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Constant Raynauds


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#1 Clementine

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Posted 14 May 2008 - 11:32 PM

Hello everyone!
I have had constant Raynauds attacks since I've been here in London. What is weird is the humidity here is lower than where I live and it's been great weather in London. We're talking 70s and sunny. My o2 has been at 99 and 100%!!! I just think it is weird. I've been extremely tired from all of the walking so maybe it's just the "vacation" making my Raynauds worse...or not having my heating pad.

My husband thinks it is because I do not have my supplemental oxygen, but my o2 is fine here. What do you all think?

xo,
Tangelo

#2 Sheryl

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Posted 15 May 2008 - 12:19 AM

You made it to London with your husband finally. So glad you are there and enjoying yourself. Maybe if you used the oxygen while sleeping you wouldn't have the raynauds attacks during the day. It is strange that you are having these attacks. Are you wearing a pair of light weight gloves? You keep having trade offs in the different states and countries you live in. I hope you find something that helps prevention of these attacks. Enjoy your stay with your hubby. Have your puppies arrived there yet? All the exercising and walking should help build up your lung capacity and stamina. You go girl.
Strength and Warmth,
Sheryl

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#3 CFMBabs

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Posted 15 May 2008 - 12:50 AM

Welcome to the UK!

I live in northern England and yes! the weather has been rather pleasent of late although I have to admit that I've had constant Raynauds attacks too.
My specialist has just put me on a drug called Losartan and I've taken just a few so I can't really say if they are working or not!

Are you registered with Royal Free Hospital? Professor Carol Black is a sclero specialist there and they also have a great team of support nurses. Perhaps it would be beneficial for you to join The Raynauds And Scleroderma Association, I could give you the details if you wish?

Anyway, take care and I hope us Brits are treating you and your hubby well!

Best wishes
Barbara xxx

#4 lizzie

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Posted 15 May 2008 - 01:17 AM

Hi Jen, I find that m Raynauds is usually as bad in the summer as the winter- if not worse. the slightest breeze sets it off.

Barbara: I started taking Losartan in March,( they must have al lbeen reading th same resaerch paper!) In addition to 120 mgs of nicardipine a day and 8 weekly Iloprost infusions. I feel the Losartan has made a big difference - I have stopped the Nicardipine for the moment ( haven't told my rheumatologist yet!) and the attacks are still less than they were so conclude that good effect is due to the Losartan. Another bonus is that I haven't noticed any side effects.
Lizzie

#5 Buttons

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Posted 15 May 2008 - 01:39 AM

Welcome to England Jen. We have been having some warmer weather than usual for this time of year but I live on the east coast so get some cold winds even in the summer so I'm still getting Raynaud's attacks and have to make sure I have gloves on all the time.

Hope you've settled in and enjoying your stay here in England. If you need any sort of help/advice you just need to ask and I'm sure someone will help if they can.

Jensue

#6 barefut

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Posted 15 May 2008 - 02:42 AM

Hi Jen,

I know stress can cause Raynaud's attacks. Maybe adjusting to a new place and all your concerns about your babies and the move has something to do with it?

Miss you,

#7 Guest_Sadie_*

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Posted 15 May 2008 - 02:18 PM

Hi Jen, I hope your raynauds attacks go away! Like Sheryl said, make sure you wear gloves. Sometimes, I wear them at bedtime too so that my hands don't get so bad.

I hope you get settled in and have fun in England!
Sadie

#8 Clementine

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Posted 17 May 2008 - 03:31 AM

Thanks Ladies! I am back in Arkansas now so we'll see how my Raynauds acts. I'll check into that drug you all recommended. I briefly read a little about it...causes fetal cell issues but that isn't a concern for me anyway, but it kind of sends a red flag. I hate meds, but I also love them :(. Actually, before I start a new med, I think I could increase the Norvasc 2/5mgs.

Dog babies didn't go with me this trip as their six month wait won't be up til Nov.1

For all of you UK folks...what a beautiful place you get to live...and the history...I am in awe and I cannot wait to go back. We took a tour of Windsor Palace and I could have stayed there for a week....and still not absorb it all.

The Raynauds probably wasn't triggered by stress...I think it was more the heat in the house than anything. I can't just crank the heat because my poor husband sweats, then HE gets a rash, we are quite the team. :)

If and when I move, I am sure I will have many questions, so thank you!

Thanks again.
Jen

#9 Sweet

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Posted 17 May 2008 - 10:46 AM

Tangie, welcome home love. By the way your "mullet" is cute!!! :)
Warm and gentle hugs,

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#10 LisaBulman

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Posted 19 May 2008 - 02:31 AM

Hi Tang,
I am a little late jumping in here but the slightest change in weather sets my raynaud's off. Yesterday it was beautiful, 72 degrees. I was wearing jeans, shirt, light sweater socks (very important for me). My daughter had a lacrosse game so I had my stash of warmer items in my car. When we arrived at the field it was still beautiful until that big cloud came and covered the sun. That was enough to make me freezing and my hands were instantly blue. Out came the heavy sweatshirt, gloves, scarf and blanket. Yes I looked like a fool because most people were in shorts but I didn't care I was warm and I could see their goose bumps! Dress in layers, it seems to help, every little bit counts!

Hugs,
Lisa
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#11 debonair susie

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Posted 19 May 2008 - 09:42 AM

Hi Tang... I hope that the raynauds settles down for you soon.

Mine can become a real problem when I'm stressed, too.

Take care of yourself, Kiddo!

Hugs,
Susie
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