I used to take Humira once a week and then it stopped working. It had worked so wonderfully well for me in the past that I asked my Rheumatologist if I could take it more frequently. She told me that it isn’t indicated for PsA for doses more frequent than every 2 weeks. I checked this info out because I have a couple of my own patients who take Humira weekly for what they say is PsA. The sites I have looked at say Humira is only approved for RA for weekly doses. I am confused!
I am a little frustrated with how long it is taking me to get relief from remicade. I am wondering if anyone in the US takes Humira once a week. If you do, how on earth did you get it prescribed and approved by insurance? Inquiring minds want to know!
I’d like to hear from ANYONE, even if you don’t live in the States. I’m interested to hear how your country does it too.
I have taken two biologics at "off label" dosages.
Simponi is to be injected once a month. I needed it every 3 weeks. My doc wrote a prescription for that and it was filled.
I am currently taking Enbrel once every 4 days (and can go to once every 3 days if I need it), vs. once a week. My doc wrote a prescription for that and it was filled.
My rheumy explained that drug companies have to pick an average dosage that helps most people and causes the least harm to most people. Some people will need less, and some more, depending on how they metabolize the medication.
That's very frustrating your doc won't write for a more frequent Humira dose, esp. when it worked well for you.
Are you also taking MTX grumpy? The new protocols call for it with Humira it dramatically increases the efficacey. Its pretty much required here whith Remicade for anti body prevention.
Here is where we differ form national health or universal health: The insurance companies here can "mangage" care but they can not prescribe it or dicate it. Individual policy's vary widley. Drug coverage is usually seperate. They can pay for drugs on a couple of different bases until your "stop loss" (max out of pocket expenses) is met. They give a STRONG economic incentive to try a less expensive or generic drug But if your Doc says do it they can't say no. generally if he writes a letter saying medical necessity the lower priced drugs are out the window (I went immediatly to the Bios and bypassed the DMARDS (initially) Lots of folks take Humira weekly. I believe that weekly is also possible with active P under the manufacturers suggested use. Surley you have some somewhere nail perhaps????
I have to pay a doubled copay because of the increased medication (I'm getting double the amount, after all). Most medications have a copay card that GREATLY reduces the copay cost. I got one for Enbrel, and I know some others have them.
GrumpyCat said:
Marietta, Did your insurance pick up the copay? Or did you have to pay out of pocket for the additional medication? I would love to try Humira again.
My opinion would be that it will be hard to convince your insurance company to pay for double doses. If there was no other option available then maybe. But w/ other possible treatments out there, it's unlikely they will budge. However, my Remicade treatments were WAY more expensive then my Hurima shots, so in the end it could be a wash for your insurance, or close to it. But as I understand it from one of your previous post, you have already started Remicade correct? If so, you might as well see if it's gonna work. Plus, not to be an alarmist here, but these medications can certainly be dangerous. So I'm "assuming" that taking a double dose would greatly increase the risk of serious side effects.
Thanks for that. I miswrote. I meant to ask if they covered the drug not the copay. My brain is a little off today. Even so, you answered my question.
I am all for taking it again even IF I had to pay the whole copay with no discount card. I haven’t given up on remicade completely, but I’d like to have another plan waiting in the wings just in case. I was NOT this bad when I was taking it. What I mean is I did have a nasty flare, but was able to get over it in a few weeks and feel pretty well after. I also don’t think I got this bad until I discontinued the Humira.
I am seeing the new Rheum next week so he should be able to help me come up with a plan.
Marietta said:
I have to pay a doubled copay because of the increased medication (I’m getting double the amount, after all). Most medications have a copay card that GREATLY reduces the copay cost. I got one for Enbrel, and I know some others have them.
GrumpyCat said:
Marietta, Did your insurance pick up the copay? Or did you have to pay out of pocket for the additional medication? I would love to try Humira again.
I am QUITE certain that I can find a spot of psoriasis somewhere. Actually, I do still have a little so that works for me!
I have not been prescribed mtx at this point. It was on my list of questions that I wanted to ask at my last appointment, but that was the really bad appointment so I left with all of my awesomely thought out questions unanswered. I am at the try anything stage. I want to feel better, so I will be bringing it up at the appt with the new Rheum. I think my appt is next week.
Can you post a link for me relating to the mtx increasing the efficacy of remicade and Humira? I had no idea about that, and i want more info before i see the doc. Also, I have read here that some people prefer to inject the mtx over oral due to pretty severe gastric upset. Is there any truth to that in your experience? I don’t mind shots. Not a fan of vomiting though.
Thanks!
tntlamb said:
Are you also taking MTX grumpy? The new protocols call for it with Humira it dramatically increases the efficacey. Its pretty much required here whith Remicade for anti body prevention.
Here is where we differ form national health or universal health: The insurance companies here can "mangage" care but they can not prescribe it or dicate it. Individual policy's vary widley. Drug coverage is usually seperate. They can pay for drugs on a couple of different bases until your "stop loss" (max out of pocket expenses) is met. They give a STRONG economic incentive to try a less expensive or generic drug But if your Doc says do it they can't say no. generally if he writes a letter saying medical necessity the lower priced drugs are out the window (I went immediatly to the Bios and bypassed the DMARDS (initially) Lots of folks take Humira weekly. I believe that weekly is also possible with active P under the manufacturers suggested use. Surley you have some somewhere nail perhaps????
