Author: Marie

June Is Scleroderma Awareness Month

June Is Scleroderma Awareness Month

Posted on by Marie

June is scleroderma awareness month so I thought I would put together some information about scleroderma for you. First, it is important to note that scleroderma is an umbrella term for a group of diseases. I have been diagnosed with limited cutaneous systemic sclerosis so my blog tends to focus on that. If you would like to add to this blog with similar articles for other varieties of scleroderma or even for other autoimmune diseases or chronic conditions please drop me a line using my contact form. I wish I could pay you but this is a personal blog with no advertising to support it. I am not getting paid for my own work but am happy to do it to assist others who may be going through the frustration of dealing with chronic pain and illness.

I originally found these pictures posted on a Facebook friend’s personal website. They reminded me that I really should do something for Scleroderma Awareness Month.

What is Scleroderma
Calcinosis
Raynauds
Esophageal Dysfunction
Sclerodactyly
Telangiectasias
Muscle and Joint Pain
ILD
PAH
Renal Crisis
Shadow

Symptoms

As I mentioned earlier, I have the limited cutaneous systemic sclerosis variant of scleroderma so that is my focus here. This variant used to be called CREST based on the main symptoms of Calcinosis, Raynaud’s, Esophageal Dysfunction, Sclerodactyly, and Telangiectasia. It was changed to the current name limited cutaneous systemic sclerosis when they realized that this variant was systemic and could affect every body system including your organs, entire digestive system, muscles, joints, and even your blood vessels.

I’ve had a few doctors, including specialists, who think that limited means it is not too bad. I’ve also had doctors who didn’t believe me because I didn’t have any major skin changes. For decades I only had a small sliver of hard shiny skin right below my fingernails, now the tight shiny skin extends to my second knuckle. I also have it on my feet. Limited cutaneous means limited skin involvement. The different between limited and diffuse is that limited does progress slower than diffuse and diffuse has wide spread skin involvement. Both are systemic and both can affect everything in your body.

Digital Ulcers

Calcinosis

Calcinosis are deposits of calcium that start on the inside of your body near the bone. They can be extremely painful as they work their way to push through the surface. They can cause these horrible looking digital ulcers. Typically they seem to be on the fingers but they can happen anywhere. I have them in my feet as seen on x-rays. So far, I’ve been lucky. While it is difficult to walk due to pain, they have not caused ulcers.

Ulcers can get so bad that gangrene and tissue death can set in requiring amputation.

Raynaud's

Raynaud’s Syndrome

Raynaud’s constricts the blood vessels to the extremities. In some patient’s only the fingers and toes turn white but in others they can turn blue or purple with exposure to cold or stress.

This can be very painful and if you can’t get the circulation moving again gangrene can set in. My hands and feet will go white and a dark blue jean blue. I used to get asked if I’d spilled ink.

They will turn red when they start to warm up with pain and tingling.

Esophageal Motility Dysfunction

Esophageal Dysmotility

The esophagus (simply put) is the tube that uses a wave-like motion to take your food from your mouth to your stomach. This picture shows decreased salivary production which causes dry mouth and tooth decay no matter how well you look after your teeth. It can also dry your throat making it even more difficult to swallow. If you have Sjogren’s on top of that swallowing becomes even more difficult.

GERD is very common with scleroderma causing acid reflux and heartburn. I don’t like to eat out any more because I am always afraid that I will choke on food that refuses to go down. It happens quite frequently. I recently had my esophagus dilated and food is going down better for now but only if it doesn’t get stuck in my throat first.

Gastroparesis is another dysmotility disorder. In a nutshell it means that your stomach does not empty well. This can get severe enough that you feel full on just a mouthful or two. Vomiting can occur and if it get severe enough a feeding tube is required.

Then there is dysmotility of the intestines. This can lead to severe bloating, constipation, diarrhea, and even obstructions requiring surgery.

Sclerodactyly

Sclerodactyly is the term used when the skin starts getting tight and shiny. In severe cases the hands can become claw-like and very difficult to use. In Diffuse the entire body can be affected. With limited skin involvement is limited to the hands (up to the elbows) and feet (up to the knees).

There can be other skin involvement as well. For instance my skin in “mottled” on my chest and extremities. When I went to a cancer clinic after having a melanoma removed the doctor told me I had skin damage from spending too much time in the sun. I told him that I hadn’t sat in the sun for decades because it made me sick. He didn’t believe me pointing out the colour of my skin as his “proof.” When going over some old medical files at a later date I discovered that there was a name for the discoloration… Livedo Reticularis and in my case, it had nothing to do with the sun and everything to do with my autoimmune diseases.

