Disappointed

Well the iron infusion didn't work as well as I expected...I had no trouble going from

900 mg gabapentin to 600 mg at 9 pm but when I tried to go down further to 300 mg., after one night the creepy, crawly kicks came back 😰. I sent the doc a message and he said then I still need to take 600.

I really had high (or at least higher) hopes that the infusion would work better. I'll see him again on June 20 so maybe he can come up with a new game plan.

10 Replies

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  • That's very disappointing for you Grammie12. Like you, I was really convinced it would work completely. Maybe it is also a little bit of withdrawal from the Gabapentin? It can cause "seizures" if you withdraw too quickly. I'd like to think it's an unusual reaction to gaba than the Iron infusion failing. I'll keep my fingers crossed that the creepy crawlies stay away & you can reduce the meds.

  • Thanks. I might try again. I never thought of that possibility.

  • That is disappointing. Maybe your feratin level dropped too low again?

    I'm being hopeful for both of us as my first infusion is today.

  • Good luck!

  • Sorry the infusions didnt seem to work. Did you feel as if you got any relief from them..? I know some have had up to 3 infusion over a period of time. i think its every 3 months but dont quote me on that time scale. If you think you got no relief from your first one, then probably not the reason for your RLS. You should be tested for your ferritin level again to see what the number is now, after the infusion. It may have reached a good level but didnt help your RLS. I am mostly thinking out loud here, i am no expert.

  • My doctor has me getting 5 infusions in a 11 day period. The first one was a doozy and really made me nauseous. However I feel like my rls is a bit better. I'll keep you all apprised!

    I've started the fodmap diet at the same time.

  • Crossing my fingers for you.

  • And mine for you! One way or another we'll get through this!

  • I was tested again, 2 months after the infusion. My ferritin had jumped from 70 to 615.

    I have been able to cut down on the gabapentin, just not as much as expected.

  • So disappointed for you Grammie.

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