Pachymeningitis: Anyone else?

Hey Meg!
Do you get gastro/stomach issues with the mycophenolate? I have periods where my stomach is not good and I don’t want to eat. Also I get like a reflux and a really full feeling. It comes on for several days and then goes away but always comes back.

Hi! I am new to this site. My husband had vertigo and hearing loss and was sent to the ER where they decided to do and MRI. This happened earlier this year in the summer. The results were pachymenigitis. He has an infection in there but has no headaches, thank goodness. Now he is displaying the following: sleeping a lot, bladder incontinence, trouble lifting his legs, some confusion but does not have a headache. He is scheduled for another MRI in order to compare the two MRI's. He turned 72 in July. It is like he is confused a lot. I am going to get him an an appointment with the neurologist as I am scared why this all happened starting this past week. They think it is an infection from when he had MRSA after foot surgery and the blood clots he developed from his groin to his ankle, which there are 3 of them in his left leg. He does wear his compression hose. I am 5 years younger but have had strokes. We are each other's caregiver. He is just totally wiped out all the time all of a sudden. The bladder incontinence was just now and then but now it is about every day. He cannot help it. I did get him incontinence underwear which he does wear. I am very concerned about why the sudden change in the past week and a half to have such a change. The reason he hasn't gone to the doctor is unfortunately I was in the hospital for a day and a half due to a small stroke and I think it was the stress of worrying about my husband. When they happen which this was the 8th one as I have Lupus and Mitral Valve Prolapse and many other autoimmune diseases as well as Antiphospholipid APS. They happen when I am under extreme stress they happen and I cannot talk or use my right side for a day. I am concerned that my husband not being able to hear well at all, and everything else that he has wrong that it happened so fast. He was put on Meclizine for the Vertigo which he tried to wean off of but found out he will always have to take it. He also has Osteoarthritis. He has high blood pressure and has been on heart medication for years. His appetite is the same which is good. I had never heard of pachymeningitis until he went to the ER with vertigo and the MRI showed this and that is when the neurologist spoke to us. He was glad my husband does not get a headache ever, but said if he got one he needed to get to the hospital right away. My problem is, I cannot find much about pachymeningitis as well as my husband's symptoms and if it is the pachymeningitis or something else. When he tries to walk, he is having trouble lifting his feel. When he does walk all of a sudden he is on his tiptoes, leaning forward and almost is going too fast that he looks like he will fall. He doesn't know why when I ask questions. I tell him I am concerned he will fall. He has a cane but only seems to use it at night to get out of bed to go to the bathroom and back which we do have an attached bathroom to our bedroom. I am scared to death because the vertigo when it started he fell into the shower doors as well as pulled a towel bar out of the drywall. It is I want to know from others if they are dealing with these symptoms with their love ones who have pachymeningitis. I had never heard of this until my husband was diagnosed with this at the ER this summer. I feel like I just cannot look up and getting any more information than a little bit that is what I find on every site but it is very little information. Please help me as I feel I am treading water. Thank you in advance

Hello @dwallech, Welcome to Connect. It must be really difficult when you are both the primary caregiver for each other and your husband has a rare condition like pachymeningitis. @tracyb posted the following link earlier in the discussion:
-- Rituximab Treatment for Idiopathic Hypertrophic Pachymeningitis:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392457/
@megmor, @77smith77, @lphillips, @jrt26 and others may be able to offer some suggestions and share their experience.

