1. < Digestive Health

Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

kimh | @kimh | Dec 15, 2017

Yes, he has! It's nice to have conversations with people who 'get it'! I also find that sharing any advances in therapies very helpful.

REPLY
kimh | @kimh | Dec 15, 2017
In reply to @judy147 "Looking back I remember in the lat 15 years having episodes where my stomach felt sore..." + (show)
@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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I go for an annual bone density test and since my first round of Prednisone, it has been discovered that I have osteopenia. I believe that is the reason that the doctors have been less aggressive with the prednisone therapy.

REPLY
fernandoparce | @fernandoparce | Dec 17, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@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.

Jump to this post

when they came back from the CAT scan all the doctor told me I had a very rare disease call mesenteric panniculitis and that she will refer me to a gastrologist I am at work right now but as I'm Walking the Floor I'm getting like cold sweats so I don't know what's going on with this disease. Did the pregnazon give you any of those side effects.

REPLY
fernandoparce | @fernandoparce | Dec 17, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@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.

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Thank you very much only got one more question do I ask my doctor if I could get some time off I'm at work right now and I could only walk for about 15 minutes and I got to come back to my office and sit out for a while itsec numbness in my feet and cold flashes I don't know if the steroids are causing all that.

REPLY
kimh | @kimh | Dec 18, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@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.

Jump to this post

Hi Fernando,
My side effects were (and still are because I am back on Prednisone): weight gain, facial hair growth (I'm a girl!!), the hair on my head was becoming brittle and falling out and I ended up with osteopenia. I may have had mood swings, but I'm still sure it was everyone else around me lol! To be honest, there are many potential side effects, but I needed the pain and the nausea to be alleviated.

REPLY
kimh | @kimh | Dec 18, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@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.

Jump to this post

Sick leave is a discussion that my doctor brought up with me, because I was unable to fulfil most of my work duties due to pain. In my case, exhaustion and nausea were also issues. My job is one that I need to give my 'all' and would be very unfair to my students and colleagues if I were to just 'dial it in'.

REPLY
fernandoparce | @fernandoparce | Dec 18, 2017

Hello everyone my name is Fernando I just started presents on a week and a half ago can somebody tell me what is it for the doctor told me to drink 40 mg but I'm taking 20 because 20 makes me nauseated and doesn't make me feel too good now if I'm taking 20 in a week then take 15 then another week 5 and then stop I'm not too sure how to take them can anybody guide me to this.thank you

REPLY
1 reply
Von, Alumni Mentor | @vdouglas | Dec 18, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@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.

Jump to this post

Hello @fernandoparce , Prednisone can cause a lot of strange feelings, your pharmacist should be able to answer any questions you may have. Do not hesitate to call them. Everyone is different regarding medications.
@kimh has given good advice to you and has experience with Prednisone and side effects.

REPLY
Von, Alumni Mentor | @vdouglas | Dec 18, 2017
In reply to @fernandoparce "Hello everyone my name is Fernando I just started presents on a week and a half..." + (show)
@fernandoparce

Hello everyone my name is Fernando I just started presents on a week and a half ago can somebody tell me what is it for the doctor told me to drink 40 mg but I'm taking 20 because 20 makes me nauseated and doesn't make me feel too good now if I'm taking 20 in a week then take 15 then another week 5 and then stop I'm not too sure how to take them can anybody guide me to this.thank you

Jump to this post

Hello @fernandoparce , are you taking PREDNISONE? If so it is generally used to reduce inflammation and may have other benefits when used to treat Mesenteric Panniculitis.

Your doctor may have instructed you to take it with food, maybe after a meal. Prednisone can make you nauseous. If your doctor instructed you to take it after a meal, make sure you are doing that to minimize any nausea. You do not want to quit taking it without talking to your doctor first.

Please call your doctor or pharmacist and let them know that you didn't take the 40mg. It may not be a big deal. Maybe they will just have you take 20mg for two weeks then taper off, you just won't receive the benefits of the 40mg.

Did this answer your questions?

REPLY
fernandoparce | @fernandoparce | Dec 20, 2017
In reply to @fernandoparce "Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this..." + (show)
@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.

Jump to this post

Thank you and yes he told me to take 40 but I started at 20 I just never take pills. But im still losing weight I just think it going to kill me soon.

REPLY
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