I started Humira 4 months ago and went for my follow up recently.
After starting the Humira, I had my first "real" psoriasis outbreak and after 4 months of treatment, I couldn't really report significant improvement.
My doc gave me the choice to stay on Humira until the full 6 months were complete, or go ahead and switch to Embrel. I opted to switch, as I didn't think the Humira had made that much of a difference and the outbreak was concerning.
But after I stopped the Humira I realized it must have been helping after all. Now I'm almost back to where I started at diagnosis as far as the number of joints hurting.
I feel extremely foolish. How did I not realize it was helping some? I guess I got too focused on the joints that were still hurting, instead of focusing on the joints that were no longer hurting.
Advice or encouragement? Anyone else been down this road?...
Bummer, Maemae, I’m sorry it has gone like this for you. Mistake? Because you got psoriasis when you took Humira? I don’t think so. I’d have switched to another bio as well if that had happened to me. (Especially if I didn’t think I was getting the greatest response.)
Myself, I’m on my first bio (Enbrel) and I’ve wondered what’s going to happen if/when I have to switch. There are several people here with experience with switches – Marietta, MichaelinVermont, dandlyons, amongst others – maybe they can help here.
So here’s what I’m wondering. Humira and Enbrel act on slightly different parts of the immune system. When you stop one and start another, do you have to wait the usual couple of months to get the benefits of the new drug? I don’t know the answer, but I’m sure someone here does.
I’m keeping my fingers crossed that Enbrel will kick in fast and strong for you. Positive thoughts heading your way!
Hi Maemae, I made the same mistake with Humira. I didn't have any psoriasis problems on it but I didn't think it was working at the end of my 12 week trial. I was soooooooooo focused on my still painful shoulders that I didn't realise my poor knees (those I hadn't been able to squat with or kneel on for over a year) had got loads better.
Here in the UK you only get 12 weeks to show improvement before funding for the biologic is withdrawn so I've spent the last six months fighting for a second biologic and I'm now due to start Simponi. First dose should be delivered Thursday of this week but I plan to inject next Saturday when my husband is here just in case I have any kind of weird reaction.
Have learnt my lesson so going to make a note of all my stiff, tender and painful joints and tendons this week so that I can check them off for improvement before I deliver my verdict to the rheumy when I go back in June.
Good luck for your change to Enbrel, I hope it works well and quickly for you.
You are always such an encouragement thank you. You know I didn't even think to ASK if it would take 3 months to kick in, all I made sure of was how much time to wait in between switching so I didn't overload my body. I'll call my rheumie Monday!
Seenie said:
Bummer, Maemae, I'm sorry it has gone like this for you. Mistake? Because you got psoriasis when you took Humira? I don't think so. I'd have switched to another bio as well if that had happened to me. (Especially if I didn't think I was getting the greatest response.)
Myself, I'm on my first bio (Enbrel) and I've wondered what's going to happen if/when I have to switch. There are several people here with experience with switches -- Marietta, MichaelinVermont, dandlyons, amongst others -- maybe they can help here.
So here's what I'm wondering. Humira and Enbrel act on slightly different parts of the immune system. When you stop one and start another, do you have to wait the usual couple of months to get the benefits of the new drug? I don't know the answer, but I'm sure someone here does.
I'm keeping my fingers crossed that Enbrel will kick in fast and strong for you. Positive thoughts heading your way!
When I had to stop Humira boy did I feel it! Apparently it is pretty common to have a flare (joint pain and morning stiffness) when you stop or pause. It really reminded me of why I'd been taking it to begin with.
I hope that you have a productive chat with your Rheumatologist, and that you find relief soon
I have changed biologics. I started with enbrel. After a 12 week assessment, I was switched to Humira. After another 12 weeks I tried remicade. Remicade offered me absolutely no relief. It was a stark contrast. The best of the three had been Humira.Like you, I realized that Humira was working to a degree. So I went back to Humira. After a while, I was switched to weekly dosing of Humira and that was the first time I felt I had tangible benefits.
The way it was explained to me is that all of these medications are TNF-alpha inhibitors, but each drug is composed of a unique molecule. What may work for one person won't work for another. Several keys may fit the lock but which one turns the tumblers.
My rheumy is now recommending I try Cimzia. I am currently awaiting the pre-authorization. One study I read said that the majority of patients find success with the first biologic, yet some of us have to cycle through the options to find what works best. As you are already aware, there are tradeoffs to consider. You made a very reasonable decision based upon your situation. You should not blame yourself for the new drug not working as well as you hoped. It is a setback, but you have other options. I completely understand how you are feeling. But please do not blame yourself. It was not a mistake, it was an experiment and you have learned something from it. When I first arrived at boot camp, my drill Sgt said the following, "Your recruiter promised you lots of experience ... well let me tell you the military definition of experience...experience is what you get when you don't get what you want" He went on to assure me that he would make sure I got plenty of experience. You have gained some "experience". Take what you have learned and move forward. To borrow a phrase from Maya Angelo "we do the best we can, and when we know better, we do better". Discuss your other options with your doctor. Good luck ;)
THANK YOU SOOOOO MUCH!!!!!!!!!!!! What an inspiration!!! dandlyons said:
Hi Maemae,
I have changed biologics. I started with enbrel. After a 12 week assessment, I was switched to Humira. After another 12 weeks I tried remicade. Remicade offered me absolutely no relief. It was a stark contrast. The best of the three had been Humira.Like you, I realized that Humira was working to a degree. So I went back to Humira. After a while, I was switched to weekly dosing of Humira and that was the first time I felt I had tangible benefits.
The way it was explained to me is that all of these medications are TNF-alpha inhibitors, but each drug is composed of a unique molecule. What may work for one person won't work for another. Several keys may fit the lock but which one turns the tumblers.
My rheumy is now recommending I try Cimzia. I am currently awaiting the pre-authorization. One study I read said that the majority of patients find success with the first biologic, yet some of us have to cycle through the options to find what works best. As you are already aware, there are tradeoffs to consider. You made a very reasonable decision based upon your situation. You should not blame yourself for the new drug not working as well as you hoped. It is a setback, but you have other options. I completely understand how you are feeling. But please do not blame yourself. It was not a mistake, it was an experiment and you have learned something from it. When I first arrived at boot camp, my drill Sgt said the following, "Your recruiter promised you lots of experience ... well let me tell you the military definition of experience...experience is what you get when you don't get what you want" He went on to assure me that he would make sure I got plenty of experience. You have gained some "experience". Take what you have learned and move forward. To borrow a phrase from Maya Angelo "we do the best we can, and when we know better, we do better". Discuss your other options with your doctor. Good luck ;)