We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven’t ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!
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I have IHCP also, but not as advanced as yours. I'm not a doctor. I have done a fair amount of online research to educate myself some. The common treatment is to start with steroids and supplement with immunosuppressive agents. However a new treatment seems to possibly be better. You might want to discuss Rituximab with your doctor. Here is a link to an article about it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392457/
I did discuss rituximsb with my doctor. I live in England so essentially it's a cost issue.Although to be fair to him,he did say if this treatment doesn't work that rituximab would be the next road to go down .- I would of preferred to skip the mycophenolate, but you never know it may work .
Hope all is well with you at the moment.Have you had treatment or just watching and waiting?
waiting and watching. I had a head mri to ck my hearing Feb, 2017 and it was discovered. Had a followup mri 5 mo later and no change. Have appt in July w another mri. I do have some mild symptoms. We will see.
Following my above post, does anyone know of any hospitals or practices that have experience with pachymeningitis. I live in south florida, but will travel.
Hi @tracyb and @megmor and cc to @cgrammie2. I was diagnosed November 2016 after a mini craniotomy at UCSF in San Francisco CA. I was being treated for a meningioma in the right cavernous sinus area since June 2009 diagnosed after getting terrible shooting pains and sudden double vision (the meningioma was pressing on the Trigeminal nerve and eye movement nerve). Had gamma knife treatment twice in 5 years. Then the numbness on the right side of my face occurred with dizziness and shooting electric type pain mostly in my eyes. The craniotomy biopsy result was inflammation mostly made up of B cells all around my dura. Was on prednisone 60 mg for about 6-8 weeks taper down. Currently treated for the second time with rituximab Infusions and doing okay. Please let me know how I can help and other questions you may have.
Hope rituximab helps I will be interested to know ..your symptoms are very similar to mine and I had been diagnosed with trigeminal neuralgia which we now know otherwise. I had been going backwards and forwards to the doctors for about 4 years I thought I was going mad . … I'm currently on 40mg prednisolone daily started with 16mg of dexamethasone although I'm still not symptom free .I'm struggling with fatigue at the moment and a feeling of weakness.I have no idea if this is the steroids the immunosupresent or the pachymenigitis??? ..I'm still at work but I'm finding it tough at the moment hopefully I'll adjust to the drugs. My consultant wants to keep me at 40mg of prednisolone for another 3 months then taper and let the immunosupresenta take over .Cant wait to stop the steroids I have a moon face and I'm starving hungry all the time !!
So far rituximab is working. My next MRI is tomorrow. The steroids helped while I was on it. I couldn't sleep, always hungry, tired, weak, etc. It drove me crazy plus I am diabetic so my doctor didn't want me on steroids too long. However, as soon as I stopped the steroids the symptoms came right back. That's when I started Rituximab instead.
Totally understand going back and forth to the doctors and they kept referring me to all different doctors. I was in so much pain and thought the doctors thought I was probably going mad! I even ended up in the hospital for chest pains. I had a bad tooth infection and the extraction was delayed due to my chest pains. I also have to mention that with my luck I started to take B12 vitamins over that counter since I was so tired all the time. Then those vitamins were recalled after I was taking it for about 6 weeks due to salmonella or staphylococcus contamination. I was wondering why I was losing weight without tyring and had terrible stomach cramps. Then a year later I was diagnosed with pachymeningitis. Could be related but not sure.
I'll keep you posted on the MRI results and if my neurologist will recommend another round of rituximab probably by end of April. My last infusions were in October 2017. Feel free to send me a private message if you want to get in touch with me.
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Thank you Colleen! I knew about this but completely forgot. Thanks again. 🙂
No problem, JRT. How did the MRI go today?