In the three days of high heat temperatures in London last month I became ill with continual diarrhea. I wasn't eating much, I did take electrolytes, but it didn't dawn on me that my doses of preds (at the tail end of a taper from 8.5 to 8) were probably being washed away with digestive contents. So I'm in a flare with aching muscles, sore joints, all over itching with eczema rashes, queasiness and still poor digestion with loose bowels. I went up to 9mg two nights ago, then yesterday wasn't improved, nevertheless took 8mg last night. Today I feel awful. The thought of all the work I've done to get down from 10 mg to 8mg since last August looks like it was for nothing. I feel very tearful and depressed and with a kind of generalised anger. Would an injection of 40ml depo-medrone help through this period? I don't know what to do at this moment. I'm sorry to post this.
Hot weather and Diarrhea TAPERING dilemna - PMRGCAuk
Hot weather and Diarrhea TAPERING dilemna
Don’t be sorry Bennijax, it’s a real dilemma and very dispiriting.
I can’t answer re the injection ( I don’t have any experience of this). However, I can say that I too had a full ten days of diarrhoea recently. In desperation I contacted my GP. She took bloods (all clear) and gave me anti sickness pills (cyclizine) and approved my use of Imodium.
I’d say it’s definitely worth contacting GP or even 111 as stomach upsets like this can really challenge absorption of meds and that’s a risk with pred.
I’d say get some advice. And I hope you feel better soon xx
Thank you.
I assume the gut problems are long gone?
Try adding 5mg to the dose - i.e. 14mg at least - and see if that makes an impression. You can stick there for a week, even up to 10-14 days and still be able to drop back to 9mg if it has worked well - AND this is just the result of effectively missing a few days pred rather than a real flare of disease activity. There is only one way to find out.
Not only did you miss the pred for managing the PMR but also there is the adrenal function side to think of. You would have needed more at the time because of being so unwell but got a lot less probably. No point raging against it - these things happen to the best regulated people.
I don't think the injection would help much now - it is still a considerable increase in pred dose, just once it is in it can't be adjusted. It would have helped at the time - though the same applies.
As all the replies have advised, you have to address the upset tummy too to return the status quo but you may have to take advice with regard to any potential adrenal complications.
When I experienced a raging urticaria rash, it initially didn't respond to the strong prescription antihistamines, so I was told I'd have to increase my steroids back up to 30mgs! I'd just spent almost a year slow tapering a few mgs down to 6mgs, so I was really upset.
Pro told me what she's told you, and she was right. I tapered down within a 12dy period back to 6mg with no significant consequences.
Try not to feel too despondent. Eat plain, simple food for a while and drink LOTS of water. (Warm water is very good for soothing the gut) Cold stewed apple is also good for helping to settle an upset stomach. The pectin in apples calms gut action down.
Unfortunately you have to accept what's happened.....that's a fact, but you will get there with patience and determination. We've all experienced a scenario like this, and it's soul destroying after so much effort and time has been afforded to tapering safely and effectively.
Pick yourself up, dust yourself down and decide to not let this current experience & disappointment deter you from continuing to move forward and progress.
If you haven't had to work hard for something, it probably wasn't worth having anyway!
I know you'll be ok once you've resolved this issue. Just trust in the process. ❤️
We all feel despondent when we have to raise our dose, I know I did when I got to 4mg and flared. Now on 7mg and tapering slowly back down. It is part of PMR that you need what your body needs!I hope you feel better soon.
I don’t know what to do, things are going in the wrong direction. A year ago I had a flare at 7mg. Went to 12 on the advice given here. I stayed there I think a week then got down to ten quickly but since then it has been so slow. A year later, now, at 8, I’d have to go up to 13 which is not good for me, steroids are having bad effects. What should I do! And how quickly can I get down to 8 again. I know this is how it is and going to be maybe for a very long time. I feel lost.
Then go to 12 for a few days - if that works you do thesame again after a week or so.
Things change - the illness itself varies. It can even become obvious it was something other than PMR and the treatment needs to be changed. Discuss it with the doctor.
I will do that, 12mg for a few days, then go down, repeat following week if needed. But when going down from 12 last year I could go to 11 and then 10 quite quickly, I think it might have been just over a week, then I got got stuck on 10 for awhile and it was hard to go to 9.5. I think the problem now is what is going on in the gut - it just isn't settling down, diarrhea again this morning. It's unusual for me to have this. So Monday morning I'll make an appointment to see the GP. Thank you.
