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Never Ending Ulcers!


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#1 Kiwi

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Posted 09 March 2007 - 01:58 PM

I know I am always posting about ulcers but I have really had a gut full of them !!! It's summer here and I thought I finally had them under control and now I have two NEW ulcers on my knuckles. So that makes 4 altogether on my knuckles and another NEW one in the crook of my elbow. I am always getting sores on my arms that come from NOWHERE and they are all so painful because the skin is so hard and tight.
I am taking a course of antibiotics but why the flare up???? !!!
I know everyone says Viagra - I took it for a month and didn't notice any difference. Should I have persevered?
Viagra will cost me NZ$200 a WEEK which is at least $US400. That's a lot of money!
I'm in the process of trying to order a Paraffin bath but this is going to be tricky with ulcers as well......
Is anyone taking anything natural for circulation? Is that why we get ulcers - is it bad circulation that makes them form?
Frustrated !!! Megan
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#2 nan

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Posted 09 March 2007 - 02:55 PM

I don't have any answers for you. I just wanted to let you know that I am thinking about you and I am so sorry that you are having to deal with so many ulcers. I have not experienced those yet in my journey. I can't imagine how painful they are. Take Care!
Nan

#3 peanut

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Posted 09 March 2007 - 04:44 PM

Megan,
I'm sorry to hear what you're going through. I think I just developed my first ulcer a week or so ago. It's right on my cuticle, like someone took a huge chunk out of it. It hurts and its not healing. Does that sound like an ulcer?

It's interesting that you bring up circulation because mine has been ultra bad lately. Are they related?

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 janey

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Posted 09 March 2007 - 05:17 PM

OH Megan
I'm so sorry that you continue to suffer with ulcers. Has your doctor been any help in coming up with a solution?

 

Apparently, scleroderma patients have been found to have high blood viscosities or slow moving blood. This could be the cause of ulcers. Viagra helps to open up the blood vessels providing for better blood flow but doesn't affect the viscosity. You might print out this article and take it into your doctor. With all the drugs out there, you can bet there are drugs that affects blood viscosity. I'm certainly no doctor, but since you have found a solution, it's something to explore. There might also be foods and vitamins that lower blood viscosity. I've just been put on Coumadin (a blood thinner) and I have to watch foods with high amounts of Vitamin K because they raise blood viscosity and can counter the effect of the coumadin.

There are other proven treatments for ulcers such as Illoprost and Bosentan (expensive!) that you could talk to your doctor about. Sounds like some experimentation is in order.

BTW - do you smoke? If you do, please stop. That's a big NO NO in attributing to ulcers.

I really hope that you find a solution for these ulcers. You've had to deal with them way too long. Let us know if you find something that helps.

Big Hugs,


Janey Willis
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#5 Kiwi

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Posted 10 March 2007 - 11:29 AM

Hi Janey
Thanks for your response, it was very informative. It's interesting because last year I had a test done to look at my live blood under a microscope. Basically the cells were all clumped together and not moving at all. They had never seen anything like it. So I think you are on the right track... I'll take all the info to my doctor.
I did manage to give up smoking for a couple of months - in that time one of my ulcers almost cleared up. Stupidly I would have the "odd puff" if having a glass of wine and that inevitably led to more and now I'm back smoking again with 3 new ulcers. Speaks for itself really doesn't it? ! Smoking is such a hard habit to kick!! Must try again!
Peanut - Mine are only on the knuckles so I couldn't really say if it's an ulcer for you but if it's painful, not healing and there is a hole there I'd say it probably is. Try to get rid of it quickly.
Thanks for your support, Megan
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#6 janey

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Posted 11 March 2007 - 06:13 AM

Hey Megan,
I too have high viscosity blood. I'm always hearing comments (from those that draw blood) about how slow my blood flows. I've never had the viscosity checked however.

