1. < Autoimmune Diseases

Behcet's Syndrome: What treatment has worked for you?

Posted by mrmaid11 @mrmaid11, Sep 30, 2017

My name is Shiela and my daughter has been diagnosed with Bechets. Is there anyone who has has success with any kind of treatment. So far not much has worked for her.

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jackie30 | @jackie30 | Mar 15, 2019

Hi Shiela,
I have Behcets, I was diagnosed over 30 years ago. I know how frustrating it is. At this time I do not take any medication. I was told as I got older the immune system weakens and less flares. I did lose the sight in my left eye from all the steroids, causing cataracts and glaucoma. I had surgery on left eye, but gradually lost my sight. I took chlorambucil to supress my immune system. Most of my flares now are the mouth ulcers and I do have a lot of stomach issues. Hope this helps, because I know how alone and lost one can feel.

REPLY
1 reply
senlw | @senlw | Apr 1, 2019
In reply to @johnbishop "Hello @senlw, welcome to Mayo Clinic Connect. Thank you for sharing your story and joining in..." + (show)
@johnbishop

Hello @senlw, welcome to Mayo Clinic Connect. Thank you for sharing your story and joining in the discussion. It really helps when members with the same or similar symptoms are able to share with each other and know they are not alone. I don't have Behçet’s but do have several other autoimmune diseases and have found that I just have to take it one day at a time. Is there anything that helps you get through the bad days?

Jump to this post

Hi John I know that's the line I've heard take it 1 day at a time....I think that's the hardest part for me. I want to visit the world see amazing things meet people from every continent but how do you do that when you can only live 1 day at a time? Please do not get me wrong I'm not trying to sound bitter unfortunately it is just our reality.
But to answer your question I tell folks I have bad days and I have really bad days. On my really bad days I have my 3 amazing dogs. They lay with me in bed all snuggled with me and for me love from my babies is true love and they look at me with their eyes like it's ok mommy we got you today. But on those really bad days I have to be there for them too so that's what keeps me going. My babies and I help eachother. And well a lot of sleep and meds unfortunately.
What keeps you going on your hard days? Any good advice?

REPLY
1 reply
senlw | @senlw | Apr 1, 2019
In reply to @jackie30 "Hi Shiela, I have Behcets, I was diagnosed over 30 years ago. I know how frustrating..." + (show)
@jackie30

Hi Shiela,
I have Behcets, I was diagnosed over 30 years ago. I know how frustrating it is. At this time I do not take any medication. I was told as I got older the immune system weakens and less flares. I did lose the sight in my left eye from all the steroids, causing cataracts and glaucoma. I had surgery on left eye, but gradually lost my sight. I took chlorambucil to supress my immune system. Most of my flares now are the mouth ulcers and I do have a lot of stomach issues. Hope this helps, because I know how alone and lost one can feel.

Jump to this post

I have to know how are you not on any medications? What is your magic pill? I'm so tired of all of the pills I have to take!! Its never ending plus I just started a new biologic crossing my fingers I've only had 1 dosage. My biggest fear is losing my eye sight I just don't know how I will handle that......

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 2, 2019
In reply to @senlw "Hi John I know that's the line I've heard take it 1 day at a time....I..." + (show)
@senlw

Hi John I know that's the line I've heard take it 1 day at a time....I think that's the hardest part for me. I want to visit the world see amazing things meet people from every continent but how do you do that when you can only live 1 day at a time? Please do not get me wrong I'm not trying to sound bitter unfortunately it is just our reality.
But to answer your question I tell folks I have bad days and I have really bad days. On my really bad days I have my 3 amazing dogs. They lay with me in bed all snuggled with me and for me love from my babies is true love and they look at me with their eyes like it's ok mommy we got you today. But on those really bad days I have to be there for them too so that's what keeps me going. My babies and I help eachother. And well a lot of sleep and meds unfortunately.
What keeps you going on your hard days? Any good advice?

Jump to this post

Hi @seniw - To be honest, when I have a really bad day I try to surround myself with positive thoughts. I've found 2 especially good sources for me besides my wife to help me focus on positive thoughts.

