Raynaud’s and Viagra

*Please Note: Every highlighted mention of Raynaud’s goes to different websites.  Please visit each one if you have time.

A friend on Twitter asked how Viagra helps me.  I’ll start with how Viagra became part of my Raynaud’s treatment.  Please scroll to the last paragraph if you would like “The Short Answer”.  It’s okay, I will never know.

In 2006, I was hospitalized because the blood flow to my left thumb had stopped due to the spasm caused by Raynauds.   My thumb quickly become infected and because of my history of MRSA, I went to the ER.  I saw my regular pulmonologist once I was admitted into the hospital.  Not to brag but he did develop a treatment protocol based on my hospital stay.  He put me on vasodialtor so strong I had to reside in the Cardiac unit at UCLA for constant monitoring.  The medication opened every vessel in my body and there was a very high risk of an immediate drop in blood pressure and sudden death, thus the need for monitoring.  This treatment allowed blood flow back into my thumb & with an additional treatment with two IV antibiotics, the infection cleared and the wound healed.  I had dodged the gangrene bullet.  One of many  revelations of this hospital stay was that the digital sympathecotmy I had  was no longer effective.  This  risk I took far too lightly in 1996 when I elected to have the surgery.
There were some hurdles to overcome regarding the treatment plan of Raynaud’s as an outpatient.   One good thing about being an inpatient is your doctor can try meds while in the hospital, outpatient formularity is another can of worms.  Rovatio seemed like a great medication, but my pulmonologist could not make that happen at the time because it was only allowed for treatment of PAH or Pulmonary Arterial Hypertension, which thankfully, I do not have.  So the next drug of choice was Viagra.
The insurance I had at the time answered that request with a resounding “Oh HELL no.”  Despite intial denial, my rheumatologist and pulmonologist worked together to show why this was the only option to prevent further hospitalization- or in other words, “The Viagra option will cost less than denial of medication.”  Let’s face it, when it comes to private insurance, you don’t need to prove the efficacy of a medication, you have to prove it will save MONEY, not the patient. {Side note: this is why I have elected to use my Veteran’s benefits and Medicare.  You would be surprised how much easier it is to get around formulary restrictions when your healthcare is “socialized” like the VA- but that’s a whole other topic.}
So, that’s how I intially got Viagra with private insurance to treat my severe Raynaud’s, but how did I get the VA to dispense Viagra to a female?
Back in 2005, before my Sarcoidosis diagnosis, my rheumatologist at the VA had no idea how to treat my increasing symptoms of what he thought was only Scleroderma.  Luckily, my ex-husband and I owned our own business and we had what some medical professionals called, “Golden Insurance”.  My rheumatologist at the VA referred me to his collegue at UCLA Medical center. ( Later, I learned there is a thing called Managed Care through the VA which allows an outside physician provided by your own expense, to make recommendations to your primary care physician at the VA. Again- a whole other topic}
Once the “golden insurance” agreed to dispense Viagra, things went smooth for a while.
When our company went under, I went back to the VA.  By then I was on Remicade with methotrexate for Sarcoidosis and Scleroderma.  Remicade is not the first option in the formulary for treatment of Sarcoidosis and Scleroderma.  Had I not been on Remicade already, two other medications would have had to be tried and then have failed before Remicade would be considered an option by the VA’s formulary.  Here is how i got around it:  In order to put me on the meds in their formuary, I would have to be entirely detoxed of Remicade.  By doing so, risked a major flare based on my history.  I call it the “If it ain’t broke, don’t fix it” ratioanle.
Viagra was a bit of a challenge, but my rheumatologist at the VA was able to explain that Viagra significantly improved my circulation.  More studies had circulated about the success of Viagra to treat Raynaud’s present day, but back in ’07- not so much.  I still get plenty of weird looks when I pick up my script at the pharmacy, but I use the opportunity to enlighten the community that Viagra is not just “boner” medicine.  Honestly, it’s rediculous.  It’s considered a recreational drug by the VA.  Truth is, if people were not so uptight and realized that a healthy sex life is a part of a healthy lifestyle, there would be nuch less miserey in this country.  (Again- a whole other topic to cover!)
Now to answer the question of my twitter firend.  How has Viagra benefitted my management of Raynaud’s symptoms?
First of all, this is what works for me.  Talk to your doctor about how you manage your Viagra.
I am prescribed 25mg of Viagra 4 times a day.  On days I exercise, I do not feel I require all four doses, however there may be parts of my body I can’t see such as my esophagus or internal organs experiencing Raynaud’s symproms. I do not skip doses.   I made that mistake with Nexium and now I have a scar tissue lined esophagus with no peristatlic movement. Yep,” hot-dog down a hallway” style as chewed bits of food go down my throat.

