pachymeningitis
 

:confused: 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.

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

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

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.

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

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 :)

Nice to meet you!!
 

Wendy,

:Wave-Hello: 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. :smileypray:

:hug:

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.

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.
:hug:

Hi!

I'm so sorry you're having to deal with this horrible illness but I know what you mean, it's nice to have someone else to share the experience with. This whole disease is crazy. The last time I was in the hospital, the neurologist jokingly told me that I should have gotten something people had actually heard of.

The first time mine went into remission, it seems like it was almost by chance. I had been up and down on Prednisone for about three years and finally had a craniotomy/biopsy, which showed nothing really other than inflammation and thickening, but, for some reason, after the surgery, my immune system went into overdrive and I had a spontaneous remission. It was just kind of a fluke and there's really no reason to expect that to happen again. This time it's become both steroid dependent and increasingly steroid resistant, so the Prednisone is not working as well as it used to, however, if my dose gets too low, it flares back up again with a vengeance.

The main sign of a relapse has been the headache. Even though I know the signs by know, I still tend to let it go way further than I should before I finally call the doctors. I know all about the confusion and sort of paranoia with the headaches. Besides the pachymengitis, I also get chronic sinusitis, migraines, and tension headaches, so I've had to learn to tell them all apart. Even then, I still second guess myself all the time. Even when I know it's a meningitis relapse, it's almost a relief to have the validation of the MRI to back me up. Not that I want my brain to explode, but I just feel kind of crazy sometimes with all this and seeing it in black and white on the scan helps me believe it myself sometimes.

Methotrexate didn't do much of anything for me as far as the inflammation goes, but my docs weren't able to get me on a very high dose of it because my liver enzymes went off the chart really quickly. It may work better for you. I had really no side effects from it, though, other than mild fatigue.

At this point, it looks like the Rituxan might not have worked, but we're still not sure. Headaches are back and the last MRI, a month ago, shows no change at all. However, the other patient my neuro had treated with Rituxan had been treated with a combo of Rituxan and low dose Cytoxan, which they didn't do with me because we were trying to go less toxic to begin with. So, for the moment, the neuro has started me on Neurontin for the headache and is considering the next move for the pachymeningitis.

Hope I answered any questions. If I missed any or if you have any more, feel free to ask. My neuro has treated one other person with this and, besides that person and you, I know of one other person with this condition. Not many, but it's enough to feel a little less alone out there.

Sending you much hope and healing thoughts,
Wendy

Hello Dotty
 

Welcome to Neuro Talk. I read Mrs.D post to learn about your disorder. You will find support and friends here. I hope your condition can have some resolution. Virus's can do alot of damage, and I am sorry this happened to you. I will keep you in my thoughts and prayers. ginnie:hug:

Thanks again Wendy. I really appreciate you telling me about your experiences and shedding some light on this disease.Right now I am more annoyed with the side effects of the prednisone than the pachymeningitis. My last MRI on the 9th showed improvement according to my GP. I don't see my neurologist til Nov 1st so I will continue to second guess every headache til then. I guess with experience I will be able to tell them all apart!

I was diagnosed in June and hope to get off the steriods asap. Do you know how long it takes before yuo become steriod dependent/resistent?
I hope they are able to figure out the meds for you. All the medical articles I have read on line talk about treating with steriods and steriod enhancing drugs. Unfortunately, because this disease is so rare they just don't have the research and I guess we are their guinea pigs. What works for one case doesn't always seem to work for the next.

I am less optimistic that this is an "idiopathic" episode for me too. My Dr makes it sound like it is a life long, chronic disease to be managed... Makes me think there is a life lesson here somewhere.

I am a 43 yr old mom to 3 boys, wife/partner for 11 yrs and teacher (only working 2 day/wk right now and may consider stopping altogether...). I live in British Columbia, Canada. You?

Sending you lots of positive energy your way. Audrey.

HI! I'm so sorry I've taken so long to reply. I was quite ill for a long time and have been in and out of the hospital with relapes of the meningitis and have been so sensitive to light that I haven't been able to use the computer very much.

I hope you're doing better since you last posted and haven't had the relapse you were worried about. One problem with this condition is that, though the steroids do very well to reduce inflammation quickly, it does become very steroid dependent and, when trying to taper off the steroids, it tends to relapse with a vengeance.

Unfortunately, the Rituxan did not work but I am now on Cellcept and am seeing promise with this medication. I'm also in contact with another person in Tennessee with the same condition who has been on Cellcept for about six months longer than I have and he has had greatly reduced inflammation showing in his MRI, so I have good hope for this medication.

I know how scary it can be trying to tell different types of headaches apart. Some doctors, especially in the hospital, keep trying to treat me for migraine (which I do get) and I have to explain the difference to them and explain why and how I can tell the headaches apart. Then, when you get something acute, like a sinus infection, it throws you completely off. When I relapse, I find that the headache has a certain pressure-like quality, like a balloon being inflated inside my skull. I also tend to become lethargic and have some nausea but, in speaking with some others with the condition, I've found that not everyone has that same pattern. You kind of have to find out what is the feeling of "not right" for you and listen to it.

I've also found that heat sensitivity seems to be a common factor with everyone I've spoken to so far with this. Do you have worse symptoms when it's hot or difficulty dealing with heat in general? Just curious about that.

Sending good thoughts and hoping that you are well.

Wendy

Hi Wendy, I too haven't been here for many months! Sorry to hear things weren't going well for you. I hope things have improved for you now and the new drug is working. I failed on Imuran and Methotrexate and am on Cellcept now too. Fingers crossed. I haven't experienced heat sensitivity other than what seems to be a side effect from the meds. I wonder though... if the heat can raise blood pressure=increase brain pressure which leads to more symptoms. Cold here in Canada most of the year so...lol. Anyways, hope this post find you improved and in good spirits. Audrey.