I currently take 8 mgs of gastric coated Prednisalone and fortnightly subcutaneous injections of Tocilizumab. I became concerned that I was having absorption issues with the coated Pred and with my Rheumatologist’s agreement I decided to try 8 mgs of uncoated Pred for a week. At first I felt more like my old self and travelled to London by train as planned. I ate rubbish while travelling ie sandwich, sausage roll and half a pizza for convenience. My Rheumatologist had warned me to stop the experiment if I got stomach pain. I did this because I felt as if my Adrenals Wes struggling. I began to get burning pain in my lower stomach that gradually go worse. It hurt me to walk and I felt that both bowel and bladder were blocked. At the advice of a pharmacist I was given laxatives and Buscopan for stomach cramps. When these drugs got to work some of the extreme sharpness went off. Of course I reverted back to my coated tablets. The pain cost me 4 nights sleep and during the says away I could only tolerate soup and jelly. Back home on my normal Pred I find that I experience pain after eating soft food, every time. The laxatives have worked so it isn’t a blockage. I am pretty thirsty and don’t seem to pee enough. Can this all be due to a brief experiment driven by extreme fatigue. I am aware that Tocilizumab can lead to tears in the stomach lining. Not sure where to go from here. I have used up my doctor quota on other issues this week. During this episode my stomach was tight like a drum and tender when pressed. I am not on Omeprazol but have always used yoghurt to line my stomach. This is not the dramatic reaction I expected. I also wonder about wheat intolerance because of the food choices whilst on the move. Do any of this resonate with anyone. There has been a sensitivity in the run up to this episode, more hot than painful. I am unable to go back and make corrections for some reason. Apologies for a long and fairly mundane post. Days away and Does were struggling - apologies, typos. Can’t even go back to put a question mark in for some reason. Still in pain today, wondering about ovaries even, or a UTI but the big change was Pred. Had my tocilizumab jab the day after I returned home. Thanks for reading!
Stomach problems due to Prednisalone.: I currently... - PMRGCAuk
Stomach problems due to Prednisalone.
Oh SheffieldJane I’m sorry you’re having yet another tough time 😟
Your symptoms seem quite complex to me and I wonder whether you have developed a pretty high tolerance level for pain and discomfort. Honestly it does seem to me that you need a thorough assessment from a medic, whether that be your GP or an A & E doc (not again, I can hear you thinking!).
As to wheat intolerance, one of my children has coeliac disease and it can certainly cause acute pain, but I’m not sure that explains everything in this case.
Really I just want to send you a hug and say please see a doctor - this is not something you should deal with without medical advice.
Take care 😊
Nextoneplease xx
You must see a doctor. Not a virtual visit, but in person.
Probably it's nothing worse than a reaction to "eating rubbish" as you put it, and the change in schedule, etc. I also wouldn't rule out the wheat connection too quickly, or even an excerbation of the discomfort and pain as a side effect of the meds you took to alleviate original problem. But I think the fact that things are not settling quickly is why you should consult a doctor. There are too many variables for us to make a guess. Hugs.
Sorry to hear of your digestive woes SheffieldJane. Sounds like it could be a number of things…perhaps triggered by uncoated pred and/or the type of food consumed on your travels.
I take both uncoated pred, and pred stuffed in enteric capsules every day in a split dose, and just make sure I eat with the uncoated pred dose.
No problems until in August I had progressively worse lower left abdominal pain, bloating, chills and nausea. So bad I couldn’t even get myself to emergency dept but went the following day. Diagnosis: diverticulitis confirmed with follow up CT scan and prescribed antibiotics for the infection. Still waiting for follow up colonoscopy which has been cancelled twice now (sigh).
I found the attached chart that helped, hopefully it will be of some assistance for you.
Up until a week ago I had continued nausea, cramping, diarrhea, which I chocked up to ongoing fallout from the diverticulitis. Despite eating a “bowel rest” diet of broth, jello, yoghurt, I was still experiencing symptoms. It got to the point that I was afraid to eat due to suffering afterwards.
Then I read a post by HeronNS about types of magnesium. Sure enough I was taking the kind (oxide), that is difficult to absorb, and used for constipation, and my dose was too high (500mg, women only need 320mg).
I stopped taking the supplement immediately and bingo…I felt better immediately. It’s been a week now and I feel so much better and back to normal digestive/bowel movement wise!! Another mystery solved.
