Even when the weather starts to warm up, people who suffer from Raynaud’s struggle with the pain and discomfort of constantly having cold fingers and toes.
While there doesn’t appear to be a lot of new treatments being released, a few experimental drug tests are showing positive signs at relieving the symptoms, and in some case, reversing the damage caused by lack of blood flow to the ends of fingers and toes.
One of the most promising new treatments is the use of Botox (Botulinum Neurotoxin). Other drugs showing positive results are Viagra and Prozac (But we’ll save that for a future post)
In this article, we’ll have a look at the research being done with Botox and examine the pros, cons, risks, and benefits.
What is Botox?
When you think of Botox, the first thing that comes to mind is movie stars, plump lips, and reduced wrinkles. Maybe you’ve even considered using Botox for migraines or cosmetic reasons.
Botox goes by the medical name Botulinum Toxin Type A (or OnabotulinumtoxinA). It’s manufactured from the bacteria that causes botulism.
Scientists and cosmetic surgeons have long known that Botox works by blocking the nerve activity in the muscles and temporarily paralyzing the muscle. It does this by stopping the nerves from releasing a chemical called acetylcholine. This chemical is needed for the nerves to communicate with the muscles and to tell them to contract.
When it comes to cosmetic surgery, disabling the nerves is a good thing. The result of Botox is that the muscles in the face or forehead relax completely and are incapable of contracting to cause frown lines or other creases in the face.
As it turns out, Botox can offer significant benefit to sufferers of Raynaud’s Phenomenon.
Botox was first approved for medical use in 1989. At this time it could be used for a select list of non-dermatologic conditions. In 2002 and 2004, the FDA added approval for severe glabellar lines and axillary hyperhidrosis. In 2010, it was approved for the treatment of chronic migraines.
Based on its ability to block nerve activity, Botox has since been widely tested and used on a range of skin conditions and cosmetic procedures. However, the use of Botox for these conditions is considered to be "off-label".
It often takes years of testing and research to gain FDA approval to use a drug for a specific purpose.
The FDA needs to ensure quality, safety, and effectiveness before they will give it the tick of approval. Until that happens, doctors are free to use previously approved drugs for unapproved reasons. This is known as being used "off-label". This is completely legal and a very common practice. In fact, more than 20% of prescriptions for adults in the US are for off-label conditions. (And as high as 50 to 97% in children)
In the case of off-label uses for Raynaud’s, the small sample sizes and limited documented studies mean that FDA approval is almost certainly a long way off.
How does Botox help with Raynaud’s?
Anyone with Raynaud’s knows that an attack can be triggered by cold temperatures or strong emotions.
As a response, the arteries in the fingers, toes, ears or nose contract (or spasm) to cut off the blood supply to the area. At first, the fingers turn white and then blue. It’s only once the spasm has ended that the fingers change back to a red color as the blood returns.
if the blood supply is cut off for too long, the tissue starts to die and forms ulcers in the affected areas.
In the picture shown above, you can see the muscles have tightened (Vasospasm) and restricted the flow of blood through the artery to the capillaries of the hand. When the attack ends, the final picture shows that the artery has reopened and the blood flow has been restored.
If we can stop the initial constriction or vasospasm, the Raynaud’s attack can also be completely avoided.
In the past, cutting the nerve to the arteries that bring blood to the area was a possible solution.
However, more recently, researchers have theorized that the ability of Botox to block nerve activity could be used to stop vasospasms from occurring without the need to physically cut the nerves. Obviously, this would be a lot less invasive and requires little or no healing time.
What is the procedure?
Since the first studies in 2004, several further studies have been conducted to determine the location and amount of Botox to use.
Placement of the injections is extremely important to provide effective relief. The goal is to inject the solution next to the vessels without injuring them.
Botox is a highly effective (and potentially dangerous) drug. If enough of the toxin spreads to other parts of the body, it can cause paralysis and death. Thankfully this is extremely rare.
Normally a single injection is made in the webbing area between each finger. An additional injection is made on the outside of the index finger and in the middle of the little finger (near the base). The thumb is only injected if it is affected by Raynaud’s symptoms.
An additional three points are injected around the neurovascular bundles in the middle of the hand. It is essential that the toxin does not get into the bloodstream.
Because the procedure is still quite new, different surgeons may select different points to apply the injections. However, the primary objective is to disable the nerve signals between the fingers and in the bundle of nerves in the middle of the hand. To ensure accurate placement and to avoid blood vessels, ultrasound guidance is often used.