Telangiectasia

Telangiectasia can appear pretty much anywhere on your body including your eyes. They are broken blood vessels. They can show as red dots like the photo or as red spider webs. I have them all over.

Muscle & Joint Pain

Wide spread chronic pain is a given with scleroderma and most other autoimmune diseases. A really good day for me would be like how you feel when you are running for Advil to help with the aches and pains you get from having a fever with the flu. I hate the question “How is your pain on a scale of 1 to 10?” because too many doctors don’t get my pain scale. When healthy people say a 10, I would be saying a 3. I am vomiting somewhere between 6 and 7 and am totally incoherent and don’t know where I am at 9.

Organ Damage

Systemic forms of scleroderma can cause organ damage. I have PBC or Primary Biliary Cholangitis which is a liver disease that causes high blood levels of alkaline phosphorous. In PBC the bile ducts in the liver become blocked with fibrosis. It is NOT caused by alcohol. It causes liver pain and can eventually lead to requiring a liver transplant if it is not controlled.

As mentioned earlier, I have ILD or Interstitial Lung Disease which is now well controlled with medication but I am being evaluated for PAH or Pulmonary Arterial Hypertension where the pulmonary artery becomes enlarged and the blood pressure in the artery is high.

Heart damage can also occur. I was diagnosed with a “stiff” heart and told that my heart is strong but doesn’t empty the blood properly. Recently some other changes showed on an echogram so I have to go back to the cardiologist.

These are just a few of the things that can go wrong with your body when you have systemic scleroderma. For additional details be sure to follow the links below. I recommend the Scleroderma Education Project as a good place to start because it is an easier read.

The Scleroderma Education Project

I wanted to make sure that I mentioned the Scleroderma Education Project website since it is filled with excellent information for patients that have scleroderma. I love that it explains the different forms of scleroderma and provides updated information in words that are easy to understand. Ed Harris is the founder of this project, has limited cutaneous systemic sclerosis himself, promotes research, and runs a Facebook support group.

Other Links

Please beware of using Dr. Google. There are so many seemingly legitimate websites that have dated and misleading information out there. On many occasions I have seen posts from patients who are terrified that they don’t have long to live. This may have been true years ago but there are new treatments available and current testing means that dangerous complications are caught much earlier giving a much better prognosis. As an example, I was diagnosed with ILD (Interstitial Lung Disease) a few years ago. It was caught in the early stage and treated. While I will take medication the rest of my life to protect my lungs the medication actually cleared up my lungs to the point that only some scarring shows on my lung CT now while previously they were covered in white spots.

Along with the Scleroderma Education Project some other websites you can use to educate yourself are The National Scleroderma Foundation, John Hopkins Scleroderma Centre, Cleveland Clinic, and some other major hospital websites in the US. I’m still looking for Canadian resources but so far all I’ve really found is Scleroderma Canada.

May Is Lupus Awareness Month

May Is Lupus Awareness Month

Posted on by Marie

What Is Lupus?

Lupus Symptoms

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.

Symptoms

Lupus Symptoms

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.

The Devil Whispered in my ear "You are Not strong enough to withstand the storm." Today I whispered in the devil's ear "I am the storm."

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.Org

Lupus Facts

6 Years Average To Get A Diagnosis
Nephritis
Nephritis
Joint Pain
Heart Disease
6 Years Average To Get A Diagnosis
Nephritis
Nephritis
Joint Pain
Heart Disease
Shadow

Some facts you may not know about lupus:

Copied From Lupus.Org Resources

  • 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.

For More Information

Be sure to visit lupus.org for more information or the lupus Canada website.

Viagra ~ A Treatment For Scleroderma?

Viagra ~ A Treatment For Scleroderma?

Posted on by Marie

Lupus, Sjogren’s, Other Autoimmune Diseases, and Gastroparesis

Update

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.

Silvia Petrozza “The Autoimmune Slayer”

I spotted the interview with Silvia Petrozza “The Autoimmune Slayer on the Scleroderma Canada Facebook Page.

Listen to the interview with Sauga 960 AM

Christine Elliott Ontario’s Minister Of Health

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.

Raynaud’s Relief?

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.

Digital Ulcers

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.

Conclusion

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.

