Post Edited (Rider Fan) : 6/29/2009 9:27:15 AM (GMT-6)
Hang in there Rider Fan! Hopefully your GI on Monday will offer you some good advice. I know how frustrating it can be when you take your meds as prescribed, and then discover they may not be helping as much as you thought. Have you talked with your doctor about your ongoing extreme fatigue? Maybe some blood work is in order.
Let us know how things go.....
Is your doc having you take iron since you're anemic? If so, it's best to take it with a vitamin C supplement. Also, for best absorption, don't take any other vitamins at the same time you take the iron---wait at least a couple hours between them. My GI also periodically tests me for Vitamins A, D, B12, Zinc etc. Have you ever been tested for any of those?
I recently called a Humira nurse, and discovered that it can take up to 12 weeks for some people before the Humira is effective. On the other hand, some people notice improvement fairly quickly.
Good luck, and my thoughts are with you.
Bummer about you not being able to take iron. I'm anemic at times, and borderline at other times. I'm supposed to take iron regularly, but it sometimes also bothers me (stomach ache etc.)---so I tend to go back and forth between taking it and not taking it.
CONGRATULATIONS on you soon become a daddy! So sorry you're having all these problems at this time. I'm sure that the stress of your condition AND the stress (yes, excitement is also a stressor) of having a baby isn't helping your Crohn's.
Hopefully you are being good to yourself and trying to relax, laugh etc. in spite of all this! Even when you're fatigued, sometimes watching a funny movie can help a person feel better. Also, even go outside in your backyard and spending some time with nature (watching the birds; taking in some deep breaths of fresh air; etc. can improve ones mood).
Thanks for your comment about my rash. Fortunately, it's not that bothersome. It's just that I like to get at the bottom of things and understand what is happening and why---particularly when we are suppressing our immune systems with these meds.
As for whether or not the Humira is helping, I don't know. Since I generally don't have D, there's not an easy way to tell. I'm having my doubts, though, as I recently had to go to the ER for a partial bowel obstruction (after being on Humira for about 10 weeks). Also, I recently noticed I had passed some blood during a BM---this scared me quite a bit, as passing any blood is a VERY rare thing for me.
Thanks for your communication, and keep us posted, OK?
Sorry to hear you are still having problems with the bleeding. Maybe your GI will increase your Humira to once/week, just a thought! I do know though that it took a few months before I saw any results, and I have just started to have Humira weekly. Lets hope that it heals your problem, and maybe one more blood transfusion will perk you right up on your road to recovery. Soon you won't have time to be sick, you will be busy enjoying your new baby.
So sorry to hear that, Mike!
Take care and please keep in touch.
Well lets look at the bright side, you will feel better and have more energy. If the Humira helps you, this could be the last transfusion for awhile.
Boy how I can relate to this thread. Last week my hcb was 9.7 but at least I was holding my own. Then I began having multiple bloody stools big time! I was losing 1/4 pt of blood each time. 24 hours later I was at 7.9 hgb. They gave me 2 units of blood and after I took 3 dose cups of Pepto Bismo, the bleeding stopped. I see my Hemotologist Thursday (tomorrow) to get another Iron infusion to maybe get me up to the 10.0 or above region. Tuesday my G.I. will scope me again to see where I'm bleeding. If it's the Crohns, then he'll probably put me on Humira.
It's sure hard to remain positive after all this.
Just wondering how you're doing after Friday's blood transfusion. Hope you're doing OK!!
So glad to hear that you're feeling better after your transfusion and Humira injection---let's hope it lasts for awhile!!
Nanners---Glad you brought up the question about iron infusions, as I also wondered about that. I wasn't sure whether or not a person could simply get an iron shot (similar to a B12 shot).
Mike---thanks for asking about me too. Yesterday, I had a bad afternoon & evening; as something I ate gave me lots of intestinal distress. But I'm feeling better this morning. I don't want to hijack your thread, so will do a new post today on "Humira & food sensitivity".
Hope you continue to do well, and I'll follow your thread for future postings from you on how you're doing.
After my 2 unit transfusion, my hgb went from 7.9 to 9.1. So, I went back for an iron infusion (2,000mg). My guess my hgb is now somewhere better than 11.
Now that it has been 4-5 days since the infusion, I'm good to go.