My life with RA: The First 3 Years

Last month, I celebrated 20 years with rheumatoid arthritis.  Tomorrow I will celebrate 5 years of being Paleo.  I said I’d blog about it all, and it’s certainly been a while since I’ve posted, so here goes.  This is the first part of I don’t know how many on my life with RA.

The first 3 years:

I was pretty healthy.  I had had allergies and asthma pretty severely as a kid, but I moved from the east coast to Colorado in 1991 to go to college, and I appeared to have left most of my allergens behind.  No more allergy medicine, although mold and cats still seemed to get me.  Luckily, Colorado has a pretty dry climate.  I was 5 feet 4 inches and about 130 pounds.  I was quite strong.  I worked.  I went to school.  I lived a pretty normal college life, going to school, going out with friends, drinking a little too much.  I got my bachelors degree in the spring of 1995 and started on my masters that fall.

Around April of 1996, I started having unusual fatigue.  At the time, I was 23 years old. I was working at Target at 4:00 AM (yeah, AM) unloading freight from trucks, stocking the sales floor, and backstocking (as in climbing up 12 foot ladders carrying heavy boxes).  I was also working on my masters degree in speech-language pathology full time.  I was entitled to be tired.  This was an unusual tired though, and after a month or so, I went to the doctor.  I was extremely fortunate, as I had just acquired health insurance a month or so before symptoms started, after working at Target for 2+ years.

My doctor tested me and found out I was anemic.  I started eating more red meat and taking an iron supplement.  A month or two later, I was even more tired, so tired in fact, that I was sleeping a ton.  I struggled to find the energy to get out of bed, to work, to go to school.  Something was very wrong.  I went back to the doctor.  I can’t remember everything she tested me for, but I know mono was on the list, and I was negative for that.

I was taking summer classes, attempting to get a 6 semester masters done in 2 years.  I remember taking a class on research.  It was a 1 week class, 8 hours a day.  It was brutal.  I remember leaving the class one day, and a storm was coming and my feet were KILLING me.  It was unusual, as it was the tops of my feet.  I blamed bike riding and digging my toes into the bed at night.  I had recently gained the habit of sleeping on my stomach, which I had never done before.  That must have been it.  They hurt terribly though, and I had a hard time walking to my car.

The only family I had in the state were an aunt and uncle who lived in the city where I went to school.  On Friday nights, my uncle (and his friends) would always treat me to a meal at a bar/restaurant they had been going to on Friday nights for 20 years.  One of my uncle’s friends had been quite sick, bed-bound for several weeks with an unknown illness.  I missed her, as we frequently split a dessert.  Then, one Friday, she was back.  We had an interesting conversation about joint pain.  Since her illness, whenever she moved her joints in certain directions, she was having a sharp pain in her joint, which often radiated.  It was strange, as just recently I started noticing the same thing in myself.  I sorted boxes coming down the track off of the trucks at Target.  I took some boxes off and put them on pallets.  The rest I sorted and shoved down one of two other tracks.  If I shoved in just the right way, I had pain in my shoulders that radiated all the way down to my fingers.  It was wicked sharp, but would be gone fairly quick.  We had a few conversations over a few weeks about the similarities in our joint pains.  The difference was that hers got better eventually, and mine got worse.  Much much worse.

I went back to the doctor, and at that point, she sent me to a rheumatologist.  I took my aunt with me to the appointment.  She was a nurse, and I figured she would understand more than I would.  The rheumatologist ran more tests: mono, lyme, RA, lupus, parvovirus, thyroid.  Everything came back negative.  She said to come back in a few weeks, and they would run them again.  I did.  Everything was negative, but my lupus numbers were going up.  Back again in a few weeks.  My lupus numbers were now borderline for a diagnosis of lupus, but not definitive yet.  I was developing the lupus mask. The rheumatologist started preparing me for what we thought was inevitable.  In the meantime, I was sleeping 20-22 hours a day.  I was missing classes and work.  I would wake up and not know what day it was, when I last went to the bathroom, or the last time I ate.  Things were looking pretty ugly, but I took it day to day, and I can’t say I ever freaked out. 

By November, I was really a mess.  All of my joints were locking up.  Despite accommodations at work, I wasn’t able to do much work, and what I did do caused extreme pain.  I wasn’t on medication.  I decided to take an incomplete in one of my classes.  Lucky for me (and not so lucky for her), I had a professor who had lupus, and I think she made it so things worked out at school.  At Thanksgiving, my mom came out to take care of me.  I don’t think she really understood how challenging things had become.  She wanted to take me shopping with my aunt, and I remember telling her (once we got to the store) that I just wasn’t up for walking. I stayed in the car, which was also quite painful, wishing I was home sleeping through it all.

