Steroid treatment has stopped IBS symptoms
Posted , 12 users are following.
Hi,
I have been recently diagnosed with PMR and have been put on steroids. Aside from the incredible relief from pain in my shoulders and hips, I have also experienced a dramatic reduction in Irritable Bowel Symptoms: pain, bloating, discomfort etc. I have suffered from IBS since I was a teenager. I am now thinking that the PMR and my digestive/bowel issues are related and that I have always had some form of inflammatory bowel disorder that is now responding to the steroids. The change in my quality of life is remarkable. Has anyone experienced this? And if so, when the steroid treatment for PMR stopped did the other symptoms return?
2 likes, 17 replies
Rimmy AMcG
Posted
Hello
Yes !! I have had a very similar experience and have mentioned it before on this (or perhaps it was another) forum. I was put on to a higher dose of Pred for GCA after a few weeks of a lower dose for what was initially (only) PMR. After a month or two I was VERY surprised to notice how much my (also) long term IBS symptoms had improved. Only someone who has had to put up with those symptoms for years would really appreciate what a relief it was NOT to have them for a while - and consequently I have also wondered if the anti-inflammatory qualities of Pred was (pardon the pun) 'behind' that !! Anyway as I have now tapered down to 12 mg I am noticing some very minor (at least as yet) return of symptoms - but nothing like in their old form. Like you I am hoping that they never come back but I suspect they might when I taper further. I have not as yet found any research on this but I think this is a relationship which could be properly investigated for the benefit of those made miserable by chronic IBS. In the meantime I have been munching on raw vegetables and foods I have avoided for years and loving it while the going is good !!
Best wishes
AMcG Rimmy
Posted
Thank you. It is great to hear that someone else has had the same experience. Sometimes I think that IBS is used as a catch-all, somewhat like when a doctor says you have a virus when the diagnosis is unclear.
I really feel like I have been given someone else's body. I can now lift my arms above my head and can eat raw onion in a sandwich, albeit still a gluten free one. Whose ever body this is, they're not getting it back!
Rimmy AMcG
Posted
Yes a 'double whammy' in all the RIGHT ways - I had almost 100% relief 3 hours after my first dose and then to have the IBS 'disappear' pretty fast as well I have had a FAB 'pain-free' few months and am very grateful for all the positive effects of Pred so far. I have also lost 10 kg and kept it off and have no really bad side effects so far (except for the 'racy' feelings on the high dose) and just some slight osteopenia which I am hoping will be improved down the track. Even the now fading 'moon face' has been worth all the fun of NOT being in pain - so I hope you can also continue to enjoy all the positives of taking Pred that many of us have also benefited from. I do realise however that not everyone has been so fortunate.
Best to all
3party AMcG
Posted
AMcG 3party
Posted
Silver49 AMcG
Posted
Many people manage to come off steroids and never go back on. Some are on a low maintenance dose....probably for life but not necessarily. We are all different so please don't despair. I am presently on 3mgs and the reason I had to increase from 2.5 was because I wa trying to use up some 2.5s which were well out of date. I hate waste especially as our NHS is struggling. I knew myself it was a bit of a chance but I was prescribed so many and managed to reduce hence the extra out of date ones. Don't rush the reduction as it often ends up in a flare.
EileenH 3party
Posted
Don't know whether to say "sorry" or not as I tell you that really isn't the case!!
Something like 75% of patients with PMR are able to stop taking pred in up to about 6 years. 25% or off in 2 years or so, but remain at a higher risk of a relapse than other. Half get of in up to 4 to 6 years. The rest of us are long term captives but some get off pred - I know of someone who had given up hope but was able to stop after 11 years! Some of those patients have to stay on pred because of poor adrenal function, not the PMR itself. Then are the 5% of us who have what is called refractory PMR - lifetime.
And those figures really do fit with what I have seen on the 3 forums over the past 9 or so years. I have plenty of mates who got off pred - some sailed off into the sunset, others are still hanging around the forums to give hope. There is even a thread on here somewhere for the Zero Pred Club members to tell their stories.
EileenH AMcG
Posted
Anhaga 3party
Posted
That's simply not true. Only a small percentage of people remain on pred for life. Most will be off within four to six years, and a few lucky souls within the doctor's expected two. There are a few who take longer than six, but even many of them will eventually be able to stop steroids. But, admittedly, it does sometimes seem like forever, after the first couple of years!
Anhaga EileenH
Posted
Oops, sorry Eileen. I didn't see your reply before firing off my reaction to AMcG!
EileenH Anhaga
Posted
Elizamc AMcG
Posted
angelcake61 AMcG
Posted
Juno-Irl-Dub angelcake61
Posted
Hi angelcake, I thought I had IBS for many years. Then, when I mentioned to my GP that I had lost some weight in the past year, alarm bells seemed to ring in his head and he sent me for a colonoscopy.
During this a biopsy was taken of the bowel wall which showed some inflammatory cells resulting in a changed diagnosis of "Microscopic Colitis".
I was prescribed a 16- week course of a steroid (Budesonide) which I'm still taking.
I can't believe that MAYBE the "IBS" symptoms will cease - we became so close over the years, I'll nearly miss it!!!
So, what I'm saying is, Eileen is correct in saying that often the IBS diagnosis is a "catch- all" one - ie. made when a number of other ailments are ruled out. In my case, until recently, not enough 'other' ailments were considered.
By the way, despite being blessed with PMR also and being on Pred. for 4 years, the Pred. had no effect on my "IBS" even though the new diagnosis of Microscopic Colitis is also a mild inflammatory illness.
The new medication acts (mostly) in the bowel only. . . .
J
jean39702 AMcG
Posted
My IBS disappeared when I was diagnosed with PMR and began taking 40 mg of prednisone. It was so wonderful to have normal BM's after 20+ years. Unfortunately, it didn't last very long. I can't remember when the IBS returned, but it's been back for a long time. Fortunately, my runs to the bathroom are only first thing in the morning and things totally subside within a couple of hours.