pachymeningitis

Posted by cgrammie2 @cgrammie2, Aug 11, 2012

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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@tracyb

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.

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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.

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@tracyb

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.

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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 !!

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@tracyb

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.

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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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@tracyb

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.

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Hi @jrt26 Please note that I removed your personal email address from your message above. We recommend using the private message function to share personal contact information. We don’t want you to get unwanted spam from posting your email on a public forum like Connect.

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@tracyb

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.

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Thank you Colleen! I knew about this but completely forgot. Thanks again. 🙂

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@tracyb

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.

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No problem, JRT. How did the MRI go today?

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@tracyb

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.

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hi ..just wondering how you are getting on .Hoping you got some positive news .
Meg

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Hi @gigirambo and welcome to Connect. Indeed, this forum is still open. Have you been diagnosed with pachymeningitis?

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@colleenyoung

Hi @gigirambo and welcome to Connect. Indeed, this forum is still open. Have you been diagnosed with pachymeningitis?

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Yes, Was diagnosed first of April. Had been suffering with headaches that became more and more severe. My internist prescribed a CT scan and immediately sent me to the ER. A lumbar puncture was done and I was admitted into the hospital for more testing. Had MRIs – with & without contrast- and was started on antiviral meds as they weren't sure what my diagnosis might be. After release from the hospital, I was prescribed steroids for approximately 2 weeks and referred to Emory Hospital in Atlanta, Ga for further testing. Met with a Neurologist there that wanted all MRIs done once again….and concurs with the original diagnosis of Pachymeningitis.
Headaches have lessened in severity and manageable with OTC meds ( but can't lean over as pain becomes severe) I am to return to Emory in 3 months to have MRIs repeated. My question is what should I be doing to lessen the chance of this getting worse again and if diet, supplements, etc might help in treatment? I understand that there is not much info on this condition, but feeling like I'm on a roller coaster. Dr.s have told me to take it easy and rest over the next several months and avoid stress as much as possible. Trying !

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@gigirambo

Yes, Was diagnosed first of April. Had been suffering with headaches that became more and more severe. My internist prescribed a CT scan and immediately sent me to the ER. A lumbar puncture was done and I was admitted into the hospital for more testing. Had MRIs – with & without contrast- and was started on antiviral meds as they weren't sure what my diagnosis might be. After release from the hospital, I was prescribed steroids for approximately 2 weeks and referred to Emory Hospital in Atlanta, Ga for further testing. Met with a Neurologist there that wanted all MRIs done once again….and concurs with the original diagnosis of Pachymeningitis.
Headaches have lessened in severity and manageable with OTC meds ( but can't lean over as pain becomes severe) I am to return to Emory in 3 months to have MRIs repeated. My question is what should I be doing to lessen the chance of this getting worse again and if diet, supplements, etc might help in treatment? I understand that there is not much info on this condition, but feeling like I'm on a roller coaster. Dr.s have told me to take it easy and rest over the next several months and avoid stress as much as possible. Trying !

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@gigirambo how are you feeling? Are your B cells very high? For me the steroids helped but the rituximab Infusions x4 has really reduced the inflammation in the dura. So far I’m doing okay and next MRI will be in January. My neurologist says I may not need another rituximab infusion depending on the results and how I’m feeling. I still get occasional shooting pains in my face and eye area but last a few seconds. My eyes are very dry so I use drops a few times per day. So far doing well. Let me know if you have any other specific questions.

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So sorry for u both. My hubby got diagnosed with pachymeningitis 2 weeks ago. Ruled out cancer & autoimmune probs. Am going back to specialists soon to find out if addl blood tests showed the cause. On 20mg/day Prednisone for now. Will get back with u. Thx!

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