I was diagnosed with polymyalgia in 2021. By summer 2023, I had reduced to 4.5mg. But the death of a close friend, for whom I am executor, resulted in a big flare. I consulted Rod Hughes privately in autumn 2023 and was advised to go to 15 mg and reduce in stages. I reached 9 but a flare caused by extensive and expensive dental work meant that I had to increase the steroids. I followed the flare procedure but the increase in steroids caused stomach problems which were so bad that for a period I could not take other medication or the calcium and vit d. I have always used Omeprazole and Greek Yoghurt to take the steroids but, on advice, switched to Esomeprazole. The stomach problems continued and I had to take a double dose. Following discussions with my doctor and Rod Hughes, I have switched to coated pred. I am taking 5mg at 11pm and 5 mg at 7 to 8 am. I am now getting pain and reflux , possibly abdominal about 3 to 4 hours later. I am assuming this may be the pred dissolving in the intestine.? My local rheumatology department wants me to try methotrexate, which I know to be a steroid sparer but which, I understand takes time to kick in. I am still taking Esomeprazole because I have a hiatus hernia.
I will continue with the coated pred for a couple of days and then if nothing improves contact my GP and Rod Hughes.
My question is, if one cannot take oral steroids, what next?
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If I remember rightly, SnazzyD needed both e/c pred AND the right anti-acid preparation to escape stomach problems with pred. PPIs themselves may cause problems and it may be worth asking to try an H2 antagonist instead.
It is possible to manage PMR using depotmedrone deep intramuscular injections but it can be trickier in the long run - it seems harder to regain control if it goes wrong. The injections need to be every 3 or 4 weeks as Dasgupta trialed but some doctors obviously haven't read his work because they won't give the injections consequently enough, confusing them with the limited use for joint injections and allowing flares to develop. They are mentioned in the 2015 Recommendations.
I could have written your post because I have followed the same pattern of symptoms. At your stage I was actually put on a cancer pathway. This involved a Colonoscopy and Endoscopy and an Endoscopy with a swallowed camera. I was diagnosed with a small hiatus hernia and Diverticular Disease. Under advice, I have been treating the symptoms with Buscopan and small meals of food that don’t aggravate my intestine. I take Pred with Lansoprazole and Buscopan before meals. It took months but the pain has settled mostly now. I have had random episodes of vomiting which I still don’t understand and nothing shows up in tests. I cannot deviate from the careful diet at all. I am trying to taper from 5 mgs of Pred and am seeing my Endocrinologist towards that end. There really is no substitute for Pred. Steroid sparers may help to reduce the time you are on them though.
It is a horrible gnawing pain. Those are my trigger foods/ drinks too as well as chillies, lemons and some leaves. I think that Actemra was the final straw for my symptoms. Let me know if you find out anything. I felt a bit dismissed after the cancer pathway, clinical testing,didn’t produce results.
The cancer pathway is really basically a means to ensure you got your tests as quickly as possible - it almost certainly wasn't because they thought you had cancer. And negative results don't mean the testing was a failure - they ruled out a lot of possibilities besides cancer. They tell them a lot of things.
I have always been on coated pred. and only took Lanzoprazole about once a week, when I could feel some acid. Then a couple of years ago,I started to get nausea more and more regularly until last summer when I finally asked the GP about it. She prescribed a double dose of Omeprazole. When that didn’t work, I had a gastroscopy which showed a hiatus hernia. It took another two months of double doses of Esomeprazole plus Gaviscon to get rid of the nausea. I am now on just one dose of Esomeprazole and contemplating switching to Famotidine now that my symptoms are under control.
As PMRpro says, we do sometimes need both coated pred. and a PPI yo treat the problem, but not for ever.
In the early weeks of Pred I just couldn’t get on top of gastric irritation. Omeprazole made things worse and I think I just didn’t have enough acid. I then changed to an H2 antagonist type like Famotidine. This was much better but I ended up with rebound eventually. A friend was in dire straits with Omeprazole and other PPI’s and has found Famotidine the best thing ever long term. Once my acid balance was messed up it took a while to get things to calm down. In the end I had to go onto coated Pred which was a game changer but still needed nighttime Gaviscon. My takeaway was that it isn’t always as easy as a light switch with any one remedy doing the trick instantly. The transition form PPI to H2 antagonist was like having a couple of weeks of boiling lava on top of the lower intestinal havoc caused by the PPI. I would say in all it took 3 months to settle.
In your position I might think about trying to get an endoscopy to see if any erosion or other things have occurred in the interim which may need a different approach or at the very least a targeted one.
I’ve been on 10mg Omeprazole and would like to change to Famotidine as I know PPI’s are not good long term. What would you advise on how to transition please?
I don’t have anything official and I was given no advice. When I changed I just wanted rid of the PPI due to various side effects that I just stopped and went straight onto the H2. This may have been part of my issue because they work differently. Having a look online transition plans or even plain withdrawal plans don’t exactly leap out in droves. On one forum I saw someone said they added in the new instead one of the doses of PPI and slowly increased the number of doses of PPI replaced but I don’t know how if there are cautions with taking both. You could try a pharmacist and of course the person who will prescribe the H2. Hopefully, they might have an idea though I wouldn’t hold your breath as docs are not pharmacologists and unless they have had lots of people with this issue, which I bet they haven’t, might not know there is even a problem.
