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

@peterhamilton

Hi all 44 old male living in Weymouth Dorset united kindgom was fairly fit last year running upto 25 miles a week in the gym and all was going fairly well, feb/march this year had debilitating abdominal pains lack of energy and not wantig food feeling sick was admited to hospital for a week got out had loads of blood tests scans follow ups nothing found local gp’s basically didn’t know what to do and dismissed me which made me feel awful, the pain lasted for 6 weeks or so and then came back abbout 17 weeks ago, worse this time though to the point i was hospitalised for 13 days pcb pain fentinol relief, oramorph, tramadol, oycodone loads of pain killers and laxatives laparoscopy perfomed xrays bloods and then a CT which showed wait for it Mesenteric Panniculitis with a secondary diagnosis of diverticulitis left hospital after 13 days on steriods for 8 weeks reducing 5mg per week 8 tramadol a day 8 paracetamol oxycodone 20g twice a day and liquid to top up every 4 hours as well as laxatives, I havent eaten a proper meal in almost 5 months the smell of food makes me want to vomit and am sick if i do eat also get severe pain in the stomach and bowels have been on fortijuice and fortisip liquid drinks for calories and intake as well as yoghurts and energy drinks, have been off of work for 8 weeks and not getting paid, not sure how long the pain is gonna last for, my gastro specialist didnt see me once when i was in hospital.
not sure where to go from here really have been told it’s not cureable and could come and go as it likes,as well as IBS and reflux which i have had for about 12 years i have had testicular cancer 7 years ago and a bladder and prostrate op which has left me partially incontinent and now more so as i have a catheter in as i couldn’t pee when i was in so much pain, not sure when the catheter is due to come out. bowels not good because of the liquid diet and have frequent accidents and this week cotracted a urine infection on top of everything else.

just wanted to say hi to everyone and if anyone has any ideas or comments or questions please feel free to contact me

follow up apointment booked for the 22nd december gastro doctor but any help in the meantime would be very much appreciated as i could do with some answers so i can try and get this under control

kind regards

peter

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Welcome to Connect @peterhamilton. I, too, hope that the members participating on this thread can help to get your symptoms under control. @pkrkra, @justjen822 @missyb57 and @lisas444, how are doing? Maybe you have some advice or tips for Peter.

Peter, having to wait until Dec 22 to see a specialists sure sounds like a long wait. What medications and management tips have you been given in the meantime?

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Hi Colleen, Many thanks for your kind words, Nope i was discharged from hospital almost 5 weeks ago with prednisolone starting at 40mg and am now on 15mg a day in 3 weeks time will be down to zero, oxycodone 20mg twice a day 8 tramadol and 8 paracetamol a day plus oxycodone liquid when i get bad pain, on the liquid diet still fortijuice and fortisip and yoghurts and energy drink, still feeling sick all the time with occassional vomiting and still getting pain in the bowels and stomach. havent seen a gastro or nutritionist so no hope there basically discharged and get on with it i guess, I am seeing a GP on friday to let him know im still in pain and not eating as well as fatigued all the time , I was hoping to maybe get some guidence from people on here as to what they have been told and advice for health and management of the condition, also has anyody had any luck claiming benefits from the state as i am unable to work at recent and have lost about $5000 over the last few months not getting paid for being off work which doesnt help the whole situation and adds to the stress .

many thanks take care bye for now Peter

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@camih00

Hi Bill. While you wait for some conversation to build here, I thought I’d share a Mayo Clinic patient story that might be of interest to you: http://www.mayoclinic.org/patientstories/story-441.html

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Great story on Carol. We have a private group as well with 177 members in it all with SM / MP internationally so all your medical, symptoms, meds, etc. aren’t public, etc. and also pairing people up with other’s in their states and/or countries for help with finding docs/facilities to treat SM or MP. Mayo and Dr. Eli at Northshore see the most with SM/MP. 🙂 My name is Lisa Schwart in Tulsa OK on FB if you want to contact me for any more info and adding you over to it! 🙂 Thx! This is a great page as well! 🙂 Lisa

Liked by Weedy, ladycat

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@peterhamilton

Hi Colleen, Many thanks for your kind words, Nope i was discharged from hospital almost 5 weeks ago with prednisolone starting at 40mg and am now on 15mg a day in 3 weeks time will be down to zero, oxycodone 20mg twice a day 8 tramadol and 8 paracetamol a day plus oxycodone liquid when i get bad pain, on the liquid diet still fortijuice and fortisip and yoghurts and energy drink, still feeling sick all the time with occassional vomiting and still getting pain in the bowels and stomach. havent seen a gastro or nutritionist so no hope there basically discharged and get on with it i guess, I am seeing a GP on friday to let him know im still in pain and not eating as well as fatigued all the time , I was hoping to maybe get some guidence from people on here as to what they have been told and advice for health and management of the condition, also has anyody had any luck claiming benefits from the state as i am unable to work at recent and have lost about $5000 over the last few months not getting paid for being off work which doesnt help the whole situation and adds to the stress .

many thanks take care bye for now Peter

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Hi Peter, really sorry that you’ve had such long bouts of managing on your own between seeing specialists. The financial burden of illness is also a great question to ask for other people experience finding financial help.