Pain Clinic

Pain Clinic

Posted on by Marie

What Do We Do About Chronic Pain?

This is probably one of the most frustrating questions ever and the answers are even more frustrating. It seems that no one really knows the answer. What works for you may not work for me. So what happens now?

For me personally, I can’t say enough about LDN or Low Dose Naltrexone. So far in my journey, it has been the one single drug that has helped the most. When I thought it wasn’t doing much for me anymore I stopped taking it and discovered that it really was working. It just wasn’t controlling as much of my pain as I hoped it would.

Multi-Disciplinary Pain Clinic

Today I went to my first appointment at the multi-disciplinary pain clinic. I had been to a pain clinic in the past at the hospital but found it to be very disappointing. The doctor discharged me because I told him I could not tolerate THC. (It increased my neuropathy pain severely and caused hallucinations. It also sent me to a very dark and scary place.) He had nothing else to offer me.

In October of 2019, I had an appointment at the Scleroderma Clinic at Mount Sinai in Toronto. The doctor recommended a multi-disciplinary pain clinic. Unfortunately, the report got lost and I had to request it again. I finally got the referral but due to COVID did not get a call. Last week I called to make sure the Clinic had received the referral since so many of my referrals go missing (another post someday) and was informed that they’d had a cancellation and could I come in on Thursday. You bet!

Everyone at the clinic was very nice. The doctor actually seemed very concerned and caring. It was the first time in a very long time that I felt like someone actually wanted to help me rather than just write me off.

Treatments Offered

The doctor offered me two treatments. My fears that I would just be dismissed were unfounded for a change. He acknowledged the fact that I had failed so many other treatments due to horrible side effects and never once tried to get me to try something I’d already tried unsuccessfully.

The first treatment offered was lidocaine nerve blocks and the second treatment was a lidocaine IV. The doctor explained that they were both treatments that have been successful for people when everything else has failed so I’m keeping my fingers crossed!

I start my first nerve block treatment next week and have 3 sessions lined up over the next 3 weeks. The plan is to try and break the inflammation/pain cycle. I’m hoping this means that I can get some sleep since I am positive that lack of sleep is making my chronic pain a lot worse than it needs to be.

I’m waiting for a phone call to set up an appointment for the Lidocaine Infusion. The nerve blocks are covered which is a relief since they are weekly treatments. The infusion will cost $30 a session. Worth it if it helps and I believe that is only once every 9 weeks so I can make that work.

My Medical Issues

My Medical Issues

Posted on by Marie

Okay, here goes. This is a quick overview of the medical issues I have had to learn to live with. In future posts I will provide more details about these issues and provide you with links to legitimate resources about each one. As mentioned in my first post, my goal is to help as many people as I can based on my personal experience with these diseases and my years of research.

Limited Cutaneous Systemic Sclerosis (LcSSc)
AKA Scleroderma CREST

This was the first autoimmune disease I was diagnosed with back in the 80s. It took over a decade to get a diagnosis and I was often told it was in my head. I was even sent to a psychiatrist. Lucky for me, the psychiatrist was able to discern that there was nothing wrong with my mental health and that I needed to keep pushing my doctor to figure out what was wrong.

Originally, I was told all I had was Raynaud’s and that the only thing it caused was hands and feet that would turn blue with the cold. This was discovered while waiting for a doctor to do a physical exam. I turned blue in his cold office so he was able to see it happening. I was then referred to the rheumatologist that told me that Raynaud’s was nothing. I know now that Raynaud’s can cause a lot of issues if it is not treated properly. With Raynaud’s the blood vessels spasm with cold or stress and can cut off the circulation to the point that gangrene can set in. Raynaud’s can be a big deal even if that is all you have.

Limited cutaneous systemic sclerosis is a variety of scleroderma that previously known as CREST. Unfortunately, the only thing limited about it is the amount of skin involvement. It also does not progress as quickly as Diffuse scleroderma but can still be deadly if/when it starts to attack the internal organs.

CREST

CREST is an acronym that stands for the most common symptoms of this variety of scleroderma. It stands for: Calcinosis, Raynaud’s, Esophageal Dysfunction, Sclerodactyly, and Telangiectasias.

While the above lists the common symptoms of this subset of scleroderma it does not tell the entire story and so they changed the name from CREST to limited. As mentioned above, the only thing limited is the amount of skin involvement. This disease can affect all internal organs and systems and cause widespread chronic pain.

