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Old 06-14-2014, 01:19 PM #11
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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.
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Old 06-15-2014, 09:46 PM #12
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Quote:
Originally Posted by en bloc View Post
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...
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Old 06-15-2014, 11:14 PM #13
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Four days isn't very long, not to mention that the dose is typically increased until you find the right level and pain relief. I would think if it was going to help, you might have had SOME sort of sign...but on that low of dose, you may not have.

I would call your doctor back and discuss your side effects and ask for his/her opinion. Your side-effects are typical at the start, but it may not be appropriate for you to continue with children to watch...if it affects you this much.

Many of these medications have these types of side-effects. I took Neurontin for a few years but eventually maxed out on dose and still had pain. I could not take Lyrica due to the zombie effect and Cymbalta was just a horrid experience.

You may do better with some of the supplements MrsD suggests. Have you tried any? What about Rx Lidoderm patches? Biofreeze?

Maybe your doctor will have a better suggestion.
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