Pain, Side Affects & Fatigue, Oh My .... My First Year

I have FLAT feet - I had been told that I had tendonitis - I can't remember when my ankles started to swell and hurt in addition to the tendonitis - maybe a year or two ago (I took naproxen and lived with it) ...  I have a history of back/neck/soft tissue issues, as a result of several car accidents - the first when I was around 11, I was hit by a car ... the last, about 15 years ago when I was t-boned and my car was written off with me in it.   In the late summer of 2011 I began knitting in preparation for Christmas and my left index finger began to get sore mid-knuckle, I thought it was from the knitting, after all I am aging and I'm not one to run to the doctor for the "little" things.  As a few more weeks of knitting went by, my finger started to crook and crook until it was in a "c" and I couldn't straighten it, which was the same time my right knee started to hurt.  Again I had passed the knee pain off, as I had sprained it many many years ago ..... "I'm getting old" I was thinking.  But when the finger wouldn't straighten, I decided I should go visit my doctor (GP) who had been caring for me for 30 years at this point, it was mid November 2011.  My GP ran the blood work and I got called back a few days later .... I went in and she said "well, it's not cancer", she told me I had tested positive for Rheumatoid Arthritis.  She immediately made a phone call and began the ball rolling for me to get into our Rapid Intake for Early Diagnosis for Rheumatoid Arthritis.  I would have a 2 month wait to meet my Rheumatologist to confirm the diagnosis.  My GP began me on plaquenil after a discussion with a rheumatology resident at the hospital, I began NSAIDS and consulted a nutritionist I knew who suggested Serrapeptase and cutting out nightshades.  I was already taking 5000 IU's of Vitamin D and I added Fish Oil to the regime of hemp, chia, and cacao with my RVL shakes and Monavie juice in the morning.

In the time between my blood test and mid January of 2012 I continued to work and to deteriorate.  My ankles, knees, shoulders, elbows, wrists, fingers, neck and jaw became involved.  The only way for me to get out of bed was to roll, cry, leverage myself on my nightstand, cry, and use my forearms to raise myself to sitting.  I would cry with every step to the bathroom and sob to sit and rise from the toilet, cry and shuffle back to bed .... wait for the Naproxen and Tylenol to kick in (I would eat crackers stored in my nightstand on the advice of my sister who has nursing education, so as to have something in my tummy before taking the pills before I could attempt getting up).  I would struggle to get ready for work, I could shower sort of, I couldn't raise my arms, so I learned I would have to wash my hair in the evenings as it was near impossible in the mornings when I was in the most pain, a shower was getting close to not possible.  I had large fears of falling during or getting in and out.  I would have to sit to dry myself .... I was learning to do my life without the use of my hands, especially in the morning.  I could not open a zip-loc bag, a water bottle, milk carton, squeeze toothpaste, hold a brush .... I purchased a new lighter hair dryer, but wore my hair up ALOT!  My vehicle is an SUV which was doable for getting in and out - but the turn signal would send bolts of pain into my wrists and driving longer distances caused pain in my hands and ankles/feet.  Sleeping was a whole other ballgame .... I also began to need sleeping pills as I was not sleeping due to the pain I was having all over my body, I needed to sleep with my hands and wrists sandwiched between pillows to keep them straight, so my GP said that my sleep was of the most importance and to not feel badly about the sleeping pill.  By mid January 2012 I couldn't cope any longer and I went to the emergency room, my sister accompanied me as she began to do through this process, and I was able to see the rheumatologist that was on-call along with three medical students.  This doctor was wonderful and confirmed the diagnosis of RA and gave me the instructions to begin prednisone and playing with the dose for the 2 weeks I had left until I saw my new rheumatologist.  He also gave us his phone number in the event that I needed anything prior to my rheumy appointment.

THE TEAM:

My sister got me a book during this initial period (The First Year, Rheumatoid Arthritis, An Essential Guide for the Newly Diagnosed, A Patient-Expert Walks you Through Everything You Need to Learn and Do).  The learning curve on a disease that you have no knowledge of is huge!  This book is great, for one thing it illustrated that there was other patients out there to turn to, so off to Facebook my sister and I went.  Another really big point in this book is something I like to pass along to the newly diagnosed; is the importance of your "team", how to advocate for yourself and put together a team that you can work with for the duration .... if possible.  The first member of my team turned out to be my sister, who had gone to school to get her LPN (licensed practical nurse).  Her most recent posting was as an in home caregiver for a lady that had RA!!!!   My sister is the one that suggested I begin journalling, to track my pain, the meds and side affects and questions to ask when I went to appointments and write details down when I was there.  She came with me to any and all appointments, remembered things I couldn't and was able to explain some of the medical stuff to me in between appointments.  She was also a great source of emotional support, as I was a complete disaster .... I was doing too much of my own research on the internet, getting alot of worst case scenarios, especially on methotrexate, one night I scared myself so badly I cried myself to sleep .... I WAS A MESS!  However, that was when I found www.rawarrior.com and got some real life valid information on methotrexate and I was able to come to terms with it.  OK, I digressed .... I do that from time to time ....  I had my most important team member, my sis ... and I was ready to go to battle to put together the rest of my team.   I will say now, that I have been extremely fortunate, I have not had to do battle - yet - I've had some amazing people on my team (Thank you to whatever energy in this Universe for giving me them).  The next person on my team would be Dr. J, my Rheumatologist, whom I met for the first time with Miss S, an Occupational Therapist, who took my history and stayed with me and my sis through the first assessment with Dr. J.  Dr J confirmed my diagnosis, ordered some chest, hand, knee and feet x-rays and told me that the first thing we were going to do was to GET ME OFF PREDNISONE! ... I immediately became a fan!  I was also instructed to get all my vaccinations updated as well as my first ever flu shot and an eye exam for the plaquenil.  We were to meet the following week .... at that meeting I met Dr. J's receptionist "The Gatekeeper" and Dr. J's nurse, Miss B!   Through the next months I would be offered a social worker, physiotherapy and occupational therapy where I would again meet Miss S, who had apparently been following my case!  I also started to work with my awesome physiotherapist Mrs. S, my long time (NUCCA) chiropractor Dr. D and the remaining member of my team, I don't even think she knows she is ... my aqua therapist Miss C, who has a history of back injury and is a certified trainer and is so knowledgeable about joint issues and is fun and has been an amazing part of my rehab.  Have I said how lucky I am and how much I love my team!  I will note that to her own credit my General Practitioner of 30 years had to refer me to a new doctor as she was going to be cutting back her hours and eventually retiring, and with my diagnosis, wanted me to have full access to a doctor, I was sad to lose her and I know she questioned herself as to whether I could have been diagnosed earlier and whether her diagnosis of tendonitis was incorrect.

