Humira stopped working

** Originally posted by JeffW **

I started on Humira for my psoriasis in Nov. 2009. Since then I've had to stop twice due to getting sick -- a sinus infection the first time, and a respiratory infection (probably mycoplasma -- it's what my wife had) the second time. Since the second stoppage (in April), my psoriasis has gotten steadily worse. Is this a common problem to have if you stop and restart Humira?

I do see my dermatologist on Friday. And I am using various topicals -- I'm getting the best results right now from Protopic. The Clobetasol just seems to makes things worse. The Fluocinonide helps sometimes, but it doesn't help within about 2 days it seems to best to switch to Protopic.

The nurse practitioner (she works with the dermatologist) really got after me to get 20 to 25 minutes of sun on my problem areas -- that might be helping, but I'm not certain yet. I am starting to tan a bit though :).

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** Originally posted by TaraFIU **

Aw... sorry that Humira is not working for you anymore. Time for Stelera???

I don't have specific advice for you as I just took my first 2 shots of Humira 10 minutes ago, but I had a similar experience with enbrel.
http://talkpsoriasis.org/showthread.php?33256-Enbrel-Rebound-Effect&highlig ht=

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** Originally posted by JeffW **

I'd hoped to get more than 6 months or so out of Humira, esp. since I've got 5 pens right now (my insurance has me get 6 pens at a time).

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** Originally posted by TaraFIU **

Give it some time. Hopefully you'll see better results within the next two doses. Keep using the sunlight too (now that it's summer :))

Other things I find helpful:
-salt baths
-eucerin creame in little white tub
-neutrogena TGel extra strength

I'm currently experimenting with corn oil wrapped in saran wrap overnight. My aunt who is an RN and lifelong p sufferer has acheived years of clearing with it. I figure that I have same genes as her and will give her "treatment" a shot. Also, it can take weeks-months for Humira to work, so I am trying this for some clearing. I'm not sure if it is helping yet. It definately removes scale and redness temporarily.

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** Originally posted by JeffW **

Managed to sunburn myself a bit yesterday, so I'm going to have to be careful about any sun now for a day or two. The weather probably isn't going to cooperate anyway today.

When I spoke with the nurse, she mentioned the possibility of increasing the Humira dose, or of switching to something else, probably Stelara.

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** Originally posted by JeffW **

And I should have already said -- good luck with Humira! It did work very well for me at first, and it was so much better than being on methotrexate.

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** Originally posted by TaraFIU **

Thanks. I'm hopeful that Humira will work for me. Enbrel kept me about 75% clear until it started to fail... hopefully Humira will get me 100% clear.

I hope that the Humira works for you. Increasing the dose may be helpful. When I was on enbrel and switched from the loading dose to the maintenance dose, I flared. My derm was able to get my insurance to continue to cover the 2x per week dose. After returning to the two times a week dose, it started working again. Perhpas you just need a Humira boost.

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** Originally posted by TheOne1313 **

I'll share my experience about Humira.

I started Humira maybe 3-4 years ago. I was pretty much covered (Had a bad flareup after Raptiva). After the first shot, I was clear. Most amazing thing ever.

One day at the doctors they noticed I had elevated liver enzyme levels and as a precaution, they took me off it. The psoriasis to my amazement didn't come back. Months past. Still was clear. One day walking to my car from work, I fell and cut my leg. Now, I can't be sure that was the reason but the psoriasis came back at that time. This was still at a time I was trying to get sorted out with my liver enzymes.

Finally I was able to go back onto Humira. It didn't work as quickly as it once did. My advice to anyone who is currently on Humira, don't switch or stop treatment unless you absolutely have to. The good news is that even tho it didn't work as quickly as it did before, it still eventually worked. It took I'd say about 3 months (as opposed to one shot the first time).

Then last year, I had a lapse in taking it again. There was a hold up between the derm office and the insurance company and I had a bad flare up. Yet again, I eventually got back on it. It worked, but took even LONGER then the last time I went off it.

So I have seen where if you go off it, it doesn't work as quickly when you go back on.

I also noticed something else, even the first time I was on it I was convinced that Humira worked but I still had some spots that NEVER went away. No matter what I did. Most of these were areas on the leg which not surprisingly other people have also commented about struggling to clear from those stops. I started to wonder if Humira was simply "keeping it under control"..........IOW after the sudden spark of clearance, I really had no clearance after that. So the Humira IMO was keeping me from getting more spots but not doing anything for the few remaining spots I had. That was ok considering I had such few spots.

But now after several years, I have actually had a flare up while ON humira. I'm wondering if now its at a point where it has totally lost effectiveness. I had a stressful period and thats probably the reason for the flare up. So I think I'm at a point where Humira has stopped completely. I'm going to take a few more shots and then make a decision (maybe Sterlera).

