November 2, 2012
Please enjoy this slice of my life, with blue sprinkles…
What most people know about Viagra, makes it sound weird that woman would need to take Viagra four times a day, but after this post you will be able to explain why and hopefully make a comment about this post. I want good and bad here. Did you find it helpful? Will you think of Viagra differently? -because you know I will have to moderate a ton of “Viagra spam”. (For the love of corn, comment! Please and thank you.)
I have scleroderma and sarcoidosis. Let’s call scleroderma my “Anchor Disease”. It was my first diagnosis and it has the most severe symptoms for me. (That’s not an actually term, I just made it up, but it sounds nice and for our purposes here, I think Anchor Disease works.) So, it all started with Raynaud’s, a symptom of many autoimmune diseases and can exist on it’s own, then it is upgraded to Raynaud’s Disease. Raynaud’s is a symptom of scleroderma and part of the acronym CREST. (How can one not love Raynuad’s. Such versatility!)
So what is Raynaud’s? It’s a sympathetic nervous system overreaction to temperature change. When the body becomes cold, it slows the blood flow to extremities to keep the body’s core warm. With Raynaud’s, the nerves that signal muscle tissue around blood vessels overreact and rather than gently slow blood flow with a mild contraction, it chokes the vessels shut and can cut blood flow causing fingers and toes to fall off. Seriously, I lost the tip of my thumb in 1996 because the artery to my thumb was completely shut and blood was flowing retrograde to the tip. Oh and that’s not the punchline: I had ovarian cysts that decided to pop all at once. It was great times once morphene was on board, and not before specialists were brought in to rule out that the blood vessels to my colon, were not in a Raynaud’s spasm. So, not only can Raynauds cause lost of fingers and toes, it can happen anywhere there is a blood vessel surrounded by muscle tissue that’s connected to nerve tissue.
How does Viagra or lesser known as (Sildenanafil) help in the treatment of Raynaud’s? First, allow me to answer the question I am always asked: No, Viagra has no effect on my sexual performance. Viagra, or Sildenafil, was designed to treat Pulmonary Hypertension in newborns. Then, the BIG side effect was discovered and which overshadowed the versatility and life saving benefits of Sildenanafil. This of course, a big break through to help men have a healthy sex life, but created a big headache for me and I’m sure many others, but it’s my blog and I can only speak for myself. It gave me such a headache, my hair hurt.
You see, in 2005, I had a nasty ulcer on my left thumb that would not heal. I was not yet on Sildenafil, I was still using niphedepine. The artery in my thumb was in such a spasm, I started having flashbacks of 1996, when I lost the tip of my thumb. I did not want this to happen to my left thumb. My doctors at the VA had already made sure I had a resource at UCLA and under the care of Dr. Furst. The rheumatologists at the VA Hospital recommended I make the the trip to LA about this issue. They encouraged me to find a treatment they could learn from and use. At the time, I had golden insurance. I live over 100 miles from UCLA and even though the VA is only forty miles away, they did not yet have a treatment protocol for such severe Raynaud’s, so while preparing for my trek to UCLA, Dr. Furst, my rheumatologist at UCLA advised by phone I double my dose of niphedepine to see if it works. It didn’t, and crated a headache that felt like my head was hit with a hammer. So, off to UCLA I went.
Under the treatment supervision of my favorite pulmonologist, Dr Ross, I was prescribed a medication that opened every blood vessel in my body. I had to stay in the hospital during this treatment because of the high risk of my blood pressure dropping and my heart stopping.
From this, the medical team developed a treatment protocol to use Rovatio, to prevent the damage that had been done to my thumb for future patients. Rovatio is low dose Viagra. There was no problem receiving it in the hospital, but once I got home, getting Viagra prescribed for anything other than erectile disfunction was nearly impossible. Nearly.
