November 14, 2013

Nicholas is fine. His tests were perfect, HLA-B27 negative, no arthritis, just growing pains. Whew! 

Maddie is having a right side flair...right knee, right toes, right wrist. So strange. We had her on naproxen for 2 weeks and it wasn't working so the doctor put her on prednisone a few days ago. She's already moving with grace and ease. She has been a good sport through it all. I know her feet must have been killing her because her toes look so swollen and painful but Maddie continuing to dance without missing a single Nutcracker rehearsal. She has been fighting for the right to dance.

October 14, 2013

I took my son, Nicholas, to the pediatrician for tests. The pain that has been bothering him for months in his knees, heels, and lower back is now in his shoulders and hips. The lab took 7 vials of blood for tests, including the HLA-B27 antigen test of which Maddie and I are both positive. It's been 2 weeks and the doctor hasn't called me yet with the results. I tried to access his records online through our insurance company's fabulous website but apparently in the state of California it is against the law for a healthcare provider to allow parents to access medical records for a 12-17 year-old. Who knew that teenagers had special privacy rights? Never mind that I'm the one driving him to the doctor, paying the health insurance premiums, and buying his medicine. The only way I can get his test results is from his pediatrician. 

Maddie went in last week for her routine rheumatology appointment. All is well with her so I used our visit to ask the pediatric rheumatologist all sorts of questions relating to Nicholas. He told me to start giving my son Aleve, 2 pills, twice a day and if he notices improvement within 2-3 weeks then it is quite possibly arthritis. So far no improvement, but it's only been a week. I'm secretly hoping there isn't improvement so we can look to other causes for the pain, like growing pains. Nicholas has grown 6 inches in a year. The pediatrician said this very well could be the cause of his pain but due to family history we have got to rule out autoimmune disease.

September 24, 2013

I have been dreading writing this post because it makes my fear all the more real. My 14-year-old son has been suffering from knee pain, lower back pain, and pain in his heels. This coming from the kid who hasn't taken a sick-day from school since the day he stepped foot in kindergarten. He started high school last month, is in marching band, and on the J.V. Cross Country team. He has grown a lot the past year and my secret hope is that these are just growing pains, but my brain is saying differently. Is it normal for a teenage boy who has been running his whole life to suddenly have knee pain while running despite wearing top-of-the-line Nike running shoes? Is it normal for a teenage boy after sitting for an hour at the computer to limp when he gets up because of stiffness? Is it normal for a teenager to complain of back pain after standing for a couple of hours for a marching band rehearsal? Is it normal to walk around like the Rice Krispy kid, popping and cracking with each step? I'm inclined to say no. It is common for AS (Anklosing Spondylitis) to show up in boys during their teenage years and this is my greatest fear. My sister has AS. I have arthritis in my back along with all my other joints so the Rheumatologist is reluctant to call it PsA, thinking it may be AS or perhaps a combination of the two. I call it PsA with Spondylitis. Maddie's latest diagnosis is PsA, although she's never had any psoriasis. Anyway, these are all Spondyloarthropathies, close cousins if you will, sharing the same HLA-B27 antigen. It's time to get my son tested, and probably my other two kids as well.

I will call today to set up an appointment. 

September 09, 2013

I am losing my hair. The MTX injection is obviously more potent than the pills and the side effects are following suit. I've found ways to ignore the nausea by sucking on potato chips and staying too busy to get distracted by it. But there is no ignoring the hair falling out. Last week I asked my hairdresser to cut my hair short. My husband and kids don't like it and frankly neither do I, but what choice did I have? It was getting thin and stringy looking. At least now it looks like I have a full head of hair. I'm okay now but a couple of days ago I was having the ultimate pity party. Then I remembered cancer patients who don't just lose some of their hair, but all. There is always something to be grateful for.

August 01, 2013

I've been acting like a bully. After trying the Avara (leflunomide) for 4 months and NOTHING, I told the Rheumatologist I wanted MTX injections. I did my research, I told her, and it isn't on the FDA list of drug shortages anymore so I demanded to get that drug. She caved. How could she not? I'm sick and tired of the GI problems caused by these ridiculous poisonous drugs. Now I can get that ridiculous poisonous drug without the GI problems, I hope. What a roller coaster it has been trying to set up appointments to get these weekly shots. My insurance company won't allow me to self-inject. I don't know if it's a CA regulation or just my insurance company. My husband's currently on the search for that answer. I was under the impression I could go to any nurse's clinic to get these shots and there's a clinic a mile away. Not too bad, I thought. But then I discover that NO, I have to go to one of only three infusion centers owned by my insurance company, in all of San Diego County to get these shots. The closest center is 20 minutes away. 20+20+ the time it takes to park, check in, sit in the waiting room, and finally get the shot = an hour total. REALLY? Must I take an hour (plus gasoline plus wear and tear on my vehicle) out of my busy schedule every single week for a 15 second shot? My internet research shows many people self-injecting MTX so why can't I? Must patients always have to fight insurance companies? Shouldn't there be an easier way to healthcare?

July 15, 2013

My fingers hurt. I can't play the piano, not for long anyway. The cold winter weather usually makes me hurt but my SED rate is up even though it's hot out side. Overall I've been feeling okay but this inflammation in my fingers is ridiculous. I want to trash the Avara and get back on the methotrexate but I refuse to do the pills as they bring on the GI issues. I did a little research and found that liquid MTX is no longer on the government list of drug shortages so when I go to the Rheumatologist next week I'm letting her know I'd like to get the MTX injections and I want no more excuses.

