I am now about 2 months into Stelara (7 weeks, but who's counting). The good stuff is starting to really kick in, but the lack of stamina is hanging on like a big gooey booger. I've been an insomniac most of my adult life, but the last 3 years it's been painsonia so there wasn't much benefit to being awake at 3 am when the rest of the world is enjoying the dreams. Now however I do everything in spurts and with insomnia that works just fine. The other day I used the inability to go to sleep time to organize my jewelry box, and then when I was awake 3 hours later at 5am I took advantage of the early morning coolness to clean my pool. Of course by 8 am I was ready for a nap so 2 more hours of sleep and I'm raring to go for another 3 hour spurt of productivity. I've had this pipe dream of being able to go back to work someday, but I highly doubt I will find an employer that can appreciate my unique schedule. I also wonder if I'm ever in a relationship that I live with someone how they will be able to understand my night time activities. ANYWAY, I'm medicated and getting side tracked. Back to Stelara progress. My skin had a mild plaque flare after the 2nd dose, but not enough that most people who weren't me would notice it. I also had some pustular flares on my hands. One blister in particular is still hanging around. It will come to the surface, but angry and tender, fill full of fluid and then shrink again and become a hard lump. It's in hard lump stage today, but I see fluid beneath the lump so it will be filling back up again soon. The other few spots either ruptured quickly and turned to cheese grater skin or just reabsorbed nearly as quickly as they appeared. My pain is the other big improvement. I have dropped to half dose of my pain meds and don't need them every day on the clock to stay around a 6 in the pain level (I know the stupid pain rating system). To put it in words at 6 I can think, but the pain is most definitely there and a constant nagging, but the nagging I can dull out if I work at it. Once it gets to 7 I'm no longer functional and there is no way to be functional without pain meds. Then even with pain meds it's more of a resting functional because the pain is still there with the inflammation, but it's no longer consuming my world so much that I live in the fetal position. I have noticed that my pain is still very much affected by barometric pressure, and since it's monsoon season here in the valley of the sun there's a lot of barometric changing happening. I moved to Phoenix because it is a much more stable environment barometrically 10 months of the year. I'll have to wait till September gets here and the weather levels out again to really see where I am in the pain realm.
One thing that is not a good thing is that my brain fog is worse than before. I've had dr's make snide comments about how they don't know how I'm standing straight with the levels of narcotics I'm on let alone that I can talk straight. Now I'm on less narcotics than I've been on in 3 years, but my brain just doesn't function. My family is always either finishing my sentences or doing that thing people do when people stutter that is them willing a word to come out, but trying to not be insensitive about the stuttering. If I had to do a complicated math problem (which happened daily when I worked) to save my life I'd be dead. There is just no way I have the brain stamina or focus to do that these days. I'm not getting lost in my house, but if it gets much worse I'm going to need to leave sticky notes on the walls to remember where the bathroom is. I'm sure I will find a way to adapt, but as many of you who have brainfog know it is a truly frustrating part of the disease and medication side effects.
I've been working on a few non Stelara blogs because I'm sure you're as tired of hearing about it as I am of talking about it, and next week I'll start publishing them.
Hope you all can find a safe haven from your pain and find your joy anywhere you can.
Thursday, July 31, 2014
Wednesday, July 9, 2014
Tomorrow will be my second dose of Stelara. I know I have been severely negligent of the blog, but I've been trying to focus on allowing this drug to be my miracle. The first week was tough, but slowly but surely I started seeing improvements in my skin. My pain was not decreased, but it was changing. Rather than large area pain from inflammation I was having a lot of acute pain in and on the joints which have always been my most affected joints in addition my knees joined the chorus. This past week has been nearly as good as right before I took the TDAP vaccine that sent my already in flare PsA into full blown hell fire and brimstone flare. I have ankles for the first time in 3+ years. I also have a knee cap, not a large fluid filled bump between my shin and thigh. My fingers and toes are noticeably less swollen, but this also means I can see the deformity that has taken place in the last few years especially in my pinky fingers and big toes. It's not enough to be very obvious, but I see it. The bend at the top joint of my pinky that goes against the natural curve of my finger, the one on my middle finger that is at the middle joint going the opposite way of my pinky. That my big toe is so bent in on both feet it will get caught under the next toes when I walk if I am not wearing footwear that keeps them apart or steady in some way. I'm also fairly sure my feet have done some twisting as I've always had VERY flat feet and suddenly I have an arch. None of these things are so bad that they will stop me from being productive in small spurts or finding some way to find joy in some meaningful to me project, but they will be lasting reminders of what lurks in my body even if Stelara is a miraculous success. My energy is improving even though I still don't have much stamina. I need to take a break frequently, but not necessarily an extended nap. My skin is almost completely clear besides a few holdouts that were my worst psoriasis spots. Even those spots like my ankles and toes if you didn't know I had psoriasis you wouldn't know I had it by sight. Visually the skin appears like it is in the healing process with just the off colored scars left in evidence of the war that has been waged on my skin over the last 4 years since Remicade quit working. By touch though you can feel the scaly raised texture in those few spots. At this point even if tomorrow doesn't go well I have a glimpse of what could be so it gives me hope to keep trying.
Dose 2 of the last 3 biologicals have been the dose of doom for me. I am very anxious about how things will play out tomorrow. I will be truly heart broken if I have a severe reaction. It has been nice to have a glimpse of my semi functional life even as limited as it had become before my flare went psycho. I've started setting up my craft room, made tentative plans to do things with people in a few weeks once my immune system has recovered enough that a cold won't kill me, enjoyed swimming and doing projects around the house and yard. I've tried to remain positive in hopes that the great power of the universe wouldn't give me so much hope just to take it away, but still I am hesitant to feel joy about this improvement because I've seen it yanked away so many times before. I know the reality of my immune system is that this improvement has a shelf life because my immune system's super power is building super immunity including to meds that make it more normal. In the mean time I will hold my breath and hope for a good outcome tomorrow, and if that happens I will enjoy the next 3 months like they are my last because I know what is waiting for me the day this drug stops working.
I can't commit to being more frequent at blogging right now, but I do keep pretty regular posts on Facebook. If you haven't gone over and liked the Sausage Toes and Scales Facebook page you may want to. I forward a lot of info I get from other Psoriasis, Psoriatic Arthritis, Immune Disease and Chronic Disease/Pain groups and pages so that is usually where you will see information about new and up and coming treatments and other topics such as coping with this disease and chronic illness and pain in general.
Here's to dose #2. I pray you all are well and finding your happiness in any way you are able.