Thursday, August 26, 2021
Friday, August 20, 2021
Tuesday, August 10, 2021
I WAS taking Leflunomide 10mg for my RA. The Nurse Practitioner I last met with at my autoimmune doctor's office said to start upping the dosage little by little for a few weeks until it gets to 20mg by cutting my pills in half and take 1 and 1/2 pills every day for a week then start taking 2 - 10mg pills. Really? Now, mind you, that the 10mg dose is the lowest that I found. When I was on the low dose I felt alright at first but then I started feeling light-headed, sluggish or slightly fatigued would be the fitting description. I felt that maybe it was Lupus creeping in on me. I was a bit bothered but I went with the NP because after all, she was working in accordance with my doctor so I didn't question anything. All the while my inner voice was screaming so fucking loud that SOMETHING IS VERY WRONG HERE! LISTEN TO ME, BITCH!
So I upped the drug to 20mg by the week 2. It didn't take long for the tired feeling, trouble breathing, loss of appetite, drastic loss of weight (14-lbs in one week), intense pain in the midsection of my back (kidney pain) and right upper front quadrant (liver pain) of my gut, constant headaches, and manic insomnia, loss of coordination, and weakness in my legs and arms was driving me to think I was dying. I quickly stopped the drug and called my doctor's office and told the NP that I had stopped the drug and told her about the symptoms. She didn't sound alarmed and said wait a few days then go back to the 10mg. But I had a better plan. Just dispose of the drug by taking the pills back to the pharmacy and have them dispose of that poison properly, which my husband did for me. I let David know that I was in a bad way. I read up on the side effects, which weren't good, and I also found that in 2002 there was a petition to have the drug recalled because it had caused 130 cases of severe liver toxicity in which there were 56 hospital admissions and 12 deaths. The drug I took fucked my system up so bad that I thought it would take only a few days to get my health back. BWAAAAHAHAAAHAHAAHAHAHAAAAHAHAHAHAAAAAAAA!!
Now let's refrain from that and let me tell you what happened to me in a span of 4 painful tiring weeks not days of rehabing my health. Yes, it really did fuck me up. My pee was so brown I thought I had killed my kidneys and was peeing a bit of blood. But it finally cleared after the 2nd week of drinking lots and lots and LOTS of water. I was still not eating. It was rare if I ate a piece of toast with a thin smear of peanut butter and a cup of warm green tea without throwing it all up. I couldn't stand or walk without help, I couldn't even use a walker because I had severe weakness in my arms and legs. It hurt to move, I had difficulty breathing and my heart felt like it was beating so hard it wanted to tear out of my chest. It made me think of the movie Alien. David/sexy beast/husband was on the verge of calling EMS and our family doctor about what was happening to me. I told him to let it go I was going to fight this on my terms, not a doctor's.
In the meantime, David would schlep my laptop with the recharge cord every morning to the bedroom for me so I could post on my blog twice a week and also answer emails and talk to my dear friend, Susan, in California. She kept me busy by emailing me interesting podcasts, funny pictures and videos, news postings, and talking to me about what she was up to. Really, she helped keep me busy. Thanks, sweetie.
I spent 98% of my time in bed either sleeping or reading but mostly trying to do exercises to move my arms and legs. My Goddess, it was hard to move because it hurt so bad. Sometimes I had to rest in between leg or arm lifts because I was so tired. Standing even for 2 minutes was a killer on my body. Doing so made me nearly collapse and pass out from the fatigue of a small act of standing. Really, I had no energy, none whatsoever. It took me nearly 2 weeks before I could walk on my own and stand for as little as 5 minutes in the shower. By 3 weeks I was back to cooking small meals for David but I had to take frequent rest periods. Sometimes I would make him do some of the steps of cooking a meal by writing down how to make something like Sheperd's Pie. I forced myself to clean when I had the energy, and eating tiny meals like my own chicken noodle soup that was in the freezer. I was pushing the envelope there because forcing myself to eat something was a chore. My stomach just refused to keep any food down. I was losing too much weight. Another 12-lbs by the end of the second week. 13-lbs on the Saturday of of week 3. But I had to get well. I had to push back harder and I had to eat something to get my energy back.
Finally, in my 4th week, I was able to walk outside for a bit and standing unaided for 20 minutes at a time. I'm back at cooking and cleaning and laundry. To prove I was back to normal, I made a cheesecake for David. I was making dinner again every night last week and everything is back to semi-normal. I lost a total of 49-lbs in four weeks and I've leveled off. I haven't lost any weight so far and my appitite is almost 100%. It was a hard battle and I'm not going through that again. I feel so much better. So much so, I canceled my next appointment with my autoimmune doctor. I don't intend on seeing him again. Especially if I have to take drugs that would quite possibly kill me. I'll deal with my RA myself and Lupus can go fuck itself. I'll deal with everything my way. This fiasco might have caused liver and kidney damage that could manifest later in my life. Sort of silent ticking bomb. I don't know if it will happen. I'm hoping not.