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First Name
Julie

Country of Residence
Australia

Health Interests
Autoimmune diseases

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Mon, Apr 29 5:04pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I would have flu like symptoms when my pain and cramps are bad. Yes a little headache, but not migraine. Look after yourself and don’t overdo it.

Sat, Apr 20 4:02am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi Di, I don’t know about the fibrosis as your dr said. My MP is an inflammation of the messentry (that’s the fatty part that holds the bowel together). I am just on tomoxefen, now, as I said before and I think this is a cancer preventative. They often give this drug to women who have had breast cancer. I continue to have blood tests and a CT scan every year or 2. I have been told that this condition MP, can just go away! I’m hoping and praying for this. Try not to get stressed, less of that is better. Don’t overdo exercise and try and eat well, cutting out the fatty foods. 🙏 ps I have also been recording what food I eat each day since January. Just to see if anything triggers…..but nothing is jumping out as beng detrimental……..(and really , certain food should not really make things worse, as MP is on the outside of the bowel. )

Sun, Apr 14 4:43pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Thanks Di, Yes we can all support each other which is wonderful. I also like the comments about refocusing on other things, like reading, painting etc. I love to garden and Autumn is a beautiful time of the year to be out and about, with trees turning all sorts of shades of reds, oranges and yellows. I limit myself though, and can't do what I used to, but still enjoy this wonderful pastime of pottering around, cutting back , mulching and even weeding. Yes, we can't let this condition get on top of us, we need to be always thankful for what we have and what we can still do. Prayers for you.

Sat, Apr 13 6:00pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi Dinyo…..I was only on the steroids for 4 mths taking about 40 mg per day, then had to slowly come off because of my low calcium levels, as I mentioned earlier. Understandably seeing your mother on it for so long, has concerns for you, and I’m sure it must have been hard to watch someone you love go through those side effects. It was hard for you.
I believe short term though, is not so bad……. prednisode is an anti inflammatory drug , but don’t know of any other for an alternative. Sorry. Wishing you all the best 🙏

Fri, Apr 12 5:29pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi Dinayo, it certainly does help chatting to others who are going through the same trials. I had 2 CT scans and lots of blood tests. Then I was told that a biopsy was definitely needed to confirm MP and eliminate anything else nasty. Eg lymphoma . I had key hole and while doing the biopsy the surgeon checked my internals pretty well. I don’t know about CgA. They tell me MP is not a fatal disease, it’s an inflammation of the messentry….An immune disease, they don’t know much about. I continue to have regular blood tests. I have only been guided by the doctors from the beginning, even though they are limited in knowledge.
You said the ‘risks outweigh the benefit ‘ so not sure what your doctor is thinking in this regard. 🙏

Fri, Apr 12 12:26am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Yes a biopsy is the way to confirm MP. I had that.

Fri, Apr 12 12:23am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi I’m a 67 y old woman with MP. Been on prednisone for about 5 mths, early last year. Also still on tomoxefen. Had to come off prednisone because it wasn’t good for my osteoporosis which I found out I had during the process. P makes it worse! Grew a little plumper in the face due to P, but not too bad. When coming off P I had to reduce amount very slowly over 6 weeks, as to not experience bad pain. ( although I had one week of bad hip pain). I am only on tomoxefen now, (although I am having a Prolia injection every 6 mths…this takes calcium from blood and puts it into bones). Generally stomach pain is not too bad…. I try and reduce any stress. Only other medication i take is calcium tablets and vit D prescribed by dr. I am under an gastroenterologist whom I see twice a year. He doesn’t know a real lot about MP. I live in Aussi. All the best, hope this helps.

Tue, Feb 5 2:35pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

No only on Prolia and Tomoxefen at present. No immunosuppressant medication.