I've been on Humira 6 weeks and feel worse and also had to increase my steroid to 30mg/day. Methotrexate made me too sick so I can't take it.
Any advice? Do you think it isn't going to work for me? Other options to explore?
thanks for your thoughts and ideas,
Frances
I would get n tough with your Rheumy. I would think it would be doing something by now if it is the right drug for you. Good luck.
I've been on enbrel alone and it works for me. I hear enbrel works better than humira for most. I am totally against the longterm prednisone!!!!!!!!!! So, find something and get off it for sure!
I know some rheumys like patients to stay on a med for a full 3 months to see if it has any effect, but for me it is usually pretty dramatic when a drug doesn't work. I go from feeling bad to feeling like I am taking nothing and going into full fledged out of control flare mode. If you have to increase your steroids, and it has been 6 weeks, I would definitely get tough with your rheumy and demand to try something else (and try to reduce your steroids...it's really tough to cut down once your body gets used to a high dose for awhile).
My rheumy gave enbrel 3 months to work after that he said the next step was infusions of remacaide. Give it time and TRY to be patient. I know it is hard when you are in pain. I am not pain free to compared to where I was it is better. Best of luck to you. Keep us posted on your progress.
Hi
Same thing happened to me…I thought it was not working… Just give it at least three months… Now I feeling pretty good except for an occasional day here and there depending on the weather. It does make me feel tired and weak the next day after I take it… So I usually take it Friday night.
Hope this helps:-)
Hi i was sick on methetraxate at 1st but after about 7 weeks i was ok. I also go on high dose steroids to help when i have a bad flare up, I also take them for a lung problem i have, which has now caused thinning of the skin and brusing so be very careful. Good luck hope you get the right medication that suits you.
Hi Frances,
I had the same experience with methotrexate then humira for three months only to be nauseous, jittery and dizzy the steroid was a temporary fix. Although mtx worked for me for a long time then one day just quit working... go figure. I am like you waiting for the next concoction to mesh with my body chemistry. I hope for you you find some relief from PSA and the side affects as well. I hear good things from people on enbrel and remicade. I know they say give it time to work but it seems the side affects only increase during that time. Keep us posted. Hang in there.
Thanks everyone for your helpful responses. I'm making an appt at Georgetown Rhuematology and John Hopkins.
With only three injections of Humira, you don't even have a loading dose on board yet. Having to increase your predi is a pretty good sign that your body IS responding. With any of the biologics its pretty common to have to a predi course at 4 -6 weeks. I can understand your impatience but you need to understand there is NONE of these drugs that are "expected" to work in less than 12 weeks and that's an "arithmetic mean" make that into a continuous distribution function nearly 40% will take longer (of course 40% take less too)
Changing docs may be appropriate, BUT rheumatolgy is a very subjective field. YOU will be starting over everytime you switch. make sure you have a good reason. An academic center generally does ONLY evidence based medicine in the course of training physicians. You are likley to get further with a good ol boy private practice, but it will take longer thna six weeks. I assume you have had this discussion with your doc right? If not you should. The LAST thing you want is another group to think you are Doctor shopping. You want your old docs blessings and help to move on. Rheumatology is a long term relationship. No group will give you their best, if they think you'll drop them without good reason. They ALL have waiting lists (if they don't be VERY careful.)
Thanks tntlalmb responding to my question - it's nice to know that my does work at 12 weeks. I agree with you, not a good idea to carelessly and continuously switch drs.. . I was already looking for a new doc because he isn't a preferred provider for carefirst and is costing me too much money. Great advice not to let Rhuemys know I'm shopping around - will definitely head that advice.
thanks again for your response !
Asking for a referral to a preferred provider (with regrets you have to move because he is such a great doc bla hblah - even if he's not) can pay off big. The new guy will show off a bit, and the old guy will encourage him....
That's perfect !
Have you only had three shots of Humira in three months?reason I am asking is that I assumed you were taking it it weekly for the last three months. That’s what I was prescribed. With an initial 2 shots on the first week. Maybe you can talk to your doctor about increasing the dose to at least every two weeks. It might make a huge difference.
Hi Aline,
Thanks for your reply. I've been taking humira shots every other week for 6 weeks - my 8th week will be this Thursday. I like your idea about getting 2 shots 2 weeks apart - once. I'll ask my doc for my options. I thought there was only one script for it once every 2 weeks.
thanks so much
My case was pretty bad so my doctor has put me on a weekly shot. The first time I took two. But the weekly dose has made a huge difference in the way I feel. Sometimes it also depends on your insurance and what they approve. I have great insurance so thankfully with the request of my doctor it was no problem.
Humira is all I take with occasional ibuprofen on bad days… And I would not be afraid of shopping for doctors… You need to feel comfortable to tell your doctor what you need and what works and what does not work…you are the costumer:-) I went through two before I found mine … They all have different ways at looking at the disease find the one that works for YOU . I was not afraid of letting the other doctors know it was not working out.
I have been on mtx since August and just took my 7th shot of Humira. I did not notice any help in the first few months of taking both and in fact had a major flare that I took prednisone for. However, I just had my 7th shot of Humira and I feel great The flexibility in my hands is amazing. Now it hasn't helped everything but I am hopeful the rest of my body will follow suit! I suggest you give it a little time to get into your system and start working. It may not be for you, what I understand about this disease is what works for some will not work for others and you just have to keep trying until you find the combo that will work the best for you. Good luck to you and keep us posted!
Good morning Frances,
Humari didn't work for me and I ended up in the hospital after laying at home waiting for it to work. I was also on metho (5 a week) during that time. They ended up putting me on Remicade, which is working alittle, they tell me I have to wait 6 months to see if it will work fully, its been 3 and seems like years! I am also taking 40 mg of predisone a day and my metho has been upped to 8 pills a week. Did you try Enbrel? I was on it for 4 1/2 years and it worked great until last Feb when my body became immuned to it. Right now I feel like I am doomed for life because nothing is working and I am so tired of people telling me things like "Well Aleve works for my arthritis, did you try that?" Grrrrrr, really you think I haven't tried everything?? I really get tired of people comparing PsA with arthritis. One day I was in such a "smart azz" mood (what can I say I'm from Pittsburgh, ;), and I just looked at them and said, No I haven't do you think that is stronger than Chemo, I wonder why my doctor didn't have me try that first. This was a day before we got the swelling under control, my hands were at least twice the size they were suppose to be and I couldn't stand up straight. I love these people that think things like Aleve are going to cure this nasty disease, but have no clue about it. They just hear arthriitis and blow it off as something minor. Unfortunately, I am way pass minor and sometimes it is hard to bite my tongue when someone tries to tell me what I should do and look at me like I am an idiot when I say that does not help me.
I don't post much here, but I do read everyday and it really helps to know that I am not alone!
Have a great day everyone!
Thanks for taking the time to respond Tammy Sue. I haven't tried Enbrel yet, but I believe, I need to wait the full 3 months on Humira to see if it will work.
Yes you do have to wait and that is the aweful part! The only reason I didn't have to wait is because after 5 weeks, I could barely move. I'm not even sure how I made it to the car. It took 4 people to get me into the bed. I was so bad that as the nurse was wheeling me to the room, they were calling the doc to meet us there to get me pain meds. Do not be goofy like me and wait that long! I do know a couple of people on Humaria that it is helping!