Rituxan: Epic FAIL

The Rituxan was unsuccessful. After they FINALLY got started, I ran for about an hour and a half when my throat started tickling. No problem, I read that can happen and not mean anything. They my eyes started itching. So I told the nurse. As she was contacting a doc there, I started having difficulty breathing. Allergic reaction. Big time. So they stopped the drug, gave me a bunch of stuff and I was ok.

They called my neurologist. I wanted them to try again but they wouldn't; my neuro agreed. He said he wants me to do pheresis for now while he figures out what to do. I am e-mailing him next. I wanted to go right to pheresis then, since we were already down there, he said no, I'd had enough trauma for the day.

I am upset.

I am angry.

I am frustrated.

I am stunned.

I was so sure this was IT.

I'm going to see if Dr. Teener will admit me to the hospital, give me a buttload of preventative drugs and try again.

Back to square one. I can't believe it.

Exciting Update!!

I got a call from Ann Arbor today....I start my Rituxan treatment NEXT Wednesday the 23rd!! I'm a bundle of scared and happy and nervous and excited and relieved and energized. At first I kind of flipped out, then I was excited. Just a lot of emotions ping-ponging through my brain.

The GOOD news is that it is covered by insurance. The BAD news is that it's at the Canton Infusion Center, not the Cancer Infusion Center at the U of M campus (their waiting list was months long). The WORST news is that each infusion (every Wednesday for 4 weeks starting the 23rd) starts at 8 AM. Yes, that's IN THE MORNING.

So instead of getting up at 3:30 in the morning to drive there, we will be heading down overnight Tuesday each time. We have an HSA account to help with finances (of course if there's no money in there it won't do us much good!), but 4 trips to Canton (300 miles round trip, so 1200 miles worth of gas) plus 4 nights at a hotel, meals...BUT....this is it. I know it is. I am CONFIDENT that this treatment will help me, and put me in remission. I have studied several cases of people with MuSK+ MG like me, Class IVb like me, refractory MG like me, and all of them improved, and half went into complete remission. SO. Take THAT MG MONSTER.

I do, as usual, ask for your prayers. My niece is coming to stay with Jacob the first time, and we have other arrangements made for Jacob for the other 3 times. We just ask that you pray that everyone involved stays HEALTHY first and foremost. We ask for prayers to BLESS the people who are helping us. We ask for prayers for enough money to cover our expenses. We KNOW that God will provide everything we need...above and beyond our expectation.

I'm sure I will be posting more about it as the week goes on....because it will be foremost on my mind! Thank you all for supporting me and my family through your thoughts, prayers and actions. We love you dearly!!!

Drumroll Please......

I FEEL GOOD!!!

Two days in a row now....I don't feel like I could just crawl in bed and stay there for a month. It looks like this pheresis worked! I am so FLIPPIN' happy I could bawl. (I could bawl pretty much anytime, but, ya know...)

I even got dressed. Now THAT says something! Normally it's PJ day unless someone is coming over. Not today! Bra and everything. Go me!!!

So I got a call from Ann Arbor, and things are IN THE WORKS for the Rituxan treatments. I need to get some bloodwork done, and except for waiting for a spot to open up (cancer patients get priority which I totally get), we will be good. to. go. Woot Woot!

When I'm better, ya know the first thing I'm gonna do? I'm gonna DANCE. I'm gonna shake some bootay. I may only be able to dance for 5 minutes, but for that 5 minutes, I'm gonna BOOGIE!

I also got my printed blog-book in the mail, and I freakin' LOVE IT! No, it's not perfect, because there are typos here and there on different blog posts, but whatever! It's me in print, and I LOVE it.

So. That's about it for me right now...I'll keep ya posted!

Tomorrow Is A Big Day

Tomorrow we head to Ann Arbor for the first time in 2 months. Haven't been able to say that in a long time! We're going to talk to Dr. Teener first (I have a ton of questions, well 20 to be exact) about the Rituxan treatment....I spent most of the day yesterday studying stuff about it...

I now know way more about cellular immunology than I ever thought I would...but it makes sense in an odd way.

Plasmapheresis takes antibodies out of my blood by removing the plasma and putting synthetic plasma from "normal" people, so the symptoms are alleviated. But as soon as the treatment is done, my body continues to produce antibodies.

Rituxan works on a cellular level, destroying B-cells (we have T-cells and B-cells in our immune system) therefore the possibility of medical remission is a very real one. If the B-cells are the ones that are out of control, and the Rituxan wipes them out, no more MG. Theoretically anyway.

