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Discussion Starter · #1 ·
Hiya.. back from the Rheumy, bloods all ok:) but my raynauds is considered severe and have had my meds upped for that... if that doesn't work got to have the infusions over 3-5 days (6 hrs a day)....twice a year. Just wondered if anybody else here has had these? How are they and what can I expect?.. also got to start on a new drug to help protect my bones, when I know what it is I will pick your brains on that too....:rotfl:
Claire X
 

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yeah i've had the infusions for severe raynauds. Unfortunately they didn't suit me as they made me very sickly and dizzy :((i already have low BP and it shot down way too low) so i hope you have better luck!! :) Now they have got me on imuran for my lupus i've found the raynauds is getting better

Love Rachel
 

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Discussion Starter · #3 ·
I did check it out on the internet and it said could make you feel yuk... great!! My BP is currently 110/70 so low enough already...I am glad that the Imuran is helping the raynauds though... helpful to have info like that so I know there are alternatives.. thanks Rachel..:)
 

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hello

Ive had Iloprost for raynaulds to help warm me up. also been put on drug ramipril. Its just geting the right cocktail of drugs to suit you. They can give you antisickness drugs b 4 the IV . Also they can give it to you slowly if you dont feel to good.

Good luck take care

dixy
 

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I live in the USA and never heard of that drug. I have pretty bad Raynaud's which has been helped with Procardia (Nifedipine). It took awhile to get the dosage right, because it does lower your blood pressure. Been working for me for many yrs. Cathy
 

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Discussion Starter · #6 ·
Iam currently experimenting with the nifedipine dosage over the next couple of months whilst its cold......still getting pretty white and numb at the moment:(...I am a bit annoyed at taking more drugs so probably am a bad impatient, patient!! Thanks for everybody's input, appreciate that,
Claire XX
 

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Hi Claire, I have heard from someone else that the infusions do really help, but that it isn't pleasant. It helps to have it slowly. But it does really work so is worth it. Sorry you have raynauds so severely. I have it and it isn't pleasant.

Deb x
 

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Discussion Starter · #8 ·
Thanks Dixy... will definitely ask for an anti emetic if I feel sick as a pig!! Hoping to avoid it all by seeing my rheumy after I have had my heated gloves on next time.... so he doesn't realise!!! :lol:
Cathy.. I am supposed to be on 5mgs three times a day... but try and get by on twice a day, which is ok when it is hot hot hot, but pretty diabolical if its even chilly or I go to the supermarket..so might have to bow to the medics and up my dose soon...grrr
Deb..thanks for your lovely encouragement.... I guess it could be worse, so if I have to have them I will try. I am hoping that my good hand care will prevent ulcers and the Rheumy will back off... always had cold hands even before raynauds.....
Talk to you all soon..XX
Claire
 

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I had the infusions a couple months ago after raynoids almost cost me my finger. (Not to scare you my was very severe and my family doctor left it to long) I got severely sick while on it. They kept upping and downing it trying to get my body to accept it but it didnt work and I was pulled off 24 hours after starting it. They kept me in the hospital for an additional week and put me on a large cocktail of drugs. Methetrexate is one of the new ones and it seems to be working for the most part but like everything the side effects are there right along side it. I hope all goes well for you and I do hope that it works for you. I wish you all the best!
 

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Discussion Starter · #10 ·
Thanks Susieanne.. it is interesting that there have been mainly negative experiences with it... the thought of feeling so bad doesn't make me want to embrace this treatment...:( Hopefully if I can keep my hands in good shape, even with the Raynauds it won't be considered necessary.... heres hoping!!
 

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hi i havnt, but when i have been in patient at mri hosy, there i met a wonem that i now have made friends with, she as to go in every six months as her's is so bad, she gets hooked up on the monday and the line doesnt come down till the friday, and yes it drops her BP ,but i think she as to have it, i asked her how she feels when she as had it., she said like a nice glow all round me, bless her....xxx
 

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Discussion Starter · #12 ·
Thanks Lin, I am not sure I will have a choice in the end as my Rheumy tells me he only has five patients that have to have these as their Raynauds is severe enough to be risking their finger/toes health... and I am right up there with them, though have not developed ulcers at the moment... my whole hand goes white for quite long periods though which is concerning him.... not sure he listens to me saying...'but I have always had cold hands....'.. ah well I will keep being a bit difficult!! got to spice his day up:lol:
Claire XX
ps thanks for the feedback, greatly appreciated.
 

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clare i hope it all works out lovey, my friend dont have choice either, she as bits missing on fingers, its really bad, she was treated with sle for a while but with ehr its cant (sp) it sclerederma........ she is also of african origin..........as lots wrong bless............ so yes your right may not have choice, better to save all fingers hun ,all the best xxxxxxxxxxx;)
 
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