I took my second Simponi shot on Friday, September 11, this time using the auto-inject pen (more on that in a minute). I left on Saturday for a miserable five days at a convention and exhibition where I assembled our 20×20 exhibit booth (with some help), stood for hours on end working in the booth and walking around the conference, and disassembled the booth, all on hard concrete floors covered with a single layer of seemingly harder carpet tile. Travel is hard enough on me — lugging bags around and trouncing through airports — but convention work should be added to Dante’s vision as the 8th level of hell. The fact that (1) I made it through and (2) wasn’t screaming with pain is a clear indication that the Simponi is, indeed, working. Although I did tell my boss that this is probably the last year I’ll be able to set up and take down the booth — it’s just too hard on me.
I saw my rheumatologist the day I got back (yesterday, Thursday, 9/17) and she seems to agree that things are going well. However Simponi is a new drug so we’re still learning about it. She told me that I’m not the first patient that has said the relief doesn’t last for a month so she’s asked me to keep a loose record of when I feel it start to wear off and when it feels like I really need the shot again. Doctors are collecting this data so they can go back to the manufacturer (and through them, the insurance companies) to increase the dosage to every two-three weeks instead of every month and still have it covered by insurance (at $1500 an injection, that’s an important step).
I think I mentioned in an earlier blog about feeling very irritable and very fatigued and that research had pointed me to a low folic acid level. I started taking 1 mg per day and almost immediately the symptoms got better. I had been thinking about taking 2 mg a day, and my rheumatologist suggested that would be a good dosage and wrote me a prescription. I took two tablets today and I feel like my old self. The rheumatologist is also checking my platelet counts because I’ve been bruising easily lately and is further checking my vitamin D levels since the folic acid had produced some positive results.
Things are definitely looking up. I just hope that the Simponi will start building up in my system and, in doing so, will last longer.
About the autoinject pen. What a mess. I can and have given my self shots with a syringe. I don’t mind the shot, but I hate having to watch myself push the needle into my skin. So when it came time to refill my Simponi, I called the pharmacy and asked them to call the doctor and get the autoinject pen authorized instead of the syringe. One click and it’s over — a much better idea. This was on a Tuesday, plenty of time for them to get it authorized, order the medicine, and let me pick it up for my planned injection on Saturday. Well, on Thursday, I found out I was going to Chicago on Saturday for the convention, so I sent my husband to the pharmacy to pick up the Simponi so I could take it Friday night before I left town. The pharmacy [said they] called on Tuesday, but the doctor’s office was closed. They had tried again Friday morning and hadn’t gotten a response. [They didn't try on Wednesday or Thursday.] Now, I’m leaving town for five days, I need the medicine — especially since I’ll be exerting more than usual, and there is no way for them to get the medication in (autoinject or syringe) because it’s shipped from the distributor in the next state over. I’m cutting out several steps of drama, but the end result is that my rheumatologist’s office provided me with not one, but two samples, of the Simponi [for free -- a $3000 value] in the injectable pen, which got me through the immediate crisis. Then when I got back to town and saw the doctor, she wrote a new prescription for the pen, so that’s what I can use going forward.
For those of you who are interested, this pen is much better than the Humira pen because it automatically retracts itself when the injection is finished — in about 3 seconds. No more counting to 10 seconds with the Humira pen. Some people say that Simponi doesn’t sting like Humira does, but I really didn’t have any problems with Humira anyway, so to me the biggest differences are only having to take one injection per month and the simpler pen. Plus Simponi works for me and Humira clearly wasn’t.
That’s the update for now. Life with RA seems to be getting better.