I’m hoping you too get some insight, perhaps provided if you get a diagnostic test like the contrast CTscan I had. Others who are on Actemra will be along to share, in case there is a connection there. Dehydration may also be a clue to your lower stomach pain.
Regardless I do hope you get to see a doctor in person to investigate further. How frustrating for you to inherit yet another medical issue from a simple experiment (which I’ll bet you assumed would be harmless). Hard not to get discouraged. Hope the pain goes away sooner than later.
Thank you for all your thoughtful replies! My GP is referring me to a cardiologist due to continued breathlessness to discount Angina. He was coughing every few seconds ( on the phone) so I didn’t mention this. He was the one who sent me to A&E with the occipital headache. I always look for a connection with symptoms. Stumped though, just like the bad old days before PMR diagnosis.
Sorry to hear your recent issues….and as others have said, you really do need to get it checked. It may well have been exacerbated by the change in Pred and different eating habits, but if, as you say, things weren’t quite right before then further investigation is required.
Good luck Jane, hope you get this sorted. Sounds very painful and worrying for you. Hope you're not waiting too long for appointment. Its exhausting sometimes just trying to work out these new/extra symptoms! X
I hope you get it sorted out soon, sounds quite uncomfortable.
I really think it's a GP thing.
I have had many stomach problems these last few years, 2 years ago a lovely doctor did so many tests on me (blood) it came back...this patient is not celiac but 1 point off....she would do better without gluten. I had an Endoscopy which showed sludge!....this worked for me for a while until about 6 months ago it got worse....the consultant from that department rang and said it was lactose intolerance, and that they are linked....it took a while to settle, but mostly gone....it really surprised me...the pain was dreadful.....It has surprised me just how many lovely lactose free things are out there!
Good luck...all worth a try if you get nowhere...
You'd love it here - lots of lactose intolerance up here in the mountains and the shelves groan with lactose-free soft cheeses!
Well I have to say there are so many vegans now that no-one bats an eyelid when I ask for dairy free, they think that`s what I am...all shops have freefrom, so it is easier than I thought it would be, and I have settled on a particular milk that I have. I do still have small amount of hard cheese also have thick set yogurt on breakfast, I still need the calcium!...but they don`t seem to affect me....if I have a small amount...I`m sure I would love it there anyway!
I really wish I could offer advise its so unusual for you to post I can only say if I eat crap for a day it plays me up the next morning I feel sick and bloated with stomach pain .
This goes off during the day but its nothing like you re suffering .
Your GP needs to be aware so phone them
Even if you have spoken to them this week if you are unwell you need to be advised by them .
Good luck
Hi Jane sorry to hear you are feeling unwell. The burning pain sounds like what I used to get before I used coated pred. Even now I only take 2 uncoated pred but if I let myself get too hungry I get the same feeling. I take lanzoperazole which helped when I was on high dose pred for my ulcerative colitis, before I knew about the enteric coated. I hope your GP can help you. Xx
What about a drug interaction to explain the ongoing effects? (As an example - I took Fluconazole for thrush and my digestion went downhill shortly afterwards. The medication given by your pharmacist might have the capacity to interact with pred too.)
Look up Buscopan on the NHS website. It sounds like it could have dodgy effects if you were already vulnerable.
It may be me Seacat30 but I can’t find Prednisalone contraindicated with Buscopan. Ah you attached it. Taking it for the first time was in response to the pain, but I’ll bear it in mind thanks.
It doesn't specifically say so but it sounds like it could have strong effects not all positive.
Thanks, you are all right, I need a doctors’ referral. You just feel that you are being a nuisance these days, especially when there are issues so close to each other. There is nothing alarming like blood but it is still tender, returning to an inflamed burning feeling. On the plus side, I am cured of lovely bread, pastry and pizza bases and uncoated Pred.
What do you eat normally at home? Normal carb or low carb?
A really healthy low carb diet, no bread or baked goods, plenty of oily fish. I do have pasta and rice occasionally. I avoid highly spiced food these days. Probably too much cheese. Small portions. Tocilizumab has caused more weight gain than Pred depressingly.
I'm wondering if it was carb overload that caused the stomach issues. I used to get exactly the same. And if it eased after meds it may well have been a shock to your system consuming that much when you wouldn't normally.Horrible though, those pains can be really hideous.
