[JoannaP79]

I have just discovered today that my lip biopsy confirms that I do have sjogrens! It took quite a while to get these results! What on earth are the options for this? My neuro symptoms are very severe now. I have spent so long trying to figure out what i had and kept getting taken off track.
Those with sjogrens, please tell me what is working for you. My main issues are neurological as opposed to the other stuff.

[madisongrrl]

SFN + Sogrens should hopefully grant you IVIG. Congrats on finding the cause.


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[janieg]

It seems odd to be congratulating someone on finding out they have a disorder, but that's what I'm doing. Hopefully some treatment will help!

[ElaineD]

Dear Joanna,

You will find the absolute best support for Sjogren's at the Sjogren's World Forum. It has been an absolute life saver for me.

Sjogrens World Forums - Index

Sjogren's has a host of neurological problems that can occur. Most people with Sjogren's have dryness and nothing else, so they learn to cope and continue as before. Many of us, however, have a host of organs/systems that are attacked by our Immune System. I have both profound peripheral neuropathy and Small Fiber Neuropathy, among other problems linked to neurological damage. I have lung damage, bladder damage, hearing problems and the list goes on.

Please join us at Sjogren's World.

Best wishes, ElaineD

[caroline2]

Originally Posted by JoannaP79

I have just discovered today that my lip biopsy confirms that I do have sjogrens! It took quite a while to get these results! What on earth are the options for this? My neuro symptoms are very severe now. I have spent so long trying to figure out what i had and kept getting taken off track.
Those with sjogrens, please tell me what is working for you. My main issues are neurological as opposed to the other stuff.

For me, I always FIRST go to functional/alternative remedies for Everything that has gone on in my body and that started when I was in my early 50's when I started to question drugs and think more about prevention. I'm 79 and with aging my eyes have been drying, but I use a few supplements to keep my eyes "wet". I don't have sjogrens but went right to alternative info:

Sjogren's --- Causes and Top 10 Natural Remedies

Hope you find your relief. C

[en bloc]

The best treatment for Sjogren's related neuropathy is IVIG. The dose for IVIG used for neuropathy is 3 times higher than that for an immune deficiency and more effective in treating the neuro complications.

With your positive lip biopsy, you should qualify for IVIG.

I'm so glad you finally got the lip biopsy done and now have an answer to the cause of your neuropathy. Now to start treating it more effectively.

Please keep us posted on your upcoming appts and new treatment plan.

[JoannaP79]

Originally Posted by en bloc

The best treatment for Sjogren's related neuropathy is IVIG. The dose for IVIG used for neuropathy is 3 times higher than that for an immune deficiency and more effective in treating the neuro complications.

With your positive lip biopsy, you should qualify for IVIG.

I'm so glad you finally got the lip biopsy done and now have an answer to the cause of your neuropathy. Now to start treating it more effectively.

Please keep us posted on your upcoming appts and new treatment plan.

En Bloc, there is no way I will be able to access ivig on the nhs, no way on earth. Despite the fact I am so very very unwell. I have been told I won't be able to access rituximab either because I'm seronegative.
I recall you took Cellcept at one time en bloc. That has been suggested to me. Can you remind me how it helped if it did help your neuropathy? I recall you had to stop it.
Another offer was to have enbrel. Ibgave bit read anywhere that enbrel cam help. They are saying this as my original AI illness is ank spondylitis and Enbrel is used for that

[en bloc]

The NHS does have strict criteria for use of IVIG, but this positive lip biopsy should open the door for you. Have they already told you that you won't get IVIG (after you have the new lip biopsy results)?? If so ,what is there reasoning?

Yes, I have also used Cellcept. It was helpful for some of the neuropathy symptoms and pain. However, I got a life-threatening infection and had to stop taking it. I have an immune deficiency, so this complicated my situation. Most people do just fine with Cellcept...so don't let my experience keep you from trying it.

I have not tried Enbrel, so have nothing I can add about this treatment.

Don't let the 'sero-negative' label keep you from getting proper treatment. Your lip biopsy just changed the outlook of that label. The lip biopsy is the gold standard for diagnosis...so holds a lot more weight than a blood test.

[bluesfan]

Hi Joanna,

I've been MIA for a while on Neurotalk, busy fighting another cause, but saw your post. Well done for battling for the diagnosis.

Just a quick link that might help you get treatment. I thought of Humira as some RA patients also with Sjogrens (my brother included) have found some improvement with the Sjogrens when taking Humira. Here's a link to a UK research group that might be able to tell you more: Sjögren's Registry - Welcome

All the best with the NHS.

Originally Posted by JoannaP79

I have just discovered today that my lip biopsy confirms that I do have sjogrens! It took quite a while to get these results! What on earth are the options for this? My neuro symptoms are very severe now. I have spent so long trying to figure out what i had and kept getting taken off track.
Those with sjogrens, please tell me what is working for you. My main issues are neurological as opposed to the other stuff.

[pinkynose]

May you get relief from new treatments that you are now eligible for due to you dx.