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Worsening Raynaud's despite Nifedipine Options
Naomi1
#1 Posted : Saturday, September 17, 2011 9:34:40 AM Quote
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Hello all
Can anyone offer me any advice from their personal experiences of secondary Raynaud's phenomenon. I developed this condition along with my first flare up of inflammatory arthritis in April of this year at age 46. Initially it was severe with up to 15 attacks a day and 3 excruciating finger ulcers and all this was happening over the course of a heatwave! I was prescribed 3 x 5mg/day Nifedipine by my GP (to add to my mini-pharmacy at home) and the condition improved over the next few months so that I was only getting one or two attacks per day and the ulcers slowly healed. My forefingers and middle fingers on both hands are permanently cold to the touch and now that the cold weather has begun I find the attacks are increasing in frequency. My fingertips are really sore and fiddly tasks are becoming painful and difficult. I find that it's not only handling cold items that triggers it but even standing in a breeze or even going from a hot to a warm room. It is really interfering with my work and that stresses me out because I want to stay in my job and I am so terrified of getting ulcers again. It is a huge irritation on top of everything else I'm trying to cope with. Any advice would be gratefully received.
Best wishes to everyone on this forum. I don't know what I would have done without you all over these last months. Actually I do......I would have felt a lot more isolated and frightened and far less hopeful. So Thank you all.

Here is a picture of my Raynaud's. Sometimes it can be one finger, sometimes more but never the thumbs for some reason.

http://imageshack.us/pho...ctivetissuedisorde.jpg/
philhughes
#2 Posted : Friday, September 23, 2011 12:57:07 PM Quote
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I would try asking your GP or rheumatologist about an Iloprost infusion. Means a short stay in hospital on a drip.
Naomi1
#3 Posted : Friday, September 23, 2011 6:03:02 PM Quote
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Thanks Phil. I have not heard of this before and will enquire about it. I have already had 5 episodes today even though I'm on the full dose of Nifedipine and am taking measures to keep warm and wear gloves etc.....goodness knows what it'll be like in the Winter. I am so worried about getting ulcers again as they were really painful and debilitating. My fingertips are really sore so I don't think the ulcers are far off.
Rose-B
#4 Posted : Friday, September 23, 2011 6:46:05 PM Quote
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I have no knowledge at all but does not sound very nice. Phil advice sounds interesting


Rose
Julia17
#5 Posted : Friday, September 23, 2011 9:43:56 PM Quote
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Hi Naomi

Crikey I never realised just how awful Raynauds could be ! I have it in the winter when out in the cold, but have felt that since the start of RA it has diminished a little.

I am really sorry that I can t give you any constructive thoughts, however Phil's advice sounds very promising. Hope you get some respite soon especially as the colder weather is coming along.

Julia x
philhughes
#6 Posted : Sunday, September 25, 2011 6:43:36 PM Quote
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Naomi1 wrote:
Thanks Phil. I have not heard of this before and will enquire about it. I have already had 5 episodes today even though I'm on the full dose of Nifedipine and am taking measures to keep warm and wear gloves etc.....goodness knows what it'll be like in the Winter. I am so worried about getting ulcers again as they were really painful and debilitating. My fingertips are really sore so I don't think the ulcers are far off.


You can find a lot of information online, for example:

http://www.raynauds.org....is-an-iloprost-infusion

I've never had one, but have discussed it with a specialist nurse. Apparently for some people they are really good and can last for months, but for others they can be fairly ineffective. Your picture looks very familiar:) I find the fingertips get sore before the ulcers appear, so yes they are probably not far away:( I find that I am only really free of the effects during July and August. Good luck.
jenni_b
#7 Posted : Sunday, September 25, 2011 6:47:50 PM Quote
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Hi

Just to second what Phil is saying about the infusion.

Several people came into Bath hospital for rheumatic diseases when I was there for these infusions.

I have to be honest, they didnt feel too great having the stuff but then they perked up very quickly and it kept them going for months and months inbetween.

The other thing is that the OTs did a lot of work with them wearing gloves and foot wear to keep the heat in.

There were people there with very very severe illness who had had a lot of amputation and yet still did well once they were on this treatment.

I hope you do well on it.

Jenni xx
how to be a velvet bulldoser
Dorothy-W
#8 Posted : Monday, September 26, 2011 8:49:19 AM Quote
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Location: east anglia
i sufffer from raynauds and didnt realise just how serious it can be no one has told me much about it,only to keep my digits warm,i am dreading the reall winter myself,thanks for the information and good luck in getting help
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