New Meds?

My lupusy shite has been flaring a lot.  It comes at me in waves of nasty rashes and joint pain and fatigue.  Let me tell you, it ain’t fun. I never know what causes it.  Is it my fault for over doing it or is it X, Y, or Z?

I never know why it is happening  but in any case I always try to just make do with it.  The last thing I want to do is go on more medication.  In fact, my goal in the last year has been to get off of as much medication as possible.  However, the only medical intervention for these flares is prednisone, i.e.  cortisone, which is not my friend.  I have been taking minimal amounts of it trying to get over these flares but it isn’t working anymore.  I had to go in to the doctor for a big injection.  That was ugly.  I couldn’t sleep for a few days and I was a basket case of emotions… (more than usual!).

So I have been discussing with my rheumatologist what to do.  For a long time, with other rheumy’s I have had, I was told there were no further options to try.  Between my primary immune disease and autoimmune disease, it was too dangerous.  Or, I had doctors who simply did not believe there was really anything wrong with me and I was crazy: loved those docs:(

This doctor and his partner have  been wonderful.  They know their stuff.  So, a couple of months ago we tried a new medication in addition to the plaquenil I always take.  It was Immuran, which is sort of an entry level drug and most people do great with it: Not Me!  I had an immediate reaction.  I was very dissapointed.

I waited a while to talk to the doctor and was hoping that the whole thing would just go away.  Of course it didn’t so I finally called him and we met.  He said it was time to try Methotrexate.  That would have probably been just fine and I would have already started it but, Damn The Internet!

I read all of the interaction and reaction warnings on the drug and now I am scared to death.  Methotrexate is an entry level chemotherapy drug.  I am going to be open to infection and it may hurt my liver and cause my gut problems.  Those are two, no three, areas where I already have problems.  The dr. wants me to start taking folic acid daily while I am on the medication. I am guessing that will protect my liver.

But all the thoughts run through my  head: Is it worth it? Can’t I just remain like I am?  Surely being sore and tired and rashy a lot of the time are acceptable.  I mean, what if I have a serious reaction? What if this? What if that?

I don’t mean to diminish people’s fears but I have little patience for people that fear a reaction from a flu shot or even a Covid shot.  For goodness sakes’ people, it is proven effective! Basically those are as certain as they can be and side effects are minimal for 98% of people. Besides, when it comes to Covid, the results of getting the disease are far worse.  Good grief but I am grateful to be vaccinated finally.  (And no I am not a robot or a pedophile nor have I been chipped…. well, corn chipped maybe… they get me every time.)

Sorry, I got off track there.

It is the serious drugs that have started to scare me.  I used to be willing to pop anything in my mouth.  I was raised by people who saw modern medicine as a miracle and believed that there was a pill for everything.  I believed that too.

But, over the last ten years, well, I guess over the last seventeen, (since my CVID/ primary immune disease) was diagnosed, I have learned otherwise.  Medicines all have a cost.  They can produce a miracle and have in my life.  Without some of them I would be dead.  But, it is a very delicate balance and I really don’t think any one doctor or human of any kind can tell what the best balance is for me personally or for anyone else.

Our medical system is disjointed, as we all know.  We see a different doctor for each different ailment and they do not talk to one another.  There is no coordination.  In fact all the coordination falls to the sick person.  You have to keep your files together and your medications up to date and ask all of the right questions if you don’t want to get into trouble and get cross medicated.  I found that out the hard way.

So where does all of this leave me?

Yikes, I don’t know.  Kind of freaked out but needing to just take the plunge and see I guess. I have been very fortunate with my autoimmune side of things.  A lot has gone wrong but so far I still have my major systems functioning.  It could be a lot worse.

I guess I will go for it and see what happens.

I will let you know how this next new adventure goes.