Mesenteric Panniculitis or Sclerosing Mesenteritis

Hello everyone. Is the facebook group still active? I have messaged Lisa via her link to her FB profile and am awaiting a reply. I understand that she is probably a busy lady, and not on Facebook all the time.
Do any of you have back pain, and how do you manage it? I'm just taking panadol osteo, and sometimes panadeine forte. As I'm only newly diagnosed and still have to wait 2 weeks to see a specialist, I'm not sure how best to manage. Thank you😊

Yes, when my MP was active I had horrible back pain directly related to MP.

Write a one page letter to Dr Pardi or Dr Alexander at Mayo Clinic Gastro Dept in Rochester, MN. Explain your symptoms and pain level, and state what tests you have had and what doctors you have seen and results or non results. Ask for an appointment. You will be contacted with an appointment followed by a schedule for bloodwork, scans, consults. Expect to spend 10 days. They are very thorough. I consented to an exploratory and was diagnosed with Carcinoid Cancer. My MP was a symptom of that underlying rare cancer which local surgeons and specialists were never experienced to know what to look for. Book a flight on Delta Mayo. Stay at hotel right across from Mayo bldg. Mayo will send you a list of places to stay. Good luck.

Well I am pleased to say that I heard from Lisa and she said there are about 20 in the group from Australia!!! Hopefully I will be able to learn a lot more about this disease. I have been feeling rather off for a couple of days with a lot of pain in the back and the sides. Had a concerned friend ask what was wrong with me today. I haven't told anyone. She is very astute. I experienced what I would call flu-like symptoms yesterday, and major headache today, though not what I would call a migraine. Waiting for my first app't with the GI doctor has felt like an eternity, and I still have a week to wait. I will be writing out my concerns and questions for him. I applied for a job just before this diagnosis and actually have an interview this Friday. Great news but praying I am going to have a good day so I appear bright and enthusiastic. It is casual but I've wanted a job for the longest time.
Blessings to everyone on this page <3

This site has been fantastic support for me so I want to add my story.
I was diagnosed with Mesenteric Paniculitus and slight lymph node swelling 2 years ago by CT scan after 6 months of tortuous nausea, burping, gas, abdominal pain/bulging and heart skipping beats when lying down. Also bouts of curl up and die general fatigue/sickness. Couldn’t walk 50 metres. My body felt like I had the flue without the sore throat and headache. No diahorea.
After admitting myself to ER (had to put pain level up near 10 to get action). They did tests but they recommended go to GP to get the CT as hospital hasn’t CT.
In this 6 months before diagnosis, the gastro specialist and doctor did the usual gastroscopy, colonoscopy, scanning abdomen with ultrasound and such - I was diagnosed with heliobacter from gastroscopy and got that eradicated by antibiotics. My heartburn gone – good.
After diagnosis of MP the gastro specialist and doctor didn t know much as there is no protocol to follow for MP. They never see this condition much. Its only by begging for something that the specialist prescribed prednisone. Started 25mg and taper over 10 day. Nausea and fatigue and general malaise lifted. But relapse after 2 weeks off prednisone.
Had to up to 37 mg and taper over 4 weeks and would get 6-8 weeks of normal life until relapse. This regime continued for 2 years. Tried colchicine and meloxicam to wean off prednisone (self prescribed – its in the literature - doctors knew nothing- don’t they read?) But these meds only helped relieve symptoms somewhat. Subsequent CT scan 6 months after initial scan showed MP going and lymp nodes ok. But symptoms still the same. Symptoms manageable - sort of - I noticed that I had to be careful of bending or squeezing abdomen ( eg weeding garden or playing guitar) as this brought on bad symptoms again for 2 weeks or so. Also no late night eating as my stomach wouldn’t empty and got awful pain and bloating. I think some foods set symptoms off also.
What caused this MP? No indications from doctors tests etc but my history leading up to this was that one month prior to first symptoms I had a stroke. Research indicates gut bacteria escape gut after stroke and can cause problems with immune system(nodes in abdomen?). Also previous one month prior I had a very bad case of gastro for 10 days from overseas living in Vietnam. I know I ate something bad haha. Also one month prior to stroke I had a tetanus shot. And the evening before stroke I had the 3 in one hooping cough vaccine (tetanus, diphtheria, hooping cough) Needed the vaccine to visit my premi granddaughter- Were these previous events coincidence or a confluence of events that set it off ? Doctors never gave an opinion on vaccines or these prior events as a cause of MP.
This is the crazy thing. Good news. Just recently I had shingles (doctors say it was from being on prednisone) The doctor initially recommended endep for the pain of shingles but I refused as it makes me incredibly drowsy. He prescribed pregabalin as the next in line med in the protocol. Well it didn’t decrease any pain of shingles but pregabalin took the pain and nausea of MP away and has allowed me to wean off prednisone. I have been off it for 6 weeks and soreness in abdomen virtually gone and I usually have intense nausea 1 hour after eating but that’s all gone. Sort of feel normal.

I hope this continues for me and I hope someone gets something from my story.

Thanks for sharing. All of our cases may be a little different than one another, but there are always similarities. Funny about the shingles. I've been getting the vaccine to prevent getting shingles due to prolonged dosage of prednisone (since August 2017). I am also having a very difficult time weaning off prednisone, relapsing time and again. My new regimen is to stay on 5 mg. daily until I have reached full remission for 4-6 weeks. After that, we will try to wean down off the prednisone. It really is disheartening to be continually relapsing. Maybe some people just have a harder time weaning off prednisone than others?

Your story is enlightening as to results after each medical event. I pray you remain well. My MP story led me to Mayo Clinic where an exploratory revealed Stage III B Carcinoid (neuroendocrine) small bowel cancer which was surgically removed. After many years dealing with local doctors unfamiliar with MP, the doctors at Mayo Clinic in Rochester, MN knew what to look for. In my case, MP was a symptom of an underlying disease. I urge anyone with painful chronic MP to pursue a Mayo Clinic consult.

Yes thats what I was also trying to do: to get to a lowest dose prednisone as possible to modulate the immune system response. At first I thought 12mg then I tried 5mg but always 2-4 weeks later relapse.
My take on MP is that it is an immune response to something, and then should naturally go away but becomes autoimmune as the immune system/mesentery or underlying condition doesnt settle or be removed. Therefore prednisone provides immune modulatory therapy. Pregabalin also has shown an immune modulatory effect - its in the literature. I would suggest discussing using pregabalin with your doctor maybe. Pregabalin is also used for anxiety and seems to have none or little side effects as opposed to prednisone.

I would have loved to visit Mayo but I am in Australia hihi

Most informative site:
rarediseases.org/rare-diseases/mesenteric-panniculitis/
From my experience in relieving symptoms temporarily I used an elec heat pad on my abdomen. Cold pack also relieved symptoms but not as convenient as heat pad.