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Questions on Medications for Raynaud's

Raynauds Medications for Raynauds Dynacirc

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#41 Shelley Ensz

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Posted 11 November 2011 - 12:11 PM

Hi Marsha,

One thing to keep in mind is that our bodies are the most amazing healing machines ever created. Within microseconds of any type of injury, our bodies are already manufacturing and delivering their own pharmaceutical supplies to the injured part.

Scleroderma itself often goes through a natural cycle of getting worse -- and then better, even without any treatment at all. In fact, that phenomenon is what makes finding a new scleroderma treatment so difficult, as nearly every drug looks helpful in the initial stages of trials. It's not until they get to the large scale double-blind trials that drugs fail -- because the natural course of scleroderma is to improve in so many cases.

So even though you may have incurred significant damage from not knowing you had Raynaud's and how to care for it in the past, doesn't mean that it would necessarily be entirely unresponsive to all approaches now.

What it does mean, though, is that you will probably need to really study every chapter and verse of how to prevent attacks and recover from them without doing even further damage. You will very likely become one of our forum pro's on the topic, if you hold steady with the attitude that you can and will find ways to alleviate some of the attacks.

Perhaps success for you would mean that they are staying the same and not worsening. I know I had to work very hard and try dozens of different approaches before I finally found a combination that works for me, the majority of the time.

And just because you tend to the project once, doesn't mean you're done forever. I had a worsening of attacks at one point and went through all my meds again. Unbeknownst to me, one of my doctors had put me on several new medications that had Raynaud's as a popular side effect. It was simple enough to change meds and revert once more to having things under pretty good control.

I do know how very easy it is to think things could not possibly be improved. I've fallen into that abyss many times, myself. It's a natural reaction after we've tried a number of things that haven't helped!

That's why sometimes we need to remind each other that even with scleroderma, many health improvements are still possible for us. Not necessarily easy, definitely not convenient, usually bothersome, and generally they involve change that we'd prefer not to make. But still, our bodies are born to heal, and eager to cooperate with our improvement efforts. So if you take that natural healing impulse of our bodies and combine that with scleroderma's mysterious ways of embarking on a healing process all by itself and top it off with some new approaches, it is at least within the realm of possibility that something good might come of it.

And if not, well then, at least we know that we have extended ourselves, and tried our very best, and have nothing at all to apologize for! Sometimes, it just is what it is.
Warm Hugs,

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

#42 marsha

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Posted 11 November 2011 - 03:00 PM

Shelley,
Thank you!! Sometimes I forget to stay positive and something I always say to a friend who is a bit of a hypochondriac is, It is what it is, we can deal with it and learn from it but there is no sense fussing and fretting over what is. My doctor would now like me to retry the Nifedipine. I will keep an open mind!

Thanks again,

Marsha

#43 Shelley Ensz

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Posted 11 November 2011 - 03:28 PM

Hi Marsha,

Wonderful! It has proven successful for many people for Raynaud's. A real plus for some of us is that calcium channel blockers can also prevent attacks of migraines. So if you also get migraines or high blood pressure, you might find that it does double or even triple duty for you.

Imagine, all that for just one happy little co-pay! :emoticons-clap: :yes: :woohoo:
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.

#44 iggy

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Posted 15 November 2011 - 10:25 AM

My Raynaud's was very bad, even going from room to room. I was put on Adalat (nifedipine) with Warfarin in combination , and the Raynaud's is much improved. I go outside in winter with no gloves and I have had no problem with my hands.

Hope this is of some help.

#45 Joelf

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Posted 15 November 2011 - 10:50 AM

Hi Iggy,

Welcome to these forums!

I'm very pleased to hear that your Raynaud's is so much better on the combination of Adalat and Warfarin. We have some more information on Raynaud's prevention and also treatments which I hope you'll find interesting.

Do keep posting and let us know how you're getting on.

:emoticons-group-hug:

Kind regards,
Jo Frowde
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#46 Amanda Thorpe

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Posted 15 November 2011 - 06:04 PM

Hello Iggy

Welcome to the forums! I'm glad that the medication is helping your Raynaud's and long may it continue.

Take care.
Amanda Thorpe
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#47 judyt

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Posted 16 November 2011 - 05:47 PM

Hi All,

Raynauds!!