@lisa444 @maryscribe can you offer Peter some guidance here on this thread? It will not only help him but also others reading this thread. Thanks

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@lisa444 congratulations on your group and thank you for helping others. Sorry to hear your child has sclerosing mesenteritis too. How old is s/he?

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Thanks Colleen – My daughter was diagnosed with it when she was 14 and she’s now 22. Been a long hard rode with it. Peter, in our group, my daughter has SSI with it on TEFRA when she was still a kid and now with SSI as an adult. We have 2 others in our group of 179 members (I’ve added 14 new people in the past week) who are at Judge’ decision with it, and one other guy in there was awarded with it when he was just 30. He was the 1st we’re aware of – I’m not sure with you just being diagnosed with it – there are a handful of medications which doc’s can use depending on your conversations with them and what your symptoms are. Do you have short term or long term disability with your employer? if so, you may want to apply for it asap. Some are diagnosed with SM or MP and do a short course of treatment and then better. Others will have occasional flare up; others, feel something every day, and are symptomatic every day with it – some are hospitalized frequently with it with bad flare ups, some have had surgeries to remove any masses or if having a bowel obstruction, and some in our group, it’s affected some of the other organs such as the mesenteric artery (2), ureters (a handful or a few more), bladder (a few), kidney (2 in group on Kidney) there are a couple in our group that are tube fed, a couple of others are intravenously fed, a few have ostomies now, and others (3 in our group this past year) have passed with it. Most are in the earlier category, and then there’s the others with pretty aggressive with it.

There are different variants of the disease. 🙂 Some of the meds used to treat SM/MP are as follows: Tamoxifen, Azathioprine, Methotrexate, Colchicine, Prednisone, and in a small handful of cases, Thalidomide, and Remicade has been used in a couple of cases — all with variances of responding to different meds. What has worked for some, doesn’t always work for the others.

Also, you might want to ask your doctors to do an igg4 blood test on you since you are newly diagnosed with it.

I did send you a private message on here 🙂

Lisa

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Thank You, your support is appreciated.

Von

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@vdouglas

Thank You, your support is appreciated.

Von

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Hi Von (@vdouglas),
How are you doing these days?

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@vdouglas

Thank You, your support is appreciated.

Von

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Hi Colleen

Doing pretty darn good, meaning no curled onto a ball on the floor, flares. I am being treated for MP related back/flank pain. Treated for pain symptoms only. Taking 50 mg Tramadol with Tylenol before bed. So far pain is tolerable.

I have felt the flare start but it goes away. Had my Dr. do a CRP blood test to get a baseline and see if it showed anything major, It came back Normal. I consider this good news.

I am going to take a very conservative approach. My Doctor is very willing to work with me. Trying to keep tight control of Diabetes (blood sugar). Will eventually have another CT to see if there is a change.

Giving thanks daily for being able to tolerate my issues.

Thanks again for all of your kind support.
Von

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So glad your not curled in a ball. I think I need to. I have complained of
flank pain on left for a long time. I am real short waisted and it is hard
to tell. Just a couple of days ago I started getting bad pain on the right
side. I have a mechanical back so I thought that was what it was but it
isn’t like the back pain I have had in the past. I am not able to take most
medicines. If it has a side effect I get it so I just try to ignore and go
my way but this time it is different hard to ignore. I walk with my husband
4 1/2 miles three times a week and did it yesterday but all of a sudden
this pain grabs me. I am trying to decide if it is my back or my kidney on
that side that has a small benign cyst. Any suggestions? Thanks and Happy
New Year Everyone.

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@mommasaid

So glad your not curled in a ball. I think I need to. I have complained of
flank pain on left for a long time. I am real short waisted and it is hard
to tell. Just a couple of days ago I started getting bad pain on the right
side. I have a mechanical back so I thought that was what it was but it
isn’t like the back pain I have had in the past. I am not able to take most
medicines. If it has a side effect I get it so I just try to ignore and go
my way but this time it is different hard to ignore. I walk with my husband
4 1/2 miles three times a week and did it yesterday but all of a sudden
this pain grabs me. I am trying to decide if it is my back or my kidney on
that side that has a small benign cyst. Any suggestions? Thanks and Happy
New Year Everyone.

