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

@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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David, Not sure we are talking about the same thing, I have never heard of Symax Duotab hydrocodone,I have heard of Symax Duotab Hyoscyamine. Hydrocodone is an opioid pain killer, Hyoscyamine is to treat GI issues? My son has said the same, he also said they do make an extended release hydrocodone but it is called Hysingla ER. Anyway my son said hydrocodone is addictive, long term use could cause organ damage, along with withdrawal symptoms, and don’t use with breathing problems. Also causes Hard stools (constipation). Your doctors know best, it just wasn’t for me. Glad you found something that works for you.

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@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I’m so relieved (as morbid as that is to say) to see that I really am NOT alone…. I’ll preface by saying there is a very real possibility I may rely heavily on everyone’s experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What’s your insight on what I’m looking at long term?? I’ve never had anything chronically, so I’m lost on what to expect. My PCP is very literally clueless. The “GI guru” has, in effect, blown me off – I called seeking helping when the Mobic failed to work. All I’ve gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn’t shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you’ve got. Books. Articles. Suggestions on diet modifications. Meds you’ve tried that were successful. Anyone tried anything holistically? I am desperately wanting to “get in front of the ball” as best I can – the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn’t have time for debilitating…..

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

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My doctor put me on Mobic last year (meloxicam). It took about 6 weeks before it gave me some relief. I can now take it every other day most of the time. It has really been a tremendous help to keep the inflammation down. I make sure I take it with a meal because I bleed easily from by stomach. It also helps with the pain. I still get swollen and uncomfortable during a flare, but it helps bring things back down in a reasonable amount of time. This is such a frustrating disease! This is a great group of people that completely understand what you’re going through! Managing my diet and taking my meloxicam regularly has really helped improve my quality of life.

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Denia, Good to know, want to check with GI doctor about this drug because I can’t steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Hi @carbxbe8206, Sorry, you are right. I am thinking of hyoscyamine. I blame fuzzy brain this week. 🙂 Best.

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@carbxbe8206

Denia, Good to know, want to check with GI doctor about this drug because I can’t steroids. Do you have GERD, acid reflex issues, was wondering if this med with make these issues worse? Thanks for the information.

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I don’t have too many issues with reflux or GERD. I had a big dose of steroid for about 10 days before I started the Mobic. Then, I only took the Mobic. I was about to give up on it when it started reducing the inflammation. I had a lot of inflammation and I think it just took time to get things calmed down. Plus, I will still trying to figure out my diet, so that probably had something to do with the length of time it took to give me some relief.

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@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I’m so relieved (as morbid as that is to say) to see that I really am NOT alone…. I’ll preface by saying there is a very real possibility I may rely heavily on everyone’s experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What’s your insight on what I’m looking at long term?? I’ve never had anything chronically, so I’m lost on what to expect. My PCP is very literally clueless. The “GI guru” has, in effect, blown me off – I called seeking helping when the Mobic failed to work. All I’ve gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn’t shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you’ve got. Books. Articles. Suggestions on diet modifications. Meds you’ve tried that were successful. Anyone tried anything holistically? I am desperately wanting to “get in front of the ball” as best I can – the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn’t have time for debilitating…..

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

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@denia, thank you for the insight. Mobic is just hit and miss with me. I hate not being able to take steroids. It’s VERY frustrating. I’m so beyond grateful to have found this group. I’m grateful to have people to lean on and help each other through this!

Liked by denia, Poppy73

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@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I’m so relieved (as morbid as that is to say) to see that I really am NOT alone…. I’ll preface by saying there is a very real possibility I may rely heavily on everyone’s experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What’s your insight on what I’m looking at long term?? I’ve never had anything chronically, so I’m lost on what to expect. My PCP is very literally clueless. The “GI guru” has, in effect, blown me off – I called seeking helping when the Mobic failed to work. All I’ve gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn’t shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you’ve got. Books. Articles. Suggestions on diet modifications. Meds you’ve tried that were successful. Anyone tried anything holistically? I am desperately wanting to “get in front of the ball” as best I can – the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn’t have time for debilitating…..

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

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@tarad , The ER doctor looking at my CT images looked puzzled,said that’s odd, then asked”do you have cancer”?

