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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

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A brief recap – I saw Mr. Rheumatologist in June. Since then I have seen him three times. My blood (ever unwilling to be easy to deal with) returned to normal (excepting my ESR and CRP) after my first visit with Mr. Rheumy. Mr. Rheumy still believes that there is something amiss with my autoimmune system. He just isn’t sure what yet. There are so many possibilities and overlaps on the table still I won’t even bother to list them. Fortunately, he is a good doctor and a kind one. So he decided to treat the symptoms while we wait on the differential diagnosis.

Which brings me to the title of this blog Methotrexate versus Ampligen: A comparison (of sorts). I have been on MTX for about a month now. Mr. Rheumy started me off on a good-sized dose. (Well, that statement may or may not be true – I was using Dr. Google for comparison. I am on a 15mg starting dose.) He’ll be raising the dose at our next visit in August. And then likely raise it again in September. From there we may add in biologic etc.

Though Ampligen and MTX are in different classes and operate in different manners there are some similarities worth noting. Keep in mind that this is only my personal experience.

The first thing I noticed about MTX were the side effects. It was like Ampligen-Lite.

So far the top side effects are as follows:

Sore throat, fatigue, sleepiness, tender lymph nodes, chills, dry mouth, restlessness, dizziness,headaches, unusual or vivid dreams, occasional temporary hair loss, muscle weakness, muscle aches, confusion, joint pain, back pain, flu-like symptoms, malaise, upper respiratory infection / bronchitis, mouth sores, transient visual disturbances, ringing ears.

If this list seems familiar it is because I cut and pasted the Ampligen side effects from a prior blog post.

MTX knocks me for a loop for about 72 hours. I dose myself on Tuesday (another coincidence entangled with Ampligen) and by Friday I am finally feeling more like I did prior to dosing myself.

With only one month under my belt it is a little too early to say how I will do in the long run with MTX. However, the joint pain has lessened with every week and every dose that has passed. Whether that is due to the current joint pain flare ending on its own or the MTX remains to be seen.

I’ll keep you posted.

Sophie

Today I am one day shy of my six-month Ampligen free anniversary. So, how do I feel? Well, I feel okay. Some things are FAR, FAR better after the Ampligen than they have ever been before Ampligen. Some things are about the same. Nothing is worse than it was before the Ampligen. To be short in writing I’ll break it down by paragraph.

The Better:

These things improved while I was on Ampligen and have continued to remain better even after six months of being off.

Improved recovery time: I can still crash and burn easily, but I recover after two days rather than several weeks. The vast difference in recovery time is probably my favorite after Ampligen effect.

Improved sleep: I can count on a good, deep night’s sleep nearly every night. Most nights I get about 7 hours. I find that I am actually functioning better on the 7 hours I get now than the 10 – 12 hours (plus naps) I was getting before.

Improved Pain: I have less muscle pain when I do overdo it on activities than I did before taking Ampligen.

Improved Energy: While I am nowhere near my highest energy point when I was on Ampligen it is worth noting that before Ampligen I was mostly housebound. I spent the majority of the time in my home either lying down or resting on the couch. Now, six-months after Ampligen I go out about 3 – 5 times a week and get to one or sometimes two stops. Once a week I am able to get out and head off to the farm and enjoy some time with the horses. I have not been able to do that (prior to Ampligen) for about 3 years.

The Same:

I still wear out quickly and exercise is the fastest way for me to be reminded that I am not a well person.

I pay for any activity. I still get a sore throat along with fever, fatigue and muscle pain.

Onto the question I get asked the most – was it worth it to take Ampligen?

Let me put it this way. After 8 months on Ampligen and six months off I recover faster from activity. I am in (and enjoy being in) less pain on a consistent basis. I sleep every night. I leave my home consistently. It was absolutely worth it for me to take Ampligen.

Sophie

The prior post ‘Saying Goodbye to CFS’ provoked a myriad of reader responses. The majority of readers expressed positve wishes for me. However, some readers seemed to miss the point of the posting. I was not claiming to never have had CFS/ME I was mearly expressing the fact that it is likely that I do have an autoimmune disease in addition to CFS/ME. Further, I was trying to improve the quality of life for the people of the ME community by encouraging them to not attribute every symptom to ME. As an extreme example of why it is important to not attribute every symptom to ME can you guess what disease can have the following symptoms?

Nausea

Bloating

Stomach pain

Backache

Malaise

Enlarged lymphnodes

Give up?

Well, you could either have ME or possibly end-stage pancreatic cancer. The symptoms fit both.

I was not trying to say that had I known I also had an autoimmune disease years earlier that 100% of my life would have been different, but I am saying that perhaps it would have been a little easier.

One final note. A friend left this comment on the blog which I didn’t approve (sorry, M!) because I was waiting to write this entry and these sentiments were exactly what I needed to add in right about here, “I am not sure that the only explanation of your 21 years of sickness is the Autoimmune disease: my ex had just the autoimmune disease, but the CFS/ME symptoms were not there, although many others were. Most autoimmune disease among CFS/ME patients come with time… But well, I really hope that you recover well from everything, whatever it may be.”

My thoughts exactly. For all of us.

This is going to be a busy posting day. I have two more posts waiting to go up.

Sophie

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