I thought I remember you as a smoker. Well, I hate to nag, but here goes:
Smokers With Systemic Sclerosis Risk Severe Digital Vascular Complications
"Patients with systemic sclerosis (SSc) who smoke are three to four times more likely than are never-smokers to incur digital vascular complications, researchers in England have found."
Believe me, I know how hard it is to quit (I was a smoker many years back) and good for you for trying. Hopefully, you'll give it another try and succeed. I'll be cheering for you.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#7 Kiwi

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Posted 11 March 2007 - 10:42 AM

I knew you had remembered !
I wonder if good ole Asprin everyday would make a difference? Not so many toxins to deal with as opposed to a "prescription drug".
I once came across a natural supplement for sportspeople to give extra energy which I found quite good - apparently it worked by giving the blood oxygen.
What is the difference then, between the likes of Viagra and blood thinners like Asprin or Warfarin?
Thanks, megan
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#8 bookworm

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Posted 11 March 2007 - 09:48 PM

Megan,

Coumadin or Warfarin and aspirin are blood thinners.

Viagra, Cialis and Levitra are in a class of drugs known as phosphodiesterase type 5 inhibitors (PDE5 drugs).

These PDE5 drugs work by helping the blood vessels relax, which increases blood flow.

That's about all I can tell you. But if you only tried Viagra for one month, I would definitely give it a bit more time if your doctor thinks it's a good idea. I started Viagra a couple of years ago and I haven't had another serious ulcer since then.

I was switched from Viagra to Cialis because it lasts longer, so I can take less of it. Thus, I also save some money. All these drugs are so expensive!! I now take one half a Cialis a day, where I was taking a whole Viagra a day.

My fingers stay pinker and I am having much less trouble with Raynauds. I also had elbow sores on both elbows that just wouldn't heal and they also made a huge improvement. I guess the Cialis is just causing me to have better blood circulation to all extremeties..

My doctor has had me on a low-dose aspirin (baby aspirin) for years. This had nothing to do with scleroderma. Everyone I know is on low-dose aspirin for their hearts and to prevent strokes.

I also hate to nag, but Janey is right about smoking. Any medicine you take and any treatment you receive for ulcers may be a lost cause if you smoke. Smoking makes the blood vessels constrict, so meds to make them dilate may just be cancelled out by the smoking.

I smoked for 40 years, but managed to quit almost four years ago. There are all sorts of quit-smoking aids out now and many support groups. I quit with the help of an online group. I remain in the group to this day and feel the group helps me to remain smoke free. I know that I can never take another single puff. That's all it would take for me to start smoking again.



Good luck

Mary in Texas

#9 Shelley Ensz

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Posted 11 March 2007 - 09:55 PM

And the link to Mary's online support group for quitting smoking can be found on our main site at: Preventive Care for Pulmonary Fibrosis.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#10 janey

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Posted 12 March 2007 - 01:12 PM

Megan,
As Mary in Texas said - Warfarin and aspirin (for that matter) are blood thinners or, more specifically, anti-clotting drugs. There is a whole other set of drugs for Blood viscosity. Those drugs make the blood less sticky in order to decrease the viscosity or help the blood flow faster. These drugs can interact with warfarin. I'm sorry but I don't know enough about blood chemistry to explain the chemical difference between anti-clotting drugs and blood viscosity drugs but apparently they are two difference types of drugs.

Before you start taking anything, such as aspirin, please talk to your doctor. In fact, I would definitely talk to him anyway about this. You need some relief from those ulcers!

Big Hugs
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#11 beaty71

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Posted 13 March 2007 - 01:48 PM

Kiwi,
My most bothersome and painful symtom is digital ulcers,I've only had them on my fingers and for the first time on on of my toes. I know how bad they hurt, can't tell you how many times I have been brought to tears from the pain. I take cardura for the blood flow,an aspirin a day, I have to wear a nitro patch on my hand to force the blood to flow, antibiotics (usually keflex).That's just for the ulcers. My most extreme ulcer would not heal,after about 6-7 months, I went to hyperbarich oxygen therapy and it finally healed.That was due to a very cold winter and of course stress. I haven't had one quite that bad since. I would love more info on other treatments to help control raynaud's. It's so frustrating , I am really sorry you are going through this. Sometimes I think it's harder to hear about other people going thru this because you truly feel their pain. Take care.

Diana