Behcet's Syndrome

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.

@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.

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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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@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?

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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.

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Hi @johnbishop

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

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@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……

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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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@jackie30

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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Jackieo

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@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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@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.

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

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@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

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Hello Maria @mel66 — Welcome to Connect. There is another active discussion where you post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post here:

> Groups > Autoimmune Diseases > Behcet's Syndrome
https://connect.mayoclinic.org/discussion/bechets/

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.

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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

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Hi Maria @mel66 I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved you post to this existing discussion on Behcet's Syndrome so that you can connect with users like @jackie30 and @senlw who may be able to offer support. Simply click VIEW AND REPLY in your email notification to get to your post.

I'd like to repeat question John asked, have you already started taking Mycophenolic acid?

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@ethanmcconkey

Hi Maria @mel66 I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved you post to this existing discussion on Behcet's Syndrome so that you can connect with users like @jackie30 and @senlw who may be able to offer support. Simply click VIEW AND REPLY in your email notification to get to your post.

I'd like to repeat question John asked, have you already started taking Mycophenolic acid?

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Good evening,. Yes I have begun 250mg BID. Than you for placing my post in the group. I appear to be in a flare again. Be well and I look forward to hearing the experience of others

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@johnbishop

Hello Maria @mel66 — Welcome to Connect. There is another active discussion where you post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post here:

> Groups > Autoimmune Diseases > Behcet's Syndrome
https://connect.mayoclinic.org/discussion/bechets/

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.

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Thank you I will read the articles. I've read many in the journals. I have hope for this med and realize it may take awhile to integrate into the body . Vasculitis and joint involvement is one of my major symptoms. Neuro is possible. EMG showed nothing last summer, then again the disease was in a remission, though it's never totally gone, symptoms abate to a degree. The drug shows promise . Steroids are not working and Imuran put my liver into acute failure so cannot take it. It did recover thankfully. Thanks again John for your research, all is appreciated and I will post links that are credible as well

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