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.

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.

Feelings About New RA Diagnosis

Today my rheumatologist called me at work to let me know that with the combination of my recent MRI on my right hand the bloodwork she’s confident in saying that I have rheumatoid arthritis and she wants me to start taking medication for it right away.

I’m going to be starting down the path of DMARDS (anti-rheumatic drugs) that “suppress the immune system.” If that sounds serious, it’s because it is. But from what I’ve read it’s much more serious to not take medical action. I’m picking up my prescription for Plaquenil (Hydroxychloroquine) tonight on my way home from work.

She also said she doesn’t think the RA is what’s causing the neuropathy and that’s likely something else entirely. She feels we caught the RA early. That’s hopeful.

After the call I stepped outside to visit some dandelions.

So now the plan is to keep the appointment with the neurologist then go back to the rheumatologist after seeing that person to check in on how the drugs are going and if the neurologist added anything or found anything new.

I’m feeling many many things.
A sense of irony that I got the call on Friday the 13^th. Relieved to finally have a diagnosis and some sense of hope with treatment. Feeling this is unfair that I have to go through something else after having Latent TB just a few short years ago. Happy to have someone trying to alleviate the pain of what I’m going through. Lucky that she got back to me and that I even have access to medical care in the first place. Angry that it feels like this trip isn’t over yet and there’s still more to find out. Grateful to have such a supportive partner who “gets me” and is there for me. Scared about the side effects with my new job. I’m feeling all of these things all at the same time.

Overall I just feel like FINALLY one piece of the puzzle plunked into place. I was hoping that would be the whole puzzle, but at least I have that one f*@&ing piece to cling to. Some of what’s going on is RA and it can be treated. Not cured, but treated. But I am scared that the treatment will be worse than the condition. Everything I’ve read tells me “no.” That “treatment isn’t optional.” But I’m not a trusting person by nature.

I still have so many questions. Will I get any side effects? How will this medication change me? Will my RA get worse even with the medication? (many people are on more than just 1 thing.) How many drugs will I end up needing to take? What if the rheumatologist is right and there’s something else going on along with the RA? What if that’s worse?

I "needed" a treat after all the stress of the day.
Yes, that is a sport sock on my cup.

Don't judge me. It works.

Want to know what my biggest fear is? My #1 biggest fear is that I've spent the last 10 years learning, working and training for a career that I won't be able to do. What if "brain fog" takes over and I can't work? What if I'm too exhausted to be able to work very much? So yes, I have fears about those things. But I also remind myself that I live in a time with wonderful assistive technology. I also have a very non-physical job. It doesn't require me to be physical at all actually. So as long as I can talk and think, I'm pretty golden. You can't say that about many careers. 

I'm also fiercely independent, tenacious, persistent and resilient. All the things you need to be to do battle with any form of chronic illness. What chance do fears have against Ninja skills like that?