Methotrexate

[kushami]

I have a small update.

After a bit of a struggle, I managed to restart HCQ (Plaquenil) and work up to my prescribed dose. I am still far away from the six months of taking it continuously that is needed to judge the effects (according to my rheumatologist).

I also read recently that in Sjogen’s syndrome six months is not considered long enough to judge whether it is working and that twelve months would be a better guide. I don’t have SS, but I will pinch that timeline.

Methotrexate is in my house, but I decided that it was too scary for now and locked it away in the medicine cabinet.

I am trying sulfasalazine instead. It is frequently combined with HCQ and is less scary than MTX, although it still requires monitoring with blood tests.

Apparently it turns your pee orange, so that will be festive

 

[kushami]

Well, the sulfasalazine and HCQ are used up, and I didn't notice any improvements apart from the HCQ getting rid of wrist pain, which it did way back when I first tried it.

The wrist pain was not bothersome; it only happened when I did weight-bearing activity, such as push-ups. However it is interesting because as I understand it HCQ has not been shown to improve regular age-related arthritis. And that wrist pain started when I was a bit young for osteoarthritis. So the fact that it went away so quickly shows something autoimmune/inflammatory is happening in my body.

It hasn't come back but I can't do push-ups now because of my "giant muscles out of nowhere" disease (suspected myotonia congenita).

On to methotrexate (MTX).

The dose for autoimmune conditions ranges from 5 to 20 mg. I have started with 2.5 mg and survived! (It is notorious for causing GI upset.) I actually suffered more with the folic acid you need to take with it.

I only have a small packet of tablets and it can take up to three months to take effect, so I'm not sure how this will go. I had a couple of parcels confiscated with warning letters from Customs, so I won't be ordering illicit items from overseas again for a while.

Will report back.

 

[kushami]

There are conflicting studies on the interaction between MTX and caffeine. To be on the safe side, I will avoid caffeine on the days before and after my once-weekly dose.

 

[kushami]

Lupus Encyclopedia article on minimising side effects while taking MTX:

https://www.lupusencyclopedia.com/methotrexate-for-lupus-prevent-side-effects/

 

[kushami]

Hmm, Something is Happening.

I can't type at length because of a finger injury, but either MTX is working unexpectedly quickly or LDN is finally working. Or perhaps they are doing something together.

I had MTX on Tuesday morning, and since Thursday morning I have been feeling better than usual when I wake up, and it lasts until lunchtime. Not normal (as in no fatigue, OCHOS symptoms), but definite improvement. Maybe 25% better than average.

I am still suffering from a bad afternoon/early evening slump, which I think is due to the brush with adrenal insufficiency I had in January. So maybe once that goes I will be feeling better all day – who knows?

Cannot do much with myself because I have to rest my hand. Even though it is my non-dominant hand, it still puts a spanner in the works. Have to wear splint for 8 weeks minimum.

It's lunchtime, have made and eaten salad roll, now starting to fade. Will report in full when hand allows it.

 

[kushami]

Mystery solved: it was the LDN making me feel better in the morning. Unfortunately, the weird dreams that caused me to drop it last time showed up again. I will reduce the dose or maybe give up on it. Can’t handle weird dreams.

Dose two of methotrexate today. 5mg. Minimum effective dose. Will see how it goes and may increase it after a few weeks.

 

[kushami]

Can suddenly tolerate folic acid, even though the first time I took it I got a horrible stomach ache. Maybe that was a coincidence. Anyway, that's one less thing to worry about.