Is it time to stop Humira?

Here is my problem with this med:

-started Monday,4/23

-By the Weekend I started with severe joint, muscle pain everywhere

-this pain was on and off for almost 3 weeks

-I felt it was the humira, my doc sent me to a rheumatologist b/c I had some joint pain prior to Humira(never this severe though)and he wasn't sold on the fact that it was the med

-The friday before my third dosing (1 shot this time) I started to feel great...all the pain went away...life was great

-two days after my third dosing (1 shot) I had the flu like symptoms which lasted 1 1/2 days...

-stomach feeling ok...doing well

-yesterday I woke up feeling very weak, fatigued, headache, nausea....had mild stomach ache but it was very low and didn't feel like my jpouch or crohn's...it was a nightmare yesteday, felt lightheaded, etc...

-today, still somewhat of a headache..

-4th dosing is this monday

I must add that I had all the lab work done to see if I had a lupus reaction...everything was normal...in fact even my white and sed rate was normal for the first time in a decade! I also saw a rheumatologist who does not feel I have arthritis, but does feel that the initial joint pain may have been my body reacting to the med...again, joint pain is not an issue anymore....could this latest weak, nausea, headache be due to the humira?...I'm due for my next dose monday, shouldn't it already be lessening in my body?...is it normal to always have some sort of reaction after each injection (ie: flu like symptoms)? Does the body finally become adjusted to it?...how long do you have to be on the med for a full therapeutic level? I know, too many questions....it's just frustrating never knowing how you are going to feel and then dealing with side effects from these awful drugs....while it is definitely helping, I'm afraid I may need to stop if the side effects don't level off and its off to remicade....didn't want to do the remicade thing as I'm not comfortable with having to sit for hours...but I will if I have to...thanks for listening....

 

Goldy,

I don't have experience with Humira (considering starting soon), but why take it if it makes you feel worse?  I had an allergic reaction to another med.  After the first month, I told my doc that I didn't feel quite right since I started taking it (had a headache everyday and just felt generally off)...the doc thought it was just my body adjusting, so I brushed it off and waited for my body to acclimate.  about 2 months after I started, the reaction came to a head and I ended up in the hospital for a week and a half.  Normally, I'm good about taking my meds - during the time I was on this particular med I remember putting off my morning meds as long as possible.  It was as if my body/subconscious knew something was wrong long before my conscious mind or my docs.  I've since learned to listen for these clues.  I'm not a doc and can't say whether you're having a reaction to Humira, just thought i'd share my expereince with you for what it's worth.

Melissa

It is a very difficult decision, always, to decide it's time to stop a med that might be helping. I am sorry for this situation! I have wondered if I've quit some meds too soon and it lingers with me still. Of course, those meds that were obviously impacting my well-being (AZA, 6-MP) it was a pretty easy choice because I was vomiting non-stop.

Is there a chance that some of your symptoms might go away as your body adjusts to the Humira? It sounds like it's helping your Crohn's. Good luck! I hope this next chance/shot allows you to feel alright!

SR5599-I'm hoping that my body needs to adjust to this med...again, the first few weeks I had severe joint pain and now that has gone away...so I'm hoping with each shot it gets better

Kimberlayn-I read that humira could cause hair loss. When I was 22 I was placed on prednisone and lost a great deal of weight due to UC, as a result I lost an enormous amount of hair...I had 3times the amount of hair at that time so most people didn't notice....I however did and it was devastating to me....it stopped however, I didn't go bald and I moved on...I have to say that now, if my hair starts to fall out as a result of the humira, I'm ok with it as long as the medication works...at this point I would willingly go bald and have my jpouch removed if I could just feel well again...everything is such a trade off with this disease, isn't it? I've read where some people take supplements (biotin, folic acid) to help with the hair loss...sometimes it could me an iron deficiency...when I was losing hair I tried rogaine but with that you are stuck using it forever and it really didn't work...I hope your hair loss slows down, it is devastating to a woman to lose her hair...I hope you continue to be well on humira...