something for someone who has tried everything

[Guest guest]

My friend has severe back pain from multiple causes, including arachnoiditis

following a failed back fusion (as well as various other severe pain situations

in her body). She is on very high dose neurontin (probably so high that you

have never heard of that high a level being used).

She is on very high dosages of multiple opiates and has a pump. She doesn't

tolerate the spinal stimulator she tried a few years ago or NSAIDS (developed an

ulcer). She doesn't tolerate muscle relaxers and hasn't tolerated anti

depressants in the past.

Her pain is getting worse recently in her back and elsewhere after she started

IVIG (she has an IgG deficiency). She is trying to figure out what to do -- so

far, increasing neurontin helps most, but her unheard of high levels can't be

increased forever and there might even be danger from the level she is on now.

She has a very good pain doctor, but I said I'd look around and see if there was

something new out there -- maybe even experimental, that she could consider if

he can't help her enough (which seems likely).

I don't think steroid injections are considered possible now, with her poor

immmune system status.

Thanks for any suggestions.

Joyce

PS BTW, anyone else on very high levels of neurontin and if so, how much?