At some point, I plan to add a lot more information about scleroderma but for now, here is a link to some of what the Mayo Clinic has to say about it. Be sure to scroll down to the complications. Not to scare you but it is important to know how devastating this disease can get. The key to a good prognosis is early detection of the complications. For example, when I was first diagnosed with Interstitial Lung Disease (ILD) I was immediately put on Prednisone and azathioprine (Imuran). At the time of discovery, my lung CT scans showed that the bottom lobes of both lungs were collapsed and my lungs were covered in white spots. With time and treatment, my lower lobes are no longer collapsed and the white spots have pretty much gone. My respirologist discharged me on the condition that my rheumatologist schedule regular pulmonary function tests and keeps an eye on things to ensure that it doesn’t start deteriorating again.

Sjogren’s

Sjogren's

Sjogren’s, is another systemic autoimmune disease. Most patients experience severe dry eyes and mouth which are the 2 most common symptoms. However, Sjogren’s is systemic and often causes fatigue and joint pain.

Sjogren’s can also attack and cause dysfunction of the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and even the central nervous system. Sjogren’s also increases the risk of non-Hodgkin lymphoma.

Primary Biliary Cholangitis (PBC)

Primary Biliary Cholangitis PBC

Primary biliary cholangitis is a liver disease where the immune system attacks the bile ducts and damages them. PBC as it is often called, is a complication of both scleroderma and Sjogren’s. When I was diagnosed back around 2004 it was still called Primary Biliary Cirrhosis. With treatment, it is rare for PBC to progress to the Cirrhosis phase so they changed the name to make it more accurate. Please note that this disease has nothing to do with alcohol abuse. It is a complication of both scleroderma and Sjogren’s.

Interstitial Lung Disease (ILD)

Interstitial Lung Diseases (ILD)

Interstitial lung disease is a yet another complication of both Sjogren’s and scleroderma.

ILD is a fibrosing disorder of the lungs that causes scarring and can lead to respiratory failure if not treated.

I got lucky with this one. My interstitial lung disease was found early and I started treatment with both Plaquinil and Imuran. At my last appointment with my respirologist he declared me stable and discharged me back to my rheumatologist. When it was first found the bottom lobes of both lungs were collapsed and both lungs were covered in white spots on the lung scan. It took time but each lung scan showed improvement. My lungs are no longer collapsed and there is only sparse white spots on the lung scan. Unfortunately, there is still scarring that won’t likely go away. It is recommended by the respirologist that I continue with yearly pulmonary function tests and echocardiograms.

Heart Issues

So far tests show I have a stiff heart which, from what I’ve read, means fibrosis. I’ve also been diagnosed with diastolic dysfunction, and some mild pericardial effusion.

My interventional cardiologist explained that my heart is very strong and can squeeze well but has trouble relaxing so it doesn’t fill up with blood very well. Another report I saw indicates that I have some right-sided pressure which could mean PAH or pulmonary arterial hypertension but no one is saying anything about that yet. Once again, these are all complications of both scleroderma and Sjogren’s.

I’ve also had issues with palpitations and some serious spikes in blood pressure. I don’t have a lot of confidence in my new family doctor at this point as I feel he doesn’t understand my autoimmune diseases. It scares me when he told me no more tests because “they just complicate things.” As I mentioned above, early diagnosis of complications is very important as to the outcome of those complications. I did manage to get him to do a 24-hour ambulatory blood pressure test BUT he had his secretary contact me to cancel my appointment saying that my blood pressure was well within the normal range. I already knew that BUT the spikes in blood pressure are dangerously high. My home care nurse is very concerned in particular with my diastolic blood pressure.

Mental Health

Due to harassment and bullying at work in 2014, I also developed PTSD, anxiety, panic disorder, and major depressive disorder. It was during and after this incident that my autoimmune diseases decided to take a nosedive even though they had been more than manageable prior to this. So, yes Virginia, stress does play a very important role in the prognosis of autoimmune diseases.

Fibromyalgia

Fibromyalgia

More recently, I was informed by the scleroderma specialist at Mount Sinai in Toronto that I had complex pain syndrome and fibromyalgia. I had been told decades ago that I had fibromyalgia but then told no, I had CREST scleroderma. Guess I have it all!

Fibromyalgia is not just aches and pains. It is thought to be caused by damaged nerves.

I’m not sure about the fibromyalgia diagnosis since it was a diagnosis from years ago before I was diagnosed with autoimmune diseases. I was later told I didn’t have it and my current rheumatologist never mentions it so who knows for sure.

