It was a long road, but now it has been 5 years and I am still on Remicade. In fact today as I am writing this it is December 9th, 2015. I received that first IV of Remicade in the hospital in Denver on December 9th, 2010.
I have felt great for the last 4 ½ years (my dosage has been doubled since then but is still working for now). I went off of Soriatane once my skin was clear, as an experiment with my Dr to see if the Remicade could keep it clear. That was a few years ago and it’s still clear. My joints are doing pretty well too. There is definitely permanent damage to my joints, but the biologics are slowing down that process. I never went back on Methotrexate, they want me to but I just won’t at this point.
I have had two surgeries on my left ring finger to try to straighten it back out, the most recent one was in 2015, but no luck. The joint is gone so will need replacing at some point but because I’m still young they don’t want to do it yet.
It’s been a few years since I added to this post, so I wanted to let you know how my treatments have been going. In January 2016 I started the ketogenic diet to try and help manage the inflammation in my body and my autoimmune disorders. I started having stomach issues in 2015 and went through a lot of testing, as Drs thought I might have Crohn’s Disease. Once you have an autoimmune disorder it is easier to “collect” others. But I decided to turn to food to see if I could help myself out. I went gluten free first and within a week I noticed an improvement. I did that for 6 months and then decided to take it further and started looking into low carb approaches again. I had done Atkins before, but wanted to see what else was out there. I read the Bulletproof book and Grain Brain and also did some research online, which is how I learned about keto. It sounded like something I could do, so I started on January 6th, 2016.
2 years and almost 10 months later I can confidently say keto is now just my way of life. I can’t imagine ever going back to eating a traditional diet. It keeps me feeling satisfied, I have lost 40lbs, the inflammation in my gut is healed, and I feel like I am doing everything I can to keep my body in a place where it can focus on healing.
Does that mean I have cured my Psoriasis and Psoriatic Arthritis?
NO. Not even a little.
Keto is not going to cure the destruction of my joints, which even with the strongest meds available is happening at what I find to be an alarming rate. Not everyone with PsA will have this experience, but I have a very destructive form of PsA. About 6 months ago the Remicade that had worked so well for me for 7 years stopped working. It was very difficult for me to accept because I had felt so good, and nothing had ever worked that long. But it got to a point where 2 weeks after an infusion my joints would hurt again (infusions were happening every 6 weeks), so I knew I had no choice but to switch to something else.
In the last 6 months I have tried a few combinations, so far nothing has worked great. I tried Cosentyx but it did not work for me. My Psoriasis has broken out again and my joints have been sore. Mainly my hands, feet and knee are affected right now in terms of joints. My current medications are Xeljanz and Methotrexate. They tried Arava first instead of MTX because of my hatred for MTX, but it didn’t work so MTX was my only option. I have a better attitude about Methotrexate this time around though because it really is my only option as a companion drug, so I just need to suck it up. I’m 3 weeks into a larger dose of it and I do think I am starting to see improvement. Within 4-8 weeks you can usually tell if it is going to work and 3-6 months should show maximum effectiveness. So I have a little ways to go, but I feel hopeful. I take the Zeljaz every day (it’s a pill) and I take 9 Methotrexate pills every Friday. The MTX pills wipe me out for at least a day, so Friday night is the perfect time to take them.
Currently I am only seeing a Rheumatologist, not a Dermatologist because in my experience once the joints start improving with meds the skin will follow. I did have my Rheumatologist prescribe me some basic topicals, but otherwise I am depending on the drugs.
I also had my first joint fusion in the last 6 months. My thumb joint (the middle joint, Metacarpophalangeal Joint or MP) on my right hand. The arthritis had destroyed the joint, so fusing it was the best option. Below are photos of my hand before the surgery and after. A nice big scar reminds me of it, but overall the healing hasn’t been so bad. I will need to do the same surgery on my left thumb eventually, but so far the joint is holding on a little while longer. I don’t have full motion, but I can do most things I could do before since my hands have already been limited by arthritis, this is not a big change for me.