What a thing to have to endure, but it could be worse, maybe :unsure:

It is interesting the way that medical people seem to be so polarised about whether meds. like nifedipine and amlodipine (in my case) can help. I tried nifedipine and it made my headaches worse - just as they said it would - so we tried Amlodipine and just like magic the migraines made an unconditional surrender :emoticons-clap: and it helped the Raynauds. Then lo and behold a few years later I started to realise I was not getting any Raynauds attacks :emoticons-yes: . But whenever I have the temerity to suggest to somebody who knows better than me that the Amlodipine fixed my Migraines and helped my Raynauds I get the sideways look .

Right now I am off almost everything (to try to identify which is the worst cause of fatigue) and the headaches are driving me mad. :crying:
I am keeping a diary, supposed to be for a month but I won't last that long, and I have an appointment to go back on 28 Nov which seems a very long time away. Funnily enough still no Raynauds. Maybe I have grown out of it, just like I grew out of being carsick when I was 12 - do you think?

I seem to have Shelley and Amanda on my side in this argument, but how do you get the medics to listen. :emoticon-dont-know:

Best wishes to you all and I hope the winter is not going to be so bad for you all this year.
Warm Hugs

JudyT

#48 Amanda Thorpe

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Posted 17 November 2011 - 02:51 PM

You go Judy! I can't remember why they took you off of the amlodopine but what have they got to loose to let you try it again as part of an experiment to see if what you say is true? What have they got to loose apart from being right?

Take care and you totally have my sympathy, of all my medication amlodopine is the one I would never do without because of the migraines.
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#49 Kamlesh

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Posted 17 November 2011 - 03:07 PM

I have been taking Nifedipine for 7 years in colder months and works very well for me without any side effects.
Kind regards,

Kamlesh


#50 marsha

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Posted 20 November 2011 - 10:08 AM

I am getting ready to give the nifediprine another go!! Of all the meds I have taken it has worked the "best" cutting my attacks by a quarter. I am hoping that it helps because the attacks are worse than ever.. It doesn't matter if it's cold, hot or warm, going in the shower, waking up. I've been suffering this whole fall. If the nifediprine doesn't work I'm not sure what I am going to do as the winters are very long here in Maine.. Hope everyone is doing well!
Marsha

#51 anotherday

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Posted 13 April 2012 - 08:31 PM

Hi,

My Raynaud's has become really worse since the last year, even living in a hot city.

I passed through a big emotional stress and had 8 ulcers. I am treating Raynaud's with Viagra, 20 mg 3 times a day, it works well for me, I don't have side effects but there was a time that even Viagra didn't work.

I am also taking azathioprine and phenprocoumon (marcoumar), because it was discovered that I also have antiphospholipid syndrome.

Hugs to you all.

#52 fragiledancer2

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Posted 14 April 2012 - 08:37 AM

Hi- I had severe Raynaud's and nearly lost some fingers. I was put on Revatio and have not had an ulcer since and I live in Chicago. Although I have very low BP Revatio has not made it decrease even further.

#53 Amanda Thorpe

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Posted 14 April 2012 - 10:47 AM

Hello Anotherday

Welcome to the forums and well done on finding something to help your Raynaud's. It's interesting that you associate emotional stress and ulcers because I find that stress brings on Raynaud's like a whippet and much more so than cold for me even though I live in the UK! Thankfully my Raynaud's isn't bad and I have never had a digital ulcer, have foot ulcers though!

Take care and keep posting.
Amanda Thorpe
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#54 Joelf

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Posted 14 April 2012 - 12:02 PM

Hi Ro,

I'm pleased to hear that you've found something to help your Raynaud's symptoms and certainly stress doesn't help with any autoimmune conditions.

I'm also taking Azathioprine and have tested positive for the IgG antibody, which caused me to develop a DVT (deep vein thrombosis) in my groin (a long and rather tedious tale, with which I won't bore you now!! ;)). I've included a link to Antiphospholipid Syndrome (APS) which I hope you'll find helpful and interesting.

Kind regards,
Jo Frowde
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#55 anotherday

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Posted 21 April 2012 - 05:42 PM

Hi, Thank you all for the responses, is good to know what are your experiences, this forum is helping me a lot.
Joelf, thanks for the link you have included, it's really interesting!
Hugs
Ro





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