Dear PMRPro, Although most people will be fine in very hot weather if it doesn’t last too long, for some of us sensitive to changes to our digestion this might be of interest- Found this evening from an article July 2022 in Stylist magazine:Why hot weather can affect digestion and how to copePOSTED BY ALEX SIMS FOR WELLBEING
“Experts now believe hot temperatures can affect the diversity of our gut bacteria. Here’s why it matters and how you can keep your digestive system in optimum health when the mercury rises.
If you’ve ever suffered from bloating, stomach cramps or needed to rush to the loo, you’ll know just how much a tiny change in what we eat or how a small adjustment to our usual routines can knock our digestive health off course. Now experts believe that hot temperatures can also affect how our gut is performing.
Often called the body’s ‘second brain’, it’s becoming more and more understood just how much our gut impacts our health, affecting everything from our moods and emotions to our immunity.
It’s all down to the gut’s microbiome (GM). This ecosystem of trillions of tiny organisms and bacteria living in our digestive system is unique to each of us. Created in the first 1,000 days of life, it quickly develops into a sophisticated neural network, which transmits messages from our brain to this human gut ecosystem – a communication system known as the gut-brain-axis.
If we have a healthy-balanced and diverse microbiome this communication system works well, keeping lots of processes in our body running efficiently. If there’s a disruption in our microbiome, the gut-brain-axis won’t be able to work optimally.
Although research into this area is extremely new, it’s now thought heat can affect our gut microbiome and how efficiently our gut-brain-axis is working.
Recent studies published in the National Library of Medicine and Animal Nutrition, have found that in animals hot temperatures affected the diversity and stability of bacteria in the gut and caused inflammation and changes to the gut lining.
Experts are beginning to believe that heat can also have similar effects on humans. “Changes in body temperature have been shown to influence gut microbiome diversity and stability,” explains Pippa Campbell, a nutritionist and nutrigenomics practitioner who specialises in female health.
“Heat can modulate the growth of pathogens in the gut, ie the bad bacteria. Too much heat can mean more growth of bad bacteria, which leads to common symptoms such as bloating, wind and diarrhoea, as well as worsening symptoms of IBS.
“When we get too hot, our body tries to cool us down, so it sends blood to the surface of the skin. This redirection of blood means the gut ends up with less blood, leading to an imbalance in gut bacteria.”
Being in the heat for an extended period of time can also have a negative effect on gut health adds Campbell: “Research has found that hot temperatures may increase the permeability of the gut lining which can allow bacteria and toxins to pass into the blood more easily. A healthy gut lining helps to keep the bad guys out.”
Poor you Bennijax! You’ve had good advice about your immediate problem. I just wondered if you had changed your additional meds. lately? So many of them have diahorrea in the side effects. This has often been the culprit when I’ve had the problem. Also, have you given a stool sample to identify the potential type of bacteria? A month is a long time.As others have said to you, don’t despair, these rotten things are part of managing a chronic disease and this needn’t interfere with your good progress too much. Extra Pred causes generalised angry feelings, most definitely and tears and low mood. 🙃 cheer up! Xx
Stool test showed no pathogens present. My guess is the Sunday before the heatwave Monday I ate delicious fresh cherries and also some raspberries from the farmers market. They were such a treat. I only usually eat bananas and semi ripe papaya served with lime juice when possible, no other fruit. There may have been too much, too high sugar content in the raw fruit and that, with the heat, caused bacteria to grow faster than I considered a possible risk. Ditto with such delicious tomatoes now available. So back to the very restricted diet in hopes things will settle down. I’ve had a long run of normal balanced digestion, I thought I could tolerate greater consumption of summer fruit and veg. I took 12 mg last night and I feel more like ‘me’ today. I’ll do this for another few days and make notes. Thank you all.
This sounds feasible. What a shame, it also sounds lovely.My digestion is very temperamental too, a hint of chilli or leaves and I’m off. Like Thelmarina it is diverticula disease, diagnosed by colonoscopy and not as bad as the symptoms suggest.
I’ve had these bouts and was referred to a consultant, got a proper test and was discovered to have diverticular disease, gut like a leaky tyre! When the symptoms start I go to the white diet, bananas, white rice and white bread. Baked white fish, a little chicken. I ease myself along until the symptoms retreat and I’m back to normal. Lots of water as you know. Ginger tea can help too. Best of luck ❤️
Thanks for this, I will ask my GP for a consultation about this, meanwhile yesterday I was on ‘white’ without knowing it is called that - batsmati rice with plain yogurt, and banana. That seems to be tolerated best.
