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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@grand7jud

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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See post below.

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Hi @grand7jud
We are here for you and your hubby if you have any questions. The prednisone should start helping. I was started on prednisone 60mg and tapered down to 5mg for about 6-8 weeks. However I have type 2 diabetes so being on prednisone long term was not an option. Symptoms of facial numbness and shooting pains started again after I finished the prednisone treatment. So my doctor recommended Rituximab Infusions which has helped tremendously. I’ve had two sets of Rituximab Infusions so far and having an MRI in January. I’m not sure if I will need another set of Infusions because I’m feeling okay so far. Last one was a year ago. We are here for you and available to assist in anyway. It’s very difficult to go through this feeing alone since it’s so rare.

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Hi @grand7jud and @jrt26 @gigirambo ….Good to hear positive results with rituximab @jrt26 .I hope everyone else is getting on ok .It's a weird one having something so rare I think I found that as tough as the pachymeningitis! …..I had a set back a few weeks ago my neurologist was on holiday ,.I went to my gp (doctor) had to explain to the best of my knowledge what I have ,then she asks me what do i think we should do ??? … sums it up really for me pretty lonely .
I've had a year of steroids more or less now and mycophenolate although I haven't had complete resolution ,my head is a lot better than it was .I had developed severe oedema(amongst other things) in my left inferior frontal lobe but huge doses of steroids sorted that … I'm on a super slow taper of steroids after a failed attempt and a blip were my head headaches came back with avengence …it will nice to recognise myself in the mirror again ! Steroids have induced cushings syndrome and I hate them yet i am grateful for them….I still have rubbish eyes bit of intermittent double vision …the Neurologist thinks that it's possibly nerve damage rather than active disease…but he admits it's all a bit of " if but and maybe " .but things are better than they were.hey hoe.Hope everything goes well for you all Meg

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An update. I posted above that my IHCP was diagnosed in Feb, 2017 by a MRI. Had a followup MRI 5 months later in July, 2017, and it showed no progression, so my neurologist and I decided on a wait and see approach because my symptoms were relatively mild and not warranting the steroid treatment side effects. I should have posted earlier this year again that another MRI was done in July, 2018. Fortunately it again showed no change (IHCP stabilized), so again no treatments. We will just continue this program unless there is progression. It frustrating to know that if there is progression, I will have to start with the steroids first knowing that they likely will do no good before I can be treated with rituximab, but it's nice knowing that there is a likely cure.

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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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Did anyone have a high white blood count

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How did you get the doctors to listen to you ive been to er 2 times this week for migraines and today they sent me home and my head is still killing me

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A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 – how are you doing? Did the migraine subside you had last week?

@tracyb – are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor – are you still experiencing some of the improvements you saw with the steroid treatment?

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@lisalucier

A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 – how are you doing? Did the migraine subside you had last week?

@tracyb – are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor – are you still experiencing some of the improvements you saw with the steroid treatment?

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Still in Wait and See mode. Having MRIs every July to check for progression. Next MRI is July, 2019. Regarding symptoms, my mild 24/7 headache may be getting a little worse, my eyes feel "heavy" and my stiff sore neck is worse (although I do have facet joint disease which may be a problem with the neck). Will be interesting to see if my next MRI shows progression. IMO, I don't feel as well lately, but my symptoms still don't warrant steroids, etc, but we will see when I meet with my neurologist. If there is progression, that could change my mind about treatment.

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@lisalucier

A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 – how are you doing? Did the migraine subside you had last week?

@tracyb – are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor – are you still experiencing some of the improvements you saw with the steroid treatment?

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Hi all I hope you are all getting on ok .I have managed to taper off steroids in April ,so i have just been on mycophnooate since ,so my head made a significant improvement from the starting point of treatment at the begining of Jan 2018, the next MRI in April 4 months after starting showed massive improvement ,but not complete resolution.I have had 4 MRIs since and it has remained stable ,I've had two bouts of headaches and face pain both lasting 6 weeks ish and then it seems to resolve and the scans always say no significant change so who knows what the headaches are about ,so that's me stable ,I'll take that ! I Would be keen to hear how you are all getting on Meg

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Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis….fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??

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@helena49

Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis….fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??

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Pachymeningitis is rare.
You are going to a good place (Mayo) where you might have a thorough lab evaluation,(repeat MRI?)and a diagnosis.
Let us know.

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I was curious if anyone has had a seizure or been diagnosed with Epilepsy as a result of this disorder?
Take care all,
Jake

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