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Scleroderma & Raynaud's UK (SRUK)

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Rheumatologist had just recommended another session of Iloprost. Does anyone know the minimum time you need to come off nifedipine as it is

creditcrunchie profile image
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so very cold I dread not taking the nifedipine prior to going to hospital. I forgot to ask the Rheumatologist this question. In Oct I had gone blue and it certainly wasn't this cold. I have normal blood pressure.

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creditcrunchie
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ecc1 profile image
ecc1

I have just had mine and still had all my meds.

good luck I hope it works for you

zenabb profile image
zenabb

We are asked by some doctors to DIMINISH the nifedipine on the same days as we are having Iloprost because they both dilate the blood vessels and both together can cause a drop in blood pressure. I have also found that I have less of the headache while having the Iloprost if I don't take the usual dose of nifedipine. Having said that I have also had it without diminishing the nifedipine.

creditcrunchie profile image
creditcrunchie

Thanks for the replies. Zenabb - when you do Illoprost without taking nifedipine - how many days before do you drop it off. In October they said a week but as I am doing the Illoprost to help repair a toe damaged by the low temperatures, I think if I leave it off for too many days prior to Illoprost treatment my toe will be in a greater mess. When the Iloprost is over I don't think twice about going straight back on nifedipine and I don't have any side effects. I know I am being a wimp about the prospect of days without the nifedipine but it really is my lifeline.

I took my nifedipine right up to the day of Iloprost. As another said; Nifedipine and Iloprost together can cause the blood pressure to fall too low. However, during my last Iloprost infusion my blood pressure rose to 199 over 99. The nurse was horrified and asked why i had not taken my Nifedipine. Everyone chorused together; " we aren't supposed to". so just take the advice to leave it off and see how your blood pressure does. It is checked every hour whilst on Iloprost so no harm should come. I take mine again the day after finishing the infusion. Good luck, I hope you benefit from the Iloprost.

creditcrunchie profile image
creditcrunchie

Thank you Romulus.

MFC911 profile image
MFC911

Hi,

Why would you want to come off the nifedipine?

I have had loads of infusions and never stopped taking it. They feed it to me while in hospital. I would check with your consultant and check again. To my knowledge there is no need to stop taking it at all.

Good luck. Regards. Mark.

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