Venofer

[LanaCSR]

My doctor has finally prescribed me 5 iron infusions of Venofer for my RLS, each a week apart. I had my first one yesterday. Does anyone have experience with this and how soon they started to notice relief?

[Graham3196]

Note Doctor Buchfuhrer stated the following "You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients. Make sure your doctor understands this point."

I dont know why he says that only the above two are beneficial to RLS patients.

It took about 12 weeks for my infusion to have an effect and this is apparently a long time. Some people feel the benefits on the same day but I have read that about 6 weeks is common.

I have seen that Venofer is referred to as if it's an "old fashioned" infusion in a paper dated 2009 where the benefits of the newer infusions are described. ncbi.nlm.nih.gov/pubmed/192...

Perhaps you could ask Doctor Buchfuhrer directly if Venofer is ineffective for RLS or if it is just very inconvenient since it requires five infusions and Injectafar only requires one infusion. There would seem to be no point in continuing the infusions if they are ineffective against RLS.

[LanaCSR in reply to Graham3196]

Thank you for the info. I have sent an email to Doctor Buchfuhrer to ask about this.

[Graham3196 in reply to LanaCSR]

It will be interesting to see what he can tell us about this.

[LanaCSR in reply to Graham3196]

I will post his reply.

[LanaCSR in reply to Graham3196]

Here is Dr. B's reply: Venofer does not work as well as Injectafer which is why it is necessary to give up to 5 or more infusions on a weekly basis. However, you should get a similar response after the 5 infusions as you would with one Injectafer infusion (which is obviously much less bothersome).

[Graham3196 in reply to LanaCSR]

thanks its a little more info for us.

[Svengolly in reply to Graham3196]

Venofer is effective . My iron / ferrriten shoots up every time . The 1st 100mg ended my rls within two weeks .

[Graham3196 in reply to Svengolly]

That's great news. Its really encouraging to all of us to hear about a successful infusion. How do we get through to "authorities" that it is much cheaper to provide iron infusions as a first attack than provide a lifetime of pretty awful drugs. I don't even know what the process to ask the government to provide this is in Australia. I think I have some homework to do. I don't have much hope but I have to start somewhere.

[LotteM in reply to Graham3196]

I agree wholeheartedly with Graham.

[Svengolly]

i had really bad rls ... vaporized two weeks after venofer infusion .

[LanaCSR in reply to Svengolly]

Is vaporized a good thing?

[Svengolly in reply to LanaCSR]

Unless u enjoy rls ... vaporized is very good indeed ;>

[LanaCSR in reply to Svengolly]

That is awesome!! How long did it last?

[Svengolly in reply to LanaCSR]

Years so far .

[LanaCSR in reply to Svengolly]

OMG really??? I hope I get the same result!! I am so happy for you! Did you have a series of 5 infusions a week apart?

[Svengolly in reply to LanaCSR]

Yes . Btw if needles scare you as they did me . They are very good at it now .. barely felt it . I reco hi up opposite elbow. // 1st time they are supposed to start slow to make sure not negative reaction ... but nurse told me out of hundred of iron infusions .. never saw any adverse reaction . So take your ipad & headphone relax and enjoy .. 20 minute break