Increasing to once/week dose- what is the good, the bad, and the ugly??

[Adam1971]

I am writing this post because I am about to begin weekly humira shots instead of every other week. This was the course of treatment recommended by my GI. I am not on any other meds for crohn's. I have only been on it for 3 months, and though it was initially quite effective, the flaring that used to be just during the last couple of days before the shot has become more or less constant. The symptoms that are ongoing include pain in the lower right quadrant, joint pain, bloatyness, gas, and some diarhea, but mostly not. I also have had horrible fatigue.

I am wondering how others have experienced this increase in the frequency of humira doses. I am concerned about the risks of drug induced lupus, especially since I already have some of the symptoms (they were there before starting humira, though). I am especially concerned that I will be even more tired. I hope that it helps with the crohn's flare, though. I really would like to hear from anyone who has had this dose doubling. Thank you.

 

[kiny]

Haven't had this, I did used to have remicade. I want to just say that the risks are much lower in people who aren't on combination therapy. The risks of remi / humira are much higher for people who take it together with 6 MP, imuran and almost all of the cases of side effects are coming from people on combo therapy.

 

[Adam1971]

That is really good to know. The flip side you often hear is that combo is more effective in terms of remission achievement and duration of use for the biologicals. Thanks for the info.

 

[Keepingfaith]

Hey! Sorry, just saw your post & have been super busy with birthday party stuff :shifty-t:

Anyways, I don't mind sharing!

I went on Remicade after being in the hospital for a month(last year) to try to control my current flare. After my first dose I noticed some joint aches. I didn't think much of it because I have JRA. Then as I continued with the doses I noticed that my hands/feet were turning purple from poor circulation. Some parts of my body would be red, hot and inflamed while others were blue, cold and clammy. I got the beautiful butterfly rash that still comes to this day. Every time I tried to get up from sitting down, my body forze. I could not move. One side of my face would droop. I could not speak. I could hear perfectly but I could not communicate whatso ever for about 3 minutes. Then my body would slowly gain the ability to move. I went to see my GI about it in December and when I got up to give him a hug he saw me freeze, the droopy face, the blue fingers etc. & he freaked out and I was pulled off Remicade. All this happened within 3 infusions.

A month or so later, in Janruary, I started Humira. I did not feel any relief what so ever until I hit the four month mark. Even then I would only get a few days of relief followed by the debilitating Crohn's pain. My Gi scoped me again in April and my disease spread. It is now in my ileum, whole colon, Rectum, mouth, esophogus and stomach. He bumped up the dose to one shot once a week. Again, only a few days of relief. We were debating up it up to two shots, once a week but that would mean I would be the YOUNGEST person in the USA on that high of a dose. Even the Abott company said that they would not take the risk & offered me to get in a clinical trial at age 18 for a new drug. Well, I'm 16. I can't wait that long. So, after a nasty hospital stay last month, I recently started Cimzia. It is not approved for people under 18 but my doctors wrote a letter to the company stating that it was a 'medical neccesity' so I am currently on that to hopefully get in remission.

Again, all of this is 'rare' and I seem to get the rarest of rare side effects/reactions. I wouldn't change any of my experiances. My Crohn's flare has been going on way too long and I want to keep all of my body parts. Life's full of risks but I'd rather take the risks and actually have a good quality of life one day.

 

[Adam1971]

Thanks, keepingfaith. I am sorry you have had to suffer through so much especially at 16, but I am very thankful for your story/experience. I hope cimzia kicks ass for you(slight pun intended ).

 

[kiny]

That is really good to know. The flip side you often hear is that combo is more effective in terms of remission achievement and duration of use for the biologicals. Thanks for the info.

It is very slightly more effective for remission, but not worth the risk. Most clinics with lots of experience have stepped away from combo therapy ever since they realised that the side effects usually aren't coming from the people on only humira or remi, but from people on combo therapy. Mind you, when someone starts with Remi or Humira it is often given for a few days only just to prevent a reaction, but it's discontinued right after that.

 

[Dunbar]

I was biweekly for 15 months, weekly for 4 months and the last 6 weeks every 10 days. All seems to be going well. The fatigue hasn't changed regardless of the med dose/time, I'm still damn tired all the time. I was hoping the Humira would get me moving like the Pred did but no such luck.

 

[MikeinBklyn]

I went from every two weeks to every ten days. It made a big positive difference for me.

 

[Patricia56]

What lupus symptoms were you having before you started Humira? Have you been assessed for lupus? I ask because Lupus can affect the gut too.

Recent research has shown pretty conclusively that combo therapy is most effective. So you may want to talk with your doc about adding 6-MP or Methotrexate to the Humira in addition to increasing frequency. Once those are on board (6-MP takes about 4months, Methtrexate about 2 months) you could try backing off on the Humira and see how it goes.

It took several months for my son to get a complete response to Humira. I have heard this from other people too. Of course you don't know for sure if it's the Humira or if he would have gone into remission anyway but it seems likely that it was the Humira since he stayed i n remission for almost 4 years even though he completely stopped the Humira after 2 years and went to just Methotrexate.