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Behcet's disease: Would like to connect with others

Posted by richardrr @richardrr, Sep 21, 2021

I was diagnosed with Behects about 40 years ago. The symptoms were recurrent pericarditis, mouth ulcers, joint pain, episcloritis, skin rash peripheral neuropathy and fatigue.
I've tried heaps of medications and am currently on Sirolomus and Prednisolone.
Any one got some thoughts on this disease.
The disease is stable but neuropathy is progressing speedily.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 21, 2021

Hi @richardrr, welcome. Allow me to tag @spankytwo2 @mrmaid11 @senlw @jackie30 @mel66 @cheerfulheart, who all have experience with Behcet's and may have some thoughts for you about neuropathy. You can read more about their experiences in this discussion.

- Behcet's Syndrome: What treatment has worked for you? https://connect.mayoclinic.org/discussion/bechets/

Richard, you've been living with Behcet's a long time. I'm glad the disease is largely stabilized with the exception of the neuropathy. Can you describe your neuropathy? Do you have numbness only or pain as well?

REPLY
1 reply
richardrr | @richardrr | Sep 21, 2021
In reply to @colleenyoung "Hi @richardrr, welcome. Allow me to tag @spankytwo2 @mrmaid11 @senlw @jackie30 @mel66 @cheerfulheart, who all have..." + (show)
@colleenyoung

Hi @richardrr, welcome. Allow me to tag @spankytwo2 @mrmaid11 @senlw @jackie30 @mel66 @cheerfulheart, who all have experience with Behcet's and may have some thoughts for you about neuropathy. You can read more about their experiences in this discussion.

- Behcet's Syndrome: What treatment has worked for you? https://connect.mayoclinic.org/discussion/bechets/

Richard, you've been living with Behcet's a long time. I'm glad the disease is largely stabilized with the exception of the neuropathy. Can you describe your neuropathy? Do you have numbness only or pain as well?

Jump to this post

Thanks Colleen.
My feet have pretty much lost all sensation and I get pain into them. My ankles feel frozen and unable to move but can as normal and my calves feel as though they are being squeezed in a vice. As far as pain it is mostly in my feet and shooting nerve pain from time to time in the calves.
There isn't much variation between the lack of feeling and discomfort day or night, hence poor sleep.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 26, 2021
In reply to @richardrr "Thanks Colleen. My feet have pretty much lost all sensation and I get pain into them...." + (show)
@richardrr

Thanks Colleen.
My feet have pretty much lost all sensation and I get pain into them. My ankles feel frozen and unable to move but can as normal and my calves feel as though they are being squeezed in a vice. As far as pain it is mostly in my feet and shooting nerve pain from time to time in the calves.
There isn't much variation between the lack of feeling and discomfort day or night, hence poor sleep.

Jump to this post

Richard, if you haven’t already, I suggest following the Neuropathy group https://connect.mayoclinic.org/group/neuropathy/

While neuropathy can’t be reversed, members share tips and tricks that might prove to be helpful for you.

REPLY
Chris, Alumni Mentor | @artscaping | Sep 26, 2021
In reply to @richardrr "Thanks Colleen. My feet have pretty much lost all sensation and I get pain into them...." + (show)
@richardrr

Thanks Colleen.
My feet have pretty much lost all sensation and I get pain into them. My ankles feel frozen and unable to move but can as normal and my calves feel as though they are being squeezed in a vice. As far as pain it is mostly in my feet and shooting nerve pain from time to time in the calves.
There isn't much variation between the lack of feeling and discomfort day or night, hence poor sleep.

Jump to this post

Good evening @richardrr. @johnbishop has invited me to get to know you and your neuropathy pain that appears to be in your feet, ankles and calves. And as @colleenyoung reminded us, there is not a cure waiting in the wings. We do have the opportunity to learn our "tips and tricks" from each other. As he may have told you, John Bishop has no pain with his small fiber peripheral neuropathy. I do. I have the same diagnosis that you do, complete with the tingle, tangles and pain.

I notice that my pain is not only in my feet and ankles but also in my thighs. That has been a tough area for me to control. I usually wake up with heaviness and bruising-type pain in my thighs. It is "heavier" if the barometric pressure is lower. If I just lie there for a while, it may subside enough for me to get out of bed and get going.

