The doctor called today and suggested I try Mobic. What do you think about this NSAID??

The 'zombie' effect can occur at any dose, even low ones when you first start. It usually subsides after time, if you can hang tough for a bit. But then you will likely increase the dose and go through the same each time. That's why it's important to make note of the PN symptoms and if the med is helping. If so, then wait out the zombie side-effect. Hope this all made sense.

That's too bad about the lip biopsy keeping you from a positive Dx at JH. Mayo, JH and other large institutions are known for not looking outside the box in cases like this. But I'm glad you got a Dx anyway from your new Rheumatologist.

I will add that neuropathy caused by Sjogren's should be treated aggressively (especially in early stages) as Sjogren's can attack the dorsal root ganglia causing ganglionitis/ganglionopathy, which is permanent.

Do you have any autonomic dysfunction with your PN?

Oh yes, I do have autonomic issues - constipation, blurry eyesight in the mornings, extreme vaginal dryness, and complete lack of sweat.

When you say aggressive treatment, from what I understand there is no treatment. Just symptom management?

For most there is NO treatment. However, some research docs think that IF (and only IF) caught within the first year of onset, that aggressive treatment with immunosuppressives and monoclonal antibody--B cell treatment (Rituxan, etc) MAY (and only MAY) reverse damage already done.

After the first year (and earlier for some) damage is permanent and irreversible. Then it is, as you said, symptom treatment only.

I don't know how long you have been dealing with this, so that's why I tossed it out there for consideration. I am 18 years into this, so no possible chance for 'treatment' other then symptomatic relief.

Do you have any other autonomic symptoms...like BP, heart rate, temp regulation, etc?

I have been dealing with this for almost 3 years and it is very upsetting that none of my doctors mentioned any of these aggressive treatments. I did try prednisone in the earlier years but it made me CRAZY and I did not continue it for very long. At the time the doctor just said it would help temper the current flare.

This is the first I have heard of antibody--B cell treatment. I looked up Rituxan and it sounds like there are some very serious side effects. Have you heard Sjogrens success stories with it? Guess it is too late to try that out anyway since you said the first year.

My BP is extremely low but it is consistent. I am ALWAYS cold. No heart rate problems.

I do have to say this morning is pretty awful - this neurontin is making me so lethargic, grumpy and foggy. How is this supposed to be helping?!!!

There have been a few on the Sjogren's World forum that have tried Rituxan...with some success. But I don't know specific details of what they had wrong and what it helped. It's not something widely used yet as it's new for this purpose and very expensive (more so then IVIG). Not all get the whopper side-effects, yet others had a horrid time with the first infusion and didn't go beyond that.

I have never tried it, because I'm way outside that window and my doctor doesn't feel the risk from the infusion is worth the very low chance of it helping anything.

The neurontin can cause those side-effects. It may be hard to look aside from them but you need to see if it's helping the PN pain/burning at all. The side-effects sometimes subside after a bit. But if you have to increase the dose (which is LIKELY) then it will compound the side-effects until you get used to the medication.

I gave up as my three little boys warranted a mommy who could function all weekend. The neurontin really wiped me out but the burning in my feet is so bad right now I cannot go to sleep! If I had been on it for 4 days, would I have known if it was going to help or not? The pain was not much different on or off of it but I am wondering how long it would have taken to find out...

I take meloxicam (Mobic) on occasion as needed, as I can't take any other NSAIDs. I can't say it works as good/better than OTC NSAIDs, but it's better than nothing. I find it wears off after a few hours though—doesn't last the 24 hrs. dosing schedule.

Of course none of this has any bearing on how (well) it will work for anyone else.

Doc