R.A. round-up

Quite a bit of upheaval and change after my Doctors appointment today. Problems in the short term that should lead to good news long term. If you want all the boring details, read on.

First, I need to lay out the case for why I've never like Methotrexate(MTX), the drug I've been on since March 06.

1. I have to remember to take folic acid supplements every day or my hair will fall out, I'll get sores on my mouth and I'll get nausea.

2. I have to get a Bilirubin & CBC count every two months to make sure my liver isn't getting damaged.

3. I feel like I have "methotrexate coma day" within 12-24 hours of each weekly dosage. My thought process gets fuzzy and I just want to take a nap.

4. And just to rub salt in the wound, this drug is why I had to stop breastfeeding Claire. (It would also cause servere birth defects if I got pregnant, but that boat has definately sailed.)

Still I have to take it. It did help when I was first diagnosed, although not as much as the Enbrel and Rituximab have helped. I've continued to take it while taking those as well. I thought it was because MTX helped their efficacy, but my doctor gave me a different spin today.

You see, when the FDA does testing for the new biologic R.A. medications, they can not ethically give a placebo to half the test subjects. So all the test subjects get MTX and half also get the new drug. Which means that FDA formally approves it ONLY if it's given with MTX. And my insurance company follows suit. My doctor disagrees. In the case of Rituximab, he feels that the MTX is unneeded and somewhat dangerous given it's side effects. And even though he is on the Board of Directors for the insurance, he can't get the head pharmacologist to agree to dropping the MTX as a requirement for receiving the Rituximab. So for the whole time I was on Rituximab last year, I was still on MTX even though it was really against my doctor's wishes.

Okay, back track a month. I got my labwork for CBC & bilirubin as usual. I do it in Canton, and a copy goes to my doc in Saranac Lake. Someone probably should have checked it more carefully, because my white cell blood(WBC) count was 1.8 (normal is 4-8, er....somethings per somethings...., anyway, it was low.) He had them run another check today and it's down to .8, not good. This makes me very prone to infections, so it's a bit scary.

There are two things that cause low WBC in R.A. patients. The less common is Felty syndrome, which the Doc would treat with Rituximab. More common is MTX toxicity. The MTX is starting to fight off my folic acid supplements and folic acid is necessary for WBC production. So as of today, I'm off the MTX, off the folic acid supplements, off the blood tests every month. WOHOOO. And I can celebrate by having a beer, because I no longer have to worry about the sixth reason I didn't like Methrotrexate.

6. You're not supposed to consume any alcohol while on MTX. Some people have the occasional wine, but with my Mom's history of liver disease I never wanted to risk it. Since I went from Pregnancy, to Breastfeeding, to MTX, I don't think I've had more than a few glasses of alcohol in almost four years. I also thought I'd be on MTX forever, and although nothing would stop me from a champagne toast at a wedding, I didn't think I'd ever have more than one glass at a time, of anything, ever again. (And I'm actually still going to play it safe by holding off on any celebratory beers for another month until I'm sure it's out of my system.)

And to follow up on the low WBC, I got an IV push of folinic acid today. I'll take high doses of that for another ten days, with CBC's done every week to make sure the WBC is up again. Whew!

And that's not all. I'm back on Rituximab today after an ill-fated attempt to use Humira. The Rituximab was wearing off after only 4 months, when I was hoping for a good 6 months, basically because I'm overweight. Plus, it's not too convenient to drive to Saranac Lake for a 4-5 hour treatment 4-6 times a year. I thought the every other week dosage of the Humira would go smoother, but instead I got less relief and giant rashes at the injection site.

A long chat with the Doc confirmed that the Rituximab is probably my magic bullet, and I just need to deal with the more frequent dosage. Or lose weight. And part of the reason for that was the sad updates to my family medical history. Doc uses Rituximab for treating Sjogren's Syndrome (which my Mom and her sister had) and for treating Dermomycytosis (Sarah) and although I'm fuzzy on the details, I know that Uncle Richard was getting an experimental Rituximab treatment last year for a form of anemia. So it makes sense to stay on a treatment that not only helps the R.A., but may stave off other auto-immune diseases that my family may be prone to. Especially the Sjogren's, which is often seen with R.A. patients, and if I do have Felty's instead of MTX toxicity, I'd need it for that too.

I should really invest in some Genetech stock.

Humira is not my friend

My medicine merry-go-round continues. I stopped talking the rituximab a few months ago. Partly because the benefits were wearing off after only about 4 months, instead of 6. Partly because I didn't want to miss 4-6 days of work each year to do the 4 hour infusion in Saranac Lake.