You might need to get your pee checked out too.
Like the others - an awful lot of that could well have been carb overload - and all processed, oodles of salt that I bet you aren't used to. How long in London? Eating out as well???? You are thirsty and peeing to get rid of that - takes me several days after eating out 2 or 3 days in a row.
I think you are right. It seems to be easing. We don’t add salt to anything. In 5 years I have become the precious princess we used to joke about. Strange beds, strange pains as well.
Trudy is still being a PP ...
I wondered about a coincidental UTI as well. That adventure with carbs was real aversion therapy. It might as well have been wood shavings. Reminiscent of pregnancy when the baby sat on the bowel and bladder.
My sympathies for your tummy problems. - not nice. If they don’t settle once your ‘detoxed’ of your snack food it has to be something else. Make sure your GP listens. I had the camera down to resolve my similar problems recently. 🌺
Did they find anything? Forgive me if you have told me already. I rather dread an endoscopy.
They found Gastritis telling me it fell short of being an ulcer - BUT remember I took Omeprazole for six years without an inkling of problems. They confirmed Omeprazole was the cause of my stomach problems so you can rule that out. In your case it depends if it settles down on it’s own. If not I would think they’d look at the recent changes in meds. It seems too big a coincidence with your change of meds and food. If not those they’ll then decide what to do next.
I know the investigations aren’t nice and me with my coarse dry throat you can imagine I was worried about coughing. I chose not to have the mild sedative in the end and it was over quite quickly with instant results.
Hope you get on okay, let us know. 🌺
Thank you that’s comforting. I hope you are not still troubled with it.
As long as I stick to meds and diet. Still can’t believe it! Take care. 🌺
Which seems a rock and a hard place when they tell us omeprazole is a "stomach protector"! Bit like the alendronic acid for bones - which can cause atypical femoral fractures!
I know and said that at the scan - that’s when she said it’s not quite an ulcer! So now I’m on Lansoprazole and Famotidine and can’t eat full meals any more nor anything spicy etc. I graze all day!
Endoscopy is not that bad...if you have your throat sprayed, they are very quick!
Dear Jane - how really horrid for you - I had some gut issues recently following antibiotics for teeth stuff and have only just got my digestion back to normal (well 'relatively') I can certainly empathise as when your gut doesn't function well really 'nothing' feels 'right'. I am suspicious however that one or two carby meals could have done all that - and am also thinking if your gut is cramping badly that can certainly impact the bladder as well - so it may not be multiple issues. Everyone says see a doctor in person - that's fine if they are healthy themselves and prepared to 'touch' you in an exam - some only look for a list of tests which may or may not help. But don't despair these things can get better over time and your regular diet sounds pretty good to me. I DO Hope you get what you NEED though Jane - and SOON - and some well deserved respite from 'one damn thing after another' XXX
Thanks Rimmy that is helpful. I didn’t know that the bladder joined in. It’s like everything was inflamed and swollen. Then of course Pred does irritate all the mucus membranes, in my case anyway.It was the sweetest doctor in our practice, I could have cried, he was coughing every few seconds. All his said when I commiserated was “ children”!
Twice GP’s have said to me “ what do you want me to do”? Blessed if I know.
I've had that comment about 'what to do...' myself - all I can say is some of them are utterly hopeless - and not even curious enough to ATTEMPT to get to the bottom of things ... plus it's all part of making us feel diminished and full of apparently 'unnecessary complaints' (like women are PRONE to as we know) - it makes me VERY annoyed XX
My husband gets a better response on the phone than me. I guess, statistically his head is hanging off.
Oh, I can think of some answers!!......
Just to say I’m thinking of you. It sounds painful and very frustrating so I hope you get to the bottom of it……literally! Take care.
You’ve had a lot of suggestions and advice from everyone. I don’t know whether I can add anything useful but I’ve had somewhat similar symptoms starting from general bloating and discomfort about a year ago and culminating in quite severe diarrhoea and pain in May/June. I also have ongoing cystitis-type symptoms but tests have never shown any infection, antibiotics have never improved things, and I have recently been told by a consultant that they are actually most likely related to my bowel problems. He said it wouldn’t be the Pred that caused it. I had suspected it was,
Like you, I changed from enteric-coated pred back to uncoated but this caused a severe worsening of heartburn and reflux problems. I had been worried that because the enteric coated were absorbed in the intestines it had a role to play in my bloating, pain and diarrhoea. In the end I followed advice I got here and changed from Lansoprazole to Famotidine. At first I thought I’d found the answer. I definitely have some improvement on the daily diarrhoea and bad abdominal pain every time I ate. I now only have this every now and again interspersed with constipation. I recently managed to see a consultant and he said the Lansoprazole may have caused an ongoing problem, a type of colitis. You don’t take Lansoprazole so this does not apply in your case.