BEGINNING AGGRESSIVE TREATMENT, DR. J & SIDE AFFECTS:

Prednisone is a love/hate drug .... I loved it because I got much needed relief - I hated it because while I figured out a balance of a dose that worked and tolerable side affects, it was awful! I also knew what the long term affects of this drug were (from my BF that has lupus). Prednisone was the first time I had actual hunger PAIN, real friggin' pain! A half an hour after eating, I would have stomach pain from hunger!!!!! I knew weight gain could be a side affect, knew I didn't NEED food, but dammit - I was starving!!!!! I purchased a hot air popcorn popper ... to feed the beast! I ate healthy .... I played with the dosage. I was taking the maximum dose of Naproxen and Tylenol time-release for arthritis (NSAIDS). At my second meeting (February 2012) with Dr. J and meeting Miss B, my aggressive treatment plan laid out in front of me ... it was a long visit, my sister was there, there were many tissues - I should've bought stock in Kleenex for this first year ..... my plaquenil dose doubled, I stayed on the NSAIDS, I was given instructions on sulfasalazine and working up to the full dose, I would start the folic acid and injectible methotrexate and was handed 3 prefilled syringes of Simponi (samples valued at $5000), the Simponi (a biologic) would help me wean off the prednisone and bridge the time period of 12 weeks before the DMARDS began to work. I also started taking Curcumin 95 as a complimentary supplement at the end of January 2012. I was schooled on the methrotrexate injections and had to inject myself with saline and shaking hands .... I was soooooo freaked out! I thought ... there are diabetics out there that have to do this everyday, I could do this! My sister and I left the office and went to the pharmacy armed with the scripts and she would stay overnight with me to get me through my first dose of methotrexate.  I was very concerned about my liver being able to handle all this "stuff" so I started re-visiting Miss H, my massage therapist who does myofascial work, who taught me a great meditation for my liver to do before my injections and gave me some great information on liver support including lemon in my water and deep breathing exercises.  I started a binder to keep all my script information and patient information sheets, along with all my team contacts and forms and authorizations. It was a very rough time, I never could have imagined how awful these drugs in combination would make me feel. The fatigue was paralyzing, an absolute heaviness that I have never experienced. There was headaches, nausea, mouth sores, sores on my scalp, my facial skin changed texture, my hair changed texture and broke or came out in the brush, comb, my hands and in the drain to the point I would only wash it every 4th day as it was too tramatic. I worked what was suppose to be a part time job - but I was covering alot for my business partner and adjusting my injection days to accomodate her. Did I mention the FATIGUE?????? There was also "brain fog" and difficulty concentrating, so writing things down, making lists and keeping journals and information tracked, was very important.

In February I had my annual mammogram which showed that some previous calcifications I had - changed ...... I went for an ultra sound, a biopsy was recommended, I was given the option to proceed or get another mammogram in 6 months. I discussed it with my rheumatologist, I was about 6 weeks into treatment, Dr. J suggested I get the biopsy as the stress of worrying could cause a flare. During that "unscheduled" visit, Dr. J told me I didn't have to wait for the scheduled 3 month visits, that I could come in anytime I wanted, even if it was just to talk ... Have I mentioned how much I like her? By the way, the goal from the onset with Dr. J and Miss B has been remission ...

DID I MENTION THE FATIGUE!!!??????

In May I lost my part-time job ... apparently it seemed like I didn't want to be there ... I went to the social worker provided to me: Mr. T .... I began a swimming class for people with joint issues, attended physio twice a week and got some sessions with a personal trainer at my gym. I took the summer as a gift from the universe to do these things and concentrate on some rehab and my health. It wasn't, however, a gift in the finance department .... I was encouraged by everyone on my team that I was doing everything I should be doing, but it was taking a toll on my mental health. I cried alot  .... alot! And I was having major anxiety.  I eventually looked into getting on an anti-depressant with an anti-anxiety component, Miss B said it was not unusual to be on something short term to get over the "hump" from diagnosis to management.  I was weaned off of sulfasalazine decreased my methotrexate by a third and started on Arava, I lasted two weeks on it ... I was vomiting in my sleep ... what could be worse???? Since I didn't want to die choking on my own vomit ... we stopped ... the process began for Actemra. I got a shingles vaccine (not cheap) and TB test and waited for the approval from our medical system and then the Patient Assistance Program at Roche to pick up the rest of the bill. My first infusion would be at the end of September and I was instructed to stop the methotrexate injections 2 weeks after my infusion. Every infusion has been a different experience so far, I did start on the maximum dosage .... I have heard of patients experiencing improvements everywhere from the first infusion up to the 12th ... we'll see what it brings for me ... I am enjoying the reprieve from methotrexate, but in reality, I know this may not be the last time it is in my life.

The Imaginary Friend