BillyMac65
@billymac65
@billymac65
Posts: 14
Joined: Dec 06, 2012
Mesenteric Panniculitis or Sclerosing Mesenteritis
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Bill
Liked by fishcox, Bhamilton, jimmymac, LS4 / Lisa Schwart Tulsa Oklahoma (FB page) ... see all
PCfromFM
@pcfromfm
@pcfromfm
Posts: 54
Joined: May 15, 2017
@fernandoparce Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.
No I haven’t tried any liquid form-it has been awhile sine I’ve had to take prednisone. I avoid it at all cost. Didn’t know there was a liquid form. I can’t do any form of corn. Many liquids have a corn sweetener or thickener and that really is bad for me! Interested in hearing about it! Merry Christmas all! Hope the new year brings you all relief and a good year in 2018! Hugs and good thoughts!
Liked by Von, Volunteer Mentor
kimh
@kimh
@kimh
Posts: 120
Joined: Nov 15, 2017
@fernandoparce Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.
What??? There’s a liquid form??? I wonder if it would make any difference regarding my side effects (weight gain, esophageal spasms, strange hand viruses?) I’d also like to know the benefits of taking Prednisone in a liquid form…
viva
@viva
@viva
Posts: 16
Joined: Nov 12, 2016
@fernandoparce Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.
Merry Christmas and a Happy New Year!
Lisa Lucier, Connect Moderator
@lisalucier
@lisalucier
Posts: 2798
Joined: May 10, 2017
@fernandoparce Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.
@vdouglas –I’m guessing perhaps you are talking about the liquid prednisolone?
Von, Volunteer Mentor
@vdouglas
@vdouglas
Posts: 189
Joined: Mar 06, 2015
@fernandoparce Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.
@lisalucier Lisa
Yes possibly, a member mentioned taking 20 mg of a liquid for mesenteric panniculitis inflammation and tapering off. This is the first time I have heard of a liquid being prescribed. And if it is prednisolone that is the first time I’ve heard of it prescribed as well. I’m just curious and trying to learn from some of the comments. There is some information on prednisone in a liquid but mostly being called prednisolone.
Could 20mg or 40mg prednisolone be a normal dosage for inflammation?
Just curious,
Von
viva
@viva
@viva
Posts: 16
Joined: Nov 12, 2016
@viva Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!
@hopeful33250 Hi Teresa, I’ve changed my diet and my eating habits. The first thing I learned is to only eat small amounts. Too much food causes bloating and pain. I have also eliminated cooking or eating spicey foods. I cook with Mrs Dash and that seems to work for me. No onions or garlic. I’ve also found I can eat a can of soup with no problems. I also avoid beef and fast food. No cheese or dairy. It has definitely taken some adjustments especially during holidays. I’ve found if I’m very careful about the choices I make I do pretty good. Finally regularity is a must for me. Two days missed I start feeling those symptoms!
Liked by Teresa, Volunteer Mentor, Poppy73
PCfromFM
@pcfromfm
@pcfromfm
Posts: 54
Joined: May 15, 2017
@viva Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!
Sounds like my diet is close to yours @hopeful33350 and with Christmas starting I’m struggling already! But I just have to be surprised-I’m not sure I’ve ever gone two days! I’m the big D and lookout several times a day-that’s my “normal”. I can’t even imagine two days without it! Wow! Not like something I usually talk about but I wonder how many others are my “normal”- or yours!? I just assumed (silly me) everyone else was like me! Interesting! Learn something new everyday! Thanks!
Liked by Teresa, Volunteer Mentor, viva
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 7872
Joined: Mar 28, 2016
viva
@viva
@viva
Posts: 16
Joined: Nov 12, 2016
@hopeful33250 Hi Teresa I’ve also eliminated caffeine from my diet. Avoiding these foods from my diet is very disheartening sometimes but definitely worth it in the long run! Feeling better and being able to function with some sense of normalcy makes it all worthwhile!
REPLY
viva
@viva
@viva
Posts: 16
Joined: Nov 12, 2016
@viva Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!
@pcfromfm I am amazed at your “normal”! I struggle with this issue on a daily basis. I’ve been prescribed several really harsh medications to try and combat this problem. But I look at it as just another part of MP that I must deal with in order to feel better. So lucky you!
kimh
@kimh
@kimh
Posts: 120
Joined: Nov 15, 2017
@fernandoparce Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.
I wish everyone a very Merry Christmas and a Healthy and Happy New Year!!!!
REPLY
kimh
@kimh
@kimh
Posts: 120
Joined: Nov 15, 2017
@viva Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!
Small, almost snack like eating (rather than full plate meals) work better for me as well…
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 7872
Joined: Mar 28, 2016
PCfromFM
@pcfromfm
@pcfromfm
Posts: 54
Joined: May 15, 2017
@viva Hello fernandoparce, I have been following your post for the past two weeks or so and I am so sorry to hear that you are having such a hard time with this disease. I was diagnosed with MP in April 2016. It’s definitely no picnic to deal with. I tried Prednisone 20mg it made me so sick that I just couldn’t take it anymore. Things have gotten better because of a serious change in my diet. If I eat right I feel better. I too have loss quite a bit of weight so I understand your concern. Just wanted to let you know that you are not alone! Hopefully you feel better soon!
Lol! Sorry! Not funny but all good! Yes meds are (to treat D) terrible as well so we motor on!
@vdouglas
In reply to @fernandoparce
Ouch! @kimh , that doesn’t sound good. I hope it heals quickly for you.
Since you mentioned the PREDNISONE, I have a question for you @kimh or anyone else.
Have you taken the liquid form of Prednisone? If so, how was it tolerated? any nausea? @pcfromfm @poppy73 @lockedavid @doron @carbxbe8206 @denia @jolied @bertbiz
Thank you for your response – I hope everyone is managing
Von