I think the best thing I found out about this treatment is that is seems to work best on MY kind of MG. YAY! AND the incidence of PML is really, really low. In fact, I couldn't find any documented cases of PML in someone with MG who was treated with Rituximab (Rituxan).

What I am asking for specific prayer against other than the PML (Progressive multifocal leukoencephalopathy) is that Rituxan can make some crazy things happen because it works at the cellular level. One concern is the varicella zoster virus (chicken pox and shingles). Rituxan can like "reawaken" or whatever dead viruses in your body...so I could get shingles. But I won't. I'm just saying. Ya'll can pray against that.

I've also been exposed to TB (in 1999); I never GOT TB, and was treated for it anyway. But I do have a scar bubble in my lung that is encapsulating a TB germ....But again, TB seems to be one of the things Rituxan WON'T reawaken.

Anywho. I will keep you posted. Probably won't post tomorrow as I am having plasmapheresis as well. Going to see if that gives me any kind of pick-me-up. Thanks for your prayers!!

MuSK+ MG

Well I learned a new word in conjunction with my MG today, and it could NOT be more fitting. I'm looking up Rituximab, which seems to be the logical next step for me in my MG treatment. It says that Rituximab (Rituxin) is used on refractory MG. So you should know by now, I'm looking up refractory in my Synonym Finder (the second best book every written, after the Bible)!

Here are my favorites: stubborn, uncontrollable, obstinate, bullheaded, willful, and headstrong.

Now, those of you who have known me for a while are probably peeing in your pants. If anyone in the world would have stubborn MG, it would be me. The irony is NOT lost.

Therefore, I have decided to apply my obstinance to finding the best treatment for me. I've read of 2 cases so far where MuSK+ MG has gone into complete remission using Rituximab. I'm also asking anyone I know who either has MuSK+ MG, or knows someone who might, what their treatments are, what works for them, what doesn't, etc.

Many that I've read about had been doing pheresis. However, whereas I was going every 3 weeks, these folks were going three TIMES a week. I cannot imagine that. Of course they would have ports, or fistulas, or some kind of veinous catheter, not use use their own veins every time like I had been.

It's quite irritating that so many articles are blocked unless you're a doctor, or belong to some medical association. Patients want information too for crying out loud!

So I will put my plea here as well: If you, or anyone you know, has MuSK+ MG, please leave a comment here, or contact me through my blog and I will get back to you. I would love to know what's working for you, if any of you have tried Rituximab (Rituxan), and if it worked. Thanks!

Update

So there’s good news, bad news, some questions answered and more that arose on our lovely jaunt to the U of M these last 2 days. Right before we left, however, I was getting ready to get in the shower, and one minute I was taking off my underwear and the next minute I’m on the floor, mostly on my right knee, but basically all fours. Happened so fast I don’t even know how it happened. I hurt it pretty bad, but I could move it, so I called Doug (I had my phone with me) to tell him what happened and he said he was on the way ASAP.

How I ever got up, I don’t know. It was adrenalin I suppose. I didn’t dilly dally down there I’ll tell ya that much. As I got up though, I could visibly see my knee growing. Right on the knee cap. Fluid. Bluish. Lovely.

I gimp over to the freezer to get out Old Faithful Icepack (bag of frozen lima beans) and immediately get ice on it. Then I call my mom, and lost my mind right there on the phone. My poor mom. She’s in Florida for crying out loud. It’s not like she could run over and kiss my boo boo better. But I’m telling you, sometimes MOM’S are the only ones who will do. So she kept me somewhat sane until Doug got home.

So I am lovely shades of purple. Thankfully, I think I actually ricocheted off the toilet just above my knee, because I have a huge knot there…I know. I don’t think I’ve even fallen when Doug wasn’t here. It was scary!!

Anyway. So the drive to Ann Arbor was uneventful. Thank you for praying!!! Jacob slept the whole way, we got to our hotel, he woke up happy as a clam, and after we got settled we went out for supper and to Target, even though I couldn’t walk very well.

Friday morning pulmonology tests actually go okay. They also did another arterial blood gas. The kid that did it (and I stress KID) really did a great job! I didn’t hurt much at all. It’s uncomfortable of course…but usually it’s downright PAINFUL. There were 3 people in the lab room I was in, and 2 were older ladies (45-50) and then David, all of probably 22! The lady in charge, Karen, asked David to do the ABG. I was like, okay I know this is a teaching hospital but if you could only understand what I have been through in the last few weeks….

So I walk over and I say, “David, you’re REALLY good at this, right?” He kind of smiled and said, “Yup. I am.” So I was like okay!

And he was. Lovely young man.

