Due to the abrupt onset of severe pain in my shoulders and wrists, i had a really bad night last night. It continued to irk me the whole of this morning, with it only reluctantly relenting in the afternoon. And i tell you, with the sudden onset last night, the pain was such a terrible killjoy. Any elevated/good mood that i had plunged rock bottom, and i was literally groaning in pain.
Last night’s flare serves to remind me why i should even bother to adhere to my medications. I refused to to take any pain medications last night. Neither did i take any of my sleep medications. I figured i was sleepy enough from the entirely sleepless night the night before, and i was hoping i could sleep it away.
Turns out, wrong move. I woke up feeling darn shitty and sorely regretting not doing anything about the pain. So i had my breakfast of my staple Coke Zero with all my meds which include 75mg of diclofenac, and decided to pop 10mg of prednisolone. I felt that i totally deserved it. And so i dragged myself out of the house, hoping that the pain maybe alleviated before i die of annoyance and frustration at the pain.
The pain didn’t really go away till noon time. It took at least a good 6 hours for the anti-inflammatory effects to kick in. I went to the pharmacy to get my sulfasalazine, and a refill of diclofenac, prednisolone and omeprazole. I was looking forward, so looking forward to getting my SSZ, and a new stash of prednisolone and diclofenac, because i was feeling terribly insecure with what i had. ‘Lo and behold, my prednisolone prescription expired since it was from some donkey years ago(i didn’t know prescriptions could expire; they should last forever what right?).
Sadded. And then just when i thought my SSZ wasn’t prescribed, i found out that it is already in the system. I expected my white bottles of SSZ. But when the pharmacist came with a brown bottle, i was like DAMNED!
I was totally BUMMED because that meant that i was starting from ONE GRAM per day. ONE FREAKING GRAM. DMARDs take 6-8 weeks to kick in. So it means that i’m gonna wait for donkey years for my SSZ to be titrated up to THREE GRAMS, which is the maximum dose, and also what it took to put me into near remission the last time i was on triple-DMARD therapy. And then it’s gonna take forever to reach the full therapeutic effect. (A good few months in all.) AND THEN THE TRANSAMINITIS WILL COME. Then good game, game over liao lor.
I know it is not for me to say how much i should be given. After all my rheumys know best. It was already quite a start requesting for SSZ, and subsequently being able to start on it. BUT DAMNED I AM FUCKING FRUSTRATED HERE.
I will just have a written diarrhoea here.
Go on MTX and pred. Start Enbrel. Stop Enbrel. Start HCQ. Stop pred. No remission. Start leflunomide. Transaminitis: ALT 299. Stop all meds. Transaminitis resolved. Major flare. Restart MTX and HCQ. Transaminitis: ALT 80+. All meds stopped again. Transaminitis resolved. Start MTX, HCQ and SSZ. Near remission. Transaminitis: ALT 528. All meds STOPPED again. Transaminitis resolved. MTX and HCQ restarted. No remission. Leflunomide restarted. Transaminitis(my bad): ALT up till about 2000. All meds stopped. Transaminitis resolving. HCQ restarted. Transaminitis resolved. MTX restarted. Daily diclofenac and Anarex started. Controlled but without a remission. Diclofenac stopped due to ‘suspected GI bleed’. More bad days than good. No GI bleed. Daily diclofenac restarted. Still nowhere near remission. Going back on SSZ, together with MTX and HCQ.
Now tell me…
HOW THE FREAKING HELL AM I GOING TO HOPE THAT TRANSAMINITIS WON’T OCCUR???
As much as i’d like to be optimistic, i seem to be caught in a terrible cycle. I can try to be optimistic, but the fact is that it is a trend for my liver to show signs of defiance. I want a remission. Or a near a remission if anything. But that means i have to take more drugs. And more drugs would mean a higher chance of transaminitis.
So, what now?
I’m just going to take all of the 3 DMARDs dutifully, as well as the daily diclofenac. I guess i have to adopt the wait-and-see attitude. Get my bloods taken at the end of the month and see my rheumy. Only 2 outcomes. Either my liver is fine and SSZ can be titrated upwards, bettering my chance at a remission. Or transaminitis occurs and everything has to be stopped. Then i’ll go into a merry cycle again, and then we’ll see how i die of frustration and annoyance.
Oh my bloody fucking gosh.
I HATE THIS. 😦