Another idea is that as well as the temporary change in your diet, could the travelling and ensuing stress have exacerbated your problem? Mine was at its worst when i decided to risk a plane flight from Ireland to see my new baby granddaughter in England. I was very nervous going to the airport, on the plane etc and then staying in a hotel. A big leap for me after mostly shielding for a long time!
I am now waiting for an appointment for a colonoscopy and endoscopy. As others have said, think it would be worth you too having some investigation to find out what the problem is. Sorry this is so longwinded. Hope some of it helps.
Thank you for sharing this, it sounds very, very similar except you didn’t compound things by eating heavy carbs as well.Congratulations on the birth of your little baby granddaughter! 👶🧸🎀 The happiest days are when babies come! ( Mammy from Gone with the Wind).
Thanks Jane. Yes it was worth it to see her, she’s a sweetheart 🥰
Hi Jane, sorry you're not well, I am on Tocil. and take Omeprazole. I switched from Lansoprazole cause I kept getting nausea. I also have tapered down to 0.5mgs of Pred. I have also gained weight, but don't know if its the Tocil. or Hydrocortisone which I also take. If I have a small amount of Junk, I too suffer for it but with nothing like the pain you describe. I get awful sinus and runny nose etc. all the time. I spoke with the Endo. Consultant yesterday, and he says when I get off the Pred. (not if) he'll see about stopping the Hydro. as my Adrenals might be up to scratch then. There is nothing easy about this is there, best wishes.
No, nothing easy. Has your doctor explained the hydrocortisone plus Prednisalone plus Tocilizumab? Is he trying something new and clever to do with your Adrenal system?I have the chronic sinus symptoms too, plus a nasal infection and some difficulty with swallowing properly and a tendency to choke. I could take up residence in a GP surgery but I haven’t really got one, in the old sense of the word.
I had a my first synacthen test quite a while ago and I was on a low dose of Pred then, the result wasn't what it should be so I was put on Hydro. I was taking Leflunomide then, it worked somewhat, but I was asked to start Tocil. Jan. 2020. which I did. my last synacthen test was last year, and the results were better. As I said, I tried to finish Pred. in June this year, but I wasn't happy and the Rheum. said she would happily let me have 2mgs. a day to prevent a flare but I should decrease slower, which I have. I am now on 0.5mgs. a day and feel better than in June. I need another syn. test when I come off Pred. and I will really feel happier when I finish Hydro. as it scares me, particularly the stomach part where you dread having a tummy bug in case of an adrenal crisis. I really can't use a normal needle! Hope you feel better soon. Take care.
Thank you for sharing this with us. Is the aim for your own adrenal system to begin working independently eventually? Or are you dependent on hydrocortisone hence your fear of a tummy bug interrupting your cortisol supply? Sorry to be inquisitive but this is the first time I have heard of this pattern of treatment. It throws up questions but I am only another patient.Thank you for your good wishes.
Maybe I've been a bit vague, sorry, my adrenal glands are almost working normally, I have a lot of side effects of tablets which cause stomach problems. I was given an emergency adrenal crisis pack when I went on the drug as I understand everyone is (in case of vomiting and diarrhoea when it doesn't stay in your system long enough) I have never taken Hydro. before and only started cause my adrenals needed a boost. Leflunomide has a diarrhoea side effect, so when I was on it, I was in constant dread of using the pack, or unable to use a syringe, having to contact a dr. or call an ambulance.
Ah! That makes sense. I got an emergency pack too, out of the blue with no warning, syringes and ampules of hydrocortisone, from the Endocrinologist. I looked at it once I think. Fortunately my husband has become an adept injector, he does my Tocilizumab injections. So he has his instructions if I flop over. My last synacthen test showed the potential for my adrenal glands to produce their own cortisol, so it never became a source of anxiety. It probably should because I developed GCA and LVV and had to go on higher dose Pred again. I am currently on 8 mgs and will see the Endocrinologist when I reach 5 mgs. I hope that they can revive again. I am currently experiencing stomach pain etc. It seems to go with the territory for some of us.
