mg now) I am also going thru a whole host of other tests as PMR diagnosis could have been incorrect and other areas of concern have been identified (Prostate cancer with Bone metastases tests waiting results)
Not actually being able to see and discuss with my GP face to face has been the biggest issue as the Hospital consultants have been excellent.
It would appear from the comments of others that Preds can cause increase thirst and need to urinate more ofter but other factors needs to be considered such as the increased susceptibility to diabetes or other non connected heath issues.
Do you take a calcium + vitamin D supplement?
There have been comments in the past about them causing increased bladder sensitivity which isn't something I had ever heard about before. Personally, since I learned this I have noticed a marked deterioration in my bladder control and "increased need to tiddle" on the days I take them - I sometimes forget to take them and I'm definitely better on those days!! I don't think it's just the calcium tabs because I know of others who take them who don't have the problem but they aren't on steroids. I didn't always have this problem. It started about a year ago after being on pred for 2 years. My inclination is that the steroids affect the sphincter muscle at the neck of the bladder. Steroids cause muscle weakness so why should the sphincter muscle be any different? I have a fairly strong pelvic floor but now there is no way I can stop mid-stream.
Me too - I used to have such absolute control. Also very strong pelvic floor muscles.
Oh yes - and I do take Vit D supplements.
Hi Slosh. Yes I have the same and never had it before. I worry about my kidneys and bladder etc overworking. Keep meaning to mention it to consultant but so far have forgotten. I don't drink anything for about 3 hours before I go to bed in the hope that it will ease that early morning rush but it's still hit or miss whether I make it to the loo in time! I find it tends to improve throughout the day, though I have learnt through trial and error to obey that first message from my body telling me I need a pee. No longer can I "hold on" for any length of time. It's a pain, isn't it. I've forgotten my post name but perhaps it will come up automatically. It's reassuring to know I'm not the only one.
Hi Slosh, if you want to take extra Potassium naturally, try coconut water. My Potassium levels have returned to normal just by drinking a couple of glasses a day. I have not needed to take supplements and I enjoy the taste !
Thanks - that’s great advice. And yum
From time to time, it's all very mysterious, sometimes I get flares which in the past have been treated a UTIs or thrush, but I don't think they were. I'm coming to the conclusion it is related to the histamine problems. People who have Mast Cell Activation Syndrome (MCAS), which is overactive mast cells, which is one of the possible causes of histamine intolerance, often have bladder problems and interstitial cystitis. They are places where mast cells are concentrated, along with the airways, stomach and guts and skin. I think the burning mouth I sometimes get, which again has always been treated as thrush, is also a mast cell thing. I have no way of knowing, as I can't find a doctor who knows anything about histamine and mast cells, it's just my hunch.
It’s so frustrating not having anyone that really knows this stuff.
I also have the burning mouth.
What mg of Pred are you on?
Something that helps the burning mouth pain is rinsing with salt water and also I'm told, taking Vit c. It is so frustrating not being able to find anyone who knows all about this. There is one privae specialist called Alexandra Croom, in Leicester but she is not taking on any new patients atm as she is in such high demand. But at the end of the day, the top treatment for unstable mast cells is Pred. There are other mast cell stabilisers, such as Vit C and quercetin, both of which I react to. I'm on steroid injections, which work a bit different to daily Pred in that I get a big dose which then gradually tails off. About a week after I have had an injection I can eat and drink anything I want even if high histamine, like wine. Now whether that is because the steroids dampen down the PMR inflammation or dampen down mast cells I don't know, I just know they must do something.
I used to very occasionally have a really bizarre and unpleasant reaction to something in food/red wine but it was very random. The Newcastle immunologist said it was a typical food allergy reaction - gut effects atart to happen about 2.30-3am - but there was no way in hell we could have identifed the source. She suggested taking an antihistamine if I wanted to drink something I suspected might be a problem. That seemed to work judging by the reduction in episodes. However, it pretty much disappeared once I went on pred. I also discovered that if I did wake with the symptoms of it starting, taking an immediate dose of loratidine aborted the episode. And one herald was apparently becoming very very drunk very quickly on a very small amount of the culprit.
The immune response is very strange ...
I do wonder if you have possible mast cell things going on from things you have mentioned in the past. Mast cell degranulation can cause heart arhythmia, gastric symptoms, general inflammation etc etc. Several of us PMRers also have histamine problems, there may well be links
The more I read the more I believe that I do.
With with MCAS there is also a link to Eyhlers Danlos Syndrome - which involves connective tissue / hyper mobility issues.
People with Eds often have MCAS but there are other causes too, including inflammation. And we have that unfortunately. Do you get 'blocked ears' like when you're flying when you get the burning mouth pain? I do
No. Do get that blocked ears feeling - but mildly when reacting though
Have you tried this lot?
leedsth.nhs.uk/a-z-of-servi...
I've had phone consultations with the head of the dept mentioned there who famously doesn't believe in MCAS (he's mentioned often in Facebook groups) , and someone else in his team who kind of acknowledged it might exist but as there is not much research done there is not much they can do. I have now been prescribed a mast cell stabliser called Montekulast, but steroids work better and I'm already on them. My problems tend to surface when I am on low or no steroids and go away on higher doses. Dr M says I have been tested for all sorts of things like connective tissue diseases and myositis and the bloods were all negative. But as we know with PMR, bloods aren't always conclusive. It seems there is far more help available if you live in Germany or Switzerland where MCAS is acknowledged and treated. Of course I might not have MCAS, it might be 'just' inflammation driving the HIT. It's all so complicated for me to uderstand, not being scientific. I keep seeing cytokines and IL-6 mentioned though, which is also something to do with PMR isn't it?
Like a lot of other things ... Mainland Europe is way ahead of the UK in not quite mainstream medicine.
IL-6 is a cytokine - the one that is mainly the cause of PMR and partly the cause of GCA. And tocilizumab works against it.
Increased Prednisolone
Increased pred to 25mg
Flare-up not under control and just don't know what to do
Flare, increased prednisolone: progress to date
Leflunomide and alcohol