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So from everything I been reading on this group, I decided I need to be more proactive. I was diagnosed through a CT scan in the ER. At the time I was told I had an inflammation probably diverticulitis, although I was not having stomach pain only flank and back pain. The ER doctor stated it was probably because it ran close to my kidney area. He put me on Flagyl and another antibiotic for a slight UTI and referred me to a general surgeon. The Flagyl reacted badly on me. Severe acid reflux and just made me feel terrible. Ended up back in the ER to get Flagyl changed (my pcp was out of town and my appointment for surgeon was 3 days away). This ER doctor said my CT scan was normal and just to stop the Flagyl, which I gladly did. Decided to keep my appointment with the surgeon and got a copy of my CT report to take with me. (I always try to get copies of to take to the doctor because too many times it was never received) To my surprise, my CT was not normal, it showed mild mesenteric panniculitis. So far not one doctor has mentioned that my CT showed this. The surgeon sent me for an Upper GI and an esophageal manometry study and now wants me to go for a small bowel series. So after reading most of your post, still working my way through them. I have made an appointment with a gastroenterologist near me who treats MP. Can you please help me in determining what questions I should me asking when I go for my appointment? Fortunately, my case is mild and seem to only experience bloating with a feeling like something is there by my epigastric area. I also experience occasional mild nausea. I have had this for years and have had endoscopies which showed irritation. I have been on Nexium for this. I had my gall bladder taken out laparoscopy in 2015. I am beginning to think that all these symptoms are related to the MP. My one concern is that the treatment is steroids and I can not take steroids without it causing me to have avascular necrosis. (I already have it in 5 joints) I do end up having to take it if my asthma is bad, which I try to keep in control unless I get an upper respiratory illness and my doctor works with me on keeping me on the lowest dose possible and for the shortest time possible. Other then that I avoid taking steroids under the advice of my AVN doctors. I see some people take non-steroids inflammatories like Meloxicam. I was wondering what other types of medications anyone has taken and any side effects they had with them. I know knowledge is important when dealing with a rare disease, any disease really, so I am trying to learn as much as I can.

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Hi @chensley638,

I hope your appointment (endoscopy) went well? We would love to hear back from you.

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@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I’m so relieved (as morbid as that is to say) to see that I really am NOT alone…. I’ll preface by saying there is a very real possibility I may rely heavily on everyone’s experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What’s your insight on what I’m looking at long term?? I’ve never had anything chronically, so I’m lost on what to expect. My PCP is very literally clueless. The “GI guru” has, in effect, blown me off – I called seeking helping when the Mobic failed to work. All I’ve gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn’t shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you’ve got. Books. Articles. Suggestions on diet modifications. Meds you’ve tried that were successful. Anyone tried anything holistically? I am desperately wanting to “get in front of the ball” as best I can – the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn’t have time for debilitating…..

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

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Hi @tarad,

I’d like to add my welcome, and thank you for reaching out to Mayo Clinic Connect. We’re so glad you’ve joined us.

Here’s some information about Mayo Clinic’s approach with regard to mesenteric panniculitis (MP) or sclerosing mesentiritis as it is sometimes referred to:
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161
You may also wish to view this Mayo Clinic patient story:
Research forges path to effective treatment for sclerosing mesenteries https://sharing.mayoclinic.org/2012/12/13/research-forges-path-to-effective-treatment-for-sclerosing-mesenteritis/

Tara, you are not alone in experiencing the frustration of being “dismissed” by your doctors; if there is one thing I’ve learned from the wonderful members of Mayo Clinic Connect is that you should never give up until you find the right physician who can help you in the best possible way. If you are interested in getting a second opinion from Mayo Clinic, here is the link to do so: http://mayocl.in/1mtmR63

I sincerely hope @dennisl27 @snoopdog @bertbiz @danielcamp @billymac65 @danrofohio @mardellepoff @billindc @viva @jimmymac @miker46 @sue62 @eddieg @gmeg and others will return to share their insights as well.

@tarad I realize that this must be so stressful, and that you’re doing all that you can; I would encourage you to read through past messages in this group, feel free to tag members, and remember that the Connect community is here, listening.

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@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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What is the treatment?

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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what is the deferent between Mesenteric Panniculitis or Schlerosing Mesentertis?

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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Hello @mostafaamin, welcome to Mayo Connect. I don’t have access to links to send you and you may have already been sent that information by other good people on the Connect. The disease typically begins as inflammation within the Mesentery (Mesenteritis Panniculitis) then it may begin to thicken and harden becoming what is referred to as “Schlerosing Mesenteritis”. The third stage which may or may not occur is “Retracting Mesenteritis”
Have you been diagnosed with this illness?

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@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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@mostafaamin, hello again. There is information available but again I don’t have the links on my device. Generally an anti inflammitory and pain medication is the first response. Depending on the CT scan results and the symptoms experienced, surgical intervention may be required but only if there is obstruction or other complications. The latter being the extreme.

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@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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Good afternoon everyone I have been dealing with my diagnosis for well over a year now. My symptoms have included the stomach/abdomen issues (as everyone else has had. As well all rapidly increasing weakness in all 4 limbs, muscle atrophy, loss of appetite, tremendous fatigue, loss of 85lbs in 5 months, GERD and stomach gurgling (among many others). And am now in a wheelchair and bedridden. To make a long story short I have seen every specialist that my PCP has suggested but no one can seem to completely understand my disease, what the diagnosis is, or much less stop this rapid progression. Today I was not accepted at the Mayo Clinic for an appointment (much less an examination) and wondered if anyone else had any advice or a similar situation?Any advice would be greatly appreciated and we are willing to go anywhere we have to for medical attention to these symptoms and hopefully a treatment plan. Thank youdennisl27 

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