Hi! I am new to this site. My husband had vertigo and hearing loss and was sent to the ER where they decided to do and MRI. This happened earlier this year in the summer. The results were pachymenigitis. He has an infection in there but has no headaches, thank goodness. Now he is displaying the following: sleeping a lot, bladder incontinence, trouble lifting his legs, some confusion but does not have a headache. He is scheduled for another MRI in order to compare the two MRI's. He turned 72 in July. It is like he is confused a lot. I am going to get him an an appointment with the neurologist as I am scared why this all happened starting this past week. They think it is an infection from when he had MRSA after foot surgery and the blood clots he developed from his groin to his ankle, which there are 3 of them in his left leg. He does wear his compression hose. I am 5 years younger but have had strokes. We are each other's caregiver. He is just totally wiped out all the time all of a sudden. The bladder incontinence was just now and then but now it is about every day. He cannot help it. I did get him incontinence underwear which he does wear. I am very concerned about why the sudden change in the past week and a half to have such a change. The reason he hasn't gone to the doctor is unfortunately I was in the hospital for a day and a half due to a small stroke and I think it was the stress of worrying about my husband. When they happen which this was the 8th one as I have Lupus and Mitral Valve Prolapse and many other autoimmune diseases as well as Antiphospholipid APS. They happen when I am under extreme stress they happen and I cannot talk or use my right side for a day. I am concerned that my husband not being able to hear well at all, and everything else that he has wrong that it happened so fast. He was put on Meclizine for the Vertigo which he tried to wean off of but found out he will always have to take it. He also has Osteoarthritis. He has high blood pressure and has been on heart medication for years. His appetite is the same which is good. I had never heard of pachymeningitis until he went to the ER with vertigo and the MRI showed this and that is when the neurologist spoke to us. He was glad my husband does not get a headache ever, but said if he got one he needed to get to the hospital right away. My problem is, I cannot find much about pachymeningitis as well as my husband's symptoms and if it is the pachymeningitis or something else. When he tries to walk, he is having trouble lifting his feel. When he does walk all of a sudden he is on his tiptoes, leaning forward and almost is going too fast that he looks like he will fall. He doesn't know why when I ask questions. I tell him I am concerned he will fall. He has a cane but only seems to use it at night to get out of bed to go to the bathroom and back which we do have an attached bathroom to our bedroom. I am scared to death because the vertigo when it started he fell into the shower doors as well as pulled a towel bar out of the drywall. It is I want to know from others if they are dealing with these symptoms with their love ones who have pachymeningitis. I had never heard of this until my husband was diagnosed with this at the ER this summer. I feel like I just cannot look up and getting any more information than a little bit that is what I find on every site but it is very little information. Please help me as I feel I am treading water. Thank you in advance

Hi @dwallech
I'm sorry both you and your husband are going through these health issues. It is also good that your husband is not experiencing any headaches. The headaches for me were terrible. There aren't too many doctors that have experience with Pachymeningitis. The only relief I got was rituximab infusions usually given every 6 months which helped reduce the inflammation in the brain mostly around the cranial nerves and dura of the brain as well as other parts of the body. You can send me a private message on where you live and maybe someone can help get you to a specialist that can run more blood test specifically for me it was B cells over producing and attacking healthy organs (autoimmune). The rituximab reduces the 'bad' B cells causing the inflammation. The problem is it also kills the good B cells that help prevent other diseases. So far I've had 4-5 sets of Rituximab infusions since 2017 which the last one being in 2020 and so far my symptoms are controlled with taking gabapentin and tegratol daily for the trigeminal neuralgia.
Hope this information helps.

It is a lonely journey. I too have come under suspicion after 3 MRI's for Pachymeningitis. I was diagnosed two years ago by a rheumatologist with IGG4 autoimmune disease (very rare) which attacks organs. It caused pancreatitis, scleritis, diverticulitis, bladder interstitial cystitis, bowel obstruction (two surgeries) gastroparesis, and just seems to attack whatever organ it feels like attacking. A common cold turns into pneumonia with pluresy. It's so frustrating. Fibromyalgia and Chronic Fatigue Syndrome set in also. I'm always tired, but try to remain as hopeful as possible and research, research, and more research. I have a laundry list of diagnosis in my 4 year medical journey and have been called a medical anomaly by all of my doctors. It is very difficult to be diagnosed with such rare diseases and also finding specialist that truly understand the diagnosis and treatment options. Unfortunately, what I've learned so far is even the treatment is in its clinical phases, not a cure, it's just a an option. It is very scary not knowing whether to do the treatment (with its known side effects) or to wait until the disease is better understood. Everything points to steroids and Rutiximab (has serious side effects). I've kept a medical journal and pain diary to see if certain foods trigger a difficult day. I've cut almost all meat out of my diet, juice organic spinach, kale, carrots, beets and apples. I use organic vegan powder with powdered greens and fruit for smoothies. I only graze on food, push lots of fluids. No gluten, no gmo foods, very little dairy (switched to almond milk or coconut milk), and try to push through the pain everyday. My circle of friends has diminished to only a few who understand to a certain degree. It is lonely and at times I become fearful. Trying so hard to fight this battle holistically, although I do use medication for the pain. Essential oils have been a life saver as well. I keep thinking if I make my body a healthy vessel that it will slow the disease process. I pray it does, I've been tried on so many medications and experienced so many side effects. It's so frustrating. The next step, my neurologist wants to do nerve testing, lumbar puncture, and a spinal and brain biopsy. I am being referred to Boston, just waiting for an opening in this specialist's schedule. It's scary waiting and the not knowing.
I'm researching Pachymeningitis and how they treat it. I keep seeing steroids. I can't tolerate steroids. It's really frustrating. I completely understand your concerns. If I learn more, I'm happy to share what the doctors tell me.
Hugs to you, I pray we all find the solutions we need.
Patty

