All of my life I have been unable to take full doses of any medication because I am so utterly sensitive to absolutely everything. For example: if I need some deep sleep 6.25 mg of Benadryl knocks me out for 9 hours. (For those of you keeping track that is 1/4 of a pill for 9 hours of uninterrupted sleep.) Ampligen and I could only coexist at 50 mg. I believe I have mentioned before how I have all of my doctors trained – they know to look up toddler-sized doses and they pick pills that are choppable. Until now. Apparently my rheumatologist has found one unyielding component of me that requires maximum doses in a triple combination. My immune system. Who knew? I certainly didn’t. I always thought I was sickly. And I am, but in a different manner than I thought. Even though I catch colds and flus, (and everything else I come into contact with) and though I have fevers and a sore throat daily my immune system is not weak. Just misguided. It is guiding the best and the biggest immune missiles it can at me. Why worry about a cold when there are so many other problems? Perhaps my immune system has some repressed component of self-loathing. To make a long story short if the strength of The Avengers team could be combined, quantified and then transferred into an immune system – that immune system would be mine.
While there has been a few cases that I have read about where ME/CFS has been vastly helped by Methotrexate I have not found this to be the case with me. So far I have seen good improvement in pain reduction, inflammation reduction and in energy boost, but since my current baseline is somewhere between “shoot me now” and “don’t waste a bullet I’ll be dead by morning” a good improvement has only moved me to the category of struggling which – to quote one of my favorite films – is “like trying only without succeeding.” I usually have a pain reduction / energy boost which lasts about 3 days after the MTX injection.
To try to move me further along the path to health Mr. Rheumy has now added in 20 mg of Arava daily. Arava (as I have recently learned through Dr. Google) is an immunomodulatory drug with anti-inflammatory properties. If this triple combination of Plaquenil, Methotrexate and Arava fails to slow down the war within me – then biologics will be the next step. Until then – immune system Avengers Assemble! Or, rather – disperse! And bring me some Shawarma!
Sophie
theglassmountain 
3 comments
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August 31, 2012 at 2:02 pm
Marcie Butler Myers
Hi! My name is Marcie Myers and I’ve had CFS since ’94 and had to quit working in ’99 and my ex forced me out of our house in 2000. In late 2000 I was awakened at 3am with massive pain in both my arms, especially the left one. No warning and no reason. But it honestly felt like a truck had run over my arms so I certainly get the bullet part. I was diagnosed with FM and then for the next 10 years took Methadone 20mg three times a day which was the only narcotic that touched the pain. It was always worse with low pressure fronts that became stationary. Jump forward. By accident I was dx’d with 2 displaced cervical discs and had sx in Jan. The pain continued. Then on August 3 I had a second surgery where they opened up the interior rims of my C4-C6 vertebrae (stenosis) and though I have a huge scar down the back of my neck, I’m FINALLY no longer having the arm pain. My bullet has been put away. I’d seen umpteen md’s and not one ever thought to send me for an MRI or Xray. Just curious where your pain is and if it could be related in any way. Can’t believe I lived that long with that kind of pain. So now I just have CFS to deal with. I have a fantasy that it may improve consequent to the surgery but it’s just that….. a fantasy. With love, marcie
Date: Fri, 31 Aug 2012 18:18:59 +0000 To: slosouljourn@live.com
August 31, 2012 at 2:11 pm
sophiechurch
Marcie- I am sorry that you had to suffer so long with such pain. I am glad to hear something finally relieved it. I am currently being treated for Rheumatoid Arthritis / UCTD. So my pain affects most joints in my body. I have had several MRIs and a couple of CTs, but thank you for the suggestions. I hope you can find something to help your fatigue!
Sophie
December 28, 2013 at 5:23 am
Dead Men Don't Snore
I too have similar issues with medications although in my case the biggest issue is side effects which I get from any new drug even at doses too small to class as a clinical dose. I usually find that to reach a dose that makes any difference the side effects are so bad they outweigh any benefits. I glad the new medication is bringing you at least some relief even if it barely scratches the surface.