@jw9
Hi,
I have small and large fiber demyelination of nerves. I have numbness in the bottom of both feet and up my left leg. I have lots of pain. Hoping AZA helps me!
@med951
Yes. I hope that this helps you. I'm always learning so much on these support groups. Now I need to discuss with my neurologist, rheumatologist....etc.
Do you have any idea how long it might be before you see and feel any results?
Yes. It was just changed recently due to the hard work of Janet Church who is head of the Sjogren's Foundation. I have no idea why it was called a syndrome, perhaps because it was mainly a female disease and women are historically disregarded. Diane Donohue
@med951
Yes. I hope that this helps you. I'm always learning so much on these support groups. Now I need to discuss with my neurologist, rheumatologist....etc.
Do you have any idea how long it might be before you see and feel any results?
@jw9
Research said AZathiroprine takes months to show effect. I was told steroid is given with it for several months to speed up the process. I have not started taking it yet.
Hello everyone,
Has anyone been diagnosed with Scleroderma or Systemic Sclerosis?
I have Hashimoto's and Small Fiber Neuropathy as well. I have burning sensations through out my entire body but mostly my head, my mouth and my legs. So far nothing has helped my symptoms. Janet
Hello everyone,
Has anyone been diagnosed with Scleroderma or Systemic Sclerosis?
I have Hashimoto's and Small Fiber Neuropathy as well. I have burning sensations through out my entire body but mostly my head, my mouth and my legs. So far nothing has helped my symptoms. Janet
@jandy88us
Good morning,
No answers for you but I will share my experience. I was diagnosed with Hashimoto’s years ago. Prior to that and after I would get these sensation through my body that would literally move from place to place on and in my body. Face, tongue, arms, legs and feet. I had a thorough work up at Mayo year ago and they could find nothing. I was placed on Neurotin and took it for years . I don’t know if it ever helped much. Since the first couple of year it has come and gone and has occurred far less frequently. I stopped taking the Neurontin about 4 years ago. I have since been diagnosed with IGA Vasculitis and was started on Azathyoprine but could not tolerate it ( significantly raised my liver enzymes) so now on Mycophenolate.
I honestly think the sensations , which were awful and so difficult to tolerate were all intertwined with my many autoimmune issues.
I don’t have your autoimmune diseases but definitely diagnosed as autoimmune.
I wish you luck in finding help. I was so bothered by the sensations and then they would go away for a short time and return . It would bring me to tears. I think the stress and constant worry of its return didn’t help. I think I know exactly how you are feeling and hope in time in receeds or doctors may find something to help.
Wishing you the very best and may you experience some very good days soon.
Take care your feelings are real.
@jandy88us
Good morning,
No answers for you but I will share my experience. I was diagnosed with Hashimoto’s years ago. Prior to that and after I would get these sensation through my body that would literally move from place to place on and in my body. Face, tongue, arms, legs and feet. I had a thorough work up at Mayo year ago and they could find nothing. I was placed on Neurotin and took it for years . I don’t know if it ever helped much. Since the first couple of year it has come and gone and has occurred far less frequently. I stopped taking the Neurontin about 4 years ago. I have since been diagnosed with IGA Vasculitis and was started on Azathyoprine but could not tolerate it ( significantly raised my liver enzymes) so now on Mycophenolate.
I honestly think the sensations , which were awful and so difficult to tolerate were all intertwined with my many autoimmune issues.
I don’t have your autoimmune diseases but definitely diagnosed as autoimmune.
I wish you luck in finding help. I was so bothered by the sensations and then they would go away for a short time and return . It would bring me to tears. I think the stress and constant worry of its return didn’t help. I think I know exactly how you are feeling and hope in time in receeds or doctors may find something to help.
Wishing you the very best and may you experience some very good days soon.
Take care your feelings are real.
@jahmGoid afternoon,
I cannot begin to tell how encouraging it was to read your email! It sounds terrible but some how I feel relieved to hear I’m not the only one having these experiences.
My rheumatologist just prescribed me Mycophenolate. Have you experienced any side effects?
Thank you so much for your respond!
I pray you are feeling much better these days!
Janet😊
@jahmGoid afternoon,
I cannot begin to tell how encouraging it was to read your email! It sounds terrible but some how I feel relieved to hear I’m not the only one having these experiences.
My rheumatologist just prescribed me Mycophenolate. Have you experienced any side effects?
Thank you so much for your respond!
I pray you are feeling much better these days!
Janet😊
@jandy88us
Hi,
I would say that the Mycophenolate has helped to control the damage to my kidney ( I have only one as I donated one 30 years ago) but I do experience fatigue and sometimes a bit of nausea but all it all not bad. I was at Mayo in January and my IGA Vasculitis is in remission for now and hopefully a long time to come . I have not had those burning episodes or at least lasting or severe for about a year.