A website with a lot of short videos on staying positive and how the brain works... https://www.resilientoption.com/.
A Mayo website page - How to be happy: Tips for cultivating contentment ...https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714

That and I always keep hope by trying to learn as much as I can about my health conditions and any new treatments that may not help me but will help others in the future.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 2, 2019

Hi @johnbishop

That first website about resilient option is awesome! Thanks for sharing it.

REPLY
jackie30 | @jackie30 | Apr 2, 2019
In reply to @senlw "I have to know how are you not on any medications? What is your magic pill?..." + (show)
@senlw

I have to know how are you not on any medications? What is your magic pill? I'm so tired of all of the pills I have to take!! Its never ending plus I just started a new biologic crossing my fingers I've only had 1 dosage. My biggest fear is losing my eye sight I just don't know how I will handle that......

Jump to this post

Shiela, I do believe what the doctors say that the immune system weakens as we age. My flares are a few a month, with mouth ulcers and joint pain. I choose to not use any medication as I am able to deal with it. I will never regain my eye sight but thankful for all the doctors who tried. One big issue I do deal with is stomach issues, have been informed by my gastro Doctor that this is part of it. This started a few years ago. Not sure where I go from here with that.

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lioness | @lioness | Apr 2, 2019

@jackie30 @senlw I'm so sorry to here how this terrible disease is effecting you God bless you he will give you your strength 🙏❤️

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Jen, Alumna Mentor | @sandytoes14 | Apr 3, 2019
In reply to @johnbishop "Hi @seniw - To be honest, when I have a really bad day I try to..." + (show)
@johnbishop

Hi @seniw - To be honest, when I have a really bad day I try to surround myself with positive thoughts. I've found 2 especially good sources for me besides my wife to help me focus on positive thoughts.

A website with a lot of short videos on staying positive and how the brain works... https://www.resilientoption.com/.
A Mayo website page - How to be happy: Tips for cultivating contentment ...https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714

That and I always keep hope by trying to learn as much as I can about my health conditions and any new treatments that may not help me but will help others in the future.

Jump to this post

@johnbishop Thanks for sharing those. Your upbeat attitude always helps me.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 30, 2019
In reply to @mel66 "Hi everyone.Thank you for admitting me I was recently diagnosed with what most likely is Behchets...." + (show)
@mel66

Hi everyone.Thank you for admitting me I was recently diagnosed with what most likely is Behchets. I am going through painful acute bouts of vasculitis. I have been on Prednisone and Medrol for almost 2 years with no diagnosis and relief was temporary. It's a rare disease and it has been active for a while. My rheumy prescribed Mycophenolic acid. Azithriopine was very adverse to liver. Any success stories on Mycophenolic acid? It is experimental still. It's such a horribly painful condition that just loves my joints and muscles. Love to hear success and have support. Thank you Maria

Jump to this post

Hello Maria @mel66 -- Welcome to Connect.
I did find an article that mentions the treatment and hopefully will provide some helpful information.
ResearchGate - Mycophenolate mofetil as a novel immunosuppressant in the treatment of neuro-Behçet's disease with parenchymal involvement: Presentation of four cases: https://www.researchgate.net/publication/221698914_Mycophenolate_mofetil_as_a_novel_immunosuppressant_in_the_treatment_of_neuro-Behcet's_disease_with_parenchymal_involvement_Presentation_of_four_cases

Have you already started taking Mycophenolic acid? Just wondering if it's helping with your symptoms.

REPLY
1 reply
mel66 | @mel66 | Sep 30, 2019

Hi everyone.Thank you for admitting me I was recently diagnosed with what most likely is Behchets. I am going through painful acute bouts of vasculitis. I have been on Prednisone and Medrol for almost 2 years with no diagnosis and relief was temporary. It's a rare disease and it has been active for a while. My rheumy prescribed Mycophenolic acid. Azithriopine was very adverse to liver. Any success stories on Mycophenolic acid? It is experimental still. It's such a horribly painful condition that just loves my joints and muscles. Love to hear success and have support. Thank you Maria

REPLY
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