So I'm pretty stressed out right now, and I need some advice from the people who understand the most! The last 7 months have been a whirlwind of flare, treatment and nasty symptoms. I'll try to make this short.
My most recent flare began at the beginning of last year (2017) and my doctor put me on 40mg of prednisone and 100mg of 6mp right away at the end of June. This was my second time on pred, and I immediately felt better after 3 days because pred does magic like that. I stayed on 40mg for WAY too long IMO, like I didn't start tapering until at least the end of July/beginning of August I think (I honestly don't remember). And I had TERRIBLE, and I mean TERRIBLE side effects once I started tapering. Of course, at the beginning I had increased appetite, weight gain, irritability, moon face, but then I had extreme leg and feet swelling, trouble seeing, horrible acid reflux, acne that hurt, couldn't walk because I was so swollen and exhausted, and the worst part: every time (I'll explain why I had to taper twice in a second) I dropped down to 20mg, I would get EXTREMELY itchy and EVERYWHERE, hands, feet, legs, arms, stomach. It was the weirdest thing and it made my quality of life sooooo poor.
So the reason I had to taper twice was because I had gotten down to 10mg and I was having gallbladder issues. I had it removed to prevent any serious complications for emergency surgery in the future since I'm a busy college student with Crohn's and it was still the beginning of the year, so I had it out Labor Day weekend. Well they put me back on 20mg for a few days since surgery is stressful on the body and bad bleeding came back so my doctor put me back on 40mg. This time, it was not helping at all, so we tapered slowly and I have been done with prednisone since December 5.
In the middle of the second taper, my doctor had me start Humira and that was October 3. I originally only had the common side effects, like a headache, extreme fatigue and cold-like symptoms- totally doable compared to prednisone! The only thing that was bad was the injections, they hurt very very badly for me. I thought everything was good until things started getting weird, bug bite/zit looking things all over my abdomen, back and chest. They
didn't itch and only hurt if I picked at them or accidentally scratched them. They scabbed over and are still slowly healing, one month later. (I am also still on 50mg of 6mp)
But, the last few days my arms, from the shoulder to fingertips, are extremely achy. VERY VERY achy. And I think this has been going on for quite some time, but I shrugged it off as overuse of my arms due to my design major (art and lots of computer work), but it has gotten so much worse that it is always noticeable and its making life really hard. I can't sleep because I can't get comfortable, I can't do anything for more than like an hour, and its making it hard to do school work. It gets so bad sometimes it feels like a burning sensation. So today I called my doctor and he wants me to switch to Remicade.
Now the reason I am so frustrated is because my Crohn's symptoms are not really that bad and haven't been for awhile now! I think the Humira helped, but every drug that helps gives me HORRIBLE side effects and I don't know if I'll ever find anything that actually helps me AND gives me manageable side effects. This is so upsetting, especially because I am surrounded by my peers, who are busy, (relatively) healthy and normal individuals and I always feel like such the outcast who can never catch a break.
OK, pity party over. I am wondering if anyone else has had troubles with the side effects of drugs over their actual abilities in helping fight the disease. Also does anyone's doctor just switch drugs on them without doing any testing? Mine barely has, but I also live over an hour away from my doctor that usually all I get is a phone call with my nurse. So sorry this is so long, I just feel like the more info, the better
My most recent flare began at the beginning of last year (2017) and my doctor put me on 40mg of prednisone and 100mg of 6mp right away at the end of June. This was my second time on pred, and I immediately felt better after 3 days because pred does magic like that. I stayed on 40mg for WAY too long IMO, like I didn't start tapering until at least the end of July/beginning of August I think (I honestly don't remember). And I had TERRIBLE, and I mean TERRIBLE side effects once I started tapering. Of course, at the beginning I had increased appetite, weight gain, irritability, moon face, but then I had extreme leg and feet swelling, trouble seeing, horrible acid reflux, acne that hurt, couldn't walk because I was so swollen and exhausted, and the worst part: every time (I'll explain why I had to taper twice in a second) I dropped down to 20mg, I would get EXTREMELY itchy and EVERYWHERE, hands, feet, legs, arms, stomach. It was the weirdest thing and it made my quality of life sooooo poor.
So the reason I had to taper twice was because I had gotten down to 10mg and I was having gallbladder issues. I had it removed to prevent any serious complications for emergency surgery in the future since I'm a busy college student with Crohn's and it was still the beginning of the year, so I had it out Labor Day weekend. Well they put me back on 20mg for a few days since surgery is stressful on the body and bad bleeding came back so my doctor put me back on 40mg. This time, it was not helping at all, so we tapered slowly and I have been done with prednisone since December 5.
In the middle of the second taper, my doctor had me start Humira and that was October 3. I originally only had the common side effects, like a headache, extreme fatigue and cold-like symptoms- totally doable compared to prednisone! The only thing that was bad was the injections, they hurt very very badly for me. I thought everything was good until things started getting weird, bug bite/zit looking things all over my abdomen, back and chest. They
didn't itch and only hurt if I picked at them or accidentally scratched them. They scabbed over and are still slowly healing, one month later. (I am also still on 50mg of 6mp)
But, the last few days my arms, from the shoulder to fingertips, are extremely achy. VERY VERY achy. And I think this has been going on for quite some time, but I shrugged it off as overuse of my arms due to my design major (art and lots of computer work), but it has gotten so much worse that it is always noticeable and its making life really hard. I can't sleep because I can't get comfortable, I can't do anything for more than like an hour, and its making it hard to do school work. It gets so bad sometimes it feels like a burning sensation. So today I called my doctor and he wants me to switch to Remicade.
Now the reason I am so frustrated is because my Crohn's symptoms are not really that bad and haven't been for awhile now! I think the Humira helped, but every drug that helps gives me HORRIBLE side effects and I don't know if I'll ever find anything that actually helps me AND gives me manageable side effects. This is so upsetting, especially because I am surrounded by my peers, who are busy, (relatively) healthy and normal individuals and I always feel like such the outcast who can never catch a break.
OK, pity party over. I am wondering if anyone else has had troubles with the side effects of drugs over their actual abilities in helping fight the disease. Also does anyone's doctor just switch drugs on them without doing any testing? Mine barely has, but I also live over an hour away from my doctor that usually all I get is a phone call with my nurse. So sorry this is so long, I just feel like the more info, the better
