Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Humira Not Working???

My husband took it twice bi-weekly then twice weekly, with NO reaction. One rhuemy said don't bother continuing, the other said let's continue weekly for months if we have to. Problem is there is NO pain relief (even w/percoset), seems to just get worse and waiting for months seems like more misery. Anyone have similar response?

So just so I am not confused--he is taking it every week. Right? Is he taking any other DMARDs? Like Azulfadine or MTX? Did it ever work? Usually the first thing that feels better is the fatigue. So I ask, did his fatique improve? The first time on Humira it worked like a miracle for about 9 months and then completely stopped working. It helped with most of the pain though I do have permenant damage in my ankles which means that only improves a certain amount.

I was switched to Enbrel and it only worked about 3 months before failing. The dr wanted me on MTX and I refused. I went on Remicade and it never worked perfect but there was noticable improvement and I did start on MTX which helped it even more. Finally I went back on Humira along with MTX and it was fabulous for a long time.

So my first question is...did it ever work? If not, maybe it is time to switch to another. They all work a bit differently and so one will work better than the others but there is no way to tell which works best.

Also did the doctor suggest adding another medication, DMARD like MTX? They often do that pretty quickly now because you can run out of TNF;s if you "waste" them (like I did by refusing MTX). Sometimes when people refuse (like I did) they become much more reluctant to switch you to prevent that "using up" of the 3 TNF's.

How long has he been on it? They usually give it 3 to 6 months. Only 3 months if there was no reaction at all, 6 if there was some. All the meds can take time.

Does that help? Anna

Hi WHYf,yes I "failed" to respond to Humira. I was never given what I would call a "proper" explanation,in fact the rhuemy told me "Humira is the "best" biological ,if you fail on that it's pointless trying any of the others" Ok, they then went on to agree I could try Enbrel,I just presume it's "different strokes for different folks" I don't understand, fully, all the different genes these biologics target, but I know genetically we all differ.Have they offered to try another? I hope you get some answers soon, and please post them, I would love to know also.Jan.

I agree with Anna...Enbrel failed to work for me after being on it for 5 months. And just like Anna said, the only reason she kept me on it longer than 3 months was because it did help some with the fatigue level and stiffness, so she thought it might start helping me for the pain eventually, but it never did anything for my pain and inflammation. When it had been 5 months she suggested I start MTX, but just like Anna, I refused and said I didn't want to have to go that route quit yet and I didn't think it made any sense since the Enbrel didn't help the pain level at all. "I" wanted to just switch TNFs altogether and try Humira instead, which she allowed. However, she *warned* me that she didn't want me going through all of the biologics so quickly if the Humira alone doesn't work so well because then there's only one left (Remicade). So, she told me that if the Humira doesn't work well enough alone, she will add another med, like MTX for me to take and continue me on the Humira...so I ditto what Anna said completely!

Also, just like Janice said her Rheumy told her, once my Rheumy agreed to have me switch to Humira, she told me that "they" are seeing much more promise in people using Humira anyway and that it seems to work better than Enbrel for many people. She said Enbrel is good and very effective for many, but now that people with Spondys have been using Humira for a while now, it just seems to be more effective than Enbrel for most. So...I got the same comment pretty much that Janice in the UK got!

Don't know if my info helps you or not either, but I figured I'd share it with you in case it might. Good luck, hope your hubby gets some help and relief soon on something!!

Kris

Thanks so much, I'm not familiar with MTX and no Dr. has mentioned that. We see the Rhuemy on Monday. Sounds like I should look into that. Any positives with MTX/Humira combo for you?

Thank you this was really insightful, its been 2 months (not consecutively, unfortunately) so I suppose its just a waiting game, but seems miserable. Thanks for the input.

I cannot comment on MTX and Humira together, I take it w/Remicade. However, I wanted to comment that if you do start the MTX, please make sure your doc puts you on Folic Acid as well. MTX can be very hard on your liver and it is my experience that the folic acid helps.

My side effects w/the MTX were nausea (from not having the right dose of folic acid) and hair loss. In the grand scheme, those are minor I know, but I am a girlie girl and my hair thinning has not been fun, so we lowered my MTX dose because even my husband was starting to notice my hair was not what it used to be.

Good luck to you at the doctor!

Enbrel did absolutely nothing for stiffness, pain or inflammation for me when I took for 5 months. I had to emergency steroid injection because I developed severe costochondritis and I never recovered and have been gotten worse ever since.

Also I have been on Humira for about 2 months now but I am getting worse on every fronts. Same as Enbrel not effective. When I asked my rheumy whether adding other DMARD such as MTX or Azulfadine or Plaquell would be effective for my case she does not think it will help my case since my case is very severe. We were thinking that we may try change Humira biweekly to Humira weekly. Or may go on daily Kinneret. But we will discuss at our next appointment.

I will let you know if I find out something different.

Why,

Your choices are to change to another TNF or add medications. They are really discouraging changing TNF's fast because you can run out of options.

Did Humira help with fatique? Is he sure it didn't help at all?

I ask because you would not believe how many times people stop a TNF and they get worse, a lot worse. I thought Humira was working and stopped it to try something else and gosh I could barely walk again. I think I forgot how much worse it was.

If it didn't really help at all, at all the doctor might think the diagnosis is different so he needs to really try to remember before he started it.

You can ask to try Remicade since you can increase the dosage with that medication.

You might want to read up on Methotrexate before your visit on Drugs.com Though it does sound scary, millions have taken it with no problems. I did have a bit of hair loss in the beginning but most symtoms stopped after 3 months and it has been really helpful for me. I don't have any grey hair now from it. Amazing since I am old (well in 50's).

Anna

Banana,thank you for the Drugs.com. I will visit.

My costochonritis is getting worse. Now my rib cages below breasts are hurting and I have scratchy pain even when I talk, breathe or eat. My back, SI joint, hip, legs, hands, feet and wrists are burning, breaking, numbing, gnawing and tingling incessantly and it has not gotten better. I do barely walk and need a walker and a cane while taking Humira and Enbrel. That's why I had to get NSAID topical cream, Traumeel cream and still use 3 Lidoderm patches. I wish I was wrong and Humira was working. I do visualize that my body is healing and everything is perfect but it is only in my self-hypnosis state and visualization not reality... Steroid injection help but is short lived and my ever seriously worsening osteopenia makes my doctors very cautious about more frequenty injections even though I begged....

FYI. Thank god, my attending rheumy is patient and caring. For now, my rheumy and I first decided that I will stay on Humira one more month for biweekly. Then if it does not work we will increase up to weekly. Hopefully my insurance will approve for weekly treatment. It is already expensive expensive. Also, I am using NSAID topical cream, will start enteric coated low dose diclofenac with pylozac?(not sure exact spelling because left my prescription at the pharmacy) I had stomach upset and cramp so stop using all NSAIDs all altogether. If I cannot tolerate that we will try Arthrotec. If that does not work, I will try diclofenac with another type of brand name stomach pretective medicine. Right now, my AS is so severe I am willing to try anything including bearning stomach cramp, pain and upset if I have to.

As far as my hands, wrists and my arms, my doctor said I have tendonitis. She said applied topical NSAIDS since it prevents me to write poetry, which I do to deal with my physical pain and stres of my disability. She is not sure if Methotrexate or Plaquelle will help my case. She think Azulfadine may not work well for me because of my many intolerances and allergies to drugs. Per your suggestion, I am still open to try Methotrexate if other things fail. Losing hair is nothing since I am worried whether I will lose walking ability & lung capacity and experience severe breathing difficulty.

Any other suggestions, y'all?????