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Questions on Medications for Raynaud's

Raynauds Medications for Raynauds Dynacirc

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#1 marsha

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Posted 20 September 2011 - 07:40 AM

Good morning everyone, I hope this finds you all well. As fall approaches in the Northeast my Raynaud's is getting more active. I am on my third medication for the symptoms.

I am about to try Dynacirc (a blood pressure medication) and I am wondering if anyone here has tried or is on it, and if so have you had any relief from using it?

The next step if this one doesn't work is the generic for Viagra or Cialis. Has anyone been on those? I am just wondering when I should give up and say I fought a good fight! I am worried about side effects from these medicines. As my Scleroderma expert said, sometimes some people just don't respond to any medications. I wonder if I am just one of those people.

#2 Joelf

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Posted 20 September 2011 - 09:57 AM

Hi Marsha,

Sorry to hear that your Raynaud's is becoming more active; an unfortunate consequence of the weather becoming colder! :(

I can empathise with you as I also suffer with Raynaud's quite badly; I dread places with air conditioning like supermarkets. I don't actually take any specific medication for it as my blood pressure tends to be a little on the low side anyway and my liver is feeling bombarded enough with the other drugs I have to take! ;) So I'm afraid I can't advise you about the drugs you've mentioned from my own experience but I know we do have other members who have used the medication and I'm sure they'll be along to give you some first hand advice.

Here's a link for Raynaud's Treatments: Medications which I hope will give you some helpful information.

Kind regards,

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#3 Chopper

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Posted 20 September 2011 - 12:43 PM

Hi Marsha,

As of yet I'm not on any medications for Raynaud's. It was just this past winter that mine developed. The doctor already offered me medicine if I wanted it. I declined because it was summer and I didn't think it would be necessary. I read some things from the link that Jo provided and that was interesting. I've been wondering at what point should I use medicine?

I go to my scleroderma doctor Thursday and I think I'm going to ask that. I don't want to take medicine that I don't really need yet, especially if I'm able to keep warm and prevent many episodes.

Have you had ulcers before? Do you have a lot of unavoidable situations that cause it to be active?

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#4 Snowbird

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Posted 20 September 2011 - 05:32 PM

Sorry, I'm no help on this one. I'm not on any medications for mine yet either.
Sending good wishes your way!

#5 marsha

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Posted 20 September 2011 - 06:44 PM

Chopper,

I have had ulcers, and they are very painful. Sometimes I don't have to feel or be cold to have an attack. It really stinks. I have had Raynaud's for 11 years now and it is just getting worse. I am not sure what to do about more meds, I guess I can keep trying seeing there are only 2 more to try. :(

Thanks again,

Marsha

#6 Buttons

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Posted 21 September 2011 - 12:27 AM

I'm from the UK so not sure which BP medications your talking about but I have tried 3 different lots of BP medications and none of them worked for my Raynaud's. My consultant then tried me with an Iloprost infusion & that didn't help much either so he then tried me with liquid Prozac (there'd been some trials at the Royal Free in London & they found it could help some people) which is an anti depressant but is given at low doses. It has helped a little and cuts down the length of attacks I have but I still get blisters etc on the fingertips.

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#7 miocean

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Posted 21 September 2011 - 08:02 AM

Hi Marsha and others,

Who me? Raynaud's? :emoticon-dont-know:

I was sitting in the doctor's office a couple of months ago and it was very cold. He asked how my Raynauds was and I said "I don't really have Raynaud's" looked down at my fingers and they were blue! So I am officially in the club! :emoticons-yes: I was diagnosed with it years ago but other than a slight blue tinge when it gets really cold it doesn't seem to be the biggest issue with me.

I have always been a glove wearer in cold weather and have them from thick to thin and sometimes layer them. I have all different weight coats as well and layer clothes. Last year I bought a good pair of silk underwear and it was the best investment I ever made! I avoid the cold aisles of the supermarket. I haven't had ulcers yet. I am already on blood pressure medicine, along with the 25 or so other pills :unsure: I take daily so I would be reluctant to do something else unless I did start to get ulcers.

