[dotty57]

i was diagnosed 2 years ago with idiopathic hypertrophic cranial pachymeningits and would like to communicate with someone who has any experiemnce with this disorder.

[Jomar]

Hello,
I had to Google that one, had never heard of it before.

this is what came up on the search-
http://www.google.com/search?q=pachy...ient=firefox-a
http://www.google.com/search?hl=en&c...ngitis&spell=1

Idiopathic hypertrophic cranial pachymeningitis is a
rare inflammatory disease of unknown origin that affects
the meninges. The diagnosis is made by exclusion
of other known causes of pachymeningitis or thickening
of the dura mater, such as rheumatoid arthritis, sarcoidosis,
syphilis, and tuberculosis. A review of the literature
on idiopathic hypertrophic cranial pachymeningitis reveals
clinical features similar to those in our case (1–6).
The peak age for occurrence is in the sixth decade, and
headaches and progressive cranial nerve palsies are the
most common clinical features.
http://www.ajnr.org/cgi/reprint/19/3/450.pdf

[Darlene]

Dotty,

Hello and welcome to NeuroTalk. Nice to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can. Again welcome, looking forward to seeing you around.

Darlene

[DM]

Hi Dotty and Welcome... I hope you can find some help and comfort from this board/forum. NT is a great place for info, advice and communication. Welcome again!

[audpod13]

Originally Posted by dotty57

i was diagnosed 2 years ago with idiopathic hypertrophic cranial pachymeningits and would like to communicate with someone who has any experiemnce with this disorder.

I was diagnosed this summer. On Decadron. What drugs are you on? Side effects from steroids worse than brain biopsy, etc....There isn't alot of info out there and this is so new to me too.Never even to this forum thing. I am a 43 yr old F. Mom of 3. Wife.

[mrsD]

Welcome to NeuroTalk:

This is a pretty old thread, so the original poster may not reply if they have moved on.

You are welcome to start a new thread on our General forum.
It will then show up on Google searches, and others may see it.
If you choose a title with the diagnosis in it there is a greater chance someone will see it on the net in general.

Here is the link to our General forum:
http://neurotalk.psychcentral.com/forum2.html

[llamafairy]

Originally Posted by audpod13

I was diagnosed this summer. On Decadron. What drugs are you on? Side effects from steroids worse than brain biopsy, etc....There isn't alot of info out there and this is so new to me too.Never even to this forum thing. I am a 43 yr old F. Mom of 3. Wife.

Hi, I saw your post while I was doing a Google search on the condition. I've been diagnosed with Idiopathic Hypertrophic Cranial Pachymeningitis for a very long time now. I had the first bout of it from 2000 to 2003, then was in remission until April 2010 and have been trying to get it under control since then. I've been on up to 80mg of Prednisone the entire time, never lower than about 30mg. I agree, the steroids are terrible, especially the long-term effects. We've tried Methotrexate, with no effect. This summer, I tried Rituxan, with great hope, but have recently found that it had no effect on the inflammation. I see my neuro again next week and we may be trying the Rituxan again with an added agent, possibly Cytoxan.

** Best of luck to you and I hope to hear from you soon.

Wendy

[Darlene]

Wendy,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[audpod13]

Originally Posted by llamafairy

Hi, I saw your post while I was doing a Google search on the condition. I've been diagnosed with Idiopathic Hypertrophic Cranial Pachymeningitis for a very long time now. I had the first bout of it from 2000 to 2003, then was in remission until April 2010 and have been trying to get it under control since then. I've been on up to 80mg of Prednisone the entire time, never lower than about 30mg. I agree, the steroids are terrible, especially the long-term effects. We've tried Methotrexate, with no effect. This summer, I tried Rituxan, with great hope, but have recently found that it had no effect on the inflammation. I see my neuro again next week and we may be trying the Rituxan again with an added agent, possibly Cytoxan.

** Best of luck to you and I hope to hear from you soon.

Wendy

Thanks Wendy! It is nice to know with something this rare there is someone else out there with experience with this. I will apologize now, but as you can tell doing this forum thing is totally new to me. If you have pointers let me know! I am new to the diagnosis and the Drs are trying to get mine into remission. I have had 4 MRI's since June and the last one showed almost complete recession of growth/inflammation. I switched from Decadron to Prednisone Sept. 19th. Unfortunately, I think my symptoms have come back. Hard to tell if it's a sinus cold (which I have), rebound headache, withdrawl symptoms or what. How could you tell you were relapsing? I hope your new drug regime will work for you. I have heard good things about Rituxan. I am allergic to Imuran, neuro wants me on Methotrexate if I relapse. What were your experiences on it? Have you been able to work? I have many questions...Hope to hear from you soon too. Take care.

[llamafairy]

Originally Posted by Darlene

Wendy,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Thank you so much for the kind greeting. It's great to find such a welcoming group here. It can be difficult and frustrating to deal with having such a rare condition and it's nice to find a place to get support without further stressing family with all this.

Thank you again,

Wendy.