Stay positive, treat yourself well and remember the good days and know they are possible. At or a lot of prayer helps too!
Best wishes!!
@jandy88us
Hi,
I would say that the Mycophenolate has helped to control the damage to my kidney ( I have only one as I donated one 30 years ago) but I do experience fatigue and sometimes a bit of nausea but all it all not bad. I was at Mayo in January and my IGA Vasculitis is in remission for now and hopefully a long time to come . I have not had those burning episodes or at least lasting or severe for about a year.
Stay positive, treat yourself well and remember the good days and know they are possible. At or a lot of prayer helps too!
Best wishes!!
@jahm Thank you so much!
I started the Mycophenolate today! I’m praying for no side effects!
I’m so glad your IGA Vasculitis is in remission!🙌🏼
I appreciate your kind words!!
I just found out that it is no longer Sjogrens Syndrome. It's Sjogrens Disease. To bring more attention to the reality of all the body systems it affects. Also, no longer Secondary Sjogrens diagnosis. Now we all have Sjogrens Disease.
I read this on sjogrens.org
Was everyone else aware of this?
Anyone take azathioprine for Sjogrens neuropathy?
My Rheumatologist prescribed this 4 mo ago. Not sure what it’s supposed to do but there’s been no changes. Anyone have experience with this immunosuppressant?
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@med951
Yes. I hope that this helps you. I'm always learning so much on these support groups. Now I need to discuss with my neurologist, rheumatologist....etc.
Do you have any idea how long it might be before you see and feel any results?
Yes. It was just changed recently due to the hard work of Janet Church who is head of the Sjogren's Foundation. I have no idea why it was called a syndrome, perhaps because it was mainly a female disease and women are historically disregarded. Diane Donohue
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1 Reaction@jw9
Research said AZathiroprine takes months to show effect. I was told steroid is given with it for several months to speed up the process. I have not started taking it yet.
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Helpful -
Hug
1 ReactionHello everyone,
Has anyone been diagnosed with Scleroderma or Systemic Sclerosis?
I have Hashimoto's and Small Fiber Neuropathy as well. I have burning sensations through out my entire body but mostly my head, my mouth and my legs. So far nothing has helped my symptoms. Janet
@jandy88us
Good morning,
No answers for you but I will share my experience. I was diagnosed with Hashimoto’s years ago. Prior to that and after I would get these sensation through my body that would literally move from place to place on and in my body. Face, tongue, arms, legs and feet. I had a thorough work up at Mayo year ago and they could find nothing. I was placed on Neurotin and took it for years . I don’t know if it ever helped much. Since the first couple of year it has come and gone and has occurred far less frequently. I stopped taking the Neurontin about 4 years ago. I have since been diagnosed with IGA Vasculitis and was started on Azathyoprine but could not tolerate it ( significantly raised my liver enzymes) so now on Mycophenolate.
I honestly think the sensations , which were awful and so difficult to tolerate were all intertwined with my many autoimmune issues.
I don’t have your autoimmune diseases but definitely diagnosed as autoimmune.
I wish you luck in finding help. I was so bothered by the sensations and then they would go away for a short time and return . It would bring me to tears. I think the stress and constant worry of its return didn’t help. I think I know exactly how you are feeling and hope in time in receeds or doctors may find something to help.
Wishing you the very best and may you experience some very good days soon.
Take care your feelings are real.
-
Like -
Helpful -
Hug
3 Reactions@jahmGoid afternoon,
I cannot begin to tell how encouraging it was to read your email! It sounds terrible but some how I feel relieved to hear I’m not the only one having these experiences.
My rheumatologist just prescribed me Mycophenolate. Have you experienced any side effects?
Thank you so much for your respond!
I pray you are feeling much better these days!
Janet😊
@jandy88us
Hi,
I would say that the Mycophenolate has helped to control the damage to my kidney ( I have only one as I donated one 30 years ago) but I do experience fatigue and sometimes a bit of nausea but all it all not bad. I was at Mayo in January and my IGA Vasculitis is in remission for now and hopefully a long time to come . I have not had those burning episodes or at least lasting or severe for about a year.
Stay positive, treat yourself well and remember the good days and know they are possible. At or a lot of prayer helps too!
Best wishes!!
@jahm Thank you so much!
I started the Mycophenolate today! I’m praying for no side effects!
I’m so glad your IGA Vasculitis is in remission!🙌🏼
I appreciate your kind words!!
@jw9
Thanks for letting us know. Yes, Sjogren's DISEASE is a big deal! It creeps into so many things.
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1 ReactionAnyone take azathioprine for Sjogrens neuropathy?
My Rheumatologist prescribed this 4 mo ago. Not sure what it’s supposed to do but there’s been no changes. Anyone have experience with this immunosuppressant?