Snowbird

Raynauds

12 posts in this topic

Hi everybody

 

I know we've had lots of conversations about Raynauds but I am just throwing this out there because I am wondering how long it took everybody before they actually needed to take any type of medication for it? I realize of course that it affects everybody differently, especially in severity, so I'm curious to see if our answers will be all over the place or not? Curious to know if it took weeks, months or years? My feet have been misbehaving longer than my hands...my hands dove in last fall...so far, I am not taking anything for it yet....anyone else willing to share their experiences? Thanks.


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Snowbird, my rheumatologist put me on something within the first year to help circulation in my fingers and toes. It has helped me tremendously. Any help for attacks or severe cold fingers and toes is a great help as soon as they continue to be bothersome a person should look into something that might help them out.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

My first 3 years I had it bad enough that my fingers and toes would turn white or gray/blue. I was having water drained from my heart and while on the table they had the monitor on my middle finger, they lost the heart beat on the machine. It was because there was no circulation and they had to move it to my other hand. I've never had any medication for it. As the imuran and predinsone has calmed things down, I don't have it as bad as I did back then thank goodness. I was told that it would have to be extreme in order for them to prescribe anything for it.


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

Share this post


Link to post
Share on other sites

Hi,

I started on BP medication immediately. The idea was to protect my kidneys. However, my BP was quite high, so it also helped, not only that, but also my raynauds.

 

I would advise anyone who is found to have circulation problems in their fingers...to ask for medication to help with that.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

I had problems with both my hands and my feet for years but never looked into it. I had a minor unrelated surgery where I was somewhat aware of what was going on. I kept hearing the bells go off and thought it was my heart. They realized it was bothering me and turned it off. Coming out the anesthesthesiologist told me I had better have the Raynauds looked into. That was the first I had ever heard about Raynauds. Also that was before I had seen a rheumatologist and did not know about all the other problems. Since that I have had numerous occasions that involves the finger clips for oxygen. It will not work on my fingers or my toes even when they are warm and look normal. I have had it put on my ear and once they taped the sensor directly to my finger. I regularly see a lung doctor (no breathing problems) and part of the check in exam always includes this check. The person checking me in always acts surprised as if that was a new experience, and they so check every patient. I have not asked the doctor about it but plan to the next time I see him.

Raynauds is a minor problem and I just try to do the things I see that helps. Gloves do little to help I think because there is not enough warmth to hold in.

I have not been diagnosed with Sclero but get a positive on almost all labs except, thankfully, RA. The rheumatologist. has verified the Raynauds and has given additional diagnosis.

Does anyone have any comments on why the oxygen clip will not work on me?

THANKFULLY I live in Florida. :VeryHappy:

Betty

Share this post


Link to post
Share on other sites

Hi Betty,

The first symptom I had was Raynauds. In 1966 we had gone from New Zealand to England and in our first few months there I developed Migraine and Raynauds. I put up with it all the time we were away from hone - nearly 3 years - and didn't actually ask anybody about it until about 1971 when I happened to mention to my general practitioner about the Telangectasia and Raynauds. He told me what Raynauds is and said there was nothing to be done. So I just put up with it and all the other Sclero things which developed over the years until I went to my general practitioner(a very different person this time) with another problem and all she could fix on was my blue fingers. This was about 2002. I told her nothing could be done it was just Raynauds!!

 

In very short time I had been tried on Nifedipine, something else, then Amlodipine. The first two made my headaches worse, the Amlodipine banished the Migraines forever - I have never had another one and over the years the Raynauds has lessened from severe to almost non-existent. I have been challenging myself this summer and I cannot bring on an attack. I still take the Amlodipine 10mg once a day at night because I am terrified of the Migraines coming back.

 

Over the years I did have digital ulcers but I didn't know what they were! Our climate is somewhat like yours - we are temperate - no days below +7C and none over +26C or so in the summer. I think the climate has made a huge difference to me.

 

I think that drug regulations are different here from the US but I would say that the Amlodipine has saved me much misery. There is a little problem with fatigue but lately I have solved that by taking my dose at night when I am going to go to bed anyway.

 

Good luck to you finding something that helps.

 

Only warm hugs from us today - the temperature has dropped a little and we have had rain today.

 

Judy T

Share this post


Link to post
Share on other sites

My Raynaud's started about 12 - 14 years ago, it only happened occasionally so I didn't bother about it even though it was painful, my fingers just went completely white and then turned bluish and finally bright red. About 5 years ago though it got much worse and I was tried on lots of different medications but non seemed to help. I eventually saw a Rhuematologist who tried an Iloprost infusion but it didn't help either. I am now on liquid prozac which helps shorten the length of the attacks but I still get them everyday. I wear gloves most of the time, even in the house! When I ever I have an operation they have to wrap me up in lots of warmed blankets because my feet and hands are so icy cold! I dread cold weather and just want to hibernate in the winter months.

 

Buttons

Share this post


Link to post
Share on other sites

Hi Snowbird, I started medication for Raynaud's 6 months after I was diagnosed with Scleroderma (not sure how long I had had Raynaud's as I have never had the classic attacks- just blue fingers). At diagnosis the rheumtologist started an ace inhibitor for renal protection which is also meant to have some positive effect on Raynaud's, but I developed an ulcer so he prescribed Nicardipine as well. I also have regular Iloprost infusions, but despite all the medication still have episodes of blue fingers every day, winter and summer.

Share this post


Link to post
Share on other sites

I said to my husband only last night that if my feet become more blue I'll have to consider doing something about it. Up until the age of about 35 I was always cold particularly my hands and feet although the only colour they ever went was white. When diagnosed with sclero at 39 I was told I also had Raynaud's and it was news to me. I am aware of it now because it has become worse especially in my feet but I still don't get any pain or the full spectrum of the red, white and blue colour change.

 

In reality I plan on doing nothing about it unless I get ulcers having said that you do wonder if the prevention is better than cure approach is the way to go.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thanks everybody...I really appreciate your thoughts on this. I have an appointment with my family doctor in March and one with my rheumatologist in July. I will discuss this with them then for sure. So far I have mostly colour changes, sometimes a little pain in my right foot with the attacks.


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Amanda- have you tried a pair of apres-ski boots? They are so warm. I have a pair of down ones that someone gave me and I have treasured them for years. :emoticon-hug:

Share this post


Link to post
Share on other sites

Hello all. I am still somewhere in undiagnosed space, but convinced that I have scleroderma for two years. Numerous tests (laboratory and others) I have done last year showed only dry eyes. I will go again to reumatologist and dermatologist in February and something might show itself this time.

However, I wanted to share with you my experience in helping myself regarding blood circulation issues. My hands and feet were always cold and they became extreme heavy, tired and sensitive to cold last year. I went to hyperbaric therapy 10 times and for the next 12 months I had my circulation tremendously improved. Not very fancy but effective.This was not the hyperbaric chamber but hyperbaric treatment in a sac under the pressure. I was told the chamber has some bad effects due to oxigenation and it is not advisable (don't ask me why). If I were not too lazy I would have done it this year again, but for certain I will have to go before the end of the winter.

Keep warm.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now