Sick Days, No thanks!!

Vomiting is one of the many side effects of Methotrexate

Vomiting is one of the many side effects of Methotrexate

Being part of a support group, I check daily posts written by fellow RA sufferers. In a recent post called “MTX questions” a person asked what others do in regards to taking their MTX, (Methotrexate). Do they take it Friday and feel sick on Saturday or do they take it Sunday and feel horrible for Monday? This is a common question and it gets addressed often. For those of you that don’t know, Methotrexate is a chemotherapy drug, also known as a DMARD and it works by suppressing the immune system. For those of us with an autoimmune disease, the common thought is that an autoimmune disease means an overactive immune system. I have found information that states autoimmune diseases are simply the body confusing healthy tissue for non-healthy tissue, meaning it’s not a system that’s overactive as so much it is an immune system that isn’t working correctly. Suppressing the immune system does not make it work correctly. Instead, it keeps the body from destroying itself, kind of. Methotrexate may cause damage to the liver, intestines and sometimes the lungs, just to name a few. Although it doesn’t seem like methotrexate is a good option, doctors don’t present many other options when you get diagnosed with RA. And you can’t go on living with uncontrollable inflammation. Inflammation in itself, if left uncontrolled can cause cancer, intestinal damage, organ damage, other diseases and with RA will most likely cause joint erosion and deformation. So although taking a toxic drug like methotrexate seems out of the question, not taking it is just as scary.

It’s no wonder I kept searching for alternative options. I was tired of dreading my weekends. On Monday and Tuesday I still felt like I was a little bit “sick” from the methotrexate. If you haven’t taken this drug and it hits you hard like it did with me, this is what I experienced: The next morning after taking methotrexate I would feel more swollen, more painful and more stiff. My kidney area always felt like it had been kicked in the night and this would last until later in the evening. I would feel extremely fatigued and as if I had slept on rocks. Imagine you haven’t slept in 2 days. That’s how fatigued I felt. Or imagine what the flue feels like. That’s exactly how it was, resting both Saturday and Sunday so I could prepare for the following work week. Even running a low grade temperature wasn’t out of the question, of course this could have just been my RA at work. My hair would always fall out in mass amounts on Saturday and it would lessen as time went by. My eyes would be somewhat bloodshot and I would generally feel less hungry than normal for a few days. I wouldn’t exercise over the weekends. Instead, I would try and “recover” until the week started again and try to summon up energy to get myself to the gym after a few days of shaking off the methotrexate side effects. Heck, I was one of the lucky ones that didn’t throw up after taking methotrexate, a common side effect. As time went on having Rheumatoid Arthritis, I found myself becoming weaker and weaker. Workouts were less effective. My resistance level became less and less on the eliptical machine. I no longer did weights because the swelling of my wrists and fingers made it impossible. I continued to at least work hard at strengthening my knee joints. I figured that was the most important-being able to walk, so I made it my top priority.

When I finally freed myself of the methotrexate hangover, I felt like I was on the right path. And speaking of hangover, being on methotrexate meant you couldn’t drink a drop of alcohol because the drug itself does a # all on it’s own to your liver. Being off the drug meant I could drink again. Though I know alcohol is a poison, I tested my theory out on my own liver….just how bad can it be compared to methotexate? I was getting monthly blood tests because doctors have to keep track of how your liver is functioning and I would closely monitor my tests. At one point in time, just 10mg of methotrexate (a very small dose) elevated my liver enzymes. Yet when I went off this drug, one weekend I purged on alcohol. I came in for my test and didn’t tell them I was off of methotrexate. When the results came in, my liver was functioning better than it ever had while I was on methotrexate. Go figure!!

So truly, the reality is methotrexate is hard on your body. For those of you that take it, I feel for you. If your side effects are bad, giving up your weekends to a drug is a horrible thing to experience. I wish you all the best of luck in your journey with an autoimmune disease, or if you know someone who has an autoimmune disease please be compassionate as I’m sure they could use the support.

Choosing the Alternative Route

An Apple A Day Keeps The Doctor Away

An Apple A Day Keeps The Doctor Away

This evening I visited my on-line Rheumatoid Arthritis Support Group. I visit the group, not because I’m in pain, but because I want to share information. I used to visit daily to receive support from the wonderful people who share their heartfelt stories. Because I’ve experienced the lowest of lows with RA I feel like I can relate to my fellow online friends and offer the support they need now that I feel great. It’s tough however when I read post after post about their failing medications. I wish for all of our sakes, the choices were easier to make and that drugs given by doctors worked consistently.

I have a theory that when the body’s immune system is suppressed, the body will continue to fight and cause the immune system to boost and the drugs to stop working. The opposite of that, is that by taking alternative medications, the body is given a chance to heal and correct itself. If given enough time and the right medications, I do think this is possible.

