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marsha

Questions on Medications for Raynaud's

55 posts in this topic

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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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!

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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

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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

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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.


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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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

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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...

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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

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,

 

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......

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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

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,

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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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

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,

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

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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

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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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.

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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

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

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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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

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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.


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 been taking Nifedipine for 7 years in colder months and works very well for me without any side effects.


Kind regards,

 

Kamlesh

 

 

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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

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