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!!!

Interested in more discussions like this? Go to the Brain & Nervous System group.

@mern

I am being worked up for pachymeningitis. It was diagnosed by MRI while looking for the cause of hearing loss. It is complicated by also having Rheumtoid arthritis. I have constant pressure and headache. My neurologist is aggressively looking for the cause. He has had one other patient who unlike me was asymptomatic. I am awaiting results of CTs and MRIs. My next step is to consult a rheumatologist at a major university teaching/research hospital. I have no recommendations at yet. I would like to stay in contact with you. This is a lonely journey

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yes it is lonely and they know so little about this disease. I WAS I could share my phone number and name with you

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@jrt26

Hello, I’m new to this group. I was diagnosed with Pachymeningitis in November 2016 via a mini craniotomy to biopsy dural inflammation first thought to be meningioma in the cavernous sinus area. It was treated with gamma knife twice in 5 years. After the second gamma knife my symptoms of headaches/migraines, dizziness, shooting pain in my eyes, ears and face became worse. 2 years later the MRI showed inflammation of the dura (right and left). I was placed on prednisone taper down starting at 60mg daily. Symptoms got a little better but came right back after I finished the prednisone. So now I just did my first rituximab Infusion and another one in 14 days while on 10mg prednisone. Would like to know everyone else’s experience and treatment. Thank you

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Hi @jrt26,
My apologies for the delayed welcome. I’m glad that you found this group. Please meet @cgrammie2 and @shosey. Grammie and Shosey what treatments have you had?

JRT, we look forward to getting to know more about and learning about the rituximab infusion treatment.

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@jrt26

Hello, I’m new to this group. I was diagnosed with Pachymeningitis in November 2016 via a mini craniotomy to biopsy dural inflammation first thought to be meningioma in the cavernous sinus area. It was treated with gamma knife twice in 5 years. After the second gamma knife my symptoms of headaches/migraines, dizziness, shooting pain in my eyes, ears and face became worse. 2 years later the MRI showed inflammation of the dura (right and left). I was placed on prednisone taper down starting at 60mg daily. Symptoms got a little better but came right back after I finished the prednisone. So now I just did my first rituximab Infusion and another one in 14 days while on 10mg prednisone. Would like to know everyone else’s experience and treatment. Thank you

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Thank you very much @colleenyoung! So far the headaches and shooting pains are not very intense. I do still feel the numbness on the right side of my face/head, concentrated more around my eyes now. My right side eyesight is a little worse than a year ago, however, if I rest my eyes and get enough sleep my vision is still good. I will keep everyone posted after the second infusion on 2/28/17. Thank you again for the nice welcome!

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@cgrammie2

Please private message me for my contact information likeI said we live in Tennessee and would love to talk with others and share our story and treatments some good others not so good….what works for one might not for the other! Seems it is trial and error!

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I have recently been diagnosed. Had a MRI to search for reasons my hearing has declined, and dura mater thickening was discovered. Constant mild headache and some neck pain. Also eyes feel tired constantly. I see that you have been on the forum since 2012. My neurologist took a wait and see approach as I didn’t have a headache then. I would like to find a teaching hospital that has some experience pachy meningitis. Do you have any suggestions?

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@cgrammie2

Please private message me for my contact information likeI said we live in Tennessee and would love to talk with others and share our story and treatments some good others not so good….what works for one might not for the other! Seems it is trial and error!

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Hi @tracyb
My doctors are at UCSF San Francisco CA. I think I am the most recent and probably only case of Pachymeningitis. It was first thought to be a meningioma and I had two gamma knife treatments within 5 years. The shooting pains got worse and always trouble with my eyes and numbness on the right side of my face. Then in October 2016 the MRI should inflammation all over my dura. They did a mini craniotomy to get a biopsy and that is when I was diagnosed with Pachymeningitis. I was placed on prednisone for a few months and then had rituximab Infusion x2 last month. So far the pain has been subsiding daily. The prednisone side effects are the only downfall and I’ve been off prednisone since 2 weeks ago. Getting better slowly.

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Hello – I have just been diagnosed with pachymeningitis after craniotomy 3 weeks ago. Currently taking prednisone, but as soon as the dose was reduced, I had a return of symptoms. Does anyone have any updates on other treatments that may have worked. I know it is early days for me, but I am not feeling good about prednisone. Looking for any advice and experience dealing with this disease

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@ginmac

Hello – I have just been diagnosed with pachymeningitis after craniotomy 3 weeks ago. Currently taking prednisone, but as soon as the dose was reduced, I had a return of symptoms. Does anyone have any updates on other treatments that may have worked. I know it is early days for me, but I am not feeling good about prednisone. Looking for any advice and experience dealing with this disease

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Hi @ginmac,
Welcome to this group. I had 2 Infusions of Rituximab in February 14 and 28, 2017. It didn’t work immediately, however, I have been improving at almost 4 months post Infusion. The drug is very expensive and the doctor has to write what other treatments were given and your reaction to the prednisone was. Good luck and ask me any other questions you may have.

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hi ..I was diagnosed with iodopatic Hypertrophic pachymenigitis just over a year ago…after a very long journey and trips to the doctors with headaches, face pain numbness and double vision ….I had a skull based biopsy and the histology proved challenging and took months ..in the meantime I was told it was probably an inoperable untreatable meningioma.i had complete sight loss in the right eye whilst waiting ..was given 16mg dexamethasone but didnt seem to respond, fortunately the cycle i mention later on my sight slowly came back almost like on rewind ! 8 weeks later my left eye started to go,we were quicker with the dex and it responded almost straight away.We also have taken a watch and wait my symtoms had seemed to go in cycles.It had all been on the right side.But I'd started with left sided headaches and a foul smell and scan had showed extensive spread in jan 18..Neurologist started me in 16mg of dexamethasone I've just tapered to 40mg prednisolone and he's started me on mycophenolate tapering up to 750mg twice daily ..steroids are awful ! ..I have lots of symptoms still, neck pain numb face..my right sided face swells ??? ..and my right eye is blurred with intermittent double vision ..Hoping mycophenolate will help..anyone else taking immunosupresent..if so how long until they seem to work ?? any advice welcome. can't belive I've found other people with this!! my neurologist has never treated anyone with it before …sorry about long boring post!!

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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/

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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?

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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.

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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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