My doc switched me to Humira, and it was only adequate. This is a drug that I inject myself with every two weeks. There was no problem the first few times, but then about a week after one of the shots I got a rash at the injection site. The next week I got a bigger rash a few days after the injection. Talked to the Doc and got some ointment, but it keeps happening. This week, it flared up to a four-inch round circle within a day of the shot, and itched and burned. No fun.

So I came home today to a message from the Doc saying I must be allergic to it, to stop taking it, and he'd get me switched to Orencia. But..... Orencia is another drug that has to be infused. And even though it only takes half an hour, it's going to be a pain in the butt if I have to drive to Saranac Lake every month. I'm hoping he hasn't forgotten that I live 1 1/2 hours away. If I can do it in Potsdam or Canton, it won't be an issue to get the time away from work.

Otherwise, I think the only drug left for me is Enbrel. It's a weekly shot that didn't work so great for me when I tried it a year ago, but it may be my only choice.

Another day, another $8,000 in medicine pumped into me

I now have another reason to lose weight. The Rituximab that I took in December has worn off already. Patients average 6 months of relief with it, but my doctor suspects that overweight patients lose effectiveness sooner. The dosage is adjusted for cancer patients based on weight, so it makes sense that weight affects it's efficacy. So I'm upping the dosage on my weekly medicine to compensate, and we'll check on the Rituximab again in September. I had a treatment two weeks ago, and another today. As a bonus, I also got a foot massage and parafin dip from the physical therapist while I was there. Next time, I'm going for the full massage.

Meanwhile, I need to get inspired to exercise and change my eating habits again. But I need the medicine to take effect first, because I'm very stiff these days and have some pain in my ankles again. But summer is here, and we have a wonderful, rural road going past the new house with almost no traffic. Time to go for walks.

Also, I cried through most of Gilmore Girls tonight. It makes me glad that they decided to cancel the show, because that was the perfect episode to end on. I especially loved how Emily was trying to bribe her way into continuing the Friday night dinners and Lorelei completely caught on to her. Very sweet.

Silent Night

Peace and quiet. Briefly. The kids were great yesterday. The excess of cookies and grandparents didn't seem to send them too far into orbit. We found homes for about half the gifts, but the living room still looks like a tornado blew through. Especially with the tree and trampoline taking up so much space.

Trampoline. Big hit so far. They don't actually jump around much, but they like to hang out inside and toss the balls around. If you ever decide to do something similar, make sure that the airpump you buy works on a standard outlet. Otherwise, you and your loved ones will spend two hours in the driveway on Christmas Eve running the pump off the car's lighter. Fun.


Claire and Nathan had to help open every present. Claire actually got a head start on the 23rd when she followed Sprite into my closet and started unwrapping gifts while I was in the bathroom. She's a tricky one.


Obviously, this was all very tiring for a one year old.


This was Nathan's gift to Claire. We bought the jewelry box prepainted, but then Nathan got to decide where the glitter, gems and stickers went. It's a bit gaudy, but sweet.


This is my favorite gift. We've been buying Nathan knights for awhile, and Dad got the castle to go with them. It's wood, not plastic, and is pretty realistic. (Well, it would be realistic if it didn't have Spiderman and his ATV there too.) He liked the King and Queen that came with it, and I bought a dragon for Claire to give him. I think some siege engines and some archers will find there way into his birthday presents too.


Tomorrow, I'm off to Saranac Lake again for another medical infusion. It's Dan's birthday, so I'm hoping to be home early so we can go out for a b-day/anniversary date. Then I'm off to Vermont and New Hampshire for Roxanne's party on Saturday, as long as the weather holds. We've managed a White (day after) Christmas, but just barely.

Rituxan

Feeling a bit stressed. I start a new arthritis treatment tommorrow and the warnings for it go on for sixteen pages. I also haven't been able to find much info on how well it works for people, and what the long term side effects may be. It's been used for years for Non-Hodgkins Lymphoma patients, but it was only approved for RA this past year.

The worst part is that I have to go to the oncology dept of the hospital to get it. I'll be there for a few hours getting the drug through an IV drip. And then I have to go back in two weeks for a second dose. If it works, I'll be pain free for six months.

Must Listen To Doctor ! !! ! !!

So, I'm stupid.

I knew that taking 5 mg of folic acid daily would reduce the side effects of methotrexate (nausea, mouth sores), but once I stopped taking prednisone everyday, it was a little tough to remember to take the folic acid.

But then I started finding mouse size lumps of hair in the shower every day. Hmmmm, what does that prescription form say? Hair loss is another side effect. Maybe, just maybe, I should take my supplement everyday. That would be smart.