I tried getting Viagra through my regular insurance first and eventually succeeded. But first, they required all kinds of information from my doctors. Each insurance representative I spoke with, had no medical background, but was armed to the teeeth with clerical skills and they met my inquiries with laughter. Eventually, my rheumatologist and pulmonologist produced enough research material to support prescribing the six dollar a dose pill to keep my blood flowing.
What did I do during weeks of waiting? I relied on the kindness of my local practitioners. I was given samples. This was when pharmaceutical companies handed out samples like Pezz. Oh and by the way, pharmaceutical reps had THE best quality pen covered with their logos and featured drug names. Seriously, they wrote smoothly and I would always ask a rep for pens when I saw one. I still ask when I see them, but I’m usually denied. Back then, pharmaceutical companies had righteous swag, but I digress.
The laughter didn’t stop after getting approval for insurance companies to cover Viagra for me. I would get asked stupid questions from well-meaning pharmacy assistants and of course my favorite, “What are YOU doing with Viagra?” said loud enough for other patients to hear was always a treat. Often, I wanted to answer, “Yes, I need Viagra to keep up with my whoring ways.” But my son would be present and I had to take the high road and at least teach him to be nonjudgemental and not let him see the stupidity of others rub off on his mom.
Then, something magical happened. Our business went bankrupt, I lost my insurance and I was back into the Veteran’s Healthcare system. My Rheumatologist at the VA had no problem getting Viagra approved. There were a few hiccups. We had to explain that I could not cut the dosage because it had to be exact. The VA and many insurance companies classify Viagra as a “recreational drug”, which I think is bogus. Having a healthy sex life is part of the big picture of overall health, but I’ll save that for my “soapbox post”.
So now, thanks to some traveling, time on the phone and a little kicking down the doors of stereotypes, I enjoy 50mg of Viagra, four times daily. It keeps my fingers, toes and parts unknown intact and helps me breathe easier. “Free to live a life of religious fulfillment”. (Did you really think I would get through this piece about Viagra WITHOUT a quote and clip from Airplane!?)
There was also an additional unexpected side effect. No, it had nothing to do with my sex drive. It had to do with my lungs. I notice it more now because my disease is progressive and it’s progressively effecting my lungs. If I skip a does of Viagra (sometimes I forget when it’s warm) it is actually harder to breathe. That’s right, Viagra helps my lungs breathe easier AND I recently found out from Dr Furst why that is: Lung tissue reacts to Viagra the same way tissue in the penis reacts to Viagra. I was unable to find reliable research info to back this up this morning, but I did get the information direct from Dr. Furst, of UCLA’s Rheumatology department. (I see him next week, so I will get the correct research information in print. The search for the info will make your head explode. If you do find a source backing it up, please, please post the link in comments! I never like to discuss a research find without data to back it up in my posts, but it is a know obstacle when researching anything remotely related to Viagra, it;s best to just visit a medical library in person.)
So, I hope you enjoyed that slice of weird, courtesy of scleroderma. Consider yourself enlightened of the clinical benefitTell your friends!
Scleroderma Research Foundation
UCLA Rheumatology: http://www.uclahealth.org/body.cfm?id=453&action=detail&limit_department=15&limit_division=1094&CFID=70251248&CFTOKEN=63458303
UCLA Pulmonology: http://www.uclahealth.org/body.cfm?id=453&action=detail&limit_department=22&limit_division=1119&CFID=70251248&CFTOKEN=63458303
Oral Sildenafil in Infants With Persistent Pulmonary Hypertension of the Newborn: A Pilot Randomized Blinded Study: http://pediatrics.aappublications.org/content/117/4/1077.short
Background of Pulmonary Hypertension in Neonates and treatment http://www.nichd.nih.gov/cochrane/shah10/shah10.htm#BACKGROUND
Rovatio vs Viagra http://www.ismp.org/newsletters/acutecare/articles/20090129.asp
What is Revatio: http://www.revatio.com
Scleroderma In Depth Report by New York Times http://health.nytimes.com/health/guides/disease/scleroderma/print.html