So I have come to a place in my journey with Mixed Connective Tissue Disease where the Lupus part of it is no longer behaving with the entry level medication of Hydroxychloroquine. (You might be familiar with this drug from early on in the pandemic when Pres. Trump touted it as Covid prevention/cure.) There was a run on the drug and a lot of folks like me ran out of it. I was fortunate to have doctors who called in prescriptions well ahead of the crowd so I would have plenty.
In any case, I have been taking Hydroxychloriquine for almost 13 years and when I have a significant flare of the disease I break down and take prednisone in as small a dose as possible. Well, that plan is really not working anymore. My tests are really OK but I have started to have significant swelling in my hand. My dr. is calling this a break through of the disease. I guess that is what it is. And to be honest, fatigue and joint pain are my constant companions unless I get a mega shot of steroids.
So last Friday, with great trepidation, I took my first Benlysta shot. It is a weekly, self administered dose or a once a month infusion. (I don’t have any veins to infuse so that is not an option.) I shot myself in the leg and waited to see how bad the side effects would be. I read up on them, of course, and I have had a feeling of utter dread in my stomach leading up to trying this drug. Every time I start a new drug, a significant one like a Lupus medication that supresses my immune system further, I am scared. This particular medicine comes with really nasty side effects. Some of the top are: depression, insomnia and suicidal ideation. Sweet, huh?
So far I have an upset stomach, a headache and I feel gloom and doomy as well as tired and sore. The tired, sore and upset tummy could just be me.. it’s hard to tell. But the headache and the gloom and doom are not good.
The thing is, though, my hand quiit swelling. Damn it! I don’t want this. I feel worn out and run out of the ability to be flexible to try new things. I am beginning to wonder if I have reached the edge of what I can do with Western medicine of the traditional kind.
A couple of weeks ago when I was talking to the PA for my psychiatrist, she gave me a ton of links to alternate practioners and naturopathic doctors in Austin. She was very clear that there is one particular school that trains people adaquately in her opinion. Of course, none of these folks can take insurance so that makes it difficult. She did, however, mention one that is a D.O. or doctor of osteopathy. D. O.’s are recognized as the same qualifications as an M. D. but have a slightly different education. They are more focused on the whole person. Maybe I need to try that out.
I always want to proceed with caution here for a number of reasons but one of them is because about sixteen or seventeen years ago, I went to see a doctor who did not take insurance but who claimed to be able to cure me. He put me through a two day testing proceedure and sent me home with a number of injections to do on my own as well as drive back the 90 miles to see him. I had to pay all of this out of pocket. I ended up getting even more sick and having to find a cure for the guy’s cure and paying several thousands of dollars. That whole fiasco is reason #1.
Reason #2 is that I have been treated by other alternative practitioners since then that meant well and whose medicines work for many people but I am allergic to. It is strange and weird and, “no one has ever had that reaction,” is a phrase I have heard before. I am just very wary of everything now.
However, after getting down to this point I am beginning to think I should have another go.
Ah, Reason #3: I suspect anyone who is not taking insurance. I know there can be very good reasons and that American medical insurance is horribly flawed. However, there is a very thin and often indistinguishable line between greed and whatever constitutes ‘real science.’ I don’t feel like I am a good judge of those things so I tend to err on the side of the super educated folks.
So the first week on the new drug, Benlysta, has come with side effects. The worst one and one I cannot simply ‘deal with’ is insomnia. As you know if you read this blog, I am an insomniac. I don’t need help in that area. In fact, it looks like I will have to take more medicine to counteract this effect. I don’t like taking one medication to deal with another. I read that Benlysta side effects could ease for some people so I am trying to stick with it.
I guess I will just see where we go from here. I have been praying about it and trying to realize that the outcome is not up to me in any case. I just get frustrated at how little control I have over my health. Of course, this is a recurring theme for me.
So, I am on a new med that can make you crazy and I am crazy about whether or not I want to take this medication. That’s crazy. Right?