With the crazy weather lately, all the news about hospitals being full of flu patients, some actually overflowing out to parking lot tents, major cities declaring public health state of emergencies. I was thinking just after the holidays I would like to post an article on the added risks we face due to our suppressed immune systems.
Little did I know I would have real time, up close and personal facts to report to you on the subject. You may or may not know, depending on the length of time you have been treated for RA, that the main villain in RA is your immune system. It is mistaking your synovial linings around your joints as an enemy of your body. As it is programmed to do, your immune system attacks this lining and as it slowly erodes the lining you also begin to lose cartilage, and finally bone. (this is a VERY simplified explanation) There are many different parts of the immune system that may be at fault with RA, T cells, B cells, TNF, IL-6 and IL-1 are only a few. The biologic drugs (Humira, Orencia, Enbrel etc) we take to try and control RA work on different areas of the immune system. Where my RA may stem from an issue with B cells, yours may be from IL-1. AND the drugs may affect each of us differently. This is one of the reasons that makes RA so difficult to treat and hard to find the so called “magic bullet” that will work for you.
In any case, DMARDs (Disease Modifying Anti Rheumatic Drugs) such as Arava and Methotrexate along with Biologics work by blocking or shutting down a targeted part of your immune system. In a VERY simplified nut shell “slow the immune system down, and you slow down the advance of RA”. It is much, much more complicated than that, but for this article what you need to remember is that a key part of treating RA is LOWERING your immune system. If you are being treated with DMARDS and/or Biologics you are considered immunocompromised.
Now, with all the medical mumbo jumbo out of the way, I can share my story of immuno-suppression that I just experienced. We had traveled to Pennsylvania for the holidays, traveling is hard on me, as I am sure it is on you as well. We made it home in early January and after a few days I was feeling back to my old RA self again. I was puttering around in my work shop, saw a few friends and we even adopted a new rescue dog Bella the Min Pin.
A week after we adopted Bella I was having a bad day with fatigue and pain, you know how those come and go, it was rainy and chilly out, just an all around nasty day. That evening I was feeling particularly run down, just “off”, no real huge issue, just no energy and increased pain levels. It was 8 pm, I took a pain pill and told my wife I was going to bed.
I woke up at 4 am, got up and made my way into the bathroom. I started having coughing fits and was soon coughing up blood. I remember my wife coming in and saying she was calling 911, but then I have a big blank spot in my memory. Shadows and small clips of things, mostly from what Laurie told me afterwards. She told me what happened, and I would remember just a small bit of what she was explaining. My memory really does not clear up much until I was in a cardiac room at the ER. I was on an IV of solumedrol, wired to every contraption known to mankind and was on oxygen as well. Laurie was beside me and the doctor was stating I had been in respiratory arrest, had severe pneumonia and a hyper inflated lung. He wanted to know if I had a living will, Laurie said no, and he then asked if I would want “heroic measures” if I were to go into arrest again. He said he could put me in a coma, intubate me and put me on a respirator, but there was no guarantee I would wake up. This is not really the conversation you want to wake up to! Laurie did say to do whatever they needed to do to save me, fortunately I did not go into arrest again.
The hospital I was at is no exception to the flu plague crossing the country, I needed to be admitted to the ICU, and had to stay in the ER cardiac room for 8 hours until a room opened up for me upstairs! I was put on Levaquin and Zosyn by IV and other antibiotics by mouth. I was also placed on a breathing assist machine, much like a Bi-pap, but with a nebulizer and oxygen as well. The second I started to breathe in it would kick in and force air into my chest, sounds painful, but it was actually very helpful as I was having such a hard time breathing. After many x-rays, an ultrasound and four days in ICU I was well enough to move to a regular hospital room with quarantine restrictions enforced. I was not contagious, the fear was I would acquire another infection from the hospital itself. MRSA, Flu etc were real concerns, my immune system, already compromised, was now in tatters from fighting the pneumonia. An odd thing with this case of pneumonia was after I arrived at the ER, I never once coughed again! The doc desperately wanted to test anything I coughed up, but I never did! He said my body apparently absorbed the fluid in my lungs as the drugs fought off the infection. I also have Asthma that presents as COPD, and RA lung, an Interstitial lung disease. According to my attending doctor and the Pulmonologist,the previous scarring and disease progress in my lungs made it impossible for me to move the fluid out of the small airways in my lungs, which was no help in conquering the pneumonia and may have been a factor in how fast the infection took over. I spent a few more days in the hospital until the doctors felt I was better off going home and staying in self quarantine than I was staying in the hospital, dodging bacterial bullets as it were.
I was SO happy to be home! I was too fatigued to do anything but sleep really for the first week. Finally my appetite started to come back and some energy as well. At my first follow up with my GP he told me to expect it to take at least three days of recuperation for everyday spent in the hospital. He wasn’t kidding! It is just over three weeks since I was discharged and I am still not feeling 100 percent back to where I was prior to being admitted. I had to stop taking MTX and Arava while I fought the infection, which of course does not help with the fatigue.
We walk such a thin line when you think about it. Because the benefits outweigh the dangers, we take powerful medications to help control RA. When faced with another disease or illness however, we must stop the RA drugs, which can send the RA spiraling out of control again. Now that I have won the battle against pneumonia, I must start beating the RA monster back into submission once again.
The biggest thing I would like for you to take from all of this is the fact that with a compromised immune system something like this is possible to happen to any one of us. I was feeling “off” and eight hours later was fighting for my life. If you feel like something is not quite right, trouble breathing, more aches and pains than usual, dizziness etc. PLEASE see your doctor or go to the ER. Better safe than sorry.
I would also like to thank you, many of you sent me emails or cards while I was in the hospital and after I returned home, they truly made my day! On my next post I want to discuss the serious need to receive your flu and pneumonia vaccines when they are due.