DMARD Effects - 1 month in

I've been on Plaquenil for a month now. I started on 200mg 1x a day and went up to 400mg (2-200mg pills 2x a day) after a week. I've had a lot of side effects come and go. It feels like the longer I'm on it the more it's helping. My doctor confirmed that it takes a long time to be effective and it has to build up in your body.

The very first night I took it I think I got up to pee about 20 times. I thought "Uh oh. What have I done!?" But that was the one and only time that happened.

The first week I was on it I was completely exhausted. I didn't want to move or do anything. Again I thought I was really in for it. But this too went away. Also in that first week I had a few instances of darker urine which worried me. Again, this went away. Each time I had a "Let your rheumatologist know" side effect I let her know. She didn't seem worried at all and told me to keep on with the DMARD.

I doodled this after my first rheumatologist appointment. 

Here's some of the side effects and helpful effects of Plaquenil that I've experienced:

Side effects from 400mg

• easy bruising and cuts that take a long time to heal
• tickle feeling in back of throat
• occasional constipation
• sun sensitivity (eyes hurt in bright light)
• images staying on retina for longer than usual (after burn)
• eyes tire easily (especially with computer work)
• joints in “bad hand” and feet hurt a bit more (so far)

Things that are going away the longer I'm on it

• “foggy” head feeling
• face breakout
• chest pain/asthma worse (could have been seasonal allergies though)
• increased body itching
• exhaustion/fatigue/feeling tired all the time
• muscle weakness/fast muscle fatigue/night calf cramps
• short term memory a bit worse

Benefits:

+reduced all over joint pain the mornings

+reduced back pain (especially lower back)

+ night time dry mouth isn’t as severe

+ reduced dizziness

+ reduced right ear pain/pressure (ETD)

+ getting up to pee much less at night (and pain not waking me up at night)

+ peripheral neuropathy (PN) improved

Still have:

ü  Stocking glove neuropathy & bottom of feet (but is improving)

ü  Weakness in both hands, right hand is still a bit worse

ü  Hand pain after any strength activity (like cooking)

ü  Chronic pain in right hand joints

ü  Pain in right foot joints (ankle specifically)

ü  Minor hand tremors w/ weight & activity (no better or worse with Rx.)

ü  Temperature sensitivity in hands (cold feels like it’s burning me, especially right hand)

The joint pain being gone in the morning is wonderful. It feels like the times I was on Prednisone. Like a whole new woman. ETD = Eustachian Tube Dysfunction. I've struggled with that since being treated for Latent TB 3 years ago. Ditto with the dizziness. It feels fantastic to be free of both of those. The ETD was so bad that if I went even 45 minutes by car in any direction I'd have to take a decongestant to try and keep my ears open. Otherwise I'd end up with pain and swelling that would last for months (or till I took a ride on the Prednisone coaster.)

My PN only recently started to improve. That's also been a real game changer for me. Although now its moved into my feet, which is odd.

I'm seeing an eye specialist at the end of this month for a retina check, but I read that problems don't typically creep up till you've been on it for years and years and at a high dose. In the meantime, I don't leave home without sunglasses and I take frequent computer breaks.

I can tell this is the kind of medication where things will ebb and flow. I'll keep track and share what I've noticed in the hopes that it will be useful/helpful to others.