Karen rigged up a special thingamajiggy that was able to get the breathing tests they wanted. The results were about what I expected. I’m able to utilize about 50% of my lung capacity right now.

On to the ABG. The GREAT news is that my CO2 was NOT bad! That’s hugely good news. It’s also kind of bad though, because if it was ONLY MG involved, I would be trapping CO2 also. The BAD news, leading to the rest of our discussion, is that the O2 they measured in my arterial blood was only 63%. Low normal is 90%. So.

The only way to improve the closure of the lungs at the bottom is through mechanical ventilation. So it’s either during the day on this cough machine, or a vent at night. Dr. Teener is working with my pulmonologist at Borgess to try to get this machine. What we DID find out is that it’s basically like a Bi-PAP, which I happen to have up in my closet. McGuyver Doug will just have to rig something up for my trach so I can use it. I know he can. He’s amazing.

MORE good news is that I get to take a break from pheresis!! Whoo-hoo!!! It seems not to be making that much of a difference, especially after having 4 in two weeks. So I am VERY excited about that.

We are also trying a new medication on top of the CellCept for now. Cyclosporine. Once I’m on the full dose we will see 1. If my kidneys can handle it, and 2. If I can go down on the CellCept.

He also gave me Mestinon to use as an acute symptom-treater. For example, if I’m having a really bad time with my speech at a certain time, take one and see if it helps. So. Between new medication and SOME kind of mechanical ventilation, I think we are on the right track to figuring this out and getting me some energy back.

The Rituxan is still very much an option if the cyclosporine and breathing machines don't improve the MG.

Oh yah, the one bad thing is that I might have interstitial lung disease from all the crap I’ve been breathing in unfiltered for 10 years, and there’s no treatment for that, so we’re just not paying that much mind right now.

Thank you thank you thank you for your prayers and encouragement. I could FEEL people praying, and would love your continued prayer support.

Quick update

One of the WORST things about this disease is waiting on doctors to get their poop in a group. ESPECIALLY non-specialist docs. 'Nuff said.

So as of today I am waiting on:

1. A referral by someone (with an M.D) to the home health care agency so I can get the use of a Medical Social Worker.

2. The "go" that my insurance will cover the Rituxan, and then the schedule for it.

3. The information about when/if I'm getting a cough assist machine to help me expand my lung volume.

I think that's it. Friday we go to Ann Arbor for plasmapheresis hopefully for the last time in 3 weeks. And hopefully I'll have the go-ahead on the Rituxan by then.

Thank you to all of my dear friends who pray for me and support me. This blog has meant SO much to me! Speaking of support, I'm gonna need it tomorrow...I'll be the big 4-o! UG!!

Quick Update

I'm so seriously wiped out.

My treatment went really well yesterday, thank God, and Jacob was WONDERFUL.

I'm going to be working with my neurologist and pulmonologist about getting something called a cough assist machine to use several times during the day to try to help get rid of the atalactysis (sp?) (smooshed lungs at the bottom).

Also waiting on insurance approval for the Rituxan. There's probably more, but I'm so exhausted I can't think straight.....more tomorrow maybe.

Quick Update

Emotions have been running high. This last week has been a time of deep reflection for me and some decision making for our family.

We are looking into much more aggressive treatment for the MG. Rituxan is a chemo drug used for Non-Hodgkin's lymphoma and RA. It can work really well, but it's really expensive and has scary side effects. We talked about this before, but then it seemed like I was getting better again for a while.

I have been doing way too much, trying to act like healthy person and do the things healthy people do. I need to accept my weaknesses instead of ignore them, because ignoring them sent me right to the E.R.

Tomorrow is another pheresis, then again next Tuesday. The approval process for Rituxan takes a while, so i won't be for a little while yet. Prayers are definitely appreciated.

NOW.....Better late than never....Rachel from This Crafter's Yarn won the CSN giveaway!
I let her know on time...almost! Rachel is a fairly new bloggy friend who also has MG! Congratulations Rachel!

All Consuming

K. So anyone out there with chronic disease who has figured out how to live with chronic illness and NOT let it consume you when you pretty much can't do anything but sit on the couch, or lay in bed. Hmmm??? Anyone? Bueller?

Ug. So sick of this. So sick of judgement and people looking at me like I'm crazy because I'm ready to do some higher risk stuff in order to feel better. Obviously what we've been doing isn't working, so....what choice do I have? I will not sit by and let this disease take me away from my family without a fight. Because I WILL.NOT.LIVE.LIKE.THIS.ANYMORE!!! I'm not going to sit around while my son is at someone else's house 4 days a week because I can't take care of him. To he!! with that. I'm going to get better or die trying. I'm DONE.

