marsha

Questions on Medications for Raynaud's

55 posts in this topic

Hello John

 

Ulcers eh? My sympathies. Mine are on my feet and now starting just above both ankles, apparently mine are due to skin breaking down rather than blood flow issues? Whatever.

 

I guess that being prone to them on my feet is a bonus as they are less likely to face knocks and bumps than my hands. It must be so difficult for you to try avoid injuring your hands all the time. I hope that you find some relief from your Raynaud's and the resulting ulcers.

 

Take care and keep posting.


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)

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I have had Raynaud's with my sclero for wow, almost 20 years now. Tried the Norvasc, and the nitro. No good. I have had ulcers, and even lost the tip of one finger to gangrene. Now I'm on Revatio, a type of Viagra. I take it three times a day and it helps a lot. The headaches go away with regular use. I use it faithfully from September to May and sporadically in the summer. It's crazy expensive and took a lot of begging from my doctor and I to get it approved through insurance. It was worth the trying because gangrene is the most horrible thing you can go through. Keep fighting!

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I had what was the worst attack I have ever had yesterday! It took me 45 minutes just to be able to get to the numb/tingling feeling in my digits! it was awful! I am not having any luck with DynaCirc. My next step is Revatio if we can get the insurance to agree. :(

 

All I know is with the cold weather approaching I need to find something, I hate to think I will be bound to the inside for 7 months. :(

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Hi Marsha,

 

I'm sorry you had such a prolonged attack of Raynaud's. What methods do you use for re-warming from Raynaud's? Advice that I found especially helpful was to avoid trying to re-warm with very hot water, because that too can start or prolong attacks. I was astounded to see that one of my friend's, who is a nurse, would try to re-warm by whapping her hands, hard, against a firm surface. Although that is a natural urge (we want to do anything to get the circulation going again), that only further damages the small blood vessels and prolongs attacks, too.

 

Usually, if the attacks are in my fingers and I'm caught without mittens or hand warmers, I find that it helps to put my hands under my armpits. Yes, I know, it looks weird, but it also works for me better than windmills or when warm water is not available.

 

Good luck with switching meds. I hope you find some relief, all the way around!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I think I may have neglected to point out in this thread that sometimes systemic scleroderma can cause so much damage to the blood vessels that Raynaud's simply cannot be controlled by medication.

 

I particularly want to highlight this because we do focus so heavily on ways to avoid attacks with lifestyle and/or treatments. Some of us do absolutely everything in our power to avoid attacks yet still suffer them frequently and/or severely. See Raynaud's Prevention and Raynaud's Rewarming.

 

On the other hand, there are those of us who are doing many things that induce or worsen attacks, and when we learn how to avoid and/or treat them, we can get things under fairly good control.(considering).

 

Being an educated, informed, cooperative and proactive patient can put things in our favor in dealing with some aspects of scleroderma -- but it doesn't always guarantee success, either, and at those times, we need to remember to be very gentle on ourselves.

 

Just because there are times when the illness trumps everything, it does not mean that we, or our doctors, have failed. However it does mean that we could sure use a lot of extra warm hugs and understanding. Here are some warm hugs for all of us, and particularly for those of us who cannot find sufficient relief from any symptom or complication of scleroderma, or any other illness, for that matter.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley,

 

I was at my daughters field hockey game, so I got to my car as quickly as I could and I turned on the heat med placed my hands on the blowers, to no avail, then I .... Stuck them in my armpits, this technique I've been using for years :) I also tried massaging them, thinking that I would help to send blood to the finger. Its amazing what we will do to try and stop an attack. I ended up just suffering until my hands decided they were going to come back!

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Hi marsha,

 

I really REALLY empathize, as I'm sure do the many that have posted here on your thread before me; however, as Shelley so aptly pointed out, there are many situations, whereas no matter WHAT is done, it can be difficult, as there are times when the medications just cannot help, no matter WHAT we try.

Ultimately, we just do our best to keep warm.

