I started on AZA about 2 mo ago for sjogrens neuropathy. MD wants monthly bloodwork, which has all been OK so far. Nothing for me has changed. Im not sure what changes to look for!
Good luck.
Would you be able to tell me what kind of neuropathy? Feet, lower legs? I have a very strong nerve reaction on my upper back and wondering if it could be related to 30 years-plus of Sjogrens diagnosis.
I told my rheumatologist I had intermittent buzzing of my lower legs and feet. Do you know what he said?! Oh, you're having some neuropathies.
I started on AZA about 2 mo ago for sjogrens neuropathy. MD wants monthly bloodwork, which has all been OK so far. Nothing for me has changed. Im not sure what changes to look for!
Good luck.
@med951
Do you tolerate the AZA well? Could you share what side effects you are experiencing and were you prescribed a steroid to take with it?
Thank you for your reply.
Would you be able to tell me what kind of neuropathy? Feet, lower legs? I have a very strong nerve reaction on my upper back and wondering if it could be related to 30 years-plus of Sjogrens diagnosis.
I told my rheumatologist I had intermittent buzzing of my lower legs and feet. Do you know what he said?! Oh, you're having some neuropathies.
My neuropathy is in my feet and progressing up my legs.
I have nerve disruption in my upper back that feels like itching. It has been my dermatologist that has defined it as a nerve issue, but I have not investigated it as Sjogrens related yet.
I suggest you get tested by a neurologist for nerve activity on your feet and legs. I was recently tested and unfortunately my nerve are pretty much fused. I hv Sjögren's, Vasculitis and autoimmune neuropathy, just to mentioned the ones that most hv affected my quality of life. Get tested before your nerves are damaged beyond repair. Good luck🙏
@med951
Do you tolerate the AZA well? Could you share what side effects you are experiencing and were you prescribed a steroid to take with it?
Thank you for your reply.
@azd
Hi.
I have not had any side effects from AZA 30mg. I always take it with food.
I am not taking a steroid with AZA. It’s been about 3 months and I can honestly say I’m not sure if I should feel different but I don’t.
Would you be able to tell me what kind of neuropathy? Feet, lower legs? I have a very strong nerve reaction on my upper back and wondering if it could be related to 30 years-plus of Sjogrens diagnosis.
I told my rheumatologist I had intermittent buzzing of my lower legs and feet. Do you know what he said?! Oh, you're having some neuropathies.
@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!
@azd
Hi.
I have not had any side effects from AZA 30mg. I always take it with food.
I am not taking a steroid with AZA. It’s been about 3 months and I can honestly say I’m not sure if I should feel different but I don’t.
I suggest you get tested by a neurologist for nerve activity on your feet and legs. I was recently tested and unfortunately my nerve are pretty much fused. I hv Sjögren's, Vasculitis and autoimmune neuropathy, just to mentioned the ones that most hv affected my quality of life. Get tested before your nerves are damaged beyond repair. Good luck🙏
@lavasthi
I'm sorry to hear this. I have a neurologist and I think it's time to talk with him. My rheumatologist really just wrote me off about this and it wasn't like him. There's always a lot to cover in those appointments so I let it go.
It's only because I'm hearing here from others who are experiencing neuropathy that I'm learning I'm not alone.
Thanks and good luck to all of us!
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?
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I started on AZA about 2 mo ago for sjogrens neuropathy. MD wants monthly bloodwork, which has all been OK so far. Nothing for me has changed. Im not sure what changes to look for!
Good luck.
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2 ReactionsWould you be able to tell me what kind of neuropathy? Feet, lower legs? I have a very strong nerve reaction on my upper back and wondering if it could be related to 30 years-plus of Sjogrens diagnosis.
I told my rheumatologist I had intermittent buzzing of my lower legs and feet. Do you know what he said?! Oh, you're having some neuropathies.
Like I expected it?!
@med951
Do you tolerate the AZA well? Could you share what side effects you are experiencing and were you prescribed a steroid to take with it?
Thank you for your reply.
My neuropathy is in my feet and progressing up my legs.
I have nerve disruption in my upper back that feels like itching. It has been my dermatologist that has defined it as a nerve issue, but I have not investigated it as Sjogrens related yet.
-
Like -
Helpful -
Hug
1 ReactionI suggest you get tested by a neurologist for nerve activity on your feet and legs. I was recently tested and unfortunately my nerve are pretty much fused. I hv Sjögren's, Vasculitis and autoimmune neuropathy, just to mentioned the ones that most hv affected my quality of life. Get tested before your nerves are damaged beyond repair. Good luck🙏
-
Like -
Helpful -
Hug
1 Reaction@azd
Hi.
I have not had any side effects from AZA 30mg. I always take it with food.
I am not taking a steroid with AZA. It’s been about 3 months and I can honestly say I’m not sure if I should feel different but I don’t.
-
Like -
Helpful -
Hug
1 Reaction@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!
-
Like -
Helpful -
Hug
1 Reaction@med951
I appreciate your replay. Thank you
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Helpful -
Hug
1 Reaction@lavasthi
I'm sorry to hear this. I have a neurologist and I think it's time to talk with him. My rheumatologist really just wrote me off about this and it wasn't like him. There's always a lot to cover in those appointments so I let it go.
It's only because I'm hearing here from others who are experiencing neuropathy that I'm learning I'm not alone.
Thanks and good luck to all of us!
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?