Sorry for the long post, but to answer your question I do think it wears down when u go on and off it

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** Originally posted by TaraFIU **

TheOne, your experience sounds so much like my enbrel experience. I wish you luck in whatever treatment you chose.

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** Originally posted by TheOne1313 **

Thanks.

Hopefully Humira gives you as much relief as it did me the past few years.

It is kinda bad. I mean even when you clear, you always know in the back of your mind that it's not really a cure and there's always this possibility it comes back but after being mostly clear for years, it's horrible when it actually comes back.

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** Originally posted by psoriasisgenes **

I'll share my experience about Humira.

I started Humira maybe 3-4 years ago. I was pretty much covered (Had a bad flareup after Raptiva). After the first shot, I was clear. Most amazing thing ever.

One day at the doctors they noticed I had elevated liver enzyme levels and as a precaution, they took me off it. The psoriasis to my amazement didn't come back. Months past. Still was clear. One day walking to my car from work, I fell and cut my leg. Now, I can't be sure that was the reason but the psoriasis came back at that time. This was still at a time I was trying to get sorted out with my liver enzymes.

Finally I was able to go back onto Humira. It didn't work as quickly as it once did. My advice to anyone who is currently on Humira, don't switch or stop treatment unless you absolutely have to. The good news is that even tho it didn't work as quickly as it did before, it still eventually worked. It took I'd say about 3 months (as opposed to one shot the first time).

Then last year, I had a lapse in taking it again. There was a hold up between the derm office and the insurance company and I had a bad flare up. Yet again, I eventually got back on it. It worked, but took even LONGER then the last time I went off it.

So I have seen where if you go off it, it doesn't work as quickly when you go back on.

I also noticed something else, even the first time I was on it I was convinced that Humira worked but I still had some spots that NEVER went away. No matter what I did. Most of these were areas on the leg which not surprisingly other people have also commented about struggling to clear from those stops. I started to wonder if Humira was simply "keeping it under control"..........IOW after the sudden spark of clearance, I really had no clearance after that. So the Humira IMO was keeping me from getting more spots but not doing anything for the few remaining spots I had. That was ok considering I had such few spots.

But now after several years, I have actually had a flare up while ON humira. I'm wondering if now its at a point where it has totally lost effectiveness. I had a stressful period and thats probably the reason for the flare up. So I think I'm at a point where Humira has stopped completely. I'm going to take a few more shots and then make a decision (maybe Sterlera).

Sorry for the long post, but to answer your question I do think it wears down when u go on and off it

I have taken 3 HUMIRA shots and my clearing has been excellent. Now very little scaling and flaking. Plaques are thin and soft, almost invisible in most places. Still not 100% cleared but very good. I also noticed the clearing almost immediately but/and am hope for more clearing still. Agree that it is pretty amazing. I do have white spots where plaques were on my pigmented skin (two of which are unsightly due to being on my deeply tanned forehead and neck).

Don't understand (mechanistically) what could cause the phenomenon of efficacy wearing down from going on and off that you describe. It has been my understanding (actually my supposition) that ones own antibody response against the biologics over time could limit there effectiveness. I don't see that on-off would exacerbate this.

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** Originally posted by TheOne1313 **

I have taken 3 HUMIRA shots and my clearing has been excellent. Now very little scaling and flaking. Plaques are thin and soft, almost invisible in most places. Still not 100% cleared but very good. I also noticed the clearing almost immediately but/and am hope for more clearing still. Agree that it is pretty amazing. I do have white spots where plaques were on my pigmented skin (two of which are unsightly due to being on my deeply tanned forehead and neck).

Don't understand (mechanistically) what could cause the phenomenon of efficacy wearing down from going on and off that you describe. It has been my understanding (actually my supposition) that ones own antibody response against the biologics over time could limit there effectiveness. I don't see that on-off would exacerbate this.

It's possible that the on-off wasn't what limited it. I did feel over time that it was just keeping it under control.......so its quite possible my body has produced an antibody response thus limiting the effectiveness of it. Because just now I haven't gone off it at all and its starting back up. I dont know honestly.

I'm actually noticing something odd about this flare up. I'm not really getting plaques. I'm getting rings. I use topical ointment so maybe thats whats causing it but it looks really weird. I'm getting spots with complete white in the middle (like the middle of the plaques are healed but the other portion still hasnt)........again I dont know if thats attributed to lack of effectiveness or what. Usually when I heal, that happens. But eventually the outer part heals too....this hasnt. I should take a pic cause I wonder if anyone has had this happen. Its like im half healing lol

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** Originally posted by psoriasisgenes **

Don't understand (mechanistically) what could cause the phenomenon of efficacy wearing down from going on and off that you describe. It has been my understanding (actually my supposition) that ones own antibody response against the biologics over time could limit there effectiveness. I don't see that on-off would exacerbate this.