I sympathise with your reflux etc issues. My OH is not on all the meds, but has for many years suffered from bad reflux problems, which often keeps him awake at night. He is permanently on Omeprazol and Gaviscon and has said Omeprazol is terrible meds to try to come off of. He has a hiatus hernia (as do I), which doesn’t help. He has gone onto a very low fat diet which has helped. However, be warned if you want to come back onto a higher fat diet, you need to do it very slowly. Acid containing foods, fizzy drinks and spicy foods are also triggers. His diet is very bland now and it doesn’t always help, but these foods certainly make it worse. Also elevate the head at nighttime and don’t eat heavy meals before bedtime.
"Also elevate the head at nighttime and don’t eat heavy meals before bedtime." A few years ago, I bought bed elevators online. These elevate the head of my bed about one foot. (They are placed under the bed legs!) I also put a pillow under the mattress to elevate even more. I eat my last meal about 3 to 4 hours before bedtime. Then, I start to hydrate with cups of water until bedtime.
Due to the anatomy of the stomach, lying on one's left side helps prevent "backup." I only do this if my food intake was closer to bedtime. I used to love pasta with plenty of red sauce (tomato) but I've avoided this for several years. Nowadays, I avoid alcohol.
The above measures have nearly eradicated my previous problems with heartburn. As suggested on this forum, I take my prednisone when I arise with a couple spoonfuls of yogurt. A few days ago, I noticed stomach irritation during the day. That prompted me to, once again, take my prednisone in an enteric-coated capsule.
I think caffeine was the irritant and I probably should give that up, though coffee does have some benefits for me.
Many thanks for kind response. I’ll pass that on to my husband and see if anything is of a help to him, as he still has issues with sleeping and trying to lie down.
Hi. You have all my empathy. My biggest problem dealing with PMR has been my stomach. I have suffered since age 9 with a form of colitis still best described as a spastic colon and then eventually a spastic esophagus Diagnosed with PMR I. 2018 my sweet spot dose was 12.5 Pred. Over the years reduced and now at 5 due to a flare. Always dealing with my gut. Now it is even harder to stay on 5. At 1 and 2 stomach was much better. I have a gastroenterologist who checks with colonoscopies and endoscopies every couple of years. My colon is now severely twisted and he saw the esophagus spasm during a procedure. I also had a colon ischemic bleed once and ended up in hospital
Here is what I take to manage. I take 20 mg Esomeprazole at least 30 min before breakfast and dinner At night if I feel some burning I take 40 mg of famotidine. I supplement with Alka Seltzer antacid chews.
If I have an attack of nausea/and or abdominal cramps doctor has given me an arsenal. Nulev sublingual quiets the gut and is easier to take than straight Levsin. Then if nausea doesn’t stop I take 4 mg of Zofran. I could not manage without my rheumatologist and my gastroenterologist. I have my “pain kit” in my purse at all times. And yes there are many things I do not eat. Cannot have a glass of wine. But I can have a glass of very sweet wine on occasion that does not have high acidity. Like a very good Sauternes. Chocolate etc is very limited. And no fizzy drinks no oj juice etc. you find what hurts and what doesn’t.
Since I am Italian I make gravy that I doctor up with some 1/4 teas of baking soda and a teaspoon of sugar (amounts change with how much sauce you are making ) which helps cut the acid I don’t eat a lot if it but this usually allows me to eat pasta like this sometimes
Like with all autoimmune my stress level makes everything worse. But you need meds to cope with these symptoms because they stress you out also!!
About 5 years ago I was having dreadful stomach/digestive problems. I was on 5mg prednisolone and taking Pantoprazole (a ppi like Omeprazole). I already had an IBS diagnosis and had identified my trigger foods by doing the FODMAP diet at the suggestion of my Gastroenterologist.
I had gastroscopy and scans and the only thing found was a little redness in lower part of my oesophagus and a small area of redness in the stomach. Biopsies were taken.
My gastroenterologist decided to. treat me for Helicobacter Pylori (just in case) but all the tests and biopsies were negative thankfully.
By the time I had the last test, the Colonoscopy I had finished the antibiotics and lansoprazole.
I didn't go back to taking the pantoprazole. I realised that following the colonoscopy all of my stomach/bowel issues had resolved.
I saw my Consultant and he explained that the ppi group of medicines did have issues with some people. He suggested either sticking with Gaviscon or going back on to an H2 inhibitor like Ranitidine or in my case Cemitidine as at the time Ranitidine had been withdrawn due to "manufacturing issues". He also explained that the colonoscopy prep probably purged and bad gut flora that may have been causing issues.
So some 4 years on I am still taking the Cemitidine without issue. Still on 5mg of prednisolone. I am usually careful to avoid my IBS triggers but occasionally I risk it with a Chinese takeaway (MSG is one of my triggers) or eat a mango because I love them.
Hope you find out what's causing your problems and finds resolution.
I had to give up on oral steroids because of the damage they caused to my stomach. I now have Depo-Medrone injections every four weeks.,tapering every three months. They are not as adaptable as pills obviously because you can't up the dose for flares etc. but they do get the steroids into your system without such drastic effects. ( It took a couple of months for my painfully swollen stomach to reduce back to normal size after I'd changed from oral to intramuscular.) Is it worth discussing these injections with your Dr? You.might have to go armed with all the information you can find on here.Good luck. I know it's no fun rolling in agony with a stomach the size of a football!!
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