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barefut

Nitroglycerin For Raynaud's

35 posts in this topic

Called my rheumatologist this morning for my finger. She wanted me to come see her which was not possible since I had 7 kids in my care and no travelin' money for the hour's drive or the ferry fare.

 

Wish I could have seen her on the 7th but SHE had to have her patients reschedule because she was gonna be out of office. (I love her anyway)

 

She called my family practice doctor and set me up an appt for him to be her eyes. Of course my doctor wasn't in so I saw ARNP. I got their last appt for the day. He prescribed the nitro cream. Does anyone else use this? Is it helpful? I used some about an hour ago and see or feel no difference. My finger is getting worse and is starting to get painful.

 

What is the name of the affliction where blood flow to the fingers is completely constricted? ARNP told me but I didn't write it down and don't remember. Starts with an A.....I think. rheumatologist didn't mention it to me because I'm sure she didn't want me to look it up. Too bad. Knowledge is power.

 

Anyway, one more thing to worry about...

 

I read somewhere a long time ago that vibration in the hands is bad for Raynaud's sufferers. I guess I can't do anymore mowing or weedeating. I actually like to mow and weedeat!

 

Everytime there's another change to my body or one more thing I can't do anymore, I go through another grieving. I'm sure I'll be in tears tonight. The loss of my independence hurts worse than my physical pains. But that's a whole 'nother post........

 

Be well all,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,

You are right about the vibrations, you shouldn't be doing that stuff. Sorry! I am also sorry that you hurt so much. I have heard that the creme doesn't help much, but I can't remember what does. I would say just to watch your finger very closely. Take care of yourself!

Nan

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Barefut,

I have had alot of ulcers, nitro patches have worked the best. I get really bad headaches the first couple of days I wear it, but after that my body adjusts to it. I wear it on the top part of my hand closest to the finger that is affected. These ulcers still take some time to heal because of the raynaud's. If you have any questions about this please send a message to me. I feel your pain, I know how bad they hurt. Take care.

 

Warm hugs,


Diana

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i use nitro cream daily on my fingers and toes. start with a little, very little and work up to a larger amount. I would get terrible sharp headaches if I put too much on. It may not seem like it helps but it does....

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Barefut,

I had read an article about using 5% sodium nitrate gel mixed with 5% ascorbic acid (it has to be used sort of like epoxy, it can't be premixed, they react together), you might ask you dr about that, it is suppose to increase blood flow by about 3 times. I guess we could all use Viagra for Raynauds, it increases blood flow velocity by about 400%!!! :unsure:

 

Sorry about the mowing and weed eating!!!

 

 

Best of Wishes,

Tammy

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Diana,

 

I have not heard of the patches. They sound a lot more convenient and less messy than the cream. It does not rub in and I end up wrapping it but I can't wrap it too tight or else it cuts off blood flow and if it's too loose, it falls off.

 

Peanut & Diana - I have not had a headache with it yet - maybe because it's just such a small amount on just the tip of one finger or maybe the concentration is less than yours?

 

Tammy, I have wondered about Viagra too - if CCB's aren't doing the trick, I'll be asking rheumatologist about it but I guess there are probably more ill side effects with Viagra?

 

Thanks Nan.

 

Night all,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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my doctor told me to apply it to the base of the fingers. applying it to the tips may not be good especially if you have open sores. I also take viagra. it's known as Revatio in Sclero & PH circles... same exact meds though! I haven't suffered any side effects other than my sink is sometimes very warm. I haven't had any sores since I've started taking it. It can be expensive but may be worth it if your Raynauds is severe enuf. Me, i've got PH and it helps with that.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Peanut,

 

That makes sense. I haven't seen rheumatologist on this yet, only ARNP and he probably just assumed to only put it on the affetced area. I'll call rheumatologist on it.

 

I'm sorry your "sink" gets very warm - that's a weird side effect! ;)

 

Thanks for the giggle.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,

 

I can't imagine why someone with serious finger ulcer problems hasn't been put on Viagra or Cialis!!!!! I haven't heard anyone say they were not helped by these and the only side effect I've heard of was from one person who had headaches at first. She got rid of the headaches by breaking up the pill and not taking it all at once. I never had any side effect at all, maybe because my doctor had me break the Viagra in half and take half in the morning and half at night. Later, I was changed to Cialis and only took a half all day because Cialis lasts longer -- thus I saved money. Unfortunately these drugs are very expensive and insurance won't always pay.

 

Please, ask you doctor about these drugs. They could save your fingers!

 

 

 

Mary in Texas

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Bookworm,

 

Thanks, I do intend to ask about both those. I've been through Nifedipine and Norvasc but had side effects so I've been taking Felodipine and up until now have been okay on it. I still have Raynaud's attacks but not that often in the summer. Fall is coming and I am dreading it.

 

Thank you for your details about dosing, insurance coverage and cost as I am financially strapped at the moment. It may be out of the question if insurance won't pay. :( But I sure would like to try one of them.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut,

 

I can't remember the name of it, but I believe there is a new drug that is exactly the same as Viagra, but was actually made for scleroderma. Insurance will pay for it, although it is even more expensive than Viagra! (Go figure!) I am going to see if I can find out the name of this and let you know. I'll bet someone on this board might know and write in!

