Lupus is a chronic (long-term) autoimmune disease. No one knows why you get lupus or why it appears to affect women more than men. Even children can develop lupus.
There is no cure but there are treatments for symptoms. Current treatments will help some patients but not so much for other patients.
Lupus typically causes chronic pain and reduced quality of life. It can become life-threatening if the disease starts to attack the internal organs.
Most patients don’t have “just” lupus. A large number have Sjogren’s as well and/or other autoimmune diseases. Some of us have Overlap Disease which is multiple autoimmune diseases with symptoms that overlap. My doctors can’t tell me which disease is causing each of my symptoms. For example, the lung disease I developed can be caused by my Sjogren’s, Scleroderma, or lupus.
Lupus can target the entire body from head to toe as this picture shows.
Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. You can change that! Help the Lupus Foundation of America raise awareness of lupus and show support for those who suffer from its brutal impact
Lupus is a chronic autoimmune disease that ravages different parts of the body.
No two cases of lupus are alike. Common symptoms include joint pain, skin rashes, overwhelming fatigue, and fevers that last for days or weeks. Most people with lupus don’t look sick.
Lupus can impact any organ or tissue, from the skin or joints to the heart or kidneys. Two leading causes of serious illness and death from lupus are kidney disease and heart disease.
Lupus usually develops between ages 15 and 44 and it lasts a lifetime.
Lupus can strike anyone, but 90 percent of the people living with lupus are females. Men, children, and teenagers develop lupus too.
While people of all races and ethnicities can develop lupus, lupus occurs two to three times more frequently among African Americans, Asians, Hispanics/Latinos, Pacific Islanders, and Native Americans than among Caucasians.
While the causes of lupus are unknown, scientists believe hormones, genetics (heredity), and environmental factors are involved—more research is needed to better understand the role of these factors in people with lupus.
Lupus can be expensive to live with and treat. The average annual direct and indirect costs incurred by a person with lupus can exceed $21,000 annually, a higher cost per patient than those living with heart disease, bipolar disorder, chronic obstructive pulmonary disease, diabetes, hypertension, and asthma.
Lupus can be difficult to diagnose. There is NO single blood test to diagnose lupus, and its symptoms mimic those of other diseases, vary in intensity, and can come and go over time. More than half of those afflicted with lupus suffered at least four years and saw three or more doctors before obtaining a correct diagnosis of lupus.
Early diagnosis is crucial to preventing long-term consequences of the disease. If you notice signs or symptoms of lupus, be sure to engage your doctor and ask questions.
Lupus, Sjogren’s, Other Autoimmune Diseases, and Gastroparesis
Since I wrote this article I have discovered additional information that Sildenafil/Viagra is also being studied for gastroparesis! I will need to create another article! Could it be that Viagra will be helpful for many different autoimmune disorders and complications?
It has been a while since I have done anything here but this morning I heard a radio show that intrigued me so much I had no choice but to write about it.
What I found so intriguing about Silvia’s interview with Sauga is the fact that she has been advocating the use of sildenafil/Viagra as a treatment for certain aspects of scleroderma. Silvia wants to see coverage for “the little blue pill” by the Ontario Drug Benefits Program (ODB). She says that one or two pills can keep scleroderma patients out of the hospital for treatments that are high risk and take at least a couple of days of 15-minute monitoring. Sounds like big savings to me. If it works perhaps more people could be treated because so many doctors won’t prescribe these risky treatments.
Silvia has been working with Christine Elliott to get coverage for nearly 3 years now. There is concern that the June provincial election will mean having to start over with the new minister of health. I’m hoping that the new minister will be empathetic after reading whatever files Christine Elliot has on this.
This article talks about a few of the symptoms of systemic sclerosis or systemic scleroderma and how the little blue pill may be able to treat some of them.
Types Of Scleroderma
To start, it is important to know that there are several different types of scleroderma that confound the issue for many doctors and that patient symptoms vary greatly. (See symptoms of systemic sclerosis)
The Scleroderma Information Project is one of the better websites I have found to obtain a wealth of good solid information about scleroderma. The man behind it all is Ed Harris who has the limited form of scleroderma himself and is a researcher in the US. The chart showing the different types of scleroderma is from this site.
Based on the radio interview, I believe that Silvia has Diffuse Scleroderma or Diffuse systemic sclerosis which means that along with all the internal involvement she has skin involvement as well. Scleroderma is an umbrella term for the various types and the names have all been updated which can lead to even more confusion.
I have limited cutaneous systemic sclerosis. Don’t let the word limited fool you. Notice that the word cutaneous comes after limited so it means limited skin involvement. My skin is only hard and shiny on my fingers, palms, and feet. My mouth is getting smaller, and I don’t have many wrinkles around my eyes for my age. These are the only outward signs I have but on the inside, I am a mess. I also have multiple organ involvement which comes with its own challenges.
Why am I putting this out there? To try and bring some awareness of what people with scleroderma are facing because far too often we look healthy. I don’t believe I look all that healthy anymore though. I think my disease has been ignored to the point that I can no longer compensate.