We went to the county fair and bought orthopedic inserts. Maddie has loved hers but me, not so much. It bugs me that these so-called foot specialists don't know the difference between plantar fascitis and enthesitis. My right foot is inflamed and the insert makes it hurt even worse. I was assured that it would make my feet feel better. Well it doesn't.

I went horseback riding on Saturday. Apparently arthritis and horseback riding don't mix. Today I've got arthritis pains and I'm walking like a cowboy. What a picture.


May 02, 2013

The floors in my house have been an arthritis sufferer's worst nightmare, hard tile, unpadded carpet, and linoleum. This week we had it all ripped out. Our replacement, a gorgeous Santos Mahogany wood floor. We chose the floating wood rather than glued down because floating is supposed to be easier on the joints. I also got the highest quality pad that was laid down underneath the wood for extra added comfort. Wow, it's more comfortable to walk on than my carpet. I have even been going barefoot. 

April 12, 2013

Online support groups like this have been extremely helpful to me as I battle PsA. I learn from the experiences of other arthritis sufferers. Today I learned this:

A couple of years before my joint pain began I got bronchitis a couple of times and then pneumonia. I never felt like I fully recovered from the pneumonia. Sure my cough was gone but I had this constant heavy pain in my chest and could never take a deep breath. After months of struggling I was referred to a pulmonologist. I was tested for asthma which came out negative yet the doctor put me on asthma medicine. When those inhalers didn't seem to work she put me on COPD medicine which did little to alleviate the heavy chest feeling and rib pain. Telling me my chest cavity must be bruised was the best the pulmonologist could come up with so I decided I was done with her. Then a few months later the arthritis started and the rheumatologist became my new doctor.

A few months after I started Enbrel it dawned on me that I was able to breathe freely, no pain when taking deep breaths. My lungs were back to normal. I told my rheumatologist this and she seemed puzzled. Whatever.

Then, today I find out, from an online support network of all places, that I'm not nuts. There is a condition called costochondritis, a form of inflammation of the cartilage where ribs attach to the breastbone. Illnesses such as psoriatic arthritis and ankylosing spondylitis feature costochondritis. 

The puzzle pieces are fitting together...the years of foot pain (which I was always told was due to flat feet but was really enthesitis), chest pain (which I was told was asthma etc. but was really costochondritis), jaw pain (which I was told was TMJ but was really arthritis in my jaw joints). All these conditions were centered around the same spondyloarthropathy diagnosed years later. And these issues have been resolved using Enbrel (except for the enthesitis, that nasty pain won't go away for anything). 

I'm a problem solver and love it when the unknown falls into place. 

March 15, 2013

It looks like I'll be trying something new. My stomach hasn't been tolerating the methotrexate well over the past couple of months so my Rheumatologist is switching my meds, taking away the methotrexate and adding Arava (leflunomide). I get to keep the Enbrel and meloxicam, yea! After reading the warnings for Arava I'm a little nervous to take it. I thought methotrexate was pure poison, but Arava is like the meaner twin sister. I have a feeling I won't last long on this drug. There's a 20% chance of stomach problems so I'm sure to be in that minority. All I want is access to the methotrexate injection so my stomach isn't torn apart by this drug. Why is there still a shortage? It's been years now...just make the medicine! Why does it have to be so difficult? Thousands of cancer and arthritis patients use this drug every day and it is critical to the treatment of both conditions. What is the hold-up?

February 15, 2013

Yet another piece of arthritis advice received via email: 
2 spoonfuls of honey and 1 teaspoon of cinnamon in hot water to drink twice daily. 

I think this is one of the more ridiculous arthritis remedies. But, just to make sure I did my research. Many online sites claim it helps with inflammation, that a study was done by  Copenhagen University. I discovered that Copenhagen University never conducted such a study, that cinnamon has anti-inflammatory properties but if taken in high doses can be toxic, and that it is important to do a thorough research of every piece of advice you intend to try. Even those things that may seem harmless can have dire consequences.

January 12, 2013

It has spread. Maddie now has two sausage toes, a swollen hand, and stiff knees to go along with her arthritic ankle. We started her on Prednisone yesterday. Poor girl.

January 01, 2013

Christmastime is stressful. The last 2 Decembers I went on prednisone for a couple of weeks to get me through the holidays. This year was no different except I did it without doctor approval, oops. I was out of my prescription so I have been using Maddie's prednisone pills from a prescription that we filled months ago. Her rheumatologist wanted us to have the pills with us in case of a flair during our big summer trip. With the constant rain, cold, and stress this season brings I knew I couldn't get through the holidays without some extra help. For a few days with prednisone I felt normal, free of pain, free from fatigue, like my old self. And that's how I got Christmas ready for my family of 6, how I got through my December musical performances, student piano recitals, working back stage at my girls' performances of the Nutcracker ballet, and even completed a bit of holiday baking. 

Maddie was supposedly in a "remission" having gone 7 months without a flair. Yea right. Last week she woke up with a stiff and swollen ankle. Classic flair. So far it's just been this one joint which is good because with multiple joint flairs I'm supposed to give her prednisone, the exact pills I've been taking for myself. Big oops! For now we are giving her naproxen and hoping her flair doesn't worsen. All fingers are crossed.