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Nitroglycerin For Raynaud's


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#21 LisaBulman

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Posted 10 September 2007 - 07:12 AM

Barefut,
Your dr should work directly with your insurance company to help get the meds covered for you. Basically they need to send them a letter stating the need for the medication and all of the other things you have tried that haven't work. Definately give your rheumatologist a call and get the ball rolling so you can get something better!

Hugs,
Lisa
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#22 Sweet

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Posted 10 September 2007 - 10:00 AM

Amy, Welcome to the Sclero forums. I'm glad you are here.

I'm really sorry to hear about your amputation. That's really a tough one.

I'm thrilled you've decided to post, we can learn so much from each other.
Warm and gentle hugs,

Pamela
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#23 bookworm

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Posted 10 September 2007 - 07:56 PM

Hi Amy,

I too went through pure torture with a digital ulcer that got dry gangrene. I had three doctors wanting to amputate at the first joint but I thought, at that point, that it was healing and also, by then, I had gone to a pain management clinic and they eased that awful pain about 100 percent. I can't believe you took nothing but Tylenol. It didn't help a bit, did it? Why didn't your doctor help you with that? I'd change doctors! The doctors gave me several narcotic drugs that didn't even touch the pain but when I got to that pain clinic, I mean those doctors didn't mess around!! They had signs all over the place that said things like "You have a right to pain relief." They gave me something that worked! It was a heavier duty narcotic than I'd taken previously. One doctor said that if he were taking that much of that drug, he'd be gorked, but that when you are in great pain, the medicine seems to just go to the pain. I'll tell you, I have never known such pain, including labor. My ulcer took around a year to heal. Anyway, one plastic surgeon agreed with me that it would heal on it's own. Our concern, too, was bone infection, but, fortunately, I didn't get that.

I hope everyone reading this will demand pain relief! I suggest joining one of the pain groups that are listed on this website -- I think. There has been a great change in the thinking about pain in recent years, but some doctors will never get around to figuring it out! Hey, they aren't in pain!

Another good thing to know is that the next time I started getting a finger ulcer, which was about the time the first one healed, my doctor immediately put me on Viagra (new treatment at the time) and that one healed up on its own in about a week or maybe two. It was like a miracle and I've been on it as a preventative ever since -- well I've been switched to Cialis, but it's about the same thing. Even if you don't take it all the time, if you are a person who gets the ulcers and if they tend to be bad ones, I think if you could start on some Cialis (I started at just take 1/2 a day) as soon as you notice the ulcer, you could nip it in the bud.

Everyone who gets the ulcers should surely ask his or her doctor about Viagra or Cialis. What these drugs do is force blood to the extremities. So you can see how they would help.



Mary in Texas

#24 Sarahp

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Posted 10 September 2007 - 11:13 PM

Hi Bookworm

I heartily agree that prevention and early treatment is needed to avoid going through the painful finger ulcer ordeal.

I did have the tip of the index finger on my dominant hand self-amputate. I hit the finger accidentally on the kitchen counter and the black tip fell off. It is functional and the nail is curved. But the other two finger tips were too infected to be saved.

My insurance did approve Viagra two years ago but I ended up not taking it. I had started coumadin after being on Plavix and aspirin and the existing ulcers healed and I have not gotten new ones. Since I have APS a coagulant was needed.

Take care

Sarah

#25 bookworm

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Posted 11 September 2007 - 04:19 PM

Hi Sarah,

I also had the black tip fall off and underneah was fresh pink skin and I too grew a little curved nail. It's a little deformed, but I'm glad I didn't let them amputate, although I know sometimes people just have to!

While you had this, were you given anything for pain -- that actually worked?



Mary in Texas

#26 AmyTx

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Posted 12 September 2007 - 11:30 AM

i had no choice in them amputating it it got so bad that nitro wasn't working and it died pretty fast well I say fast but it started dying in feb of 07.. alot of people can't stomach the pictures(the gangrene pics) but I lost it from the first knuckle down on my left thumb... im glad it is gone now it has \healed well in 3 weeks and doesn't hurt anymore.. :) :P

#27 bookworm

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Posted 12 September 2007 - 05:31 PM

I think Nitroglycerin cream is a joke for the kind of pain that goes with gangrene. It certainly did nothing at all for me when I had dry gangrene. I think it helps with Raynauds, but gangrene is the most painful thing I've ever known!

If you get it as a result of a digital ulcer, then we are probably talking about the end of your finger, where all those nerve ending are. Your finger tips are designed to be very sensitive, to feel! So it hurts like the dickens and it never stops. I thought it felt as if I was holding my finger tip in a flame and just keeping it there, hour after hour. This lasted for weeks before I got pain relief that worked! Not that my doctors weren't trying! But even some pain medication didn't even lessen the pain. I couldn't tell I'd taken anything!

By the time some of my doctors were wanting to amputate, the pain management doctor had gotten my pain under control and the black cap had hardened and things were getting better. What concerned them, at that point, was the possibility of a bone infection. They felt that the bone was right there under that cap and in jeopardy! One doctor -- the only one who had any experience whatsoever with sclero, said no, don't amputate. I was glad because I really didn't want it amputated. But, I have to say that if the pain had been as severe as it had been earlier, I would have wanted to amputate my whole arm if it would have stopped the pain! It was unbearable. That's why I urge anyone in pain to seek a pain management clinic. Insist on it! You have a right to pain relief!