But I'm stupid. I still didn't take it everyday this week before taking my methotrexate yesterday. And then today I took some prednisone on a mostly empty stomach. Oooops.

So, nausea. Check. Just in time race to the bathroom. Check. Afternoon spent not eating anything and drinking only weak tea. Check.

Do you think I learned my lesson? My hair certainly hopes so.

Nothing yet

Well, I called them today. The woman I interviewed with was at their other office, so I left a message. I just don't want this to drag out over the weekend. And I'm getting frustrated because there are no jobs posted right now. I use a good website where stuff gets posted from the local Jobs Office and classifieds, and it's all truck drivers and nurses these days. There's no point in knocking on doors, unless I get desperate and want to do retail for the Holidays. I've got an appnt to take the County Civil Service accounting exam, but that's a looooong process with no guarantee a job will even be available. Grrr arrrgh.

In other news the kids have noses that a running like faucets. I can't wait to get them in daycare so they'll be sick every day. Yay!

And in other, other news, I'm switching drugs again. The miracle drug Enbrel doesn't seem to be working very well for me. And, after this month, my insurance won't be paying for it. So, I'm switching to Rituximab(sp?), which will be injected through a saline I.V. at the hospital. Takes a few hours, but once it's done, it should be good for six months. Cross your fingers, knock on wood.

RA Update

Went to the Doc last Wednesday. I didn't think I was doing better, but then he read back the notes of my last visit when EVERY single joint hurt, and I realized that I am doing better. So, I guess the Enbrel is working. Too bad I won't be able to afford it for much longer. I'm actually not even sure I have Health Insurance right now. We were getting kicked off the free insurance as of the 31st, and I sent in the paperwork to switch to the other HMO. But I screwed up and sent the wrong proof of residence, so I don't know if we got everything processed in time. I haven't gotten a new card yet. Yikes, better not fall down any stairs.

Doc was great, as usual. I started crying while talking about how I wasn't sleeping, so he prescribed an anti-depressent that also will help me sleep. It's working pretty well, I've definately been waking up more refreshed. But then, Dan's also letting me sleep until nine most days, so that's nice too. Plus, I'm back on 5 mg of prednisone, because I still have pain in my ankles and elbows and hands sometimes. But I think the swelling in my joints in the mornings has decreased. I've even been knitting again, trying to get incremental increases on the shawl I'm making for myself. It's got about 200 stitches across now, so it takes a while to do each row.

Our plan now is to keep on the Enbrel for six more weeks. If it's working well, then I'll switch to an infusion medication that works in a way similar to Enbrel. For this, I'd go to the hospital for a few hours and get an IV, I suppose it's similar to getting a Chemo treatment. Because it's a hospital procedure, it's billed to the insurance differently. I'll probably have a $100 co-pay, but I won't have to worry about maxing out my $3000 prescription cap on the Enbrel. Insurance companies are stupid, by putting in this cap they're going to be paying thousands more for me to get the infusions. That is, if I have insurance. Hmmmm.

Who needs sleep, well you're never gonna get it

Haven't been sleeping well lately. I'm tired and yawning when I get in bed, then nothing happens. Sometimes it's pain in my ankles and knees. I tried getting a body pillow, which takes away the pain for a bit. But then I have this great big pillow and I'm just not used to sleeping with it. Other times, I'm not in much pain but my brain just won't shut off. Usually I give it up as a lost cause after an hour or so and come out to the computer.
So now it's 3:30 am, I'm still up, and I'm less tired than I was 5 hours ago. I've been staying up past 2:00 at least two nights a week. Not fun.
I have a doctor's appnt today. Have to deal with a few issues, and I think I'll add a request for sleep meds to the list.


Who needs sleep?
well you're never gonna get it
Who needs sleep?
tell me what's that for
Who needs sleep?
be happy with what you're getting
There's a guy who's been awake
since the Second World War

My disease is making me sick

My health insurance situation is making me nauseaus. I just got a letter today that we'll be dropped from our state sponsored insurance as of Sept 1 because Dan's income is too high. New York's other program is $400.00 a month, and seems to only cover $3000 of prescriptions each year. I think the Enbrel I just started is $1000 a month.

So, that probably makes the decision to go to Vermont a little easier, but I still need to find something to bridge the gap between Sept 1 and whenever Dan's new job would provide insurance. Or if we stay in New York, I need to get a job ASAP that has insurance so that we aren't on the NY insurance long enough to hit the prescription cap.

Any gap of more than 63 days in coverage bumps the RA into a pre-existing condition, and new insurance wouldn't cover it for a year. This is the kind of thing that makes me want to move to Canada.

