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barefut

Nitroglycerin For Raynaud's

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Hi, ladies. I have been most interested in reading this thread as it has developed, though I have not had any personal experience with ulcers. I have linked it to my reply on another thread, so you are now famous. I learn much from each of you as the days go by.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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please everyone take care of your ulcers before they get too bad.. i used nitrocream and it didn't work for me but soaking my two big toes and left thumb everyday in warm salt water helped me with that and they eventually healed except for my left thumb.. the ulcer got worse and it died I mean literally dry gangrene.. from either raynaud's or my vasculitis... i went through pure torture with dry gangrene it was so painful and I only took tylenoil for it .. but my rheumatologist didn't want to amputate since I have lupus and healing was a factor..but I finally came down with a bone infection and MRSA so I was left with no choice in the matter.. it was amputated in late august of 07'' whats even grosser is I have progression pictures of my thumb from the ulcer all the way through the gangrene and even the ampuatation... i had it amputated from the first knuckle down and im glad I did because its healing faster now excpt im missing half a thumb.. remember keep your fingers and toes warm warm warm and take really good care of them... its important..

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Hi AmyTx

 

Welcome to the Forum. I see this is your first post.

 

Three years ago I went through a similiar experince as you. I feel my rheumatologist did not treat me aggresively for my finger ulcers. As a result I needed surgery on two finger tips on my non-dominant that had developed dry gangrene. It was the most painful experience of my life. When a foul oder with drainage began the hand surgeon at a medical center agreed amputation was needed. My fingers healed nicely.

 

I since have switched Rheums and have not had a finger ulcer. This rheumatologist has placed me on a combination of meds that control the APS and Raynaud's.

 

Sarah

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Welcome to the Forums, Amy. I see you have been around since February but have finally decided to post. It's unfortunate that you and Sarah had to learn the hard way about this. I sincerely hope you are doing everything you can to prevent new ulcers from appearing. I look forward to reading more of your posts.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Barefut,

 

I have used the nitropatches for my ulcer. It did very little for me. I was then put on Viagra, and it 6 weeks my ulcer was totally closed and healed and pain gone, after experimenting with different blockers and dilators for 5-6months. I'm a big believer in the viagra-like meds, if your system can handle it. It also gives tremendous headaches, but it was worth it just to get my finger closed up. I was ready to have them amputate it, it hurt that bad.

 

Good luck in your search. If you do get put on the viagra, don't use it with any other dilators, it's dangerous. My doctor didn't tell me to take off my nitro-patch when I started using the viagra. ######!! My husband came home and asked me "what in the world was wrong with me" as I was as red as a chili pepper, and couldn't get off the couch!

 

I hope you find relief soon!


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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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


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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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

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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

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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

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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

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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

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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.

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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

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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

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