I try to be prepared for things. For instance when I go to the beach I have my bathing suit, a light coverup, a long sleeve shirt, pants, and a sweatshirt!!! One day a lady sitting near me asked, "How many outfits do you have?" :D That reminds me, we are heading to the beach in a little while and I am going to put my lightest pair of gloves in my bag. :blink:

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#8 CraigR

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Posted 22 September 2011 - 10:46 AM

My research shows Dynacirc to be a calcium channel blocker. A more commonly known similar drug is nifedepine.

I've had Raynaud's with occasional ulcers for 34 years. I've used multiple medications during serious attacks, and none when ulcer free. What works for some doesn't work for others, so some trial may be wise, If you don't seem to be getting relief, you might suggest some of the others on the list to your doctor.

It's hard not to over-emphasize to keep the core body temperature up especially with the overuse of air conditioning.

The members of our support group (in the southern California area!) all mention that they wear jackets all the time because of the low temperatures inside so many buildings.

Good luck,
Craig

#9 Amanda Thorpe

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Posted 22 September 2011 - 02:25 PM

Hello Marsha

I have Raynaud's but mildly as I have never had colour changes apart from fingers going white. I get it in my feet as well and cramp is the worse effect of it thankfully. However, ulcers I do have but on my feet and let me tell you I'd take just about anything to make them go away but there is nothing they can recommend, good in that I am getting the treatment I can but bad in that they can't do anything else!

Miocean you truely live in the weird 'n' wacky world of scleroderma to celebrate finally having Raynaud's induced colour changes! What floats our boats these days is...well...weird...blue fingers eh? Did you like smurfs as a kid?

Take care.
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#10 marsha

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Posted 23 September 2011 - 09:04 AM

Craig,

Yes DynaCirc is a calcium channel blocker. I have already tried nifidiprine, Norvasc. If the DynaCirc does not work then its moving on to the trail of Prozac, then the generic for cialis and then I'm out of options,

I did see some relief in the hands but not feet with the Nifediprine, but nothing with Norvasc. Luckily it doesn't get too hot way up here in Maine, but I don't use air conditioning, wear gloves when im in the store and try and keep my core as warm as possible.

Thanks everyone for the info. Its just a trial and error with us all, isn't it? :)

#11 Shelley Ensz

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Posted 24 September 2011 - 10:30 AM

I agree with Craig. Keeping the core body temperature up is the most helpful thing of all for me in controlling Raynaud's, along with following our Raynaud's Prevention tips.

I've found that relying on medications to control it isn't half as helpful for me as actually following all the natural ways to avoid attacks in the first place. Avoiding all caffeinated products (coffee, tea, some OTC meds even) is very important if I'm having a worse time of it. Air conditioning is the absolute worst for me, especially if I'm caught without warm enough clothing (which is far less likely for me in the winter.)

A mistake I made in the beginning was thinking that it was just my hands that needed to be kept warm. But once I started dressing warmer all over, it reduced attacks in my hands even when they would have otherwise gone into spasms. So first of all, it can help to become an expert on avoidance. I don't think medications really help much, for me, unless I am also following all the prevention tips as well. And with those I am usually able to avoid meds only for the Raynaud's.

Even though everyone is different, I do think we might all be similar when it comes to benefiting (to a greater or lesser extent) from raising our core body temperature. That includes finding the right house temperature and keeping it there. About 76 to 78 is nearly always right for me -- even at night, and even in the summer, with only slight variations for any extended period of time. This also improved a lot for me when I switched to the right thyroid medication for me as it raised my metabolism.

I can combine the proper room temp and clothng with a cup of coffee (during a good spell), but if the temp drops a lot I may not be able to get away with pressing my luck on caffeine, and there have been periods of time when I've found it necessary to avoid caffeine (my most favorite indulgence, unfortunately) for months on end.

Look for your own particular triggers, or combination of triggers. See how many of them you can figure out how to avoid and that might do as much (or more) for you than any medication. If you do need medication to control it, take it faithfully.