A small 30G needle is used to avoid damage to nerves and vessels near the injection point. The palm and base of the fingers are normally massaged for about 30 seconds immediately after the injection to help spread the Botox around the area of the injection.
How long does it take to work?
Most people have a fairly fast positive response with a significant reduction in pain and frequency of attacks.
In a study by the Southern University School of Medicine, 16 of the 19 patients in their trial experienced pain reduction (with 13 getting immediate relief). They also found that 63% remained pain-free for more than a year.
Unfortunately, there have not been enough studies to set consistent expectations and the results can vary from study to study. For example:
According to Dr. Ginard Henry of Weiss Memorial Hospital in Chicago, most patients see a significant improvement within three to five days and the effect can last up to three months.
The three month period is also consistent with comments made by researchers at the Cold Hand Clinic at the University of Chicago, where they say the effects of a single session can last "several months".
Are there Side Effects?
It would be a lie to say the injection doesn’t hurt. However, for a lot of sufferers, the short terms discomfort more than outweighs the ongoing pain of Raynaud’s episodes.
Other than the pain of the needle and occasional bruising, the treatment has very few side effects. A small number of patients report weakness in the hand muscles that completely recovered within three to nine weeks.
What formal studies have been done?
A number of studies have been completed since the first test in 2004. A selection of the studies (with links) are shown below.
|2007||11||All patients had significant pain reduction. 9 had healing of ulcers.||Van Beek et al.|
|2008||1||Reduced swelling, color change and pain||Kossintseva|
|2009||19||84% reported pain reduction and ulcer improvements||Neumeister et al.|
|2009||26||Statistically significant improvement in pain score and oxygen saturation||Fregene et al.|
|2010||33||28 patients had relief of pain||Neumeister|
|2012||1||Decrease in pain with results lasting months to years||Smith|
|2013||10||No difference in cold recovery time||Jenkins|
|2013||18||Complete healing of ulcers and reduction of symptoms within 30 days||Serri et al.|
|2015||10||Increased blood flow and reduction in symptoms. (This study focused on Asian test candidates)||Zhang et al.|
|2017||40||The study found that blood flow was reduced and suggests Botox should not be used with secondary Raynauds patients with Scleroderma.||Bello et al.|
|2017||45||1,000 and 2,000 U of Botox B (Not A) significantly suppressed Raynaud’s in patients with System Sclerosis for periods of 16 weeks.||Motegi el al.|
How can I get it done?
You need to keep in mind that the procedure is still experimental, and definately not a cure. Using Botox for Raynaud’s is considered to be off-label and not what the drug was intended for.
At this stage, doctors that are aware of the procedure only use Botox when other treatment options have failed. The preferred treatment options for severe Raynaud’s are standard vasodilators or intravenous Iloprost to open the blood vessels and to reduce clotting.
If you have ulcers caused by Raynaud’s, you’re more likely to be considered for the treatment. With the risk of gangrene from untreated ulcers, Botox is a viable option to consider as Botox has been shown to reduce, and sometimes repair damage caused by ulcers. If you suffer serious migraines from other medication options, you may also be a suitable candidate.
Sadly some patients may not be suitable for this type of treatment. If you have had Botox before and it hasn’t worked, or you have not tolerated it well, a second treatment is unlikely to help. When the blood vessels have been damaged beyond repair, no amount of Botox is going to be able to regenerate the missing or damaged vessels.
If you live in London, you can try contacting the Royal Free Hospital for information and advice as they are one of the first organizations to offer Botox injections for the condition.
In other parts of the world, you could look out for clinical trials, contact skin clinics or contact Ph.D. students who may be interested in doing extended research or a thesis on the phenomenon. It’s worth noting that previous studies have been completed with a sample size of one patient (see the studies in 2008 and 2012).
Other unusual treatment options include depression medication and drugs that treat male impotence.
The antidepressant Prozac works by increasing the levels of serotonin in the brain. However, Prozac also lowers the level of the chemical in the blood. This is beneficial because Serotonin causes blood vessels to narrow and reduces the flow of blood to the extremities of the body. Reducing levels in the blood helps avoid the narrowing sensation and has been proven to improve blood flow in fingers and toes.
Another option is the use of Viagra. Not only does it help blood vessels in the lungs, but it also improves blood flow to the extremities.
There is no doubt that Botox can help Raynaud’s patients with severe symptoms.
It’s definitely not a cure, and it is not suitable for patients that can be treated with other drugs, therapies or lifestyle choices.
However, for patients with ulcers and previously untreatable conditions, it is well worth considering.
The side effects are minimal and the benefits can be significant.
IMPORTANT : We are not doctors, nor do we pretend to be…
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