People have heard of lupus and doctors understand lupus better. That does not mean that the medical system is good to those with lupus because it is not. Scleroderma is rare and doctors often don’t think we are sick because most of us do not look ill unless there is a lot of skin involvment. To confuse the issue I many doctors equate how sick you are to the degree of skin of skin involvment. I have very little skin involvement and wish I had a dollar for every doctor who told me that I either don’t have it or I’m not that sick. It has only been the last few years that I’ve really shown any sign of skin involvment and it is very little in spite of having scleroderma for decades. I do have a lot of internal issues including heart, lungs, veins, and my entire GI system, not to mention problems with my eyes.
I have not been given a formal diagnosis of Overlap yet but more and more I believe that is what I have rather than limited. I asked my rheumatologist if she would test me for lupus because I’ve had what looks to be the lupus butterfly rash for quite some time. I was originally diagnosed with rosacea but none of the rosacea creams worked but the cream I was prescribed for my recent diagnosis of psoriasis which is also prescribed for lupus did. She looked at my chart and said “Oh, you do have the lupus antibodies so we don’t need to test.” When I asked why I wasn’t informed about it she didn’t have an answer for me. When I asked if I had psoriatic arthritis I was told that it was entirely possible but it would be too difficult to get a formal diagnosis because the symptoms overlap so much with scleroderma and Sjogren’s (yes, I have that too). From what I’ve read about psoriatic arthritis it does fill in the gap for a few of my symptoms that are not listed for my other autoimmune diseases.
Can The Little Blue Pill Actually Work For Scleroderma?
According to Scleroderma News, the answer could be YES! It has already been approved in the US and Europe for Pulmonary Arterial Hypertension or PAH
Sildenafil Approved For PAH
Sildenafil, the main ingredient in Viagra, has already been approved to treat PAH, a complication of scleroderma, by the US Food and Drug Administration (FDA) in June 2005 and by the European Medicines Agency in October 2005. Studies showed that Sildenafil significantly reduced blood pressure in the lungs thereby reducing the effects of PAH.
For those not familiar, Raynauds is disease where the blood vessels spasm in response to cold, stress, or emotional upset. This happens mainly to fingers and toes. For me, my entire hands and feet are affected. For others, it can also happen to the knees, nipples, and nose.
When this happens the affected body parts can turn white or even blue! This is very painful both when it happens and when blood flow is restored and turns the hands red. Raynaud’s can also cause painful sores that are difficult to heal.
This video is from the Raynaud’s page on the John Hopkins website. It shows what happens during a Raynaud’s attack.
Clinical trials show that Sildenafil appears to decrease the number of Raynaud’s attacks that scleroderma patients get but does not seem to have any effect on the severity.
Of interest, Raynaud’s can happen on its own or with many different connective tissues or autoimmune diseases so could be a treatment for these patients who have Raynauds also. Raynaud’s can also be caused by smoking, chemical exposure, injury or trauma, repetative actions such as typing, using vibrating tools such as a jack hammer, and as a side effect of certain medications.
Sildenafil may be an effective treatment for Raynaud’s patients who are resistant to the current treatment of blood pressure medications or those of us whose blood pressure is too low to take blood pressure meds.
As you can see, digital ulcers are nasty looking sores that can be caused by Raynaud’s and the resulting lack of blood flow. These sores are often infected. However, I read a post by someone in one of my support groups about how she was made to feel like a fool for going to the ER for help with one of these painful sores that was not infected.
The doctor laughed at her for coming to the ER for a small sore on her finger. Unfortunately, many doctors don’t understand what we go through and we are often treated this way for just about everything we go to the ER for. Most of us just stop going. In 2015, I had a tiny blister on my baby finger that took me to the ER. I’d had a very severe bout of Raynaud’s several days prior caused by an extreme emotional upset at work (harrassment by supervisors) and my baby finger stayed blue for well over a week and would not pink up. It is still sensitive to this day! I was lucky that my appointment with my rheumatologist happened while I was dealing with this issue. She prescribed a nitroglycerin cream to try and get the blood flowing again. It hurt like the dickens every time I applied it but the concern was that it could turn to gangrene and require amputation if the blood didn’t start pooling again.
I think it was only because I had the prescription with me that the ER doctor believed my story and took a closer look at my finger. She declared that it was infected and that she would lance it. She was amazed at the amount of pus came out because it only looked like a blister on the surface. I was given a course of antibiotics.
I consider myself to be lucky that my sore was just an infection because a lot of doctors don’t get that these digital ulcers start on the inside at the bone and work their way out! They are quite nasty and extremely painful especially when infected. They can even lead to amputation if gangrene sets in which does happen.
Clinical Trials For Digital Ulcers
The result of a clinical trial in France showed that sildenafil reduced the number of digital ulcers present compared to a placebo. Unfortunately, the trial did not prove it’s primary focus that sildenafil improved the healing of digital ulcers because there was a high number of healing in the placebo group as well. This may have been due to patients in the trial taking the placebo that were also taking calcium channel blockers were greater than the number taking blood pressure meds in the sildenafil group.
However, the sildenafil group did show a higher number of healing ulcers than the placebo group. It was just not determined significant.
In my opinion as a scleroderma patient, I’m not a researcher or medical person of any description, I think there may be something to the little blue pill. Sildenafil is marketed by Pfizer as Revatio and is the main ingredient in Viagra.
I for one am keeping my fingers crossed that Silvia Petrozza is successful in getting this treatment covered by the Ontario Drug Benefit Program. It seems rather absurd that it is not covered already when the alternative could be several days in the hospital on a regular basis for risky treatments requiring monitoring every 15 minutes.