Pachymeningitis: Anyone else?

@scaredmomma
I’m so sorry to hear how much pain your daughter is experiencing. I only thing that worked for me was Rituximab Infusions. It last in for about 6-8 months. I am even able to wait about 10-12 months for the next set of infusions. Please let me know if you need more information. Sending your daughter and you healing thoughts and prayers.

Is she on steroids? I was on dexamethasone for 10 months. After my children insisted the docs at Baptist take me off them, I began to improve. I could not walk, my feet and legs were sooo swollen, I still have no memory of several months, I had to wear a diaper, I could not bathe myself or brush my teeth or hair. My hair thinned and came out..My hearing has gone south, but my vision has improved. My gait is not what it use to be, but most of the time I walk well. I no longer fall. I always fell backward..always. I can no longer ride a bicycle or go for long walks. I still forget things and have anger issues. I also bruised easily..not as much now. However, I have never had a bad headache. Sometimes, now my head feels as though there is pressure on the left side and I become very dizzy. However, I find if I lie down and put my feet up, it goes away in about 20-30 minutes. My last MRI in July showed vast improvement...the steroids were far more damaging to me than Pachy. I will never take them again. Keep us updated on your daughter...Prayers helped me and I will pray for your family.

Yes she has been on all sorts of medications but yes now she is on the steroids and they are weeining her down she is not doing well on them either. She is now waiting for I believe its called Imitrex infusions. Thanks for your reply. You are all strong and amazing people.

Yes this is what they are starting her on now hopefully by next week. Thank you for the input. We're just praying it helps. Good to know that you have had some success. This is good news for both of you. Stay strong you are amazing.

Thank you I will call and see what they can do to help us. I tried to complete the international form yesterday but it wouldn't work.
Yes she is still being followed by her current doctors.

@scaredmomma
I believe @colleenyoung may have some additional information to share with you regarding international.

Hi @scaredmomma, I see you are from Canada. In some cases, when treatment options not available in your province, your provincial healthcare coverage will pay for out of province access. You may wish to contact Mayo Clinic to find out a) if Mayo Clinic can offer treatments that differ from the treatment your daughter is currently receiving and b) if your provincial plan would cover out of province care.

One thing I know for certain is that asking costs nothing. Please contact our Canadian information services at Mayo Clinic https://www.mayoclinic.org/canada

Thank you so much. I did complete the online application today so hopefully we will hear back soon. Thank you so much for the resources and replys. It gives me some hope.

My hubby was diagnosed with pachy meningitis finally in Oct 2020. Back in July 2020 he began having terrible trouble with his balance when standing and walking. Since he had some ringing in his ears we started with an ENT. The ENT then referred us to a neurologist who prescribed the MRI that showed pachy meningitis. My hubby has had a lumbar puncture, CT scan, and numerous blood work done. We have ruled out so far bacteria, virus, fungus, autoimmune causes, plus tumors / cancer, etc. We are now seeing an infectious disease doc. My hubby feels like his double vision is getting worse so now we are waiting to see a neural ophthalmologist (there are only 2 in our area of San Antonio). He tried prednisone for a few weeks and it made him feel dizzier than he already is plus the weight gain. No more of that. Thankfully he is not in any pain but he can only walk with a hiking stick, and tires easily. It is good to hear that we’re not the only ones who seem to be “alone” with this diagnoses. Talk about the year 2020- this plus CoVid and everything else! Praying for treatment and complete healing for everyone!

@Iphillips May I asked what part of the dura or brain is affected by the inflammation/Pachymeningitis? Your husband may need to see a neurosurgeon instead that specializes in the brain stem or if anywhere close to the cranial nerves. I was also placed on prednisone 60mg daily taper down for a few months. However, the symptoms and inflammation came right back soon after stopping prednisone. Due to my type 2 diabetes, the team of doctors decided on Rituximab Infusions. So far I’ve had 4 sets on infusions since 2016 and that seems to help for at least 6-12 months. My cranial nerve 6 was affected which permanently moved my left eyeball inwards which caused the double vision. It corrected itself after about 8 months. Neuro Opthalmalogist is also a good next step. I had a neurosurgeon because they first suspected it to be a small meningioma in the cavernous sinus brain stem area. So I was first treated with gamma knife procedure then the growth/inflammation returned after 5 years. Hope some of this information helps you and your husband.