Another Arthritis Update

Had another Doc appointment. I am generally feeling well, but not perfect. And especially after the 1 1/2 car ride and 1 1/2 wait in the office, I had stiffness in my knees and elbows. So my doctor submitted the paperwork for Enbrel, which is really a miracle drug for RA that's only been available a few years. In order for the insurance to approve it, you have to have tried the older, cheaper drugs first, and failed to find relief. Since my Doc helped write the rules on when my insurance would approve my prescription, he's pretty confident I'll get it.

But what he doesn't know is the cost. The drug is at least $1000 a month, and my insurance may say I have to pay a percentage rather than a flat $30-40 a month. If it's affordable, I'll have to give myself weekly injections. If it's too expensive, then we'll switch to drugs that are administered in hospitals by infusion about once a month. But they have more serious side effects.

Doc wasn't too keen on the idea of getting a tattoo either. I will have a supressed immune system and if I get an infection, I'll have to stop the Enbrel. I'll wait and see how Dan does with his tattoo. And also wait until after the summer, when I won't be going swimming anymore.

What the heck is anti-cyclic citrullinated peptide antibody?

Good news from my doctor today. I have low levels of anti-cyclic citrullinated peptide antibody. Umm, what? Anyway, the gist is that I may have a form of Rheumatoid Arthritis that is not going to aggressively damage my bones. This is a huge relief. I can deal with the daily medications and the occasional painful flare-up. But I was getting scared about what kind of permanent damage was happening and the possibility of future knee or wrist surgeries. I may have dodged a bullet here. Still waiting to see if the new medication is working yet. Tomorrow I have to start cutting back on the steroids until I get to the point where I feel pain again. Wish me luck.

Good and Bad

I should have stayed home Wednesday. We tried a walk and a trip to the mall, but it wore me out since my arm was still bothering me. Then Claire didn't sleep well, and my usual soothing didn't work since my arm hurt too much to rock her. So I didn't get much sleep and that made my shoulder hurt worse. I couldn't lift my right arm without pain for most of yesterday. Shampooed one-handed. Fed Claire left-handed. Then, when I tried to go grocery shopping, I discovered the new car had a flat.
The good news is that my car dealer wants to be on my good side, so they sent someone over to pick up the car and change the tire. They didn't even charge me for the labor. I also called Dan's parents to rescue me, and they came over with some dinner and corralled Nathan for awhile.
I still don't have total range of motion with my right arm this morning, but the steroids will kick in by this afternoon, and I should be better until the cycle starts again tomorrow morning. I'm beginning to see a pattern of one joint flaring for 3-4 days, then its alternate joint flaring. Left knee, right knee, left shoulder, right shoulder etc. You wanna take bets on what's next? Wrists or elbows?

Lazy, Lazy, Lazy

Trying to decide what to do today. Yesterday was kind of a lost day. My right shoulder decided it was its turn to give me grief, it was about 1 p.m. before it was pain-free enough that I could easily pick up the kids and feed Claire. Nathan watched two Star Wars movies, and I watched Sin City while he napped. Not very productive. But it was snowing again yesterday, so it seemed like a lazy day was called for.

Highs today are only 38. We could go for a short walk, or to the playground, or we could just go grocery shopping and watch Return of the Jedi. Although I'm really not liking the idea of getting groceries while my shoulder is still sore. I hope my new meds start working soon, or that I can switch to better ones at my next doctor's appnt. It sucks to have to plan Nathan's activities around how well I feel.

Buying out the Pharmacy

Now that I have Claire mostly weaned (one last feeding tonight), I'm going to start my new medication on Sunday. I had to buy one of those pill organizers to make sure I keep things straight.

20 mgs of Methotrextate once a week, which will suppress my immune system to stop my joints from being attacked by my body. It will take a few weeks to a few months to work. Side effects may include naseua so I am also taking.....

5 mg Folic acid everyday, which should combat many of the common side effects of the MTX and...

10 mg of prednisone everyday, which may be the only thing keeping me moving these days. I had so much pain in my knees in January that I could barely walk, and after two days on the prednisone I was running around and packing my house. I have to wean off this when and if the MTX starts working, long term use will shut down my adrenal system.

I still feel stiffness everyday, and pain that comes and goes. I told Dan that last night my wrists felt fatigued just from holding the book I was reading in bed. And the stiffness and pain moves around a lot, so that for a few days it's in my shoulders, today it seems to be more in my elbows, and my hands are always stiff in the mornings.

I'm also going to be a pincushion for a few months, getting labs to see if any of this is doing any good, and also making sure the MTX doesn't damage my liver. Probably x-rays too, I had some done on my knees which indicated there may have been thinning of my bones already. Wish me luck.