I’m not normally one to share every detail of my life online…there are those who want you to know everything that goes on with them, every second of the day…you know who you are. ;)
That being said, I’ll be that person for the next few minutes, my ailments began in mid December when my Iritis and Uveitis returned in my eyes, the last time this happened was when I got Lyme Disease a few years back. Several months after having Lyme, I developed Psoriasis…my autoimmune problems began, and I think that lovey little tick awoken it all.
Random Rant: I’m sure you know what autoimmune means, but if you don’t here is a quick synopsis: Autoimmune is when your immune system is overactive, which can cause a number of problems for your body. So while the immune system is fighting off the germs over there, it is also attacking healthy parts of your body, but it perceives them as threats, like the germs. So germ fighting (POW, BOOM, POW) and at the same time (for me) attacking my eyes, my skin, my tendons and joints…the body is a complex place that’s for sure!
So, back to the story - I venture to my fantastic eye doctor to get that cleared up…and as it’s clearing up I develop some stomach pains that crop up a few times a day and pass very quickly, along with the beginnings of pains in my legs which I attributed to being on my feet working on Christmas Eve. Nothing progresses in the worse direction till after the New Year….
…Ahhh helloooo 2019…this year certainly entered with a bang! First was a trip to the lab to get a lyme test and a liver check up (needed when taking Methotrexate for Psoriasis), thankfully the lyme was negative, but still no answers as to what is ailing me. The stomach pains have continued, and now the leg pains were settling into my right calf, left knee and ankle, and getting painful to walk. I made an appointment with my doctor, but wouldn’t be seen until mid-February…that surely wasn’t going to work. Thankfully, I was lucky to be seen by another doctor in the office on January 11th. I told her everything that had been going on, and she was able to listen, look at me, and type it all out at the same time - very impressive! What concerned her the most was of course, the legs. I hadn’t noticed before but when we looked at my ankles they were swollen, so much so I couldn’t see my achilles heel, not normal for me…and she measured my right calf and it was 1.5cm larger than my left. It was also warm and the spot that was the main point of pain was stiff and slightly hard. Off I went for an emergency ultrasound to see what was going on. After an hour wait I was in the room, I never had an ultrasound of my leg before, so I was very curious what she would find. She scanned the entire leg from groin to ankle and foot, taking many pictures, and having me move my foot back and forth and as I did that you could hear the movement in my leg, it was very interesting. That completed I went home, anxious to relax.
Only home for a little bit, the doctor called letting me know nothing critical was found, but they did find a superficial thrombophlebitis. Non-medical terms this is a blood clot found in the surface veins near the skin, amazing something so small can cause so much pain, thankful this wasn’t in your deep veins or we would have had a much more serious problem, and it is rare a superficial blood clot moves to your deep veins. She told me to rest, elevate, use heating pads, and take Ibuprofen for the pain. My wife really stepped up and was incredible, worried for me, she took care of me to the T - and I owe her so much now! :) I took a few days off work (unheard of for me) and rested up. My movement was slow and painful, and this would go away hopefully in a week or two. The question was still out there…what is causing all of this? Mid-week I head in for more lab work and a chest x-ray, my doctor had a few ideas as to what may be causing all of this. First up was Sarcoidosis. This would be answered with the x-ray, to see if I had lung growths, since I already have the skin patches of Psoriasis. Very relieved that came back clear, but my inflammation levels in my blood work were extremely high, so we continue to look.
The next thought was toxicity to the Methotrexate. I stopped taking that and went from the Ibuprofen for the legs to the magical drug Prednisone. This is truly a wonder drug…after a day the swelling was gone, pain was gone, I was able to move more naturally, my stomach pains were gone, and my skin was the clearest it’s been since 2013. The goal here was to get the legs cleared up and see if the Methotrexate was the cause of all this. The only down sides to being on Prednisone was the fact I had to pee more often, and my appetite was through the roof! Though, I could stand to put on a few pounds. The 10 day regiment came to an end…the pain and the swelling returned.
I finally got in to see my doctor on January 30th; he is a great guy and I don’t feel rushed when I see him, we can chat about the problems and really find a solution. He had done a lot of research into my ailments and we discussed things as he looked me over. We were onto a new diagnosis as if it was toxicity to the Methotrexate my body should have cleared that up and the pain and swelling would be gone, since it was not gone and still present, something else was still causing this inflammation. The current thought trend is: Psoriatic Arthritis. This makes sense as I check off a lot of the boxes for it, but there is no smoking gun that you can test to say YES - you have this 100%. Next step would be seeing the Rheumatologist.
What does Psoriatic Arthritis do? Well, being a form of arthritis it goes for the big joints, and even the small ones, such as your fingers. I’m lucky it has not gotten there…yet. For me, my knees and ankles are stiff at times to move, as well as my tendons near my bones in these areas - this is where it is different. The Rheumatologist said it best: PsA goes for where the tendons meet the bones, and there is fluid build up which creates the stiffness. This is exactly what I have been experiencing! Of course, if left untreated it will destroy your joints.
He is a very young doctor, but very knowledgeable in his field. I was lucky to snag a cancellation spot, or we were waiting till mid-March. We had a very thorough discussion on my problems, and why we think it is linked to PsA, and the steps forward. They were as expected, we will treat this using Humira, a biologic drug. We discussed all the things about going on this drug, certainly a lot to take in, but this is the way forward to being back to normal.
Fun fact about Humira: As I read more into this drug (the swiss army knife of the drug world) it tackles 9 different ailments all from one injection pen - incredible! More incredible? The fact that in 2012 it was the most popular drug in the world - making the company from North Chicago 12 billion dollars. Since it is a biologic it is very expensive. I’ll be taking 2 injections a month…if you had no insurance the out of pocket cost is about $5,000 dollars, absolutely insane!! Thankfully I have very good insurance through work, and my out of pocket cost per month is $150. That is brought down even more with the Humira Savings Card which eats the rest of that $150 to just $5 dollars a month - very manageable, but for those who aren’t so lucky that savings card is truly a savings card, allowing them to have a normal life taking this drug.
I’d be lying if I said I wasn’t nervous or apprehensive to go on Humira. I’ve done a lot of research about the drug and the risks/side effects it poses. Since it suppresses your immune system you have an increased risk of serious infections and lymphoma is also a risk. I’ve found some stats that do help me a bit with how low these are, but they are still there and I need to be vigilant, as I always try to be - I’m a germaphobe, so that helps…maybe.
On the flip side I will say this - I am very lucky to live where I live. SVMC is one of the best little hospitals in the country. The care and attention I’ve received these last few weeks has been extraordinary.
As I sit here now, typing this out the pain is minimal, but I can still feel the stiffness. This is my path now, and I know I must follow it, with the Humira, to get myself back to 100% and enjoy all the things I do enjoy in life. I will be vigilant and (as I read online) temper my fears with reality.
So…I’ve bored you with my story, but here’s my healthy bit of advice, and it’s simple: If you are not feeling 100% yourself in any aspect of your life, seek help with whatever it is. I was stupid and waited a week too long, thinking it would go away on it’s own, clearly it has other plans for me. We all deserve to get quality care and live a quality life, so if you need help, get help! :)