One of my friends from the online support group who had disappeared for the past 6 months wrote to me. She had started on Low Dose Naltrexone (LDN) when I started and began antibiotics when I began Serracor-NK. She is now in complete remission. Not only is she not having RA symptoms but she has quit taking LDN and antibiotics for many months now. So what happened? Well I think her body corrected itself, and hopefully it will stay that way forever. If for some reason it goes haywire again, perhaps LDN and antibiotics will again be the ticket to a better functioning immune system. And as well, antibiotics are on the back of my mind, in case Serracor-NK ever decided to stop working. I have complete faith that LDN will continue to work simply because I know other people who have been on LDN for years. One man in particular, Larry has noticed slight changes. He has Multiple Sclerosis, and it wasn’t until his fifth year of taking LDN that he was able to snap his fingers for the first time since MS had started. Now that’s exciting! I know to some people, it’s like, big deal, but when you have an autoimmune disease, it’s little things, liking being able to sleep through the night, make a fist, walk down or up a flight of stairs without issues that can put a very big smile on your face. At this point, I can’t tell what LDN does, I just know my pleurisy has never come back, nor has my chronic sore throat or blurry vision. I am hoping that just like Larry, LDN will continue to heal my body over time.

Before I even began alternative medications, I thought about it from day one. I already had a distrust towards doctors and the medical system for many many reasons throughout my life. Don’t get me wrong, I still go to the doctor, or at least I did when I had insurance. I believe as well, you can to a certain extent, help the medical system help you and not just go through life with blinders on. I have fought at times for certain medications or doses, and even for specialists. Getting your doctors to work for you, rather than you working for them is difficult and exhausting but in the end, it can be worth it.

I noticed early on that people on the support group who had RA generally didn’t have their perfect “cocktail” or drug mix that took away their symptoms. If they did, it seemed to be temporary. It was just a matter of time before their liver enzymes were up or the drugs stopped working. Tonight for instance, there was a post about methotrexate and prednisone not doing the job it was suppose to. The methotrexate dose was raised and yet she still wasn’t feeling better. Not only that, the raised dose of methotrexate had caused more hair loss and flu like symptoms. Inflammation was still a problem so an additional medicine was going to have to be introduced. She was frustrated and feeling confused how having a rheumatologist was helpful. The reality is, RA can be so severe that even the extreme fatigue, hair loss, flu like symptoms and yet dealing with some inflammation, flares and brain fog is still a better condition than not being able to walk or get a simple task done. It’s just sad to me, that the doctors and pharmaceutical companies only seem to offer drugs that will eventually harm you. If your autoimmune disease doesn’t do the trick in hurting your body, then perhaps the medications will. My opinion of this is conspiracy, I hate to say it, but I do think that in a world where sick people make pharmaceutical companies money, it would make sense that keeping them sick would be the answer. I don’t think it’s a coincidence that biologics and chemotherapy drugs used for RA give you less inflammation but in the end can lead to other autoimmune diseases or even Cancer.

I remember just before I stopped taking methotrexate and started taking LDN, I had done a little survey with the support group asking about daily symptoms, how many drugs they were on, and how long they had had RA. As well, had they ever experienced remission and what was the best they had felt? What I found was, the majority of people suffered from daily symptoms of RA, side effects from the drugs they take, and hadn’t experienced remission. Not only that,many people were still trying to get their symptoms under control, adding more medicines which meant more money out of their pocket and more side effects. The majority of them knew I was going to start taking LDN. Some cheered me on. Some people worried and asked me how I could choose this when it was DMARDS and Biologics that were suppose to stop the disease from causing deformation. I would explain that prednisone, which most people were taking was causing bone loss, and that until their disease was completely under control, they were probably experiencing bone deformation. As long as the disease is active and you have inflammation, regardless of what drug you’re on, joint erosion and deformation could still be in the process.

Even I have bone deterioration and that was under the supervision of a Rheumatologist and under the right drugs, including a DMARD. I have barely any swelling now, on alternative medications, and I know as long as I do have swelling I’m probably harming my joints. But knowing that prednisone which my doctor had me on for a year, harms my joints as well as other parts of my body makes me feel like the alternative route is the best way to go. How can I complain when I’ve had the least amount of swelling since the onset of RA. I wake up pain free every day. I would love to have complete flexibility in my wrists, which I don’t but I’m hoping in time it will still happen. You’ll have to keep up on my progress to find out. Either way, I’m still genuinely happy that I made this decision because I have no side effects with the supplements I take and LDN, except for good side effects like lower cholesterol and more energy . I can drink if I want to, and I almost never have a flare. If I do have a flare, I’m not even sure if it is a flare because the swelling and pain is so minimal. Possibly the best side effect that I never expected…..I have more hair than I have had in years. :)

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