geekery, drawing and then some

Posts about RA

The ongoing search for proper medication

Campanula flowering.

Most people with RA know the process of finding the right medication for their situation. The disease behaves roughly the same in every person, however, the specific differences make it a lot harder to find proper medication. No one pill will fix everyones issues. Some medication works for about 75% of the cases, and then the other 25% has the option of using some other medication which, again, also only works for 75% or so.

Trying to treat RA means having to try different combinations of medication, and different medications on their own.

I’ve had a mild form of RA so far, yet mine seems pretty stubborn. It reacts well to MTX on its own, although it never goes away completely. Once I experienced some sort of remission; or at least, a complete absence of pain. This happened right after my surgery, while I had loads of opiates and other painkillers and antibiotics and what not in my body. It lasted for about two weeks after surgery, and I think that the summer itself helped. My RA acts up badly during wet weather (which, here, means all year except those few summer days. That year however, we had a heatwave, which caused entirely new problems).

Only once before I seemed to have started to get in under control. At that time I took part in a trial with a new form of Interleukin-1 blocker (a so-called ‘biologic’). As a side-effect of that blocker, my white-bloodcell-count dropped briefly, resulting in me not getting it for two weeks or so, and after that I could continue. It felt great, the pain almost completely went away in a matter of weeks — RA medications tend to take months to work properly, making the whole search harder.

And then I learned about my cancer-gene. And then they terminated my participation in the trial. The blocker had a slightly increased risk of cancer, and with the gene the doctors — understandably — did not want to take that risk. After all, they needed the most neutral information possible to get it on the market (that never happened, I learned a year later).

Last Thursday, when visiting my rheumy, he brought up biologics again because my symptoms didn’t go away. He wanted to discuss with the RA-team if I could and should get them, and which ones. He explained the higher risks of cancer (mostly lymphoma) and how they don’t really know how it all worked yet and how RA-specialists around the world argued about the risks. He said he would discuss it and then phone me the next day.

Of course I got excited, the MTX alone doesn’t seem to help enough (highest dosage doesn’t take away any pain, just the swelling) and on top of it all, it makes me damn nauseous.

He phoned me, as promised, and explained that the team does not want to take the risk (yet) with my history of having had cancer and that stupid gene. I will start an intensive physical therapy program soon (already planned before last Thursday) and they want to wait and see if that will make a difference (and if so, how much). He also prescribed me a lower dosage of MTX (almost half of my current dosage), a double dosage of folic-acid and anti-nausea medication. I think my RA will get worse these coming few months, despite the summer. I also think the physical therapy will help at least a little bit.

I will know more in October…

The medication rollercoaster


My new rheumy — so far, very pleased — agreed that nausea caused by Plaquenil doesn’t help me. I didn’t even have to explain it, he told me to stop taking them right away and to increase my MTX. This means I need to get new pre-pared syringes.

This makes the MTX basically the only ‘real’ medication I still take, apart from the occasional naproxen or paracetamol (Tylenol).

I do take a decent load of vitamins in a medicinal way, not taking them causes plenty of issues, and they May interact with each-other / other meds so I always count them as medication.

My last blood-test showed a deficiency of vitamin D, ferritine, low B12. Still waiting for the vitamin B1.

Currently I take:

MTX once per week, as injection, for the RA folic acid once per week, to counteract the side-effects of MTX vitamin B12 once per month injection due to inability to absorb vitamin D as cod liver oil, twice per day, also comes with vitamin A, and as tiny tablets, four per day, for ‘senior citizens’ which just have D in them multi-vitamins also for ‘senior citizens’ which has extra vitamin B1, iron and zinc, twice per day calcium twice per day, with extra vitamin K and D

Mixing and matching turns into another juggling game because too many of certain vitamins (A) and minerals (iron and zinc) poison my liver, and my liver has a hard time dealing with all the other poison already, so I don’t want to push that ;)

My body needs lots of fine-tuning. *[MTX]: Methothrexate