After my mom left, I continued to be a mess.  I remember one night lying on the couch watching tv.  Everything in my body locked up except my elbows.  I actually couldn’t move, and I had a thought that I could die right there in my apartment on the couch.  It was a very claustrophobic feeling, one I don’t ever wish to repeat.  I don’t remember how I finally got up.

In early December, I was back to the doctor’s.  This time I had a diagnosis.  My lupus numbers had dropped drastically, and my rheumatoid factor, seemingly out of nowhere, was positive.  I had rheumatoid arthritis.  And you know what?  I was elated!  Finally, after 8 months, I had a diagnosis!

I went home and called my mom, speaking at 100 miles per hour, telling her it finally had a name.  I had rheumatoid arthritis.  She said, “you’re on prednisone, aren’t you?”  I said I was, I had just gotten a prescription for it.  She said she could tell.  It always did make me hyper (throwback to childhood asthma pre-inhaler days).  I gained 40 pounds in the first 2 months after starting prednisone.  I was excited I wasn’t going to die.  My parents did not share my enthusiasm for my new diagnosis.  My mom’s grandmother had RA.  It had been severe.  She was wheelchair bound.  My mom didn’t like going to see her because she cried all the time.

For Christmas, I hopped on a plane back home.  I always went home for Christmas, but that year, my mom insisted on taking me for a second opinion on my diagnosis, wanting me to have anything other than RA.  Despite the prednisone, the plane ride was excruciating.  After flying all day, I did my best to walk as normal as possible and put on a good face getting off the plane.  I doubt I was very successful at hiding how awful I felt.  When we got to my parent’s house, I faked taking some extra time looking at Christmas decorations, as I knew I couldn’t walk up the stairs.  I didn’t want them to know that, so I sent them on ahead, and I scooted up on my butt.  I didn’t want the drama of the reaction.

Over the break, we went to Pittsburgh, Pennsylvania to a supposed (according to my mom) top notch rheumatologist.  It was a 6 hour drive, again excruciating, but at least it didn’t end with a trip up a set of stairs.  The doctor reviewed my tests and agreed with the diagnosis.  He told my mom there were a lot of new treatments for RA, and that my life didn’t have to be like her grandmother’s.  That helped to decrease the drama, but what I realized later was that it was kind of a lie.  It was still a lie I was glad he gave my mom.  He also noted that I had never had the chicken pox (apparently they tested me for that somewhere).  He recommended I get the new vaccine that had recently come out (bummer for me I scheduled an appointment for Spring Break to get the shot and broke out in pox 3 days before the appointment, age 24).  6 hour drive home…ugh.

Back in Colorado, I had my eyes examined before starting Hydroxychloroquine.  The Pittsburgh doctor’s “lots of more treatments” were only two.  Hydroxychloroquine and Methotrexate.  I think I started the medication around January, 1997, along with some prescription pain killers so I could sleep comfortably and trials of several prescription NSAIDS, before I found one that didn’t hurt my stomach.  I was still taking prednisone in increasing doses.  I also took an educational leave of absence from my job, as I had to complete 2 internships, both basically full time jobs, working spring semester in an elementary school (hence the Spring Break chicken pox) and summer semester in a nursing home.  The educational leave of absence allowed me to continue getting health insurance, but I had to pay out of pocket (not nearly as expensive as now….I think I paid about $130/month, and it was REALLY good health insurance.  I owe Target a lot for that.  I owe United Healthcare a lot for that too.  I continue to be a faithful shopper of Target for that reason).  I finished up my incomplete from the previous semester and managed to graduate on time in July, 1997.

In August, I moved to the Denver metro area and started my big new professional job as a speech-language pathologist.  I was working for a state-run agency in a school designed for kids with special needs. The pay was awful.  I would have earned more working full time at Target.  The health insurance, Cigna, was deplorable.  Where United Healthcare had covered my doctors and medications, Cigna covered almost nothing. I literally had to study the state law to get them to cover anything, and I even hired an attorney once (the attorney was cheaper than my medication).

My RA was still a bit of a mess.  I had tried some dietary things during this year, the biggest was vegan, which lasted 2-3 months I think.  By January of 1998, my rheumatologist thought I should add methotrexate, probably my biggest regret.  I started it and dutifully went for all of my liver function tests.  The dose got increased a few times (from 4 pills to 6 to 8 per week).  I felt green every time I took them.  During the 14 months I was on methotrexate, I got sick constantly.  Mostly I got strep… over and over and over.  It got to the point that the doctors wanted me on low dose antibiotics all the time. I started following the creation of Enbrel, the first biologic to hit the market.  I followed the clinical trials and saw that it was doing well and likely about to come on the market.  I talked to my rheumatologist about it, and she hadn’t heard of it yet. But pretty quickly, she became extremely knowledgeable.