I'm feeling a little better right now...my brain isn't quite so foggy. (I'm getting my fiesty back, if ya hadn't noticed.) I'm tired though. Go figure. We ended up taking Jacob to the ER Friday night (after plasmapheresis) because he was screaming that his ear hurt. He NEVER complains about that. Got some antibiotics. Still has a yucky nose a bit, but his ear is "almost better."

So now it's a waiting game with the insurance company to see if they will pay for the Rituxan. If not, we have to think about the chemo/stem cell option, because the chemo is actually super cheap compared to the Rituxan. Nice.

So. Happy Monday. Whoo.

Update

Two plasmapheresis treatments down, one to go, or maybe 3! Ya, I know, sounds like Chicago math.


I've had 2 treatments. My neuro actually came up to see me while I was getting a treatment yesterday. I think I kind of freaked him out when I e-mailed him about completely killing off my own immune system with chemo and then getting a stem cell infusion from the umbilical cord blood that we saved when Jacob was born. (First we'd have to check if there was enough for me to use AND leave some for him if he ever needed it...if not, I would not do it.)


He thought we should do the Rituxan before we do anything with a "5-10% mortality rate" like the stem cell thing. SO. Today, (Saturday) after 2 treatments, I still feel like crap. We will go Wednesday, and probably for 2 more treatments the following week. Dr. Teener thinks he can get the insurance company to pay for it (it's RIDICULOUSLY expensive). If not, I'll have to sell a kidney or something....but then again, who would want MY organs, right?

I'm just SICK of living this way! My brain is always in a fog, I'm always tired, I hurt all over, my relationships are suffering, my son is suffering....I might as well be in prison or a nursing home or something. I'm trapped within my own body. The "me" on the inside is SO not like the "me" on the outside...I just can't take it anymore.

I will be the 4th MuSK+ MG patient that Dr. Teener has used Rituxan on, and he has had promising results. If this DOESN'T work, We'll be looking at the stem cell thing, I think. I can't live this anymore. Not when I know I can feel better.

So once I've done completed the course of pheresis treatments, and the insurance approves the Rituxan, I will have the first infusion at the U of M and stay overnight to make sure I don't have any funky reactions. If everything goes well, I will have 3 more infusions, one on the same day each week for 3 weeks (like every Friday for 4 weeks total). Then I should be able to go WITHOUT pheresis, and cut my CellCept in half. I cannot even FATHOM right now 6-9 months without pheresis. The Ritusan infusions are about 30 minutes, and as long as the first one goes well, I can have the other ones done at a local hospital. After 6-9 months, we do another round of Rituxan. I'll keep you posted.

MG and Me

Whoever tells you this disease isn't progressive is full of it. Whoever tells you that there's no pain involved is full of it. I've been taking a medication called CellCept for 8 years now, and it's worked really well. I don't know if my body got acclimated to it or what. Although I WAS off it for 16 months with getting and being pregnant with Jacob. I think maybe that's part of it. Your body changes SO much when you're pregnant. Maybe what worked before won't work again. I don't think I'll ever get to the level of strength I had before having Jacob. I wouldn't change anything, because I can't IMAGINE my life without that child, but it was a huge physical sacrifice from which complete recovery is unlikely.

Plasmapheresis works well, but ideally I should probably have it once a week. Well, that's not practical when you have to drive 280 miles round trip, find someone to watch Jacob, etc. No hospital closer does in it my arm veins (peripherally), so I woud have to get a fistula, port, or quinton cath. to get it anywhere around here. I've had the quinton cath, and it's HORRIBLE. Ports and fistulas can easily get blocked or infected.

An easy solution is to go back up on the prednisone, and have my weight go up even more, have my bones thin even more, and give me more arthritis. But the MG might get better. There's a medication they just started using for MG called Rituxan. It's actually a chemo drug (you don't lose your hair) that they use for luekemia, non-Hodgkins lymphoma and rheumatoid arthritis. There are some crazy side effects though....like if you've ever been exposed to something horrendous (like TB, which I have been, shingles, etc.) it could come back en force. Or you could get some lovely new virus that your body is unable to fight off.

Don't you love my choices? I know, you really wish you could be me! One other option is to stop the CellCept and try Imuran. Been around forever. Kind of the Prozac of autoimmune drugs.

SO anywho. If you are a praying person, please keep me and this situation in your prayers, as well as my family. It's very difficult for Doug to be a full time boss, as well as a caregiver to me and parent to Jacob. Oh, and he's a husband. I completely get when he gets frustrated...I just don't think he gets my end of it sometimes. Like I told him the other day...it's not a lot of fun being me.