I’ve been enjoying the posts on What’s in a Title and thank you to all involved.
On a more mundane matter, I had a telephone consultation with I’m pleased to say, Dr Murray’s gastrointestinal/Scleroderma clinic over a week ago. It was with Kristina Clarke who I’ve met before and when she heard I was struggling with more reflux, choking on the night, increased snoring according to my husband and choking on the phone she recommended I double my Esomeprazole to 40mg a day. She also suggested adding metoclopramide 3 times a day for gastroparisis when I described my bowel symptoms. (If this didn’t work they may get me to try the one beginning with P which can’t remember!). This is also because my symptoms were worse as I was wearing a leg brace at night for a broken patella. You can only sleep on your back which thankfully I have stopped doing now. I tried both probably stupidly on the same day and felt really strange dizzy etc with awful headache. I was on a 2 week cause of Ciproflaxacin for Sibo too. I abandoned both and carried on with the Ciproflaxacin which that and the paracetamols for my leg made me constipated but felt ok. Finished ciproflaxacin a couple of days ago and I’m really suffering with nausea, weakness and constantly loose stools (sorry!) gurgling etc. back to square one with the Sibo. This has been a problem that when not taking antibiotics back it comes.
My questions are from your experience, should I start the double esomeprazole and metoclopramide in the hope it might help? My instinct is perhaps to try one at a time. I’m worried also about moving to a higher dose of ppi as I have osteoporosis and it’s said to be a cause of Sibo. Perhaps I should start with the metoclopramide? Anyone who has had similar problems I’d be grateful to hear from
Thanks
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Halfwayuphill
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I take both drugs twice a day. I even have nizatadine as well on a night for my refi.
Metoclopramide is an anti sickness drug too.
For my sibo I take movicol twice a day to help empty my bowel.
I take metoclopramide twice a day to empty my stomach along with erythramyacin and misoprosol 4 times a day.
I also take each for two Weston a rotating basis- coamoxiclav, ciproflaxin and Rifaximin.
Seeing Dr Murray at The Royal Free and Dr Pathmakanthan at The Birmingham QE was a game changer for me. It means I can be social without fear.
I also take steroids (continuous for 22 years).
I’m concerned about my bones but know aspirating my stomach acid will kill me quickly with my lung disease. I take the PPI s aive with a much better quality of life.
This is so helpful Truncalobesity and I’m glad it helps you have a social life.
I don’t as yet have lung involvement but I think you are right. It’s all a balance and I have osteoporosis anyway which I’m treated for. I will try the Metaclopromide too. If nothing else I would like to not suffer so much with nausea.
hiya, Metaclopromide didn’t work for me. I have just started Prucalopride and no side effects. This may be the P medication. However, I have had awful stress at work and I am off sick. The stress has caused my systemic sclerosis symptoms to get worse. I am struggling to eat because of difficulty swallowing, oesophagitis and reflux. I have lost over 2.5 stone in the last few years and I am losing more every day as I am not eating at all now because of anxiety, so I can’t say how the new medication can help. I am immediately coughing up even water with stomach acid so I have to have a sick bucket with me at all times. I have been off sick for 5 weeks. I am going to have to resign because every time I think of work I get an anxiety attack so I’m not going to get better at all working for them. They are a finance company that advise multimillionaires and they immediately put me on statutory sick pay. My sick pay for May was £350. Has anyone else had problems with employment?
Hi AJOC4, i also had to give up work, i am a civil engineer and was very active, however i realized the stress and fatigue were freaking me out and my Scleroderma flaring up and getting worse. This cost me dearly and i still see dreams at night that i'm out there in the work force contributtong, but the truth is it's good to be able to relax and keep out of trouble. So i've decided to readjust to my new reality, avoid stressfull situations and limit my activities to the minimum, just take it easy for now, not much else i can do if i want to survive.
Ah, my other half works in civil engineering. I feel so much better now I have resigned. Stress is terrible for systemic sclerosis/scleroderma. Thank you for your reply
also I have doubled my Omeprazole. I take one 20mg in the morning and one at night and it has really helped reduce the choking and coughing up stomach acid in the morning.
Hi and thank you so much for your reply. I am going to take the extra esomeprazole and try the Metoclopramide after these messages.
I’m really sorry you are going through all this stress at work. I’m afraid I’m not well up on employment law and sick pay but it seems mean to be put straight on statutory sick pay. Perhaps someone else on this forum may be able to help? Stress is so bad for these conditions and I do hope you get help to sort it out. I think SRUK may have something on this?
Thank you so much. I have now resigned and feel like a weight has been lifted off my shoulders. I need to start eating again, put on weight and get a less stressful job.
Hi i've got SSc, having same problems more or less, i have Sibo with acid reflux, nausea, loosing weight, votiming every night, no apettite, my stomach constantly gurgling full of liquids, food not being digested, loose stools etc. etc.. my doctor gave me antibiotic to stop the Sibo, this i stopped the noisy girgling, and was told to eat light small meals more often, almost every hour, to absorb the acids. Also because of the pain and fatigue i was lying down too much which made the intestine lazy. So the big game changer for me came recently when doctors decided to administer IMMUNOGLOBIN to deal with the inflammation, as if by magic the pains in my joints disappeared and i started to be more active, i suspect this must have also helped the stomach and small intestine to be more active and better absorb nutrients, because vomitting & loose stools also stopped. Although i was initially prescribed double PPI's (Omeprazol) 40mg, i then i decided to gradually phase this out, because i realized that when i took double Omeprazole that after 2 or 3 hours my stomach would swell with liquids and start girgling, like a swimming pool, so now I only take PPIs when i start to feel some pain in my stomach or when i see reflux is starting, that is to stop the extra acids being produced.
I also raised my bed 30' degrees (with pillows & blankets under the mattress) which helped a lot to limit acid reflux at night, of course this still happens now and then, especially when i leave the stomach empty for too long or when i eat wrong combination of foods that cann't be digested. This has become a daily balancing act.
I’ve never heard of immunoglobulin being given. I looked it up and it seems the royal free (where I go) are doing a lot of research into this. Unless you have a genetic reason for needing this it is sometimes used if you have a secondary immune deficiency such as Myositis. I think some get this or something similar with systemic sclerosis. I had a look at my blood tests as the abbreviations they use for the tests for this look familiar IgA, IgM etc, but can’t see it in recent tests and I’m sure I’d have noticed if low. I don’t think my muscles are that weak anyway and my pain and weakness is definitely worse during Sibo attacks but I’m getting less breaks from it I must admit. Luckily I very rarely vomit and I’m sorry you have this too.
We have raised our bed head too but I don’t see much difference, perhaps not enough!
Well done on lowering the ppi. I might do the same but in the meantime I am going to take the Metaclopromide as I really need to tackle the constipation. A lot of my problems at the moment are due to being less active with my broken knee but at least that is on the mend.
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Recently diagnosed. Confused and concerned. 