Re: Oh brother, really? « Result #30 on Oct 24, 2012, 6:04pm »
2 40mg Humira shots a month is the rheumatological standard, unless you have RA and either can't take MTX or it does not work for you. If you have enough P coverage, however, your dermo can usually get you approved for 4 40mg shots per month. When dermos use A-TNF's, they can usually prescribe up to double the rheumatological dosage. It's part of the insurance game you will learn as you cycle thru the meds. It's a PITA, but you really need to have a dermo in your back pocket; provided you have P, many of them will work with you.
Remicade is the oldest A-TNF Biologic. The only real hassle of it is the time it takes for the infusion, other than that it has the same one time stick pain as any injection.
I was thinking the same thing. Remicade is quite pricey so maybe I could get the Humira 4 times a month. I have started the remicade. I just was wondering about this today and couldn’t understand why Humira could be dosed to other people like that and not me? Especially since it was definitely working a lot better than the remicade is at this point.
I’m a little worried too. I had my 4th infusion Monday. I also got 125mg of IV solumedrol, so I felt great. I had my fingers crossed that it was the remicade. The steroids wore off yesterday evening, and today I am worse than I was before the infusion. sigh I guess I’m starting to freak out a little by wondering if this is as good as its going to get. I want to have a back-up plan ready to roll out to my rheumatologist.
I know this may sound reckless, but I’m not very concerned with side effects at this time. I’d rather give up a few years to enjoy the ones I have with my family, instead of living longer and their memories of me are how I missed out on everything!
Chris said:
My opinion would be that it will be hard to convince your insurance company to pay for double doses. If there was no other option available then maybe. But w/ other possible treatments out there, it’s unlikely they will budge. However, my Remicade treatments were WAY more expensive then my Hurima shots, so in the end it could be a wash for your insurance, or close to it. But as I understand it from one of your previous post, you have already started Remicade correct? If so, you might as well see if it’s gonna work. Plus, not to be an alarmist here, but these medications can certainly be dangerous. So I’m “assuming” that taking a double dose would greatly increase the risk of serious side effects.
I would still wonder if the Remicade was working or not. Anytime I have had any steroids I have such a flair after I am done them I can not tell if the bios are working or not. And for me it lasts weeks. I do not do steroids any more, along with the long term damage I can't stand the even bigger flare coming off of them. Just a thought Grumpy.
I wholeheartedly agree with you. I had such a bad time when I discontinued oral steroids. I didn’t know that it was possible to feel THAT bad. I guess I did not think that one infusion of steroids would cause the same effect. I had discussed this possibility with a doc at another time, and he didn’t think it would happen because the IV steroids are out of the system so quickly. I am kicking myself for letting them administer the steroids to me. (have you ever tried kicking yourself during a flare? Not pretty). I guess it was a good lesson though. Now I know, no steroids whether they are oral injectable or IV.
I am giving it one more infusion. I will be out of disability in 9 more weeks, so something has to give! I’m not looking for perfection. My goal is NSAIDs plus an as needed opiate that I can actually not need to take every day. That to me is where I could be happiest and continue to work.
michael in vermont said:
I would still wonder if the Remicade was working or not. Anytime I have had any steroids I have such a flair after I am done them I can not tell if the bios are working or not. And for me it lasts weeks. I do not do steroids any more, along with the long term damage I can't stand the even bigger flare coming off of them. Just a thought Grumpy.
Grumpy,
Some do find that injectable mtx lessens most if not all gastric issues.
GrumpyCat said:
I am QUITE certain that I can find a spot of psoriasis somewhere. Actually, I do still have a little so that works for me!
I have not been prescribed mtx at this point. It was on my list of questions that I wanted to ask at my last appointment, but that was the really bad appointment so I left with all of my awesomely thought out questions unanswered. I am at the try anything stage. I want to feel better, so I will be bringing it up at the appt with the new Rheum. I think my appt is next week.
Can you post a link for me relating to the mtx increasing the efficacy of remicade and Humira? I had no idea about that, and i want more info before i see the doc. Also, I have read here that some people prefer to inject the mtx over oral due to pretty severe gastric upset. Is there any truth to that in your experience? I don’t mind shots. Not a fan of vomiting though.
Thanks!
tntlamb said:
Are you also taking MTX grumpy? The new protocols call for it with Humira it dramatically increases the efficacey. Its pretty much required here whith Remicade for anti body prevention.
Here is where we differ form national health or universal health: The insurance companies here can “mangage” care but they can not prescribe it or dicate it. Individual policy’s vary widley. Drug coverage is usually seperate. They can pay for drugs on a couple of different bases until your “stop loss” (max out of pocket expenses) is met. They give a STRONG economic incentive to try a less expensive or generic drug But if your Doc says do it they can’t say no. generally if he writes a letter saying medical necessity the lower priced drugs are out the window (I went immediatly to the Bios and bypassed the DMARDS (initially) Lots of folks take Humira weekly. I believe that weekly is also possible with active P under the manufacturers suggested use. Surley you have some somewhere nail perhaps???
Hi Grumpy, I am on weekly shots of Humira, medrol weekly, and mtx weekly. My first medication was medrol. I started Humira bi-weekly, bumped up to weekly, then added the mtx. I feel better not 100 % but I can walk without and do my daily routine with little trouble. I do think that I would like some more relief but if this is my new normal, I'll take it for now as long as I don't get worse.
Even so, you answered my question.![[Quote]](http://images.proboards.com/new/buttons/quote.png "[Quote]"){kind=small}