Interstitial Cystitis

Interstitial Cystitis

For over a year I would get one urinary tract infection after another. At least that’s what the doctors thought. I did get a kidney infection that put me in the hospital but most were not UTIs.

Doctors were not waiting for the results of the culture growths when I would complain of UTI symptoms and would just start me on antibiotics right away. Eventually, I was referred to a urologist.

It was the urologist that determined that, for the most part, the culture did not grow and yet I always had symptoms and blood and leukocytes in my urine. Tests confirmed that I had interstitial cystitis.

The urologist’s theory was that my Sjogren’s was causing my urethra to be dry and inflamed and that was causing the blood and leukocytes. He recommended Vagifem cream to try and add some moisture. I started using the Vagifem at the first signs of symptoms and it helped to a degree. It was not until my internal medicine doctor prescribed lactated Ringer’s IV fluids every 3 weeks that I stopped having symptoms.

The IV treatment has helped with all dehydration-type symptoms including headaches and cramps but if I have to go longer than 3 weeks I start to get pretty sick again.

Melanoma

Melanoma

Melanoma is the most insidious of the skin cancers. It doesn’t look like much but it will spiderweb underneath the skin where you can’t see it and can be fatal if not caught.

This picture is similar to what mine looked like.

I was lucky enough to have an observant family doctor who referred me to a dermatologist right away. The dermatologist thought the mole looked suspicious as the edges were not well defined and ordered a biopsy that came back positive. When the melanoma was removed I received the good news that they got it all and the margins were clear.

While my melanoma has been cured, I thought it important to put down here since it is possible that I was at a higher risk due to my autoimmune diseases.

Living Document

This page will be a living document and will likely have updates as I get organized and start adding more and more information. I think this page will be a sort of site map with a separate page complete with links to each disease and the complications of each disease. Please come back and check again.

LDN or Low Dose Naltrexone

LDN or Low Dose Naltrexone

Posted on by Marie

What’s The Difference?

Disclaimer: I am not a doctor or any kind of healthcare professional. I am a patient using my own experience and research to try and help others by pointing them in the direction of websites that I personally trust based on their reputation.

It is very important that we understand the difference between Naltrexone and LDN or low dose Naltrexone.

Naltrexone comes in 50 mg and 380 mg pills and is known as a drug given to people who are dependent on opiates or alcohol at doses of 50-100 mg a day. This is the use that most doctors are aware of.

Low Dose Naltrexone or LDN is a much lower dose (typically 4.5 mg or less) that has many different uses. Mainly, at this low dose it is excellent for treating chronic pain caused by autoimmune diseases and fibromyalgia. It also helps with things like depression, cancer, and lyme disease just to name a few. For a more complete list of conditions that can be helped see the LDN Research Trust website.

LDN is a safe, non-toxic, and inexpensive drug that helps regulate a dysfunctional immune system.

Where To Get LDN

LDN does require a doctor’s prescription. Convincing your doctor to let you try it may present you with a difficult task if they are not open minded. This is because a lot of doctors are not aware of the off label use of the much lower doses.

My advice is to start by doing a Google search of compound pharmacies in your area and calling them to see if they prepare LDN. I asked for the cost of a 3-month supply at 4.5 mg a day because 4.5 mg is the typical dosage to work up to.

I personally prefer to get LDN in a liquid format rather than capsules. This is because the LDN Research trust recommends starting low and going slow. It is a lot harder and more expensive to have capsules made at several different strengths when the liquid is just put into a syringe to measure the dose and then squeezed into your mouth. My first prescription of capsules cost me $130 for 3 months but now I get liquid it is only $80 for 3 months.

With a little luck, the pharmacist will tell you what doctors are prescribing it so you can give them a call if your own doctor won’t prescribe it. I got lucky and my opthamologist looked it up after I told her about it and said “Well, it looks pretty benign and we’ve tried everything else so why not?” Some rheumatologists are watching studies featuring LDN so they may be a good option as well.

If you can’t find one of your own doctors to prescribe it you may be able to find a prescriber close to you here or use the Telemed system.

How To Take LDN

This might be a bit of an exaggeration but there seem to be as many different ways of taking low dose naltrexone as there are people taking it. Typically you would start at 0.5 mg and slowly increase to 4.5 mg. Since we are all different it takes some experimentation on your part to find your sweet spot.

