Steroid for Raynaud's

[Deby177]

Can anyone help was with my reumatology yest have exhausted all forms of treatment for Raynaud's and done iloprost infusion with no help, hands are now really sore , want to try blast session of 4 weeks on steroids but I'm scared of side effects hate pumping more meds into my body, exhausted trying creams,gloves heat packs give up as well as MCT and IBS thankfully reumatology were great yesterday running mega list of bloods etc, fingers crossed might get more solid diagnosis with MCT any advice greatly appreciated

Deby

[Jacko37]

Hi, I am sorry that you are having problems with your raynaurds and feel your pain. Like you have tried all kinds of medication and they don't do anything except give me awful side effects. Iloprost is great for getting rid of ulcers but it does nothing for the raynaurds. I have tried steroids many times over the years and it really works for the inflamation and getting rid of the ulcers, I can't believe how skinny my fingers are! If it was down to me I would be on steroids all the time, they are about the only thing that I can take which don't give any side effects. The only problem is that as soon as I stop the steroids the soreness and swelling soon comes back. Good luck and I hope that you get some answers, take careX

[Deby177 in reply to Jacko37]

Oh I really appreciate your support, thank you, guess I was scared of weight gain,fluid building etc, but have been told 4 weeks will be ok either feel full of energy might have mood swings bad sleep. Ahahah

[Ilprost03]

Hi feel your pain,I know exactly what you are going through,I have been on sildenafil 50mg 3 times a day for 18 months it’s taken all the swelling down from hands and feet don’t get as many flare ups with raynaulds

[bearman in reply to Ilprost03]

I was put on Sildenafil last year for pulmonary hypertension. Not sure if it's doing anything for that, go back to the pulmonary unit next month, but it has certainly helped the Raynaud's.

[Deby177 in reply to bearman]

Tried that just nothing seems to help my hands are really embarrassing thank you, hope your appointment goes well.

[Midgebite21]

Have they tried giving you Botox. There is increasing evidence that Botox injections can help with the symptoms of Raynauds ( if injected into the hands at specific points). I remember it being talked about by one of the speakers at the SRUK conference a few years ago.

[Deby177 in reply to Midgebite21]

Thank you no that's one option hasn't even been discussed