[cat1234]

Just started seeing a new rheumatologist, and again despite Johns Hopkins not giving me a diagnosis, the blood work he requested has come back clearly positive for Sjogrens (ANA positive, SSA high, and C-3 low). So I have gone full circle and am back to Sjogrens as the medical cause of my neuropathy, joint pain and fatigue.

This new doctor wants me to start the classic Sjogrens protocol of plaquenil and gabapentin. I am also still on Tramadol, Synthroid and Linzess (newer constipation drug). For the worsening joint pain, he suggested methotrexrate. I declined due to side effects - apparently your liver needs to be monitored and if you get pregnant the fetus will be deformed. Those are a bit scary to me. Instead I am trying out OTC Alleve 2x a day - which is not helping at all yet.

Has anyone tried methotrexrate and if so what were the results/side effects?

Thanks!

[en bloc]

I have not tried Methotrexrate, so can't comment on that. But I wanted to suggest you try the Plaquenil and Neurontin first before adding an additional medication. Otherwise you won't know what works, what doesn't, and if you get side-effects, which medication caused it.

The Plaquenil can take months to be effective. It takes a good 60 days just to build up in the system, then time to work. So don't hope for any immediate results...because it won't happen.

I'm assuming the Neurontin for PN from the Sjogren's?? If you symptoms are getting worse after stopping IVIG, I would reconsider the IVIG (possibly) if you don't have good results from the Neurontin. This also takes time to build up to a therapeutic dose...not months, but weeks at least to find a suitable dose that doesn't make you a zombie in the process...

I'm curious why JH dismissed the lab work for Sjogren's? It appears classic for Sjogren's. Can you explain their logic?

[mrsD]

Methotrexate may be hard on the stomach over time. ( When it causes too much GI issues, then they move patients to injectable.)
Report any pain or bleeding, or vomiting to the doctor.
Many use it okay, though, but if you have borderline ulcers or chronic gastritis there may be issues.

And it will deplete folic acid...so you need to ask your doctor about what dose you should take with it.

Antirheumatic treatment is usually a certain number of tablets once a week only to avoid GI upsets.

[cat1234]

Originally Posted by en bloc

I have not tried Methotrexrate, so can't comment on that. But I wanted to suggest you try the Plaquenil and Neurontin first before adding an additional medication. Otherwise you won't know what works, what doesn't, and if you get side-effects, which medication caused it.

The Plaquenil can take months to be effective. It takes a good 60 days just to build up in the system, then time to work. So don't hope for any immediate results...because it won't happen.

I'm assuming the Neurontin for PN from the Sjogren's?? If you symptoms are getting worse after stopping IVIG, I would reconsider the IVIG (possibly) if you don't have good results from the Neurontin. This also takes time to build up to a therapeutic dose...not months, but weeks at least to find a suitable dose that doesn't make you a zombie in the process...

I'm curious why JH dismissed the lab work for Sjogren's? It appears classic for Sjogren's. Can you explain their logic?

That is a very good point about starting too many new drugs at once, especially if I have side effects. It will be difficult to determine which one is causing a problem.

Yes, the neurontin is for the Sjogrens related PN. I am unsure if the symptoms became worse after stopping IVig since I only had 6 infusions. Since I did not have a remarkable improvement my new neurologist decided not to renew my approval for it. I have not brought it up to the new RH but perhaps I should.

That is interesting that you mention the term zombie. I am totally exhausted today - more so than usual. Until I read your comment, I assumed it was a flare but perhaps it could be the new medication. Since the dosage is low (100mg) it did not seem plausible, but we all can be sensitive at differing amounts. I should know this by now!

Johns Hopkins performed a lip biopsy and it came back negative. They will not diagnose anyone with Sjogrens without a positive lip biopsy. Their wording in my final report was somewhere along the lines of while we cannot diagnose you with Sjogrens at this time, we cannot say you do not have Sjogrens nor that you may not develop it in the future. Helpful right?! Perhaps a politician runs the office!

[cat1234]

Originally Posted by mrsD

Methotrexate may be hard on the stomach over time. ( When it causes too much GI issues, then they move patients to injectable.)
Report any pain or bleeding, or vomiting to the doctor.
Many use it okay, though, but if you have borderline ulcers or chronic gastritis there may be issues.

And it will deplete folic acid...so you need to ask your doctor about what dose you should take with it.

Antirheumatic treatment is usually a certain number of tablets once a week only to avoid GI upsets.

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

[en bloc]

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?

[Dr. Smith]

Originally Posted by cat1234

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

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

[cat1234]

Originally Posted by en bloc

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?

[en bloc]

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?

[cat1234]

Originally Posted by en bloc

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?!!!