Hello i suffer severe raynauds .I have had illoprost infusion with no effect meds dont help.I worked outside so lost my job i dont go out

[tom-kenny]

i hate the pain it made me depressed im 39 so just want to no if anyone understands what im going through.thanks

[suzierwp330]

poor you i have resuntley been diagnosed raynauds phenomina ,still testing for lupus ect .havent heard of illoprost infusion what is it .?

[tom-kenny in reply to suzierwp330]

Hi illoprost is a drug which you have through a drip in your arm.It is not worth the pain 6 hrs per day for five days it made me so ill severe head aches its not worth it.I am now trying rectogesic cream applied to my finger because its pernamently cold .everyone is different so just keep warm and avoid attacks .i have secondary raynauds caused by havs make sure you get a good reumatologist sorry for the spelling.good luck and keep warm.

[suzierwp330 in reply to tom-kenny]

thanx sorry to hear you have so much pain .i have raynaudsin awfull pain in toes fingers and most of my joints ,carnt imagine how your feeling sounds pretty awfull .im copeing at moment but can tell daily its getting worse .not good is it ?

[RosemerryVenet]

To reduce the headaches with iloprost, I now have the drug going in at a lower rate. It takes longer, but I don't get the headaches.

[tom-kenny]

I started on a low dose 20 and increased by 5 through the day until i got to forty.Which i could not tolerate for long .Maybe thats what made me ill they wanted me to get as much as possible in the six hours.

[Yorky in reply to tom-kenny]

Hello, I have Ilioprost regularly. I start at 20ml, but only go up to 30ml as I weigh less that 75kg, this is often reduced to 25ml when I start to feel poorly. I have it for 6 hours once a month. I find that only having it monthly makes the side effects tolerable as it is only for a day. I thought that keeping at a tolerable level was the idea, not to get as much in as possible. I am assured that it helps and that I need it, but it is not a cure.

[Hidden]

Hi Tom.

Illoprost didn't do much for me either as I had severe Raynaud's, and I didn't get much higher than 20 on the infusion as I didn't tolerate it well.

What does seem to be working for me is being on high doses of Losartan and Nifedipine, which I've been on for over a year now. Before that, I was just on the Losartan, which only helped slightly. My ulcers are much smaller than they used to be (which is much more bearable). Although I still have Raynaud's attacks, even in the summer, I have not had any gangrene since my first attacks six years ago.

Whilst being on this combination of Losartan and Nifedipine, I haven't bothered asking for Illoprost infusions.

The Raynaud's will never go away, but it is easier to deal with now.

Perhaps you could talk to your Rheumatologist about combinations of medicine to attempt keeping the Raynaud's under control?

[msdeedee]

I have severe Raynaud's. My rumy reffered me to a pain clinic. I get Stellate Ganglion Injections in my neck. It help the pain as well helps improve blood flow to my fingers. I usually get 2 injections on my left side a week apart. Depending on the severity of my pain and blood flow determines how many times I go. This procedure saved one of my fingers. It had turned blue black cold with ulcers. Which is very painful..... as we all know. Hadn't had a an sever ulcer since I started these procedures in 2008.... til this last week which happened on the left hand pointer finger instead of the right. THis year is the first year that I had to have the procedures in the summer months, at first it was the fall and winter months. Any how these procedures help me a great deal. Maybe you can check with your rumy. Raynaud's makes a person depressed cause it can change your life style a great deal so I definatley understand that as well. Hang there you are not alone.

[msdeedee]

I have severe Raynaud's. My rumy reffered me to a pain clinic. I get Stellate Ganglion Injections in my neck. It help the pain as well helps improve blood flow to my fingers. I usually get 2 injections on my left side a week apart. Depending on the severity of my pain and blood flow determines how many times I go. This procedure saved one of my fingers. It had turned blue black cold with ulcers. Which is very painful..... as we all know. Hadn't had a an sever ulcer since I started these procedures in 2008.... til this last week which happened on the left hand pointer finger instead of the right. THis year is the first year that I had to have the procedures in the summer months, at first it was the fall and winter months. Any how these procedures help me a great deal. Maybe you can check with your rumy. Raynaud's makes a person depressed cause it can change your life style a great deal so I definatley understand that as well. Hang there you are not alone.

[living-the-dream-ssc-ray]

Hiya

Severe Raynauds has made me house bound for several years now over the winter months. Ive had 3 lots of Iloprost the last being 3 years ago - there is NO WAY I want that stuff ever again ! the side effects for me were horrendous ! i was the first person to have had the treatment at my local hospital oncology day ward and at that time the main priority was to to get as much in me as pos ! I still have nightmares about the horrendous headaches and genreal feeling of unwellness it gave me !

Unfortunately the alternative for me is that I have to stay at home and even then I am dressed like an eskimo wearing UGG boots and hand warmers! I have had a 6month dose of Bosentan which worked in that i do not have as many ulcers on my fingers or toes. However, you have to wait 6 months for the processing of a funding bid for the medication - so another year of my life waiting on medication ! I am now 38, I was 24 when all of this started, however it is the last 7 years whereby scleroderma and Raynauds has taken over my life completely.

I have tried Viagra which blew my head and turned my face the colour of a tomato with no amorous positive results either !

I could not tolerate the drugs which alter your blood pressure (the A2s, or ACEs) - just sent me light headed !

I am using PawPaw cream on my fingers and toes and I have to say, they do feel warmer from having used the cream! i think it must stimulate the vessels some way ! It has also worked on healing my ulcers !

I am now hoping to stimulate my circulation by having my hands and feet massaged twice a week, starting last week - I can feel the difference already with my toes in that I can sort of feel my feet and toes now ! Does anyone else have regular massages to help their circulation ? I have not heard of the Stellate injections but I will definitely be asking about them at my next appointment tho i do no want to appear that i am a junkie lol

[tom-kenny]

I also apply cream to my fingers and felt exactly the same with illoprost.Isuffered so bad last winter the pain was horrific.I suffered severe depression so i now take fluxetine 60 mg which helps my raynauds.I to stay in my home and rap up theres no alternative .good luck this winter and keep healthy god bless.

[Sienna]

I understand just how you feel. What I do in the winter here in Michigan is that I bought a good pair of mittens from Eddie Bauer's. They are good for temps at -58 below zero. Or you could always try putting hand warmers inside your gloves when you do go out. Good Luck. Now that my husband and I are retired we go down to Florida. What a difference the warm weather makes.

[tom-kenny in reply to Sienna]

Thanks i will go and purchase mittens today.Iwas told they work better because warm air circulates better around your fingers.Thanks again and to everyone else who took the time to answer .