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Hi (mommasaid)
Ouch….. That pain you are describing sounds very familiar. I hope you are feeling better by now but if you are in severe pain I would not hesitate to go to the ER. 
My story is similar. I thought I had another kidney stone. To make a very long story short, that same pain landed me in the ER and led to my 2 CT and doctor  diagnosis. I am very lucky as my pain passed after a few days. I was given something at the ER that had me drooling into my lap and feeling no pain at all (what a  relief). After that they prescribed Hydrocodone and Naproxen which barely took the edge off. I think it was about 3 sleepless nights then it started to subside. Never lost appetite and didn’t have nausea. No one could give me answers beyond Mesenteric Panniculitis (Ha! even spell check doesn’t recognize it).
I can’t take a lot of the medications also. I am T2 diabetic and have arrhythmia issues associated with Mitral Valve Prolapse. You attitude is a little like mine, just plow through it, keep going the best you can. Sometimes though you get hit so hard it knocks you down and you’ve got to get some help.
I am not knowledgeable enough to offer you a recommendation but maybe some of the other people on the board can.
Wish you the best, which can always be just a day away.Von 

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HI All,
My name is Gehres. And I am a newbie. I was diagnosed with Mesenteric panniculitis this past Friday from a CT SCAN. I have been suffering from this since 2000. Urologist diagnosed enlarged prostate then Oh no Over active bladder, Opps no its Interstitial cystitis etc. My GP prescribed to me what is a questionable drug, as from what I can find on the net no other patients are being prescribed Hydroxychloroquine Sulfate a drug to treat malaria? Is this a common treatment? I tend to really question this treatment since the Steroid he put me on before the CT SCAN basically turned me in to a mess that could not get out of bed for 4 days. Severe depression aggression etc from the drug Dexamethasone. I am also on Oxycondone for the pain. I thank you all in advance for any advice or help.

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@Weedy

HI All,
My name is Gehres. And I am a newbie. I was diagnosed with Mesenteric panniculitis this past Friday from a CT SCAN. I have been suffering from this since 2000. Urologist diagnosed enlarged prostate then Oh no Over active bladder, Opps no its Interstitial cystitis etc. My GP prescribed to me what is a questionable drug, as from what I can find on the net no other patients are being prescribed Hydroxychloroquine Sulfate a drug to treat malaria? Is this a common treatment? I tend to really question this treatment since the Steroid he put me on before the CT SCAN basically turned me in to a mess that could not get out of bed for 4 days. Severe depression aggression etc from the drug Dexamethasone. I am also on Oxycondone for the pain. I thank you all in advance for any advice or help.

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Hi Gehres

Welcome to this site.
You may be a newby to this site but not to the illness. Sounds like quite a struggle you've had to deal with. There is a lot of good information on this site. A number of the members of this message board have been treated by some of the best and most experienced Doctors in the field.

If you don't mind me asking, how are you doing right now? Are you still taking pain Meds and that unusual anti-inflammatory?

Von

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Hi Gehres – and welcome that you found this page. We have 196 people in a private group and I just sent you an email to your email box on this page re: the info to find me and have me add you over. We have ages from 2 years of age through 80 in there from all over the US and several other countries represented as well. Hope to hear from you soon! Sorry you’ve been diagnosed with this crappy disease and hoping that you can get in under control soon! 🙂 My kiddo was 14 when she was diagnosed and has, unfortunately, many bowel obstructions from this SM disease and multiple abdominal surgeries as a result of this disease, etc. We’ve now been recently to Cleveland Clinic for evaluation for a bowel transplant and returning back up there in a few weeks for another surgery. We live in Tulsa, Oklahoma. Hers does NOT have an auto immune component to it and hoping that transplanting the bowel and mesentery that this will be the end to it for her (she’s had multiple resections done). Her’s is the extreme though – we have that group with ranging from mild to severe symptoms of people and have lost 3 in our group with it in the past year with SM that were severe as well. Most are not thankfully! 🙂 Hope to hear from you soon!

Lisa

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@Weedy

HI All,
My name is Gehres. And I am a newbie. I was diagnosed with Mesenteric panniculitis this past Friday from a CT SCAN. I have been suffering from this since 2000. Urologist diagnosed enlarged prostate then Oh no Over active bladder, Opps no its Interstitial cystitis etc. My GP prescribed to me what is a questionable drug, as from what I can find on the net no other patients are being prescribed Hydroxychloroquine Sulfate a drug to treat malaria? Is this a common treatment? I tend to really question this treatment since the Steroid he put me on before the CT SCAN basically turned me in to a mess that could not get out of bed for 4 days. Severe depression aggression etc from the drug Dexamethasone. I am also on Oxycondone for the pain. I thank you all in advance for any advice or help.

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Hi Von,

Thanks for the reply. It was very much welcomed.

Besides this malady I suffer from A-FIB and have gone thru a Catheter
Ablation last June that was not successful but am being scheduled for a
repeat procedure.

The Hydroxychloroquine Sulfate sent me into intense A-FIB and to the
hospital twice since Friday, So I have started to take Flecainide to stop
the A-FIb. I had not taken it since and only had 3 episodes of AFIB within 5
months until I took Hydroxychloroquine Sulfate.

I have stopped it now.

I do take as little as possible of the Oxycondone. Maybe one or two tabs of
10mg per day if needed. The pain is always there but most of the time not
too intense. Tylenol does not do anything at all.

Do you think it is worth getting an MRI to see what’s really going on?

Thanks again

Cheers,

Gehres Weed

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