Bloated feeling even after reduction

Flutterbie, do you credit the reduction in bloat to cutting out all gluten? I also have very bad bloating (for about 8 months now), but I also have IBS (although the doctor is diagnosing that because of the bloating), so I'm wondering if my bloating is due to prednisone or IBS, and wondering if cutting out gluten would help. I'm currently on 6.5 mg pred.

I'm also wondering if any of the people who don't like prednisone on this thread are on methotrexate, which is supposed to help you reduce/eliminate pred, and if not, why not? My rheumatologist has been trying to get me onto methotrexate, but I've been resisting, worried about a new set of side effects. But I'd love to hear from others who are on or have tried it.

I think I have been lucky and never had bloating. I have never had indigestion in my life either. I did cut out gluten initially as I had heard it stopped the moon face. It did actually work but it might have been just luck. I have not tried methotrexate, it does seem to work for some particularly if they start early, it also does not work at all for others and also has nasty side effects for some. My doctor is always trying to get me to take Alendronic Acid even though my Dexascan has a good positive reading.

I have tried methotrexate - I lasted a month before saying no more. It caused effects that are usually attributed to pred, hunger, weight gain, bruising etc but which I have never been bothered with on pred, even at 15mg. The hair loss and fatigue just steadily got worse despite upping the dose of folic acid ,until I could barely lift my feet while walking down the road. I gained a kg in that month - and can't get it off again. Never again - I didn;t have the usual mtx side effect of nausea nor the 1-day flu so many people say they have. The fatigue was 24/7, never had anyhting like it, I felt worse than with untreated PMR and I had that for 5 years.

For some people it may lower the dose of pred they need - but it is very unusual for people to get off pred altogether and not all get to a lower dose. There is no reliable trial evidence yet to show it does work - the best study showed it did allow patients to get to a lower total dose over a period of a year at least but at follow up 5 years later they found there was no difference in the incidence of any steroid-associated side effects. Which begs the question: why expose patients to the not inconsiderable range of mtx side effects if it doesn't make a difference to the pred ones?

I develop bloating when I eat more carbs - but more especially anything with wheat in. It isn't gluten, I can eat other gluten-containing grains, and gluten-free wheat starch caused the reaction for me too.

My rheumatologist offered me methotrexate because she wants me off the steroids as soon as possible because of my adverse reaction to them. I refused because two people I know told me they gpt really ill on it and warned me to not take before my doctor offered it to me. It is a chemotherapy drug, although used in lower doses for PMR than for cancer. All of these drugs are so unhealthy, but I think methotrexate is worse than prednisone. If you can taper without it, it's best to avoid taking the methotrexate.

In the past, I could definitely control bloat , by cutting out all wheaten/gluten products. I never gave it up completely (Dr's opinion that I would become even more reactive to it ) . If I had a little, and not often, the problem it caused, was liveable with. However, 3 weeks ago, all that changed and I now have a major problem. The first thing I thought of was wheat/gluten. I have seriously stopped taking it, but my problems have not gone away as yet.

I did have bloat problems in the beginning when I started on pred, but that magically went away.

The problems I am suffering now are much more severe.

I have suspected for many years now that it may not actually be the gluten that gives me problems, but it is the chemical concoction , that we now call wheat. It is packed full of chemicals from the time the seed is first planted. My reason for thinking this way, is that when I travel overseas I do not get the same reaction. A friend and I travelled through India with no health problems, but we both returned to our same old gut problems 2 weeks after returning home. We were there for 4 weeks. If I had the time and energy I would research it, but I do wish someone else would do it.

Mtx is a drug of choice to treat rheumatoid arthritis, which may be why it works for a few people with PMR diagnosis - they may have RA.

I can't eat the usual commercial wheat products in the UK, predominantly made with one type of wheat. I can, however, eat baked goods in France without developing the rash - they tend to use a different variety of wheat and also a slower method of production of the doughs for breads. Apparently this is not uncommon - and I can eat spelt and kamut which are also forms of wheat but totally different structures. I know it is the wheat starch I have a problem with - and it is broken down when making sourdough products. Even the NHS info page says the same.

But if the problem has recently got worse without any particular change otherwise it does need to be investigated to be sure there is nothing else going on. I have a friend who was diagnosed as coeliac in his late 50s/early 60s. Suspicion was raised because that summer he'd had repeated episodes of g/i distress - which all coincided with having been at grill parties where he was eating more bread than usual and drinking beer! Simple case of too much of a good thing triggering the symptoms. But there is some evidence that coeliac disease, an autoimmune condition, can develop in later life, not just in childhood.

Eileenh, our immune systems are strange. As a child my favorite ice cream was maple walnut, ate it quite often, plus at the holidays we always had a bowl of nuts about. So I ate walnuts. In my 30s I became deathly allergic to walnuts, even a few in a brownie. I think some of us just have compromised immune systems. Some day the medical community may find out why. 🙂

A friend told me about a young person of her acquaintance who was unable to eat corn (maize). She lives in Canada. She had to spend a few months in a South American country. I can't now remember which, but where maize was the main food. She and her family wondered how she would manage. When she got home she declared herself free of her maize sensitivity, having eaten it daily while away with no problems whatsoever - only to discover that when she ate North American corn again she had exactly the same symptoms as before.