Viagra helps a great deal, but it is not a cure all.  It will not work if I do not make extra efforts of prevention.  Again, Viagra helps manage Raynaud’s.  I just can’t stress that enough.

In the morning when I get out of bed, especially in fall, winter or when staying  places that have air-conditioning; Raynaud’s starts first thing in the morning.  I keep Viagra by my bed,  set my alarm and take it before I am have to get out of bed.  I take my 1st Viagra of the day and crawl back under my covers.  I think it allows the vessles to dialate so that when I get out of bed, the ice cold feeling does not set in as soon as I step onto the cold floor.   A great thing to do would be to get up immediatly and start moving but that can backfire sometimes if the medication hasn’t had time to start working.
Once the meds have been in my system long enough, it makes it so much easier to get ready in the morning.  A shower can sometimes make my hands feel like hamburger, but the Viagra helps prevent that.  Once I am dressed,  Viagra is not the only thing that helps me manage my Raynaud’s.
Viagra is short acting, there are preventative steps to prevent a Raynaud’s attack between doses.  Here are mine:
1.  Dress in layers.  No matter what the temperature is, I always have three layers of thin clothing on my torso.  My style is undershirt (long sleeved or tank top), overshirt (my “top or blouse”), jacket (zip up hoodie, blazer or heavy jacket)
2.  NO Caffiene.  Okay, I break this rule every morning because when my Niphedpine and Viagra Kick in together it keeps away my headaches. (This is my excuse, there are many others, but this one is mine!)  Tea is a great alternative, but rememeber there is caffeene in decafinnated tea and there’s always the variable of how sensitive I am to caffeene based on the weather, my stress levels or way the wind is blowing.   Moderation is the key here.  A small amount of something is ok for me, but it may not be for you.  Use your melon.
3.  When I feel a Raynaud’s attack coming on, I get warm.  Here are some evasive actions I have taken in weird places:
-If at a Day Spa- get in the Sauna
-Restroom hand dryer.  I do love this one.
-Get in a warm car.
-If I’m with someone, I ask to borrow their jacket or any extra clothing to get around my torso, covering my hands is not enough.  I will ask them to put their hands around mine.  (A little awkward during a first date)
-If I am alone, I am not kidding-I  pull my arms inside my shirt and stick my hands in my armpits.  I know, ewww- but it works.
- I keep air activated hand warmers handy.  I never apply it directly to skin experiencing the blood loss.  I put the heated warmer or hot towel on my wrists. It warms the blood traveling to the constricted vessels and seems to  help the spasm relax.
-VERY IMPORTANT- I never, ever apply something hot directly to blood deficient skin.  It can cause a burn that could blister.
-Warm Water.  I do not personally like this method.  It works for some, but I have limited temperature sensing ability- especially in my fingers.  Water can go from tempid to hot quickly before I can feel it.  If you use this methid,  be very careful.
-Exercise.  This is the best thing that has helped me with Raynaud’s, depression and pain management.  I started easy woth simple breathing exercises, moved on to gentle yoga, walking, Zumba and my newest thing is spinning.  It is hard to stay on a steady exercise schedule.  Nothing fouls me up faster than a hospital stay or flare up.  (A whole other topic)
-Don’t give up.  Just don’t  The pain of tissue death or eschemia caused by Raynaud’s is excruciating.  Healing is just as painful.  It’s hard not to be overwhelmed by the pain.  Do your best to hang in there.  Cry, scream, cuss but by all means never throw silverware! (found that one out the hard way) Don’t be afraid to ask for pain meds. Find a calm and tactful way to describe the pain.  I can’t emphasize enough on the calm part.  Snapping usually sets me back at least an hour while waiting for meds in the hospital.
I hear this a lot: “You don’t need anything stronger.”
My dream reply is, “Okay, go outside, look for the roughest asphalt you can find or break some glass, press your knuckles into it and scrape up and down as long as you can stand it. Then come in and if you let me pour lemon juice on your knuckes.  Then I will take you at your word that I don’t need stronger pain meds.”  I would not recommend this approach, but wouldn’t it be great to actually SAY it?!!
Well that was my long answer to a short question from my friend, @MsUnProfessional on Twitter. Thank you for asking.   The short answer is Viagra helps manage Raynaud’s, prevent attacks and requires the patient to be proactive to be truely effective.

For more information:

The First Year-Scleroderma: An essential guide for the newly diagnosed. (nook)
By Karen Gottesman & Daniel Furst
Google Books

Sildenafil in Treatment of Raynaud’s (2005)

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