It's sjogrens!!!
 

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.

SFN + Sogrens should hopefully grant you IVIG. Congrats on finding the cause. [emoji3]


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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!

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

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

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

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.

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. :rolleyes:

Dear Joanna
 

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

Thank you all for your wonderful replies. Despite diagnosis I feel absolutely neglected in no mans land like most of us in this country. My rheumatologist has nothing of worth to say at all possibly because I have proven her wrong despite her insistence I did not have it. She just will not discuss sjogrens with me despite serious neuro problems. They don't have a clue over here. A lovely sjogrens specialist didn't have much to offer either in the way of specific advice for treatment, aside from try 'immune suppression'.

They will absolutely not offer IViG on nhs unless you have specific conditions - this not included. They won't offer rituximab unless part of a clinical trial and seropositive only. I am trying to identify any people with seronegative neuro sjogrens who has had Rituximab with any success. If there is anyone out there in this position please let me know. I am told they believe seronegative types do not have B cell proliferation like seropositive do. Is there any evidence for this. I can't find anyone who tried rituximab successfully in seronegative group.

Thank you for your comment ref Humira! I feel very cautious with biologics but have decided to get on embrel as the A.S is playing up and I'm being directed to nothing else bar plaquenil. My experience here in the U.K is of absolute ignorance as to how to try help. They offer the Enbrel as they suggest helping th A.S may help the sjogrens. I have to try this but feel like they are stabbing in the dark.

I emailed Dr Birnbaum, the expert in the U.S, today. He kindly replied but can't advise me without being a patient. I know I'm like a dog with a bone on this one but I will not accept they are doing all they can to help us in the U.K. They simply are not. I hoped Dr Birnbaum would advise as to exactly what they would suggest trying in order of priority treatment wise for us with neuro sjogrens.

I'm so sorry you are in this position. You obviously need help and an effective treatment program.

Dr. Birnbaum has been my physician for almost 10 years. I know he would have so much to offer you, but of course, he can't 'advise' someone that is not his patient. That being said, maybe try contacting him again to see if he will work with your physician...by phone. I have heard of some doctors doing this long distance...through the patient's own doctor. I don't know if your doctor will participate, though. What do you think? It would be a consult between the two doctors vs you and Dr. Birnbaum...but you might be able to get him to participate and get the benefit of his expertise. I think the only problem would be to get your doctor to participate.

Immune suppression is certainly worth considering...since you have no other options. Cellcept is worth trying. I found it helpful for the short term I took it (until I got an infection due to another cause). It's better than nothing!!

En bloc I’ve got to agree with Joanna on this sadly. As you know I too have seronegative Sjögren’s and have been told by two neurologists, a vascular doctor and the UK’s main Sjögren’s specialist recently that IViG wouldn’t be a consideration for us. I told her that I come here and the Sjögren’s World forums and know that people with SFN relating to Sjögren’s in US have benefited from IViG. She looked surprised and said it is a terribly expensive and scarce resource and even those with GB and CDIP only get a few infusions and then would be switched to an immunesuppressant such as Cellcept. So it’s a non starter for us I’m very sorry to say. I don’t think Cellcept is doing anything for my neuro symptoms but it has helped my arthralgia/ inflammatory arthritis I think.

This is why I offered other options...like the Cellcept. Or doing the phone consult with Birnbaum (if he and her doctor would even participate). You may not have gotten much benefit from Cellcept, but you are still taking it, so it must be doing something good. She has A.S., so this may help that as well. And I did have positive benefit to neuro pain/symptoms when I tried it for several months before having to stop due to the infection (caused by a different issue). Certainly worth trying!!

I wonder if the US went to a national health system, like the UK whether we would no longer be offered the treatments we get now? Scary thought as the US tries to get a handle on it's health care crisis. I fully believe that your doctors in the UK know (without a doubt) that these treatments are effective. There is so much data on this...and GOOD doctors read up on new treatments (and IVIG has been used for this for YEARS). It comes down to money and NHS can't offer treatments like this. My IVIG costs about $32,000 USD a treatment each month!!! I'm sure it would be hard for a doctor to tell a patient that there is an effective treatment, but they can't have it.

It’s a hard one isn’t it. I mean I’m sanguine enough still to know that there are treatments that may have helped me a lot and IViG is the main one but Rituximab is another - and I nearly got this, but then they withdrew the suggestion quickly when they read my neurologist’s letter saying that no there would be no effective treatment for my SFN unless it was effecting my CNS.