I personally found that when I moved up to 4.5 mg that it was too much for me and it stopped working so I went back down to 4.0 mg. I also find that occasionally LDN just stops working for me. When that happens I simply skip a dose to “reboot” my system. That works every time.

There is a dosing guide here. Please remember that it is just a guide and you need to find what is right for you and the symptoms you have. Notice that the LDN Research Trust has included some special considerations on this document for patients with certain conditions.

Normally, you take LDN at night time BUT that is also something you can experiment with. Some people find that they get too much energy after they take LDN so taking it at night means they have insomnia. How do you fix that? Simply take it in the morning.

Side Effects

Most people do not experience any real side effects since the dose is so low. I personally experienced some mild headaches when I fist started taking it when I woke up in the mornings that would go away after I had been up for about an hour. In the beginning I found that I slept much better so taking it at night worked really well. Then things changed and I found it gave me insomnia so I now take it in the morning.

The key is to start at a very low dose and slowly increase it. Everyone is different. I can’t say this enough. You have to experiment with the dosage and the time to take it. In this case, more is not better. If your dose is too low then you won’t get maximum benefits. If your dose is too high then you may suffer more side effects and it could just stop working. Some people need to “reboot” by skipping a dose.

A list of side effects can be found here. Please keep in mind that ALL drugs have a list of side effects that can be scary. You have to weigh the benefits against the side effects. A lot of the side effects that your doctor will see are based on the much higher doses given to people who are addicted. Since the dose with LDN is so much lower the side effects are going to be a lot milder. Most people I have talked to or who have posted in several of my different support groups are claiming that they have few or no side effects. Most common are vivid dreams (I haven’t been that lucky) and mild headaches when they first start or if they increase the dose too quickly.

How Does It Work?

This is my interpretation of how LDN works based on videos and reading. Naltrexone is an opioid antagonist meaning that it blocks the opioid receptors in our brain and stops opioids from binding to the receptors. In large doses this takes away the effect of opioid use. In low doses however, it blocks the receptors just for a few hours which causes a rebound effect. This rebound effect makes your brain create additional opioids and endorphins. This is why it helps with depression.

The opioids made by your brain are not the same as drugs. They are natural and a good thing. Endorphins help modulate the immune system so unlike a lot of drugs that try to boost the immune system or suppress it to deal with disease LDN tries to make the immune system work the way it is supposed to work. See here for a more scientific explanation. There are some videos that show how it works on this page as well.

LDN Research Trust

First I want to say that I have no affiliation to the LDN Research Trust. I came across their website when I was researching low dose naltrexone and found it to be a very complete and accurate source of information.

This organization is a non-profit research organization that has doctors and pharmacists as well as researchers on their team and they are registered. I trust the information I find on their website. I also belong to their Facebook Group and find it helpful as well. Some people don’t like this group because they are more strict with their rules. This is because they have to follow government regulations unlike other support groups.

They will turn off commenting when people start to present misinformation for example and will remove posts that go to links that are not on their website. They have to make sure that the information posted in the group is accurate. The mods are members of the LDN Research Trust team and have access to the medical professionals so anything they say is accurate. You can’t post links to other sites because they can’t be sure the information is accurate. As we all know, there is a lot of misinformation out there.

Things You Can Find On Their Website

  • Guides: There are several PDF guides that give very good information and explanations. I downloaded the Prescriber and Dosing Guides and printed them to take to my doctor to initiate the conversation about trying LDN. These guides have been translated into several different languages.
  • Videos: Some videos are presented by doctors and researchers and others by patients. It is worthwhile watching some of these. Follow this link and click on Media in the menu.
  • Links To Social Media: In particular this is their Facebook Page. If you go to their Facebook Page there is a button you can click on to go to the group.

How LDN Has Helped Me

I found some relief from the very first dose of LDN. For some it takes time. Before I started LDN my pain levels were quite high and my fatigue was totally overwhelming all of the time. My life consisted of laying on the couch, sleeping, feeling miserable and in constant pain. The only time that varied was when I had to go to the doctor’s or for medical tests. I used to wish that I could go to sleep and just not wake up.

I am far from being cured and still have a long way to go but now I can do a bit of housework as long as I pace myself and before COVID I actually enjoyed going out to socialize now and again. That was something I hadn’t been able to do in years.

That’s all for now! I hope this summary helps. I strongly urge you to spend time on the LDN Research Trust’s website and learn more about low dose Naltrexone. I’m sure glad I did!