 

Shelley, as for putting your hands under your armpits, I do that, I put them under my legs, we do what we need to do :yes:

 

As for Viagra, or the generic, it's pretty hard to get insurance companies to pay for these, as I understand it.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I have come to the fact that I just may be one of those people....as the weather gets colder its becoming harder to stay warm.. I feel like I am always cold no matter what I do! But you know what... It could be worse! :)

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Hi Marsha,

I just found this website and hope my feedback helps you or others.

I am 39 years old and have had a Pernio and have been on Nifedipine for the last 15 years. My condition worsened in the last 6 months to severe Raynauds. My second visit to the ER room prompted a series of new /or last attempt medications for my Raynauds, which now includes Viagra and Botox shots in my hands.

Due to the Viagra and Botox taking weeks to get approved by my insurance, I was put on Nitroglyerin paste and generic prozac, and of course my standard nifidepine. I am still in the phase of getting my medication adjusted due to side effects, but I have not had a flare up since taking Viagra. The Viagra improved my condition but alone did not stop the pain, but the Botox shots have helped extremely with the pain. Currently I take (3) 25 ml. of Viagra a day (yes, a day) and get 100 units of Botox shots in each hand. Yes, 100 units in each hand. I believe this will be every 3-4 months? I would have never guessed prozac, Viagra and Botox were used for Raynauds, but I assure you, it makes it bearable to live with. If you have any questions, let me know.

 

Sonja

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Hi Jurics,

 

Welcome to these forums, although I'm sorry you found us through suffering from Pernio (chilblains) and Raynaud's.

 

I'm very pleased to hear that you've had such a positive response to the medications that have been prescribed for you and hopefully you'll find that the medication will continue to give you relief from the very unpleasant symptoms you were experiencing. We have a link here to Botox and other Raynaud's treatments which I hope you'll find interesting and informative.

 

I'm very glad that you've found our forums and joined our community and I'm looking forward to reading more of your posts and getting to know you.

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Jurics

 

Welcome to the forums! I am sorry your Raynaud's is so bad, we use our hande all day everyday so it has a huge impact.

 

Take care and keep posting.


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)

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Jurics,

 

I am actually going to be starting the generic for Cialis in a week or so, I am hoping this helps! I have never heard of the botox for the pain, you say it has actually helped you?!! where do they inject it?

 

I don't see my rheumatologist until December but I bounced physiotherapy on my scleroderma expert and he said to ask my rheumatologist about it, so that I will do, the pain in my right hand has gotten so bad I can barely use it and knitting and drawing are pretty much near impossible.. <insert small rant here> I'm tired of feeling bad!!! No one understands, except my Mom and you all <exit rant>.

 

Thank you guys for always being here and understanding just how I feel I am so very happy I happened to stumble upon this site BIG HUGS.

 

Marsha

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It does take a lot of perseverance to get insurance to pay. My doctor and I wrote letters, and attended meetings via phone for 6 months and was finally approved. Don't give up! Another great invention are hand warmers that hunters use. They come in little foil packets and fit in the palm of your hand. You can buy them at sporting goods stores. For exercises to get an acute attack under control try 'windmilling' your arms round and round. Oh and I have an electric blanket next to where I sit on the couch. And a neck warmer you can put in the microwave. Feel better!

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Hi Sonja,

 

Welcome to Sclero Forums! I'm very glad you found us. And I'm also glad that you have found some helpful treatments for your Raynauds, too. I would have welcomed you earlier, but I've been away on vacation. I find it becomes more challenging to deal with Raynauds when traveling, especially up north here.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I've been on Revatio aka Viagra since May 1st; I just recently stopped taking it in early September because of swelling issues that I was having; however it was the Amlodipine causing the swelling and not the Revatio. It's very expensive for Revatio and I was still having color changes so my rheumatologist said if it gets worse this winter to consider botox injections; she made it sound quite unpleasant though...lol I haven't had any ulcers, however I am off the revatio right now because I've been having a very high and irregular heart rate when I try and do anything. I haven't taken it for a week though and it hasn't helped the heart rate so I don't think it was the revatio after all. If you can afford it It could be worth trying.


Jalee

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