The Other Side of RA: Living with Severe Complications
This is the second of two posts that discuss my experience with serious side effects and complications from RA. Side effects have come under control for me, but complications are another story
A complication, is defined as an unfavorable evolution of a disease, a health condition or a therapy. The disease can become worse in its severity or show a higher number of symptoms, become widespread throughout the body or affect other organ systems. A new disease may also appear as a complication to a previous existing disease. RA patients can face many complications, depending on the severity of the case of RA. Below is a short list of complications possible with RA:
- Eye Complications - RA also increases the risk for eye problems, such as Sjogrens Syndrome, which can cause dry eyes, and eye inflammation or uveitis.
- Lung Disease - About 10 to 20 percent of people with RA will develop chronic lung disease at some point. This includes Intrinsic Lung Disease and RA Lung (nodules in the lungs).
- Heart Problems - People with RA have a higher risk of heart disease and stroke, as part of the systemic issues have RA. Managing your RA with medication can reduce this risk.
- Inflammation of Blood Vessels - RA can also lead to inflammation of the blood vessels, or vasculitis. When the blood vessels become inflamed, they may narrow or shrink in size or get weak. In extreme cases, this may stop blood flow.
- Osteoporosis - The inflammation associated with RA can also predispose people to osteoporosis and some RA medications can cause bone loss. Additionally, being physically inactive or sedentary because of joint pain can increase your risk for osteoporosis.
- Low Blood Platelet Count and Anemia - Blood platelets are colorless blood cells important to blood clotting and stopping blood loss. Low blood platelet count is usually caused by a separate disorder, such as RA, or from a side effect of medication.
A Handful of Complications
Two years ago I was diagnosed with Osteoporosis in my hip and lower spine. I started a calcium regimen and a weekly medication as well which seems to have halted the progression of this complication. When you have RA, it is very important to get a bone scan every two years. This is a completely painless test and it can catch this complication at a very early stage. If you have not had a bone scan, ask your doctor for a referral.
I also have eye issues from RA. My muscles that control eye movement are inflamed and have dry eyes as both a complication of RA and from Sjogrens Syndrome. Take good care of your eyes. A yearly visit to your eye doctor is a must! If you take Plaquenil, it’s recommended that you visit the eye doctor every 6 months.
Anemia is one of the reasons we have so much blood work done as your doctor keeps an eye on your blood cell counts. Anemia has plagued me for many years, but happily, iron and Vitamin D supplements seem to keep this under control for me.
I can count the number of headaches I have had in my life on one hand, but last year, I awoke in the middle of the night with a splitting headache. When my wife took my blood pressure, we knew something was wrong. My BP was 225/122 and we rushed to the Emergency Room. I had had a hemorrhagic stroke in the occipital lobe of my brain. Luckily this was a small bleed in comparison to what could have happened. A brain angiogram showed the stroke was autoimmune related as well. Vasculitis had affected the small blood vessels in my brain, making them weak and susceptible to rupture.
Even though this was a "small" stroke, I was in ICU for 12 days, followed by two weeks in a rehab nursing home to regain my strength. I was very fortunate that the only lasting effect from the stroke is a bit of double vision I can control with crystals in my eyeglasses and an eye patch.
Make sure you and your family know the signs of stroke. If you ever have a headache that feels off, a weakening of any muscle group, drooping of the face muscles, or slurred speech and or eyesight, call 911. There are drugs that if given shortly after a stroke has begun can reverse the effects.
A Really Scary Complication
The complication that is currently foremost in my life, and possibly the most dangerous one I have had to face, is heart disease. My new diagnosis is right sided pulmonary hypertension, also known as heart failure.
The right side of the heart only pumps blood into the lungs, which makes it the weaker side of the heart. Pneumonia and some drugs can cause permanent scarring of the vessels in your lungs. This forces the right side of your heart to pump harder to push blood into your lungs and back into the left side of the heart for distribution to the body. Your heart cannot keep up with the demands that your body puts on it and this can cause many problems, such as edema (swelling) and fatigue.
I have more tests and another heart catheterization to finalize my treatment protocol. I do know I will be on blood thinners to help clear excess fluid and another drug to regulate my heart. I also need to refrain from stressful situations and overexertion as heart failure can result in sudden death.
Heart failure is a very serious diagnosis, with a life expectancy of two to four years. This is where RA comes in handy! When heart failure is caused by an autoimmune response, such as RA, it is not considered to be primary. Therefore my cardiologist and rheumatologist feel they can work together on a drug regimen for me that could extend my life expectancy to 10 years or more.
Heart failure is the complication that scares me the most and drove me back into a bleak place. It’s much like when I was first diagnosed with RA and found that I could no longer continue with my career. I felt very alone. How can I have yet another serious diagnosis? The WHY ME’s started to ring in my head.
Thankfully I have a strong support group. My wife is so supportive, giving true meaning to the vow "for better or worse." My parents are very understanding and supportive. I have a great group of friends online, as well. Lene Andersen on this site, and Susan (a friend from another site) drew me out after I went on disability and was very depressed. I now rely on all these friends and family yet again to get past this latest test. I know I will. It is happening already just by writing this post.
By reaching out to try and help others, we also help to heal ourselves. I have always believed in that, now more than ever. If you have any questions, please feel free to ask me in a comment. If I can help, I will.