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#278568 - 07/15/17 07:56 PM Go Back to Humira or Try New Biologic?  
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dcast096 Offline
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Hi all,

I was on Enbrel for 6 weeks and came off due to a side effect - we're not sure if it was the Enbrel for sure, but that's the only new thing I had introduced. I had a lot of hair loss, and a bald spot that was biopsied and found to be scarring alopecia which is autoimmune. Either it was brewing before the Enbrel, or the Enbrel caused it (you know how biologics can cause other autoimmune diseases, such as MS).

So it's time to choose my next drug. It's between Humira and Cimzia. Humira put me in remission two years ago, and I felt amazing, but it stopped working 7 months in. But I'm not sure if it lost ALL or just SOME effectiveness by the end. To be fair, I was in a period of high stress in my life when these flares started, so maybe it would be different now. Cimzia I have never tried. I'm also curious about Simponi.

My doctor wants me to try Humira again for 30 days because I never had a bad reaction from it. But my AS is so severe and has been untreated for almost two years (because I'm an idiot and wanted to try to manage this with diet and supplements--did NOT work). So is it wise to get back on a med that may or may not work? I feel like it's good to be careful, but is the fact that it didn't cause hair loss enough reason to take Humira again? What about my spine that is being damaged as we speak? Shouldn't we pick what is MOST likely to help me? I also have kyphosis that is worsening.

I looked back at my Humira log of symptoms, and at the 7th month mark until 12th month, I had lots of flaring.

Would you try Humira again because it worked well initially (but eventually stopped) or just go with something new? Have any of you tried a drug a second time and have it work again, or work better?

Time is of the essence and I don't know what to do!!! SO miserable.

Last edited by dcast096; 07/15/17 08:32 PM.
#278572 - 07/15/17 10:33 PM Re: Go Back to Humira or Try New Biologic? [Re: dcast096]  
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ARKANSAS

Do you mind if I ask what you mean by "so severe"? Mine is considered severe because of the amount of fusing and kyphosis, but usually the pain is not severe, although it has been for a couple of months. I'm not sure what doctors use to classify AS as severe. My records, for example, says "Ankylosing Spondylitis, severe and Psoriatic Arthritis mild to moderate...


Diagnosed with AS December of 2011. Neck fused and ligaments calcified. Taking norco, soma, duragesic patch for pain. HLA-B27 positive. Probably Lupus, and Sjogrens. Raynaud's off Humira for now frown 6 months ...we'll see from then smile lovin" live with adderall!! Hehe and hormones hehe
#278573 - 07/15/17 10:35 PM Re: Go Back to Humira or Try New Biologic? [Re: dcast096]  
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ARKANSAS
I meant to say, I'd ask the doctor if your body produced antibodies against (I hope I'm saying that correctly) the Humira would they go away after a drug vacation or will they always be there like TB, for example.


Diagnosed with AS December of 2011. Neck fused and ligaments calcified. Taking norco, soma, duragesic patch for pain. HLA-B27 positive. Probably Lupus, and Sjogrens. Raynaud's off Humira for now frown 6 months ...we'll see from then smile lovin" live with adderall!! Hehe and hormones hehe
#278574 - 07/15/17 11:52 PM Re: Go Back to Humira or Try New Biologic? [Re: dcast096]  
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CBMom Offline
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I went back on Humira. It did work, but not as well as before. I tried it for a second and third time because I had run out of options. The first time it worked like magic, till it just stopped. The second and third time I took it Arava and it worked, but not very well. But I had no side effects or bad reactions.

I'd try something else if you have options. Cosentyx, Simponi and Cimzia are all options.

I have been on all of them. Cosentyx is working for me now - not as well as I'd like, but well enough. It worked REALLY well, until I had surgery for an unrelated issue.

My AS has been hard to treat. I was diagnosed as a teenager with juvenile spondyloarthropathy and progressed to AS by the time I was 18. I only have some fusion in my SI joints and some damage in my hips, but my rheumatologist calls it hard to control or severe.

I'm not sure why it is called severe - because we can't get the inflammation under control (I have a consistenly elevated CRP) or because the pain has been severe.

#278575 - 07/16/17 09:44 AM Re: Go Back to Humira or Try New Biologic? [Re: dcast096]  
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My crp is all over the map! I had terribly controlled diabetes and had a vertical sleeve gastrectomy. It took me off 6 of the 7 diabetes meds I was on and my crp went down to 0.5! A year or so later it was 16.7. I lost about 50lbs last year and it was back down to 1.8. it's so odd. I've gone to the rheumatologist and had weeks if bad pain and he'd tell me I shouldn't be hurting badly because my crp was down 10 points from last time. I don't seem to see any difference when my sed rate or crp is low or high. I like keeping my CRP low simply because I have a family history of heart disease and a high CRP is indicative of heart disease or can cause it? I mean I'm not exactly sure I just know inflammation is bad for your heart lol is bad for a lot of things! Lately it's been bad for my state of mind!