I have exactly the same, GCA &LVV, it was a couple of years or so before I was diagnosed and I was taking a fairly high dose of Pred.for a while after being given 40mgs. at the start (2015) I was sent to another Hospital and they diagnosed it finally. I t seems like years ago now, much more than six!
Jane, I'm so sorry to hear what is going on. When I went to the ED on September 27, it was for the same symptoms; burning, nausea, pain, soreness, upper right ribs, constipation, and sore belly affected my breathing. They did EKG right away, ultrasound, and CT scan and found esophagitis (more GERD), hiatal hernia (small), and diverticulosis. The heart was ok even though numbers in bloodwork were elevated. So there you have it. I cannot take NSAIDs and have taken Omeprazole for two years+. They will not do an endoscopy until I am down to at least 20 mg of pred.
Because of a discovered loss in my visual field in my right eye on 9/1, on 9/8, I began taking 40mg of prednisone per day. In following up with my internist and rheumatologist, they felt strongly that the steroid dosage increase was the culprit. I was taken off Omeprazole, put on Protonix 40 mg, 2 x per day, and Carafate 1 gram, 3X per day. The good news is it has quieted considerably, and I can see improvement daily. Also, I do not eat any large meals, just three or four small. I keep gaining weight, thank you prednisone, and am never really hungry. I also cut back on caffeine and drink more water. Yesterday I restarted Actemra in hopes of cutting the steroids.
After three weekly injections, the rheumy wants me to cut by 10mg. Yes, I'm nervous about it.
I am at a tipping point; the doctors say. They had a conference call. I have a 50-year history of bleeding ulcers, hospital stays with diverticulitis, and stomach bleeds requiring transfusions. My kidneys and a few other organs are begging for mercy. I know my ESR and CRP were in the normal range yesterday, so we will see how well the plan goes. I'm to see the ophthalmologist after two weeks of reduced pred and the rheumy 3-4 days after him. So fingers crossed.
I'm thankful I am in no pain and truly wish the same for you. I pray it is just the 'raw' pred wreaking havoc with your stomach and bowels and that it quiets down....I also put a sign up in the house 'STRESS-FREE ZONE AT ALL COSTS' or it will cost !!!! The multitude of appointments, like yourself, have convinced me of exactly how much control I have over this 'severe GCA'.....none~!
Let's have that cuppa!! xo💖
Yes let’s ☕️. We’d have to take strict turns to pour out our woes. I don’t know how you keep track of all your health issues and are able to relate them in such a coherent way. I am getting a bit lost. How are diverticulitis and stomach bleeds diagnosed? I think I’ve got some collateral damage in there. I think it was raw Pred, that’s what it felt like 32 mgs over 3 days a spark of extra energy then boom, my stomach and everything near it blew up. 💖
🤣😅 I couldn't keep track for years and have just kept a running history in my computer and would print that and my current med list every time I went to a doctor. It may seem like a lot but I've been around for a while too. I started when I was four and I'm 81~!! Plus, one thing came along and it got 'settled' and I had time before something else came along. I felt like my immediate health was good and that I just had a complex history. None of that mattered so much or changed so much...until Mister Autoimmune came along!
I have a great tolerance for pain. With the diverticulitis my lower left stomach hurt and only felt better when I sort of cradled it and put some pressure on it. When I went to the doctor he said, I might say diverticulitis but I think you would be on the floor in pain. I went for x-rays...and it was diverticulitis. Those little pockets in the colon were infected. As for the stomach bleeds I had no strength and felt like I would faint...never saw any blood in my stools or anything. An endoscopy showed the villains. I was really weak.
I guess the history is just imprinted after reading it so many times....it has helped me talk to docs too. 💖
I can add nothing to all the good advice save to remind you that Dr's are there for US not their convenience because THEY WANTED to MAKE people BETTER. There is no time limit or number of consultations limit in their contracts. without us they are unemployed . They need you as you need them. Do not feel a burden ever. Hope it improves for you.
Thank you cycli I do feel guilty about the way our medics are treated and paid though. My own GP son in law fled to Australia ( taking my heart) and he has a much better life/deal.
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