I have had PMR for over 11years and still on 11mgs. I have never been pain free.
This morning I had a gastroscopy because I have been suffering worsening nausea over the last 18 months or so. At first I didn’t realise it was all connected because it came and went. Now it is daily and has been making me quite miserable.
In July, a GP finally picked up inflammation in my stomach and thought it likely the pred was to blame despite me using mainly gastro-resistant pred. She put me on 30mgs Lanzoprazole. After a month, I felt much better but still had the nausea occasionally. She told me to stay on the Lanzoprazole. After another month, I was still getting the nausea. She told me to stay on the meds. Then I saw another GP who was horrified that she hadn’t referred me for a diagnosis. Yet another GP put me n the fast cancer track and it has taken 3 weeks to get the gastroscopy.
They have found oesophagitis, gastritis and a hiatus hernia. They also took a biopsy of a polyps.
Looking theses condition up, they all link them to not just the nausea but also acid reflux and heartburn, neither of which I have. The recommended treatment is PPI’s, which don’t seem to have worked for me, so now I am worrying that I am stuck with this nausea.
Any other ideas or experiences please?
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suzy1959
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At least you eventually got a GP who adhered to guidelines rather than just chucking pills at an unknown problem. If a PPI doesn't work, have they tried others? It is a not uncommon problem in the real world, about a third of patients are said not to respond to them. There are several versions and there are still the alternative H2-antagonists, ranitidine was the one everyone knew until it was withdrawn because of contamination but there are others.
I was also put on the cancer pathway and had a colonoscopy and the removal of 6 polyps ( I watched the whole thing on camera). An Endoscopy and then a camera endoscopy. My symptoms are gnawing lower abdominal pain beginning in the appendix area, loose stool alternating with a feeling of being blocked. Occasional vomiting and nausea. I was diagnosed with Diverticular disease, also a small hiatus hernia, they also spotted blood in my oesophagus ( + dismissed it as insignificant) and possible IBS. While I am relieved that they didn’t find anything more sinister my symptoms continue. I was also prescribed with Lansoprazole, this worries me as it is not for long term use and doesn’t seem to help much. I am also prescribed Buscopan which seems to speed up the cyclical nature of this disorder particularly the blocked bowel feeling.
I am on 5 mgs of Entric coated Pred - taken after Lansoprazole in the early hours. I have to be very careful with my diet and am finding new triggers all the time. The vomiting tends to follow a new trigger food and the list grows. My digestive system simply can’t cope with some foods or anything acidic. Unfortunately, once you’ve been through the fast track tests for cancer, they tend to be dismissive of the symptoms. I associate this with Tocilizumab plus Pred because it began with Tocilizumab and continues over a year after I stopped it. So you aren’t the only one to be left in a kind of limbo - land. Please let me know if you get a breakthrough.
I wonder about oesophagitis too because I used to get severe oesophageal spasms when on higher dose Pred. No kind of history is taken, they just follow this pathway looking for cancer. Not happy.
So sorry to hear you are suffering - nausea when it's continuous really pulls you down.
Is it possible that as well as the things they have found, there is something besides that is causing the constant nausea?
I am wondering if you may have the helicobacter pylori bacteria? Have they ruled this out? It can cause nausea and gastritis before it causes stomach ulcers. One of if my godchildren suffers from it periodically, but is always successfully treated with antibiotics. Her warning sign that it's rearing it's head again is that she starts to suffer unresolving nausea.
It can be detected from a stool test and I believe some practitioners also do a breath test. Your GP could do this if the hospital didn't.
It's worth ruling out, especially if you don't think the standard treatments for the definite things they have found are working.
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