A social network called myPHteam published an article titled “Raynaud’s Phenomenon and Pulmonary Hypertension: What’s the Connection?” While we’re happy to see other sites promoting Raynaud’s awareness and providing patient information, this article appears to have some misconceptions on how the two medical conditions are associated and the symptoms they share.
Here are a few points in the article we find questionable, misleading or inaccurate:
- Raynaud’s is “a vascular problem” – This statement leads someone to believe that those with Raynauds have a vascular disease, which isn’t true. A small set of Raynaud’s patients may have the condition secondary to a vascular disorder, but for the majority of sufferers with the primary form of Raynaud’s (90%), their circulation is generally normal except for those moments when a Raynaud’s attack is triggered by exposure to cold or stress. Here’s the NIH description: “Raynaud’s phenomenon is a transient and peripheral vasoconstrictive response to cold temperatures or emotional stress.” So while Raynaud’s involves a vascular reaction during brief intervals when blood vessels constrict, it’s a short-term response that is unexplained to date as to the cause. A “vascular problem” is not the cause, it’s only a response that involves the vascular system.
- With Raynaud’s “fingers or other extremities begin to turn white or blue because blood vessels are blocked, stopping blood from flowing to these areas.” – It’s not that blood vessels are “blocked,” they are narrowed. We don’t want sufferers concerned that they are about to have a stroke! And it’s not that the blood vessels are blocked from flowing to the extremities, it’s that the body is reversing the blood flow, sending it to the patient’s core in order to protect their vital organs. It’s a natural human reaction – an exaggerated version of the “flight or fight ” response that happens when the body thinks it’s under attack from extreme cold or stress. It’s just that for those with Raynaud’s, the threshold for this process to occur is much lower than for a person not suffering from the disorder. The average person might have this experience at -50 degrees or someone puts a gun to their head. With Raynaud’s, it might be 60 or 70 degrees or after a highly stressful day at work. But the premise is the same; once the body perceives the threat is over (patient gets warm or calm again), the blood flows back to the fingers, toes or other extremities and normal color is restored to those areas.
- RP (Raynaud’s Phenomenon) and primary PH (pulmonary hypertension) can occur together; both conditions are related to blood pressure or blockage of blood flow. This statement makes it sound like someone with Raynaud’s has similar issues to someone with pulmonary hypertension – but with Raynaud’s, as stated above, the narrowed state (not blocked) of a patient’s blood vessels is short-term, not continual. As for blood pressure, there’s no connection between blood pressure and Raynaud’s. The statement references “primary” when referring to PH, and it’s assumed the statement is also referencing the primary form of Raynaud’s – as both conditions in the primary form are unexplained as to their cause. But unlike Raynaud’s, where the primary form represents 90% of all sufferers, the primary form of PH is quite rare – we’ve seen it estimated as low as 2 people per million. The secondary form of PH, where the condition is a byproduct of another disorder, such as heart disease, high blood pressure or chronic lung disease, is the more common form of that disorder.
- Because these two conditions have similar symptoms and biological mechanisms, many of the same treatment options are used for both RP and PH. While true, both conditions can benefit from keeping the body warm and avoiding caffeine, smoking and meds that constrict the blood vessels, the treatment options for the two diseases are not largely the same. For many primary Raynaud’s sufferers, the condition is manageable with lifestyle changes, but for those with more severe symptoms, calcium channel blocker drugs that work to open the blood vessels are clinically proven to help alleviate Raynaud’s symptoms. For PH, these same drugs have the potential to be effective, but the Mayo clinic is quoted as saying “only a small number of people with pulmonary hypertension improve while taking them.” There are a whole host of other drugs used to treat PH, including blood thinners, water pills, oxygen therapy, plus a number of vasodilators, GSC stimulators and more that are not used to treat Raynaud’s. So the overlap here is minimal.
- Use of cholesterol-lowering drugs (statins) for Raynaud’s patients – Later in the article, the author mentions the use of cholesterol-lowering drugs (statins) for Raynaud’s patients. The only references we found for these drugs applied to Raynaud’s was some promising research from 2017 studying its benefits for scleroderma patients with the secondary form of the condition. The drugs helped reduce the incidence of digital ulcers in these patients. However, those with the primary form of Raynaud’s – the form being more closely associated with PH in this article – are not likely to suffer from severe symptoms resulting in painful ulcers. To date, we’re not aware of these drugs being prescribed specifically to treat typical Raynaud’s symptoms.
- Many of the comorbidities (conditions that occur together in the same individual) that occur with RP are also present in those living with PH – After this statement, the authors list these conditions, including: blood clots, liver disease (cirrhosis), congenital heart disease, and connective tissue disease. This may be the most disturbing statement in the article. Primary Raynaud’s does not lead to blood clots. The only connection with clots is for those with the secondary form, and even then, it’s the primary ailment – not the Raynaud’s – that’s associated with potential blood clots. Raynaud’s has no association with liver disease. And, only in secondary Raynaud’s patients is there any connection to heart disease or connective tissue disease, and that’s by definition because these are both primary ailments that can cause Raynaud’s, not the other way around.
Here’s the full article: Raynaud’s Phenomenon and Pulmonary Hypertension: What’s the Connection?
We hope the above information helps clarify some of the misconceptions and inaccuracies that have been made between Raynaud’s Phenomenon and pulmonary hypertension. If you find more articles or resources in your travels where you question their relevance, please share them with us at info@raynauds.org.
