New meds

I’m writing a short post today because it’s a med day. When I started this blog, the intention was to share my experience with this rare diseases. At the time, I didn’t have a clear cut diagnosis, and it is still unknown if the pars planitis is due to sarcoid or idiopathic. 

At the time I was just starting on methotrexate and I couldn’t find any “real world” info on it. Sure, I can read the dry monographs provided by the pharmacy, but no first hand accounts on what it is like to take this medication on a weekly basis.

It has been nearly six months since initiating the methotrexate.

It is working, but not as well as the docs would like. And my body doesn’t tolerate increasing the dosage. I remain at 10 mg, administered via injection every week.

The past few weeks or has been hitting hard.

But this week, after a round of appointments, I was put on leucovoran .  It is basically megadose of folic acid.  The methotrexate depletes the folic acid in the body, resulting in the side effects like leaded limbs, nausea and fatigue.  By replacing this substance, it is thought that the damage caused by the methotrexate can be minimized.

And day 1 after my weekly dosage of methotrexate, I can say it appears to be working.

My limbs don’t feel as heavy. It’s like the lead blanket has been replaced with a lead sheet. Although I’m experiencing more nausea, the over all fog effect is reduced. I can move around more freely.

If it wasn’t for the allergy attack that is killing my sinuses, I  would think that I could do more on this day 1 than I have been.

I still can’t leave the house on these days (unless it is going to another house where I can lay down), but I am more engaged with the household. I was able to make Sunshine’ s lunch today.

For those tiny improvements, I am grateful.