Mary in Texas


#28 KarenL

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Posted 11 October 2007 - 01:53 AM

We CAN use Viagra! My rheumatologist prescribes an alternative that is more likely to be covered by insurance, especially for women, it's called Revatio.

#29 KarenL

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Posted 11 October 2007 - 01:55 AM

I agree. I had the exact same experience as you did. Two years later, my affected finger is obviously smaller than the one on the other hand with a weird nail , but it's there! When I had the gangrene, forget the nitro, too painful, but now, with another finger thinking about it, it's helping. Peace all,
Karen

#30 Patty1

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Posted 12 October 2007 - 04:05 AM

Hi All,
It's been very interesting reading everyone's experience with finger ulcers, and all of the different meds used. I have tried them all, in all combinations. My rhem. even had me last year using Nitro Paste, Viagra, Norvas, asprin and Lisinopril all at the same time! The pharmacist was concerned about the combination of the Viagra and the Nitro Paste, as the warnings are not to combine, but my rhem. said that only applys to men(Huh???) Any how, could not tolerate the nitro paste and discontinued, but stayed on the viagra, which has some very nasty side effects (headaches, dizzyness, bad taste in your mouth, ugh) thru the winter.
What worked for me, at least keeping my raynauds under control, and healing my ulcer, was the intravenous infusion therapy (prosacyclins, ie Alprostadil, Iloprost)which are superduper vasodiolators. It involves several days in the hospital, in ICU, but so far over the last two winters, it has been the only thing that has helped. In combination with all of the other meds as well. My Rhem. saves this for last resort, and so far the insurance company has authorized it. Has anyone else had that therapy? I guess it is used alot in Europe and Canada, but I haven't heard of too many people in my area of the country having this therapy. I live in New England,so winters can get pretty cold.
Stay warm everyone.
Patty

#31 peanut

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Posted 12 October 2007 - 08:32 AM

Hey Patty,
I use nitro paste, Revatio (which is viagra), Norvasc and baby asprin. I thought mine were under control... now I have one that's trying to be an ulcer. Oh dear. I told my rheumatologist. He was suprised considering all the vasodilators I'n. If I keep getting them maybe I'll ask him about those super duper IV vasodilators.

peanut

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my HMO makes me wear a helmet...

#32 Patty1

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Posted 12 October 2007 - 09:43 AM

Hi Peanut,
The superduper vasodiolators (done IV ) carry risks, that is why they usually have me in ICU during the infusion.. it can lower bloodpressure to a dangerous level, so you are constantly monitored, but for me they have been my "antifreeze", and the effects can be long lasting.For me, that is about three months or more. Gets me thru the worst of the winter. I think there are some articles on this site about these vasodiolators, under raynauds treatments. The medications are called Iloprost and Alprostadil(spelling??) It surprises my doctors too that I keep having such severe attacks with everything they have thrown at me. At one time I was also on Trentall, but that was discontinued, as it had no effect. Woopy, I got to drop one med! I don't know if all Rhem's will go for this treatment, as it is risky, (and expensive) but I consider myself lucky to be under the care of a good team at a teaching hospital. The down side to that, is I get to be the guinea pig for the Interns and Residents! Thats ok, though, it is helping them to learn about our disease. Sorry for the longwinded ramble.
Take care,
Patty

#33 lizzie

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Posted 12 October 2007 - 11:03 AM

Hi, I have just got out of hospital this evening after 5 days of continuous Iloprost IV for raynauds (a fairly routine treatment here in the UK for those with scleorderma even though is an unliscensed drug). I have this every three months with a break over the summer. The Rheumatologist has also started me on daily GTN patches (this is in addition to Nicardipine 30mg TDS). I don't consider that my raynauds is particularly bad , but here they seem to take a very pro-active approach to preventing vascular problems.
lizzie

#34 Patty1

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Posted 15 October 2007 - 06:46 AM

Hi Lizzie,
Hope you are feeling ok after the "anitfreeze" treatment. It usually wipes me out for a few days. I wish it were more common practice here in the US, last winter I had to wait for two months for the bed in ICU, and in the meantime, my rhem. put me thru the ringer with tests, an Angiogram on my hand, EMG's for hand numbness,(which has turned out to be yet another problem all together) etc. Not to mention all of the meds they added. They used Alprostadil for my infusion. My rhem. did say some people need to have this infusion every three months. I hope I don't get to that for a while. My raynauds is pretty bad, they tell me. I don't have much to reference this on, as I don't know too many people with Scleroderma.. I get a few months break in the summer where the attacks are as frequent, unless I stick my hands in the freezer without my gloves. I am just hoping that the doctors don't put me thru the ringer again this winter. I dread winters as it is.
Take care.
Patty

#35 CraigR

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Posted 17 October 2007 - 12:38 PM

Another drug to consider for help with peripheral circulation is Prazosin, also called Mini-press. I found it helpful when I had serious trouble with fingertip ulcers.

Craig