Here is what has been helping me get going for quite a few years now.
#1. medical cannabis......either a tincture or topical in dosages and component percentages selected for your issues.
#2. MFR.....myofascial release therapy twice a week to release restricted areas and prevent swelling. I don't think I would be driving without this form of treatment.

Have you heard from anyone about these two options? Let me know if you want additional information.
May you be free, protected, and safe from inner and outer harm.
Chris

REPLY
1 reply
richardrr | @richardrr | Sep 26, 2021
In reply to @artscaping "Good evening @richardrr. @johnbishop has invited me to get to know you and your neuropathy pain..." + (show)
@artscaping

Good evening @richardrr. @johnbishop has invited me to get to know you and your neuropathy pain that appears to be in your feet, ankles and calves. And as @colleenyoung reminded us, there is not a cure waiting in the wings. We do have the opportunity to learn our "tips and tricks" from each other. As he may have told you, John Bishop has no pain with his small fiber peripheral neuropathy. I do. I have the same diagnosis that you do, complete with the tingle, tangles and pain.

I notice that my pain is not only in my feet and ankles but also in my thighs. That has been a tough area for me to control. I usually wake up with heaviness and bruising-type pain in my thighs. It is "heavier" if the barometric pressure is lower. If I just lie there for a while, it may subside enough for me to get out of bed and get going.

Here is what has been helping me get going for quite a few years now.
#1. medical cannabis......either a tincture or topical in dosages and component percentages selected for your issues.
#2. MFR.....myofascial release therapy twice a week to release restricted areas and prevent swelling. I don't think I would be driving without this form of treatment.

Have you heard from anyone about these two options? Let me know if you want additional information.
May you be free, protected, and safe from inner and outer harm.
Chris

Jump to this post

Thanks so much Chris.
I'm sorry you are in the same situation. Fortunately my hips haven't been impacted as yet. I also notice that when the barometric pressure drops that the pain is worse, it also worsens my general joint pain which is a blessing from an auto immune disease.
I haven't tried medical cannabis as yet but am ready to find a doctor that specialises in it. I know the research so far doesn't show anything definitive but anecdotal evidence does. I haven't heard of MFR and will research it.
Keep well and pain free,
Best wishes,
Richard

REPLY
gonnadoit | @gonnadoit | Feb 26 10:16am

I have been on Humira injections biweekly and 10 MGM Prednisone a day for a number of years now. Insurance going to deny Humira again, so not certain what Rheumatologist is going to do. Probably Remicade infusions. Am tapering off Prednisone and am down to 2 mgm a day from 10 mgm a day. Just started getting very painful about a week ago and it is a slow taper. Been tapering since November. But am sore all over. Feel like have been on a nonstop workout binge. Body feels like a truck ran over it. Fatigue and brain fog as well. Anyone else?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 9 3:44pm
In reply to @gonnadoit "I have been on Humira injections biweekly and 10 MGM Prednisone a day for a number..." + (show)
@gonnadoit

I have been on Humira injections biweekly and 10 MGM Prednisone a day for a number of years now. Insurance going to deny Humira again, so not certain what Rheumatologist is going to do. Probably Remicade infusions. Am tapering off Prednisone and am down to 2 mgm a day from 10 mgm a day. Just started getting very painful about a week ago and it is a slow taper. Been tapering since November. But am sore all over. Feel like have been on a nonstop workout binge. Body feels like a truck ran over it. Fatigue and brain fog as well. Anyone else?

Jump to this post

Welcome, @gonnadoit. I moved your question about Bechet's and treatment to this existing discussion in the Autoimmune Diseases group so you can connect with members like i @richardrr, @spankytwo2 @mrmaid11 @senlw @jackie30 @mel66 @cheerfulheart and others living with Bechet's.

- Behcet's disease: Would like to connect with others https://connect.mayoclinic.org/discussion/behects-disease/

How are you doing with the prednisone taper?

REPLY
richardrr | @richardrr | Mar 9 6:19pm

I have dropped to 5mg per day. When I drop lower symptoms return.
I don't have a choice really.

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