In March of 1999, over Spring Break I got really really sick.  I woke up not knowing what day it was (later finding it was only Saturday, the first day of Spring Break).  I took a shower and fell getting out.  I wasn’t clear if I had passed out or just fell.  I called my uncle to take me to the ER (first ER trip since second grade broken finger).  At the ER, given my history, they checked my liver function.  It was a little off.  They asked me if I was good about doing my liver tests and what my numbers had been.  I told them I always did them, and that they were normal (I didn’t know the numbers, the doc only told me I was ok…. ALWAYS KNOW YOUR NUMBERS).  I had strep again with a 103 fever.  The doc didn’t seem to believe I didn’t drink (I used to, but hadn’t touched a drop since methotrexate.  I thought my rheumatologist was going to make me swear on a Bible on that point and not getting pregnant).  Anyway, the ER doc insisted that I had to alternate large doses of ibuprofen and Tylenol to get my fever down.  I argued that I knew I wasn’t supposed to do that with the methotrexate.  He insisted that it was imperative that I did.  I stayed with my aunt and uncle that week.  I had no sense of balance.  I couldn’t walk without falling over.  I couldn’t eat, and if my aunt hadn’t forced the issue, I wouldn’t have had anything to drink either.  I couldn’t get my fever below 102.  On Monday, I followed up with my regular doctor as ordered by the ER doc.  She was alarmed at my condition.  She retested my liver, and ran some other tests.  She sent me home with my aunt.  I suspect she would have sent me to the hospital if my aunt wasn’t a nurse.  The tests took a long time to come back.  You know when you have 2 doctors calling you on the weekend, that things aren’t good.  The tests indicated I also had a virus, probably the flu, in addition to strep.  My liver function was also really really really bad on all 7 liver tests.  The doctors ordered that I stop ALL medications (all 5 of my RA medications and the Tylenol and ibuprofen). I will tell you that liver failure is nothing to mess around with.  I never felt so awful in my life, and I actually worried that I was going to die.  I couldn’t sit up.  If I blinked, I lost all orientation.  I was pukey.  I was sick for all of Spring Break and well beyond.  I missed a lot of work after Spring Break and went back to work on a modified schedule.  Not fun for your first “professional” job.

After I got over being sick, I decided not to go back on most of my meds. Even after being off of everything for a couple of months, I didn’t feel any worse, although I still felt pretty awful. I think I went back on prednisone and an NSAID, and I think that was it.

My hands and feet were pretty gnarly looking, even before going off meds.  My knuckles at the base of my fingers were blackish and the side of marbles, particularly the ones below my index and middle fingers.  My feet were also pretty bad.

In the fall of 1999, my rheumatologist recommended I give Enbrel a try.  Had I not gone through the whole liver failure thing, I probably would have been thrilled to give it a try.  I had closely followed the clinical trials for a while.  Given everything that had happened, I was very scared to be one of the first people to go on this medication (it went on the market in November of 1998).  At that time, the creator of the medication, Immunex, was a small organization and Enbrel was their only drug.  It was hard to make, and they could only make a limited supply, so you had to register to see if you could get on it. It was around $1,200 per month.  I was actively talking myself out of it when my rheumatologist suggested hand and foot x rays.  If they looked bad, she highly recommended I try Enbrel.  Well, they looked horrible.  There were 3 spots in each of my wrists that had little to no joint space.  There were cracks in the ends of all of my bones, and some of my toes looked broken according to the radiologist’s report.  In addition to that, my ligaments had been sliding off their spots on my middle fingers causing horrible pain and an inability to straighten my fingers.  I was a little shy of 3 years since my diagnosis.  I decided to try Enbrel.

As I recall, getting the Enbrel was no easy task.  Pharmacies didn’t keep it in stock, as it was too expensive if nobody bought it.  They didn’t even want to order it.  I probably called 20 pharmacies before I found one who would.  Insurance didn’t want to cover it because of the expense (my rheumatologist argued my failure on hydroxy and metho, and I was rapidly heading toward multiple joint replacements if it didn’t work, and that’s how insurance covered it).  Apparently there was supposed to be some kind of training, as it was injectable.  The pharmacy insisted it was the doctor’s office, and the doctor insisted it was the pharmacy.  In the end, I read the instructions and kept my aunt, the nurse, on the phone while I did the first one.  And you know what? It was a MIRACLE!  Within 3 hours, there was a visible difference in the size of my hands, and I was alternating feet on the stairs, which I hadn’t been able to do in a long time.  The Enbrel didn’t put me in remission, but pretty close.  With some physical and occupational therapy, I was able to start walking better (I had painful bursitis in my hips from walking funny because of the RA in my feet).  I got my tendons back in the right spots on my middle fingers.  It took about a year, but I got off prednisone.  I was in a pretty good place.

Lots more to come, but that’s enough for today.  Love to you all who are going through these similar struggles.