 

Another thing to try is to write to the drug company and tell them about your disease and need for the drug! Get your doctor to sign your letter! Sometimes the drug companies will give you a great discount if there is a real need. Don't give up. I really hope that you get to at least try one of these drugs because I have had wonderful results with them!

 

By the way, when I had a bad ulcer, I used the Nitroglycerin cream, Nifedipene cream, some blood pressure medicine by mouth (can't remember the name of it). Maybe these helped and I just couldn't see it, but the ulcer just kept getting worse, gangrene developed, and amputation was being recommended by all but one doctor. So, it is really hard to see that the creams or any of the other meds I was taking were helping. I suppose you never know how much worse it might have been without the cream, but ....

 

As for the pain, there's a prescription patch called Lidoderm -- Lidocaine Patch-5 percent that is somewhat helpful. Lidocaine also comes as a cream or ointment I think. The thing I've noticed about pain killers is that something may work wonderfully well if one's pain level is, say, a 5 on a scale of 1-10. However, it may not be as helpful if your pain level is a 10. The ulcer I had that got gangrene was unbelieveably painful! I have never, before or since, had anything that hurt so badly. The doctors kept giving me all sorts of pretty serious pain meds and nothing helped. This continued for several months before a drug was found that worked, and I would say my pain level was a 10 plus! It never stopped, night or day. Now, since then, I've had calcium deposits and elbow ulcers and even some small finger ulcers and none of them has been that painful. Some of them were about a 5 or 6 on the 1-10 scale and that is painful! But it's not a 10! The patches have been very helpful to me at the times when the pain is not a 10.

 

I surely hope you get some relief soon!

 

 

 

Mary in Texas

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Bookworm,

 

Thanks for all the info! I do have some lidocaine cream that's almost gone - I can't remember where I got it. It is hard to find. I got it off the shelf but I may have to have pharmacy order some more for me. I had been using it for ingrown toenail.

 

My finger is not that painful yet - maybe a 2 or 3. But I still want to try Viagra or its equivalent as a preventative measure. From what I've read and heard (from more people than just you) it does a much better job of increasing blood flow than CCB's.

 

I am so sorry you have had to deal with so much pain from this. So, what happened to your really bad ulcer? Did you have to lose your fingertip? Were you on Viagra or Cialis when you had your bad ulcer?

 

Thaks again,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Again Barefut!

 

You asked what finally happened to the bad ulcer. Well, I was finally sent to a pain management specialist and a plastic surgeon. The pain mgt. guy got the pain under control immediately. He did what's called a ganglion block and gave me a different pain medicine and an anti depressant, Amitryptaline (sp?), which he said combined with pain meds to helped folks sleep! Meanwhile, I had three doctors wanting to amputate at the first joint, but I was so resistant that they sent me to a plastic surgeon who had experience with CREST and these ulcers. He said NO WAY would he amputate! He said the finger had already started healing and that it would heal but would be very slow. I had, by this time a sort of black cap on the end of my finger -- where the gangrene was drying up, I suppose. When that, at last, came off, the finger was pink with new skin under there and one of the doctors who had wanted to amputate said, "Well, I've learned something!" Good for him to admit it! All my doctors were really trying their best to help me, but most of them just really didn't know what to do!

 

Anyway, it continued to heal and even grew a little nail!. The finger isn't quite "right" but, to me, it beats having had it amputated. It's shorter than my other fingers.

 

And, no, I was not on Viagra or Cialis when I had this ulcer. This ulcer took about a year to heal. About the time it healed, I began getting another one on the other hand. You can imagine how overwhelmed I felt about this. I just didn't think I could face going through the whole thing all over again. But, the good news was that, by this time, doctors had started using Viagra for this and my rheumatologist put me on it. That new ulcer cleared right up and it was a couple of years before I had another one. On the Viagra or Cialis, they just go on and heal so much faster.

 

Unfortunately, I now have two that are not healing very well, but we'll see what happens. The good thing about these two is that the pain level is only about a 2 or 3 and sometimes 0.

 

I definitely hope you do ask your doctor about these drugs if you have much of a problem with ulcers. They are also using Viagra for pulmonary hypertension.

 

Mary in Texas

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Bookworm,

 

WOW! Thank you for sharing your story. I learn so much from people like you who are willing to share their experiences. And I love when they have happy or even happy-ish endings.

 

I'm so glad you didn't have to amputate and that your doctors learned something from it.

 

I bet you were so happy to see that dead skin fall away and see pink underneath!

 

I like the idea of Viagra treating 2 sclero related illnesses. Maybe Viagra can serve as a preventative treatment for PH for me as I also have ILD and I always have PH in the back of my mind.

 

Thanks again for sharing,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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WOW~

 

I am so glad I found this tread. I didn't know about the Viagra helping out with ulcers. I've had one for almost a year and boy was it PAINFUL. I even had thoughts that cutting off my finger would be so much better than having that horrible constant pain. I hope I never have to go thru that pain again. :(

 

I am going to ask about the Nitro and viagra at my next appt.


Take care and stay warm,

 

Michelle

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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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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

ISN Support Specialist

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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