Correction. My last rituximab infusion was in July 2021.

Hello,
I was just wondering how you did on that infusion medication…I did an IVIG with the medication Octogam (sp), and the side effects sent me to the ER. I had massive migraines, extreme high blood pressure, chest pains, trouble breathing and vomiting. It was awful. I have Sjogren’s Syndrome and Pachymeningitis.
I hope you’re feeling better,
Liz 🙏🏻
I hope you’re

Hi! I am new to this site. My husband had vertigo and hearing loss and was sent to the ER where they decided to do and MRI. This happened earlier this year in the summer. The results were pachymenigitis. He has an infection in there but has no headaches, thank goodness. Now he is displaying the following: sleeping a lot, bladder incontinence, trouble lifting his legs, some confusion but does not have a headache. He is scheduled for another MRI in order to compare the two MRI's. He turned 72 in July. It is like he is confused a lot. I am going to get him an an appointment with the neurologist as I am scared why this all happened starting this past week. They think it is an infection from when he had MRSA after foot surgery and the blood clots he developed from his groin to his ankle, which there are 3 of them in his left leg. He does wear his compression hose. I am 5 years younger but have had strokes. We are each other's caregiver. He is just totally wiped out all the time all of a sudden. The bladder incontinence was just now and then but now it is about every day. He cannot help it. I did get him incontinence underwear which he does wear. I am very concerned about why the sudden change in the past week and a half to have such a change. The reason he hasn't gone to the doctor is unfortunately I was in the hospital for a day and a half due to a small stroke and I think it was the stress of worrying about my husband. When they happen which this was the 8th one as I have Lupus and Mitral Valve Prolapse and many other autoimmune diseases as well as Antiphospholipid APS. They happen when I am under extreme stress they happen and I cannot talk or use my right side for a day. I am concerned that my husband not being able to hear well at all, and everything else that he has wrong that it happened so fast. He was put on Meclizine for the Vertigo which he tried to wean off of but found out he will always have to take it. He also has Osteoarthritis. He has high blood pressure and has been on heart medication for years. His appetite is the same which is good. I had never heard of pachymeningitis until he went to the ER with vertigo and the MRI showed this and that is when the neurologist spoke to us. He was glad my husband does not get a headache ever, but said if he got one he needed to get to the hospital right away. My problem is, I cannot find much about pachymeningitis as well as my husband's symptoms and if it is the pachymeningitis or something else. When he tries to walk, he is having trouble lifting his feel. When he does walk all of a sudden he is on his tiptoes, leaning forward and almost is going too fast that he looks like he will fall. He doesn't know why when I ask questions. I tell him I am concerned he will fall. He has a cane but only seems to use it at night to get out of bed to go to the bathroom and back which we do have an attached bathroom to our bedroom. I am scared to death because the vertigo when it started he fell into the shower doors as well as pulled a towel bar out of the drywall. It is I want to know from others if they are dealing with these symptoms with their love ones who have pachymeningitis. I had never heard of this until my husband was diagnosed with this at the ER this summer. I feel like I just cannot look up and getting any more information than a little bit that is what I find on every site but it is very little information. Please help me as I feel I am treading water. Thank you in advance