marsha

Questions on Medications for Raynaud's

55 posts in this topic

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

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(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

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

International Scleroderma Network (ISN)

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