About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (14)

Jan 26, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

If they are recommending Mayo, I don’t see why you wouldn’t go. They were fantastic when I went. They made no promises on the future course of this for me, but so far so good. Only other advise I have is to try to avoid CT scans and opt for MRI’s when you have the choice.

Jan 6, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Von:

Sorry to hear you are going through another bout. I seem to be the extremely fortunate as I have not had a recurrence in over four years now.

I know this is completely off beat, but along the lines of diet, I have be trying to juice as much as I can. It is a pain to keep the juicer clean and to make the juices, but I have to admit that I feel better when I do. I know it is likely only a placebo affect that I am feeling, but I will take it!!

When I was first sick, a friend referred me to the movie and web site http://www.fatsickandnearlydead.com. It is about an Australian with an auto-immune who juices and travels his way across America. Not sure the science is sound, but again, when you are feeling that crappy, you will try just about anything, and so I did.

My favorite juice is as follows: Kale, spinach, and Swiss chard with an apple, half a lemon, and some strawberries all over ice. It is green and gross looking, but tastes not half bad. I just visualize all those good ingredients running like an army to help my immune system!!

Lastly, I took the 23andMe.com test. It is very cool. They now have over a million people in their data base and are trying to help pharma companies find enough people with wierd stuff like we do to sift through our DNA to find cures. I think all of us with this auto-immune should take the test, then tell them we have, who we are, and try to get a scientist to start looking at our DNA for a genetic marker. Just a thought.

Bill

Feb 6, 2015 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hard to believe it has already been three years since I posted this first comment in an effort to connect others out there with this terrible disease to help each other.

I have found this group tough to follow at times, as I worked through my own issues. Hardest part for me was getting off prednisone. I ended up taking it for ~18 months. It took another 18 months for me to begin to feel like my old self again.

But I think my story so far has been very fortunate. No relapse yet and hope that takes a long time to happen. I have been hesitant to add this, even though it is positive, because I know others are still struggling with getting this into remission and keeping it there. My experience was so acute that one doctor speculated that it could go away just as fast as it came because it was so acute.

So all I can do is thank God for giving me the strength to march on and I pray for the rest of you to likewise find the strength you need to persevere and all get healthy again.

Thanks to LS4 for leading the charge on creating a support group. I trust that those that participate find it meaningful and helpful!!

My wife recently began working at 23andme.com. They are working with pharma companies to help find cures for corner case diseases. The big issue for them has always been getting a patient population for study and test. 23andme helps them do that, dramatically reducing the costs of research. Let’s hope this innovative approach to genetic testing finds its way to our group one of these days!!

Best to all of you,

Bill

Feb 6, 2015 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I was on steroids for almost 18 months. 1 month at 40mg. Then I tapered back down to 20mg over 2 months. Stayed at 20mg for another 2 months. Then tapered to 0 over 9 months. As I tapered, the pain came back, and I thought I was relapsing. Turns out it was just secondary pain from the trauma, not the autoimmune. I used very small dosed of Lorazepam about once every 2 weeks to help with the pain and to calm me down. Basically, it was like taking a nice glass of wine. And it seemed to work every time! It took another 18 months for me to recover from the pred, and get my energy levels back to normal.

It was a long slog but I am doing well now and savoring every day!!

Feb 6, 2015 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I just posted an update below. Mercifully, I have been off the pred for 2 plus years now and the bomb has not gone off again. I sure hope I am not jinxing myself!!

Feb 6, 2015 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

K2aunt – How are you doing now? Are you in remission? Or are you still dealing with flare ups?

Feb 6, 2015 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I took a similar course of pred, but when I tapered to 20mg, they had me stay at that level for 3 months, before then working to come off all together, which took another 9 months.

Feb 6, 2015 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Erin – How goes your progress on this? Did you take steriods? Are you in remission?