Starting Idebenone

My mid-day exhaustion is a serious problem. Not being able to do anything "all day" has more of an impact than you would think it would. I miss out on a lot of life by sleeping from 3PM to 6PM every day.

I talked to my new muscular neurologist about this and asked if there was some kind of "ATP Booster" that could potentially help lift my afternoon curse. (If you don't know what an ATP is, check out this short, link to Mitochondrial Disease. It's really fantastic). She suggested I try a supplement called Idebenone. Actually, she was the second person to tell me about it. The first was a brilliant man in my MD support group.

Today's my first day on it, replacing the COQ10 that I take every day... all day every day. I'll take 500mg once a day for two weeks, then two of those a day for a month to see how it goes. My hope is that I'm able to sustain my energy and make it through an entire day without a nap.
"...idebenone is thought to increase the energy production inside cells as well as protect the mitochondria (and the cell) from damage."
Now you might think "well, what's wrong with taking a nap every day? Who wouldn't love that?" I'm guessing that's what you might be thinking because once upon a time I would have thought that too. I love naps actually. But that's not what happens to me. 

What happens is my body slowly shuts down and I "crash" more than nap. My muscles get weaker, it takes more effort to talk, my short term (working) memory gets worse and it becomes difficult to focus my eyes. Once my head hits the pillow I'm out like someone chloroformed me in an Agatha Christie book. Out-out. See the difference? Not fun at all and totally mandatory for my body.

This has been happening since late October (about four months) and I'm frankly concerned about it getting worse. A one hour nap increased to two then to two and a half and now three hours is pretty common. What if one day I just can't leave the bed? These are the thoughts that scare me.

On the plus side Idebenone has had some positive results in research, so I'm hopeful. I typically respond well to new things at first, but then adjust over time and they stop working as well. But I'm strong, brave and hopeful.

Still Waiting for Help

I don't like not trusting people. I'd rather believe that everyone has the best of intentions and that people in the profession of helping others are really there to help me. But MAN doctors don't always make it easy!

I've been trying to get a hold of my neurologist for almost three weeks now. I want to increase my Lyrica dose and also let her know that I'm still having the scary muscle weakness. I've sent 4 messages to her now through our online medical chart and called. I even just asked to talk to the on-call neurologist this morning to try and get some help. But I haven't heard a peep back yet. 

At this point I'm just tired of waiting for help and am trying to go through my primary care doctor for the increased dose. My fingers are crossed that I'll hear back from him today.

I'm also still waiting on Shirley. I had really hoped I'd have her by today. Tomorrow is my husband's birthday and we're going out of town. I intentionally added a "rush" and paid extra for shipping to make sure I'd have her in time. Drat! Hopefully just going slow and using Meg will be enough to get me through the day. 

Thankfully I'm still only working 2 days a week. It has been exhausting, but I love it. I'm taking it as slow as I can and modifying my office to accomidate my needs. My office manager knows about my diagnosis and my needs and everyone has been very supportive. 

I've also been spoiling myself and letting my husband spoil me. The Cymbalta has really helped increase my energy, but now I risk doing too much. He's always reminding me to take it slow and guard my spoons. My doctor just increased my Cymbalta dose from 20mg to 30mg at my request. See neurologist! That's how it's done!

Hopefully the Lyrica will be resolved soon. In the meantime I'm still on 50mg 2x a day. My knee and feet x-rays didn't show any RA damage, so now it's onto the MRI portion of the evening (be sure to tip your waiters.) 

... And waiting on Shirley. I'll be sure to report back my thoughts on a transport chair as soon as I get her.

New Phase

Starting Monday I'll be entering a new phase of my life. "WORKING WOMAN!" I've been in school for the last 10 years preparing for my chosen career. Monday is my first day at my new job and also the first time in about 24 years that I'll be working full time. Thankfully they're starting me off part time at just two 10 hour days a week. But 10 hours is a very loooooong time. I love what I do and I'm sure the time will fly by. But I'm also very worried about my body being able to play "keep up" with my mind. 

Along with starting a new job I'm also still adjusting to my new medications. I'm currently taking 50mg of Lyrica twice a day. I'm on day four of Cymbalta and take 25mg at night before bed. My doctor added the Cymbalta after I talked to him about feeling so stressed out all the time. Now I have a good reason for feeling emotional right now, but I also welcome a bit of a break. I need to focus on my new job and adjust to life a bit without bursting into tears daily. He thinks the Cymbalta will help. AND it also happens to be good for nerve pain and RA pain, so that's a win-win in my book.

So far my biggest side effects have been feeling dizzy, feeling a bit foggy headed and not being very hungry. That last one is a bonus for me as I'm trying to lose weight anyway. The first two suck, especially for driving. Luckily for me my husband has been driving us since my pain and muscle weakness got so bad. But that's yet another thing to add to his already full plate.

I met with my new Rheumatologist two days ago. He's ordered more tests, but said he had some ideas. I'll go back in two weeks. More waiting, more testing... but I do feel like things are progressing and I'm getting more help. Also that the medications I'm currently on are really working to fight back both joint pain AND neuropathy. I'm so thankful to FINALLY be on something that helps!

August will bring with it a new phase in my life. That of working hard (and actually getting PAID!), hopefully some health answers and also treatment that helps. No more struggling to just help myself or "waiting." Waiting for my career to start, waiting for medication that works, waiting for a specialist to see me. Instead it's a time for "doing" and that excites me!

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.