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Questions on Medications for Raynaud's

Raynauds Medications for Raynauds Dynacirc

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54 replies to this topic

#21 marsha

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Posted 11 October 2011 - 08:14 AM

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!

#22 debonair susie

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Posted 11 October 2011 - 10:55 AM

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
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#23 marsha

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Posted 14 October 2011 - 11:39 AM

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! :)

#24 jurics

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Posted 15 October 2011 - 07:42 PM

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

#25 Joelf

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Posted 16 October 2011 - 12:33 AM

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,

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#26 Amanda Thorpe

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Posted 17 October 2011 - 05:43 AM

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
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#27 marsha

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Posted 17 October 2011 - 08:01 AM

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

#28 KarenL

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Posted 18 October 2011 - 04:08 PM

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!

#29 Shelley Ensz

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Posted 21 October 2011 - 06:40 PM

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

#30 Jalee85

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Posted 25 October 2011 - 02:15 PM

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

#31 night owl

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Posted 25 October 2011 - 03:05 PM

Hi

Just trying prozac for the second time. I feel the improvment with the Raynauds but can't sleep. Three days without sleep and I have given up again.

There are just so many sheep you can count!

#32 Buttons

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Posted 26 October 2011 - 07:06 AM

Night owl, when do you take the Prozac? I take it for my Raynaud's but my consultant told me to take mine in the morning which helps with the sleep issue.

Buttons

#33 marsha

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Posted 31 October 2011 - 06:28 AM

Good Morning All,
I am day 3 of the Adcirca (generic for Cialis). I have had a migraine for all three days, can't sleep which is one of my most favorite things to do :) I am going to give it the 2 week supply the doctor gave me. Very much hoping it works. I get an ulcer on my big toe which is like a hot knife; it's always under the skin and never surfaces, I also get "splits" on my finger.. Ouch!!
I'll keep you all posted; thanks for all the ideas
Marsha

#34 Amanda Thorpe

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Posted 31 October 2011 - 01:36 PM

Hello Marsha

I really hope that the Cialis works for you and that the migraines taper out for good and you are able to sleep again.

Like sleep eh? Well you're in good company baby! Now after me Zzzzzzzzzzzz

Take care.
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#35 Joelf

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Posted 31 October 2011 - 05:04 PM

Hi Marsha,

So sorry to hear that you've had a migraine and haven't been able to sleep for three days; it must be really miserable. :(

I do hope the symptoms settle down and you get some relief eventually from the Cialis.

Kind regards,

Jo Frowde
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#36 marsha

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Posted 31 October 2011 - 05:56 PM

Talked to my scleroderma expert and he said it is a common side effect and should go away with continued use.. I will trudge on...

#37 Shelley Ensz

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Posted 04 November 2011 - 11:44 AM

Hi Marsha,

It's been a few more days. Do you have any improvement in your sleep, or has your migraine settled down at all? I really feel for you, and hope that you are on the mend soon!

:emoticons-group-hug:
Warm Hugs,

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

#38 marsha

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Posted 05 November 2011 - 07:54 AM

Shelley,

Unfortunately the Adcirca (Cialis) is not working; I have to send my scleroderma expert a note and give him an update. I think it's going to be a long cold winter for this girl......

#39 Shelley Ensz

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Posted 10 November 2011 - 08:26 AM

Hi Marsha,

No worries, Cialis doesn't work for everyone with Raynaud's, and sometimes even if it does, the side effects outweigh the benefits. I would imagine there would still be other approaches to try.

In the meantime be sure to keep hand warmers with you, everywhere you go and keep the household heat set to "toasty" all the time. It wasn't until we bumped our usual room temperature up by about 6 degrees and combined with many (sometimes all!) of the Raynaud's prevention tips and treatments, plus diagnosis and adequate treatment for Hashimoto's thyroiditis, that I found significant relief.

If you haven't already, make a checklist and go through your entire lifestyle to see if there are any improvement opportunities to lessen Raynaud's attacks. For example, do you have hat and gloves by the door and in the car?

Have you called your pharmacist (during their non-peak hours) and reviewed all of your medications to see if Raynaud's or vasospasm can be a side effect? Even birth control pills can cause attacks, so don't overlook any medication or supplement you are taking. Sometimes very tiny changes can make huge differences in the number or severity of Raynaud's attacks, but it is more likely to be small but cumulative changes that make a difference.

Hang in there and keep on trying. Odds are this week you will find one or even two more things that might help a bit. My warm hugs are guaranteed by Floyd's of Flondon to provide a minimum of five minutes of happy, Raynaud's free, time, so here are a bunch of them!

:emoticons-group-hug:
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#40 marsha

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Posted 11 November 2011 - 09:26 AM

Shelley,
Thank you so much for the warm hugs...I am doing everything to try and stay warm. I always have extra hat and mittens in the car and with me!! Now you have me wondering about the medicine; I will have to call the pharmacist today. I have been wondering if years of having Raynaud's and not knowing what it was has damaged my vessels to the point of no return. I will continue as I have to keep trudging along..





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