How do you manage diverticula disease?
I had the most terrible diarrhoea and even had a colonoscopy which was clear (thank goodness), but after reading something here I discovered that it was being caused by Lansoprazole and as soon as I stopped it I had no more problems.
Please contact GP as it could be C-diff causing your diarrhea which will also make you feel sick.
Try a strict BRAT diet… bananas, rice, toast, applesauce to see if you can control your gut. No dairy, no veggies, low fat meat is okay. If it doesn’t, you may need a colonoscopy to see if something else is going on. I ended up having celiac and colitis causing mine. It may just be a virus or something but if it doesn’t resolve, it needs to get checked out.
Sounds like you are disappointed and frustrated with what has transpired…rightly so! Your physical response to the heat sounds downright awful.
Aside from the physical return of symptoms to contend with, there is also the toll tapering takes on us from a psychological standpoint. We “work” so hard to taper (as suggested, sometimes insisted upon) over a period of months and years, only to have it require an increase in dose.
This seems to be the nature of this beast and tapering/flares are often posted about. Some are fortunate to taper smoothly and effectively, others get help from medications, and some seem “stuck” at a specific dose. It’s hard not to get wrapped in the numbers game. Even on the positive downward taper, there can be concern about flaring.
As I have flared 5 times in my 4+ PMR I have come to try to accept “what is” as I have no control over disease activity. This doesn’t mean I haven’t cried and been angry on the process.
What I can control is managing the flare in a way that will get me back close to the dose I was at prior. A pred burst worked for me (suggested by forum members). I try to remind myself that I can get back to a lower dose once more….eventually.
I try not to blame myself or my body. I’ve don’t my best to carefully taper, and in your case your stomach woes contributed to your outcome….certainly not you’re doing as there is no control over the weather. That being said, it still sucks to go experience the return of painful symptoms and feeling you have “lost” months of effort.
Hope things improve in on all levels. Try and stay cool (some great ideas were shared in another post). Sending you healing vibes. Keep us updated.
Hello Bennijax, I hope you will feel better soon. I, too had an awful period of constant diarrhea over the last few months and had four weeks of antibiotics. I do have diverticular disease but it wouldn't usually present as diarrhea. However after a colonoscopy and CT scan, plus numerous stool samples, it was confirmed that it was indeed a flare up of diverticular disease. I was told to increase from 8mg to 12mg of Pred during the period of time that I had the runs. The consultant told me that the diverticulae had worsened over the last few years (ie. since I've been on pred) and has put me on a low FODMAP diet (if you Google it, it will give you an idea of what it involves but it's basically no gluten, no lactose and only certain fruit and veg but particularly no onions/garlic/onion salt etc). I have had relief from the runs since starting the diet and am determined to stick to it as I don't want to have to have bowel surgery (fingers crossed). I hope you don't have diverticular disease but just wanted to say that the low FODMAP diet has definitely sorted out my diarrhea problem and I'm successfully back to 8mg of Pred and hoping to continue tapering. x
Thank you very much. I will request a dr appointment tomorrow and hope I won’t have to wait weeks. I will also gather comments from this post to distill, for when I ask questions of the GP. I took 12mg last night and the good effects had worn off about two hours ago. So I’m feeling poorly and itching all over again. Another 12 tonight but will make it up from the coated pills so it will kick in closer to the magic hour when inflammation sheds, according to what PMRPro tells us is what happens. I guess it’s experimentation and trial and error. But although I do note the dose I take each night, I forget to write down what I experience from it. I’m sorry to hear you have ongoing digestive issues, yes, I developed gluten sensitivity before I was diagnosed with PMR nearly three years ago. I avoid gluten, wheat, most grains, and so no cakes, breads, biscuits, pies, pasta, croissants, all yummy things. No cows dairy, but plain sheeps yoghurt has always been good. In this diet my digestion has been really good and regular. But I made a mistake and ate sweet summer fruits - gorgeous cherries, raspberries, strawberries, blueberries. So nice. But which I reckon contained too much sugar. It has to be plain simple, low carb, very low sugar food now. I crave chocolate and toast and ice cream some days!
Poor you. I hope you are feeling better today.When I had a bout of GI, the GP said they would want to know about it if I couldn't keep the pred down. Presumably because the lack of pred has the same effect as a rapid reduction on the adrenal glands. I'm glad you're making an appointment tomorrow, but another time I think it would be worth ringing 111.
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