Love/Hate Plaquenil

It has only been 2 days since I went down from 400mg of Plaquenil to 200. I was taking it twice a day, now I just take one a night. I stopped taking it because of the increasing muscle weakness in my arms and legs. It was making every day things like showering, dressing, walking a real challenge. I wanted to be sure that it was the Plaquenil that was causing this progression before my neurology appointment next month. 

But...

After just 2 days of a reduced dose I've noticed a huge difference:
- The eustachian tube dysfunction (ETD) I've struggled with in my right ear for years now was back this morning. Feeling full, a little blocked and making me dizzy.

- I couldn't sleep because 1) I felt wired/awake 2) the serious pain in my back (especially my lower back.)

- The neuropathy in my hands increased, especially last night.

- My joints ache continually again (not just from "gelling" when I get up.)

- Did I mention the dizziness? That sucks.

- I'm much more tired today. Could be from not sleeping well though.

My rheumatologist still hasn't gotten back to me, so this morning I messaged my doctor. I was very frank and asked if I should go back to 400mg, try another drug or see another rheumatologist. I may try and call her today as well seeing as I feel horrid.

This just adds to that looming feeling of isolation and like I'm in this with very minimal medical oversight. I keep reading how "early treatment and intervention is KEY" and then the medical "experts" really aren't working with me. It's very frustrating. Every minute I'm second guessing myself and feeling like I should just go back up to 400. But the muscle fatigue really was a big problem and I DO want to know if it was being caused by the Plaquenil. 

I went to the store this morning, which was great. Then I stared at the bags in my car and just wanted to cry at the thought of brining them inside PLUS putting all the food away. I sucked it up and did it, but it was hard. 

I HATE that things like grocery shopping are now hard. I feel angry, sad, frustrated, pissed at my doctors and hostile to my traitorous body. I'll feel more hopeful tomorrow. But today is for sulking under a blanket.

Muscle Weakness on Plaquenil

The muscle weakness I've been having since the beginning of May seems to be getting much worse. It's in my arms and legs. It has gotten to the point where my muscles are sore and tired from the most basic things like getting dressed and washing my hair.

I messaged my rheumatologist today saying that I want to stop the Plaquenil (400mg) so I can maybe see if that's the cause, or if it's something neurological instead. I have a month till my neurologist appointment. In my mind I'll stop the Plaquenil and quickly tell that it was the cause. But if I stop and it's still there when I see the neurologist, I can then talk about possible other causes. That's a scary thought.

I never thought of myself as a "scared" or "fearful" person till all of this. It's not death that scares me. Death has never scared me. It's the feeling of "how bad is it going to get?" Fear of the unknown. Every day, every week, every month seems to bring so many changes that I'm constantly playing catch up. If even I don't know what's going on, how can anyone else? How can my doctors help or my partner continue to give me endless support? I think that's where the heart of the fear is. Loneliness and isolation.

Some thoughts from my journal last week.

But before I get too gloomy, I have to share that with the help of my husband I was able to get out and do some gardening this weekend. HORRAY!

What got planted!

I was a little late this year, but I'm hoping these little seeds will do their magic and we'll have some delicious veg from the garden by late summer. I was so excited to get out and get it done. 

I'm hoping to hear back from my rheumatologist soon. For now it's more of the "hurry up and wait" that has become my "new normal."