Also check all your medications, supplement, and OTC pills to make sure they don't cause Raynaud's or vasocontriction as a side effect. Be aware that most teas have a lot of caffeine and sometimes a lot more than a cup of coffee. The weaker/milder the coffee bean, generally the more caffeine there is in it (opposite of what we'd think!) so just by switching to a stronger coffee (check caffeine charts) you might be able to indulge if caffeine is a major issue for you.

Also for avoiding attacks is reducing and controlling stress, which also constricts the blood vessels. Some of us have a stronger physical reaction to stress than others so we have to devote more energy to learning stress reduction techniques and indulging in them frequently.

You might find that you are free of Raynaud's when you take your meds and drink a cup of coffee -- but not when you get an upsetting phone call at the same time. So consider that your attacks might be controlled by eliminating one factor. The worse our Raynaud's is, the more strict we have to be on the items that make us more vulnerable to attacks.

Mine were worse in the beginning. Once I learned and practiced ways to avoid and rewarm, and keep my core temperature raised, it has become much easier to avoid attacks and also to recover from them. That's in general, with exceptions, of course, as I'm only human and don't have complete control over my environment all the time nor do I always figure out the ideal balancing act for enjoying my life while controlling all aspects of illness at the same time.

It will probably get better for you, if you learn and try more techniques or even meds or combinations thereof. Please share what works and doesn't with us, okay?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#12 marsha

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Posted 24 September 2011 - 12:39 PM

I will definately keep you all posted on my findings.

I have cut and limited my caffeine intakes way down especially in the winter months. I try (hahahaha) to stay stress free but with a senior in high school and a daughter who keeps me running like crazy it's kinda hard, but I think I am handling it quite well.

I love having the feed back! Thanks Everyone,

Marsha

#13 Amanda Thorpe

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Posted 24 September 2011 - 05:09 PM

Actually I would say that stress brings on an attack worse than cold does. I can actually feel my fingers going cold when I get stressed. Awhile ago I became extremely stressed whilst trying to type a reply to an upsetting email and I found it harder and harder to type as my fingers became more and more bloodless. Even though my heart was pounding away none of the blood seemed to go to my fingers! :(

I have just realised that when you click on "show all" for the emoticons it gives you a explanation of what each of them is...I didn't know what some of the were before so didn't use them just in case I inadvertently gave offense! Who me?! :emoticon-dont-know:

Take care.
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#14 Shelley Ensz

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Posted 25 September 2011 - 05:28 PM

Amanda, I had no idea there were/are explanations on the emoticons. It never dawned on me to hit "Show All". That's a cool new trick. Thanks! :great:

Oh and I just learned that you can only click on Show All once per message because after you close it, it doesn't open up again. :angry:
Warm Hugs,

Shelley Ensz
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#15 JohnJ

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Posted 29 September 2011 - 01:25 PM

This for me is the absolute worse thing about this illness. I have been on 50mg. tablet of Viagra daily, but only take it when I have really bad flareups, as it causes headaches. I tried the Nitro creme and like the Viagra, it causes severe headaches. I also have had 4 digital ulcers in the last 3 years which last about 8-9 months; this was after I had a right hand index finger amputation, and sympathectomies on both hands. All of my ulcers started after hitting my hand/fingers doing mundane things like reaching for something, or household chores. The stress from being fearful of hitting my fingers accidentally is maddening.

For what it's worth my attacks come on everyday shortly after getting out of bed and cold temperatures from my wife blasting the air conditioning in the summer, or from the cold winters here in Missouri. If I could I would move back to Florida, as I had less attacks, lots of sunshine to keep my vitamin D levels up etc..But I couldn't find a doctor or clinic to treat me like the folks at Barnes Jewish Hospital in St. Louis.

I hope you find some relief, and take care not to injure your fingers.

#16 Amanda Thorpe

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Posted 29 September 2011 - 05:21 PM

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
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#17 KarenL

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Posted 01 October 2011 - 01:05 PM

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!

#18 marsha

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Posted 06 October 2011 - 08:20 AM

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. :(

#19 Shelley Ensz

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Posted 07 October 2011 - 03:25 PM

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
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Hotline and Donations: 1-800-564-7099

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

#20 Shelley Ensz

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Posted 09 October 2011 - 02:39 PM

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
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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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