Oh dear Benipali

[Jackie1947]

After two successful years on this for RA I came crashing down a few weeks ago. Briefly a few or even more months ago I started really painful stomach cramps and were unbearable and were pretty constant. Let it go for a while and messaged the dept about them. Possibly not Beni although it can be a side effect I was told Fast forward 3 weeks without it as an experiment and no stomach cramps. I saw my rhuematologist yesterday for a chat talking about the next steps although I'm now limited to what I can have next. Won't go into that. Bloods were taken and I had a Depo Medrone injection to tie me over as I've been flaring this week. So be bye Beni my friend and thanks for keeping me in a better place. On wards and upwards.

[springcross]

How disappointing for you. I hope the next one will be a friend too but much longer lasting.

[Jackie1947 in reply to springcross]

🤞🤞

[Hidden]

Hi Jackie. I also have RA am on benepali ,and have been on it for about 18 months. I have had recurrent bowel problems for 10 years, mainly lower bowel, with chronic cramps, trapped gas etc. More recently I have also had upper GI problems due to a blocked bile duct , due to stones. Recently had my GB removed . I have needed many courses of antibiotics in the last 6 months, and therefore off benepali for much of that time. The only thing that helps me is a course of antibiotics. I am still having tests to find the cause of my lower bowel problem. However the many courses of antibiotics have settled things for now. Back on the benepali. I am wondering if you might also benefit from an antibiotic blast, if your consultant thinks it suitable. When I first had these cramps 10 years ago antibiotics were helpful then too. Your problem might not be the benepali. It could be an upper or lower GI issue. Good luck.

[Jackie1947 in reply to Hidden]

I do have certain gut problems but over time what the Benipali contributed was increased pain . I've had loads of tests and my rhuematologist and gastro department work together. The culprit was Beni no doubt about that and antibiotics wouldn't have been appropriate . Interesting though . Thanks

[Hidden in reply to Jackie1947]

Thanks for your reply. I am glad both departments work together for you, and I hope they find an effective medication that you can tolerate. So many meds have serious but rare side effects , which is hard if you are one of the unlucky ones. The only adverse effect I have noted with benepali so far for me, is lower neutrophile readings . I check my skin too . My bowel problems started well before I took benepali, so in my case, I cannot see a link. All the best.

[Soundofmusic52]

oh sorry to hear that hope your going to get sorted soon I’m on Benepali and dread the day they take me of it as my life is good 👍🏻🤞🤞

[Jackie1947 in reply to Soundofmusic52]

So was mine . I hope to go on another type soon.