I told the UK specialist that I had sat on a neuro ward waiting for my lumbar puncture while 3 people had their infusions for rare forms of CIDP - describing to each other and to me, symptoms really a fraction as severe as mine. She looked very doubtful that this was so in the UK - but I’m no liar! And furthermore they had all been having infusions for years! So Scotland must have been different in its approach at some stage but all is now focussed on the more common diseases such as cancer and diabetes and money is being set aside to tackle mental health. No disrespect to any of these plans for health expenditure of course but prioritising these comes at a price. And people like Joanna and I are the price sonit seems. And I think the UK expert knows this and was conveying it to me as diplomatically as she was able to. And was more honest than my NHS team in Scotland about the money but also said in her letter that at least some of my numbness and other stuff is due to existing damage that can’t be undone. And I do feel bitter and angry about this yes!! Maybe if I’d been offered Cellcept a lot earlier this wouldn’t have occurred. Certainly I felt immediate benefit from Imuran but it gave me pancreatitis as you may recall. Now the pain is mostly gone and I have numbness which I’m sure could have been avoided if I hadn’t suffered a while 18 months of excruciating nerve pain.

Steroids helped a lot too but they weren’t a long term solution and the wretched little rheumatologist I saw in Fife said my antibodies and Schirmers were all fine so I didn’t have a connective tissue disease at all and he took me off steroids and just left my nerves to ferment! Six months later in another hospital bingo! ANA a strong positive, IgGs raised, lip biopsy 100%.

Dr P said it was a real shame I didn’t have my RA symptoms back as RA would meet the criteria for Rituximab whereas she can’t get this anymore even for seropositive patients so I agree that AS would be a better bet for Joanna than Sjögren’s for accessing biologicals. But it would need to be confirmed as active and erosive. And I doubt that your Birnbaum could persuade a UK hospital trust to administer IViG even if Birnbaum spoke to her UK rheum or neurologist.

This conversation has at least galvinsised me to get touch with my neurologist next week. I can’t just keep turning increasingly numb while the doctors keep telling me that there are no more treatments for me now. I think the Cellcept did work on my joint pain as my groin pain has gone and not recurred and pain in knuckles too. And my hypertension did improve for 8 months so the blood disappeared from my pee. So perhaps they are just using it as a deterrent against renal or other organ involvement as they seem to want me to stay on it at the highest dose.

But my neuro symptoms are definitely progressing without a shadow of a doubt as I describe in yesterday’s post here. I feel like the fall guy :mad:

I wasn't thinking Dr. Birnbaum would try to "persuade" her doctors to use IVIG...never crossed my mind. He likely knows the limitations of the NHS funds for treatments and that they don't allow it. They certainly may discuss the treatment in general, but Dr. Birnbaum has used many biologics (different types of immune suppression drugs) and may have something else to offer her doctor as an option. Dr. Birnbaum does mostly research (only sees patients ONE day a week)...and therefore has knowledge on anything new...and experience on older treatments that may not be used as often now (but might be good in her case with the AS).

It is quite common nowadays for doctors to phone consult with other physicians...even in other countries. Of course, they cannot talk to patients directly, but the consults are between the physicians...on a professional level.

Well I really hope that this works out somehow for her and maybe, selfishly, I too might benefit. Also I’ve just learned from someone that Addenbrookes Hospital in Cambridge - are looking for people with autoimmune neurological problems to trial IViG on I think. I will message Joanna about this. It’s too far away for me to benefit from but I plan to tell my neurologist about all this on Wednesday and hope she doesn’t do what everyone else has done so far and look at me with total disbelief and poo poo the idea.
flatly. It’s clearly all about money and us not being a priority. If they concede that IViG or Biologics might help us then that’s a very expensive concession so it’s easier for them to lie and say there’s no evidence that it will work and make me feel like a numpty for even suggesting it as a possibility for treating SFN!

If they are doing a trial, then they obviously know the benefits!! Maybe even if you can't get on this trial, it will open doors for you down the road with their results of the trial. Stay in contact with them about the trial...so you have any info about the results, etc.

If they are doing a trial, then they obviously know the benefits!! Maybe even if you can't get on this trial, it will still open doors for you down the road with their results of the trial. Stay in contact with them about the trial...so you have any info about the results, etc.

I did look into it but I think they are looking for people with demylenating autoimmune neuropathies. Hoping I’m wrong.

I’m starting to wonder if mine is progressing to my large nerve fibres now because of a different non painful parasthesia in both arms from shoulder to finger tips. It just doesn’t feel the same as previous experiences of SFN. I posted here but no replies yet!