I should say "I don't see how on-off would exacerbate this, but I am not a clinican and if this is what happens then this is what happens (and one should try not to go on and off). I believe I have heard of this before and others' recommendation that one stay on Humira or other biologic (can't remember exactly). I don't want my comments to seem to be disputing what you and others have observed clinically"

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** Originally posted by TaraFIU **

I experienced flares when going on/off enbrel (that is what my "enbrel rebound effect" thread was about).

However, the more I think about it... whenever I went off enbrel, it was because I was sick. So it is hard to tease apart the effects of having an infection and taking an enbrel break on my p.

When I first went on enbrel, I was close to 100% clear within 6 weeks. Then I got sick and had to off enbrel for 2 weeks. I flared and when I resumed enbrel, I only acheived about 75% clear. I stayed on enbrel for close to two years and maintained about 75% clearing (I never again saw that same level of initial clearing).

It felt to me like enbrel never worked quite as well after I went off it. I asked my derm and he did not agree. He said it is common for patients to first experience widspread clearing and then slide back a bit. I'm not sure...

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** Originally posted by JeffW **

I appreciate everyone's input. I think that my legs are improving a bit with the sunlight, but it rained yesterday afternoon, so I wasn't to sun myself. That right knee (where the P showed up first) still looks pretty rugged. I was outside in the rain -- repairing our mailbox -- someone tried to pull it off the post. :(

I see the derm this afternoon and we'll see where we go from there.

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** Originally posted by JeffW **

We're starting the paperwork for approval for Stelara, but since I've got 10 weeks worth of Humira left, we're probably going to give that another 4 to 6 weeks and see what happens. Just got in some getting some sun on my legs -- I missed two days of that due to bad weather here.

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** Originally posted by LilBudyWizer **

The reality of this disease for me is an endless cycle of flaring and clearing on an annual basis for 37 years. The severity of the flare ups vary year to year, but over the course of a year I swing from nearly clear to 30%+ coverage with some years as high as 50% during the worst flare ups. I'm on a chemo drug that clears it. Rather than three flare ups in three years I've had one. I figure that one was the really bad one that happens every several years.

Personally, I would suggest you consider the possibility this is just a really bad flare exceeding what the drug can surpress. Once it passes the drug will be as effective as it ever was. Coming off may well trigger particularly bad flare ups as the immune system runs wild free of constraints imposed by the drug. So going back on may not do much of anything until the flare up runs it's course.

You might well find the flare up passes if you do nothing at all. What would that prove? The flare up has passed. You can panic and jump drugs at every flare up and convince yourself that the flare up simply passing on it's own is proof this drug is more effective than the last while, in fact, it does less than the last one. Personally, if you really want to learn from the a drug then switch between flare ups. Hit a steady state that lasts for three months or more and then switch.

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** Originally posted by JeffW **

@LiBudyWizer, you may be very right about what's going on here. I've flared in past summers (and my initial flare was in the summer), and I was also in a stressful situation at work for a couple of weeks, so the combination may have just been too much for Humira to handle in the short term. Adding sunlight to the treatment schedule seems to be helping.

I haven't been all that keen on going to Stelara because it seems kind of like the medication of last resort -- if it doesn't work, or stops working, what then? Plus Humira's been around longer, and any problems that it might cause are better understood.

The situation that I was getting into was that I could not sleep due to the itching -- and that just adds more stress, which likely makes the P worse, and thus the itching worse, etc. I was in that cycle for about 5 months before I started the Humira. As long as I can sleep and I'm not bleeding all over things from the knees and elbows, I can be fairly patient.

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** Originally posted by JeffW **

Definitely getting worse now. Woke up about 5 am itching, and have new lesions on right knee despite sun and topicals.

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** Originally posted by TheOne1313 **

I wouldn't look at it as a last resort. I'm kinda in the same boat.........switching from Humira to Sterlera. The three times ive gone off Humira and went back on....it worked. My theory is Humira is just like any other drug in that our bodies become immune to the medication. So what I'm thinking is try Sterlera......if it doesn't work........prehaps go back to Humira.......it might work again.

I'm not sure what other meds you've tried but I also have Enbrel to fall back on as I have just been on Raptiva and Humira. My hope is that the Sterlera works and it seems like alot more biologics meds are coming out so by the time that stops, I can start something new lol

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** Originally posted by JeffW **

Just found out that I'm "approved" for Stelara by my insurance. Too late to call the dermatologist back today though. Still thinking about what I might do.

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