Quote:
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!