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...


mail facebook google identi.ca stumble tumblr twitter print

My RA started acting up with the rain, so I decided to take naproxen twice daily until it calmed down (which seems like the best solution so far, even though it gives me tummy-aches). Usually I stick to one naproxen, but it got so bad this time that I decided to suck it up and take two.

And I've had so many weird dreams since I started them. I still blame the plaquenil, as that caused weird dreams when I started it, however, the naproxen seems to have a part in it too. I have no doubt the medication causes these dreams, as an interesting side-effect. Sure beats the cramps and nausea...

A few nights ago I dreamt I witnessed the disappearance of my father (that in itself doesn't really fit) on an ice island near the North Pole where I tried to fight of pink slimy monsters that came to invade my house from the other side of the island, by following the barb-wire on the edge of the island (near the icy cold water) that we used as phone lines.
Last night I dreamt I got caught up in a robbery and had to follow the bad guys with as many cold coins in my pockets as I could carry and then getting locked up in a boat.

I've had weird dreams all my life, but these recent ones really top the rest. Extremely vivid, and even though it would normally turn into a nightmare, I remain calm in the dream (and afterwards) and basically go with the flow. I just wake up with this huge WTF-feeling.

Maybe I'll start writing them down, they're pretty cool really :-)


mail facebook google identi.ca stumble tumblr twitter print
  • search

  • archives

  • categories

  • Receive posts per e-mail: