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Experience - Chapter One
(30 Jan 2007) Starting Remicade
Here's my story...I thought it may be good to post, as there's not TONS of information on Remicade for P patients yet.
It all started with a small patch of P on my scalp when I was 17. Within a year, it was all over my head. I would like to say it behaved and stayed only on my head for a long time, but it far from behaved. It itched, flaked and consumed my entire scalp. I tried injections of steroids (ouchy!), every cream, foam, lotion, ointment, etc.
1. Being a chick, it's hard to get that stuff under your long dark hair (which flakes show up on like mad),
2. For years, nothing really worked on my head, except a few days of intensive treatment with Oxipor and a shower cap (coal tar). This still works so I try to use it for 3-4 days and then stop. If I become immune to this, I'm ruined. The problem is my head stinks for a day or two afterwards, and it gets all over everything. Real attractive. Dermasmoothe is also good but usually after a few days of intensive treatment, the P comes back angry.
I would get an occasional patch on my elbow or face, stomach or back, but a little sunbathing (if I was lucky to get out) generally cleared this up. I try to get a 5-7 day beach trip in every winter just to make sure I stay clear.
I am now in my 30's. For the past 15 years, I have spent every morning soaking my head in a tub so I don't go to work as an excessively flakey freak. I'm getting tired of this time consuming ritual. It's really exhausting. On the weekends, I don't want to go anywhere because I'm tired of de-flaking. But in more recent years, several things worked well. For two or three months, until I became immune to it, I had great success with Olux foam. Then that stopped working and I got Clobex shampoo. That was my FAVORITE. Put it on for 15 min, wash it out, and it doesn't stink! But it stopped working, too. I was overseas once (years ago), and some relatives dragged me to a professor who gave me a mix of sulfur, salicylic acid, vaseline, and coal tar. While it was horrible to wash out (took a week and smelled like rotten eggs), it cleared me in 2 or 3 days and the effects lasted several weeks. So I googled this and found something similar is available in a tube from New Zealand. It's called coco scalp. I bought that and it works and is easy to use. Stinks terribly, washes out easily, but when I stop using it, my scalp gets angry again. I am suspicious that it smells the day after I use it, but I can't get my nose close enough to my scalp for a true answer. This stinky concoction is now a part of my daily soak routine.
Anyway, I was living my life struggling along with my itchy flakey head — no one really understands what a pain in the ass this is, except, probably, anyone reading this on flakeHQ — jeez, I can't even let my head go for a day without a soak or the skin grows so fast it feels like my skin is squeezing my brains out. It actually gives me headaches. I swear I have the fastest growing P in town.
So I'm living my life, la la la, thinking I'm doing well on my latest diet (I dropped 25 lbs), when I was suddenly off to the hospital to find I had an abscess in my small intestine. This was at a time that I had been stressed out with an abusive boss at work for MONTHS. Most people think it's all related — like she almost aggravated me to death.
Anyway, the doctors didn't know what it was. I was bombarded with antibiotics, for a month, and eventually the abscess dissolved — and I had been diagnosed with antibiotic induced colitis and went on more antibiotic meds — I tested clear for that, but then stomach problems remained — bloody stool, cramping and nausea throughout the day, painful trips to the bathroom, etc. I would say I don't have an excessively terrible case where I can't leave the house, but when I gotta go, I gotta go, and when I go, it's a few moments of feeling like someone has shoved a machetti down my throat and it’s dicing up my intestines. I sometimes get that sensation when I'm walking down the street and I feel like I'm going to faint. And then in about 2-3 minutes it passes. The doctors say I have colitis and Crohn's. The gastro insisted I go on Remicade immediately to stay in remission. Apparently, if you have an abscess and it bursts, you get blood poisoning. This was a little over a year ago. I think the worst thing is I feel tired a lot, but that may be because I have to get up at the crack of dawn to soak my head. The fear is no good either. I got a really sharp pain in my gut one day that I blacked out for a few seconds. Had to run and get a CT scan, fearing the abscess was back — but — it was just a random sharp blinding pain.
The thought of having to go on IV medication freaked me out. Plus I had never been sick with symptoms of Crohn's/Colitis AND there is no conclusive test to prove what I had was Crohns — some surgeons thought maybe I swallowed a foreign object and that caused the abscess, and I thought maybe the antibiotics caused the damage to my stomach and perhaps it would just clear up in time. I figured I'd see how I do without going on it. Anyway, in the time since then, P has spread ALL OVER MY BODY. I have dime and quarter sized spots on my back, face, arms, boobs, tummy, bikini line, rear end, legs, in my ears. The ones on my back that I can't reach are the itchiest (of course). Creams and stuff aren't working. I only see this getting worse and not clearing up. Going to sleep is a nightmare, I suddenly get itchy and it’s unbearable. And I'm tired of having stomach cramps. And then there's the weird occasional swelling in my toes/foot that I think may be a related arthritis. That started about 2 years after I got psoriasis in my toenails. And I've had a pain in my neck/shoulder for years, which could be arthritis too?....
Finally I agreed to go on the Remicade. However, I was switching jobs and wanted to make sure I showed up for work for a little bit before I possibly disappeared sick, and then the nurse who gives it was on vacation for a month, and now they're telling me I may have to wait to reschedule in case the insurance doesn't go thru. I've been trying to get infused since December.
In the few months this has been going on, my fingernails have become deformed from P. Everyone at my new job is like, "Ew, what's wrong with you?"
Anyway, if everything goes right, I will start Remicade on Friday. Well, scratch my head, buckle over my stomach in pain, scream from my sore fingers, don't wear those shoes today because my toe is all swollen, if it isn't time I tried it.
I'm absolutely terrified, but at the same time, I'm hoping I'm one of those lucky people that does stupdendously well on it. I hope my head clears, my fingers go back to normal, my stomach doesn't hurt anymore, and we find the weird pain in my neck and foot goes away. With my luck, I'll get lymphoma and drop dead and everyone will say, "Her case wasn't really severe enough to justify her being on the drug. What a shame."
If I read one more post about someone who had a stroke from this stuff I may become suicidal.
So my goal here is to keep you posted on how someone who is slowly falling apart from possibly all the things Remicade is supposed to fix does on this stuff.
Mind you, I'm not dying from any one of these problems, but the combination is REALLY MISERABLE. My quality of life is el stinko. I've gotta try something. So why not something that's indicated for Crohn's, P, and P related arthritis?
I will send updates. If it's ok, I'd like to remain anonymous.
-Itchy and Crampy in NY
(3 Feb 2007) Ed: This is in follow up to an email I sent a few days ago.
Started Remicade on Friday. Thursday night, some dude delivered Remicade in a box to my house. Had to take a silver bag out of the box and put it in the fridge. This contained a few vials of mouse protein (the actual drug). The rest of the stuff in the box stays room temp and was outta control: 5 needles, bags, tubes, gloves, gauze, a record binder, enough paraphernalia to tie some one to a chair and slowly ooze their brains out for an evil experiment.
Anyway, Friday i got my refrigerated mouse protein (yeah, for those of you that don't know, that's what Remicade is, nice huh?) and torture kit and headed over to the doctors office. By the way, the health insurance is a big pain in the @$$ to get settled, so if you are planning on trying Remicade, plan on waiting a few weeks for approval.
Got to the doc office and they had no place to do the procedure. They put me in some doctor's office in a big cushy leather chair. I brought my laptop and set up a DVD so I could laugh through the procedure. They gave me 2 Tylenol and 1 Benadryl before we started, in anticipation of a headache and an allergic reaction. Then they took the five needles and much to my relief, injected the saline bag with them to turn it into Remicade.
A good vein dude came in and hooked me into the IV. I barely felt that, though I do hate the rubber thing they tie on you more than the needle (it pinches! I'm so whiny!) I also didn't watch, which is important, because that would make me faint. Then they started the drip. They start the drip slow and increase the protein every 20 minutes so you don't have a huge allergic reaction and drop dead. I guess this gives your body time to adjust to what’s happening vs. shock your system.
I fiddled with my DVD, which would only play in French. I think that was the worst part of the procedure. Eventually I was able to switch it to English.
At some point, my arm felt warm, then it felt cold, and I got very sleepy about a half hour into the procedure — possibly from the Benadryl. My fingers tingled a little here and there but that may have been from not moving my arm. The drip came throughout the movie (a special thank you to Vince Vaughn and Owen Wilson for making me laugh during an IV). The nurse got bored so she watched with me for a bit.
At some point, I thought my throat was swelling up a little, but that may have just been paranoia. Although it is feeling a little sore right now. But that may just be dryness. You read the side effects and then get paranoid. Nothing major happened. I did get a funny taste in my mouth and I was told I was the only one this happened to. I ate a Kit Kat to counteract this.
I am a 5'5" female, ~129 lbs, with Crohn's, Colitis and Psoriasis all over my scalp and spotted throughout my body. The procedure took about 2 hours to run through, plus prep time and then the doc comes in to make sure you didn't get purple spots and flames aren't shooting out of your head afterwards. He also makes note of what you say your symptoms are so they can see if you're improving with each treatment. What both he and the nurse did tell me was, "Just make sure you don't get sick or get an infection." I take the NYC subways every day with germ infested masses, and can hardly change my life to stay at home and live in a bubble (unless FlakeHQ starts a fundraiser to pay my bills). So this is scaring the crap out of me a little. Who decides its time to get strep throat, really? Is this something they really think I can control?
So, barring an illness my body can't fight, and barring coming down with a bad case of cancer, which are things to not look forward to in the future, all in all, the treatment went pretty smoothly.
I did come home and pass out from exhaustion. I napped for a few hours and that pretty much fixed the being tired issue. I don't think one tiny Benadryl can make you that tired. I'm pretty sure the Remicade did it.
What I'm excited for is a few weeks from now when my skin clears up and my stomach cramps go away. Wish me luck on that!
I will keep you posted.
-Itchy and Crampy in NY
(17 Feb 2007) Hi Ed: For about a week after my infusion I felt like my lungs had opened up and my breathing was really intense — not in a bad way. I have a bit of a post nasal drip that sort of disappeared and it felt like I'd get more air into my body when I inhaled. I have no idea what that was all about but I was very careful not to inhale much on the subway to work, else I get some nasty respiratory infection that is noted as a side effect. Had to cover my mouth with scarf when walking in cold or it actually hurt my chest. It was really no big deal, though, just an observation. The whole procedure really wasn't terrible. I think a lot of it depends on who makes the hole in your arm. My guy was good.
2-3 days later I noticed the places where I had the WORST psoriasis for the longest time were CLEARING UP!! My scalp, ears, elbows went from having a crust on them to a thin layer of dry skin. By day 5 my ears were clean, I could SEE my scalp, and after 10 days my elbows were clear. The skin under some of my nails, which just recently became affected with P, cleared up like magic. My fingers had been sore from it and that went away too. Probably around 7th day. This was REALLY amazing to me. I haven't seen my scalp in probably 15 years. I felt like a new person!!!
The places where I have teeny patches of psoriasis — stomach, back, boob, leg, butt — did not clear up. I found this really strange, but who cares. The worst had gone away. I have this feeling if I get some sun or use some topicals, they'll work more effectively on these spots with the drug in me. I just haven't tried it yet because I feel so FREE not having to deal with my scalp!
As for my Crohn's, my cramps eased up a bit but I wouldn’t say my stomach was all better. Not sure if the drug had ANYTHING to do with cramps easing up. Could have just been a coincidence.
On day 13, I noticed my skin began to get flared up a little, like the drug was leaving my system and it was coming back, and I had HORRIBLE stomach cramps. Yesterday was day 14 and I took my second hit of the drug. This time I became SOOO sleepy I couldn't stay awake. I fell asleep like the dead. My blood pressure dropped a little during the procedure. My normal is really low, with the top number in the 90s...my top number was now in the 80s, but this did not worry the nurse. Came home and slept a few hours then felt a little more with-it. It is now the next morning. I will deflake myself in the shower and see if the P comes back or stays away this time.
To be continued. I have a feeling this is going to be a very addictive drug. I just hope I don't become immune to it and it keeps doing what it should! I also hope it doesn't kill me in the long run. That would suck.
-Itchy and Crampy in NY
Ed’s Response: What a terrific recounting of your experience, Itchy! Please do keep us informed. I found myself cheering you on as I read.
Your immune system really doesn’t like you! Crohn’s, colitis and P are all autoimmune disorders. You may be the first person we’ve heard from that has them all!
My rheumatologist also recommended Remicade to me. The fact that I opted for Humira, instead, was because handling the injections myself worked out better for my schedule than the office visits for an IV infusion.I along with everyone else who reads your report are wishing you the best. I’d like to see you become the most sensational Remicade success story ever! -Ed