Diagnosed with AS December of 2011. Neck fused and ligaments calcified. Taking norco, soma, duragesic patch for pain. HLA-B27 positive. Probably Lupus, and Sjogrens. Raynaud's off Humira for now frown 6 months ...we'll see from then smile lovin" live with adderall!! Hehe and hormones hehe
#278579 - 07/16/17 01:23 PM Re: Go Back to Humira or Try New Biologic? [Re: dcast096]  
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I went back on Humira and it worked again, but than failed again too. There weren't other drug options at the time. So I even tried it a third time WITH MTX and that helped again.

I would try the new one or else add MTX. Did the hair loss stop after you stopped Enbrel?

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
#278583 - 07/16/17 10:24 PM Re: Go Back to Humira or Try New Biologic? [Re: Banana]  
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No Banana, it didn't stop. It's still going. There's one area that has been identified as scarring alopecia, so we are trying to figure that out, but since it's autoimmune, the Enbrel may or may not have triggered it.

When you went back on Humira the second time, you didn't add MTX? How long did it work that time? I'm not comfortable with using MTX because I already get bad nausea and the hair loss is still going.

#278584 - 07/16/17 10:28 PM Re: Go Back to Humira or Try New Biologic? [Re: CBMom]  
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I call mine severe because the pain is just back-breaking and awful and it prevents sleep and walking and sitting, and I'm just a total mess. I'm nonfunctional.

When you went back on Humira the second time, you said it worked but not as well -- do you recall how much it controlled the pain? And did you write that you took Arava with it? I couldn't make that part out.

I would like to try something new, I'm just a bit afraid because of this autoimmune hair loss issue maybe being related to the biologics. I think my doc is pushing the Humira because it never caused anything like that and we'll probably never know if Enbrel was the cause. So maybe he's afraid to start me on something new?

He's also not being helpful in terms of giving me information about the others. I know basic things about Simponi and Cimzia, but I don't know how many of his patients do well on them, etc. I have no idea how to pick unless I have his help. Do you know much about each of these? Since I did well on Humira and Simponi is a monoclonal antibody as well, I would think I might do well on Simponi, but that's my own logic and it might not translate to reality...

#278585 - 07/16/17 10:30 PM Re: Go Back to Humira or Try New Biologic? [Re: BellaShade]  
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Hi Bella. I say severe just based on the excruciating pain and debilitating fatigue. I'm very disabled right now and everything is a struggle. I can't sit up for more than 20 minutes at a time, I can't walk very long, and sleeping is difficult because the stiffness and pain wake me up. My kyphosis is worsening, but it's not severe at this point. I personally think it looks awful and I'm very self conscious.

My doctor said the drug antibodies drop over time the longer you've been off the med, but I haven't been able to find research that confirms that.

#278587 - 07/17/17 02:47 AM Re: Go Back to Humira or Try New Biologic? [Re: dcast096]  
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CBMom Offline
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You could try getting a second opinion. Are you at HSS? My pediatric rheumatologist was at HSS and I saw a couple of adult rheumatologists there for a while. Mine just retired so I had to switch frown.

Yes, sorry - I took Humira with MTX the first time. Humira didn't start working properly till I added MTX. I was unable to continue the MTX for more than a few months, but the Humira worked (like magic!!) even after I discontinued MTX, for over a year.

The second and third times, I was on Humira with Arava. It helped with the pain, but it didn't last the whole week (I needed it weekly, not biweekly, all three times).
But I still needed Tramadol or stronger pain meds and it felt like I'd have 3 ok-good days (in terms of pain, fatigue, ability to function) and then 3-4 awful days.

The second time I stuck with it for 3 months then switched back to Remicade. The third time, I had nothing left so I stuck with it a year till Cosentyx was approved.

I have the same problems - trouble sleeping, sitting and walking. I was completely unable to function when my meds weren't working. I missed two years of school.

I'm not sure how you'd choose - my doctor generally helped me make the decision after discussing it with me. Once I switched from pediatric to adult care, I became much more involved in the decision-making and did a lot of research on my own.

I'd ask your doctor WHY Humira is a better option than Cimzia or Simponi, since it already failed once.
And I'd also ask, if Enbrel gave you hair loss, would it make sense to try something completely new like Cosentyx (IL 17 vs. anti-TNF)?

Good luck!

Last edited by CBMom; 07/17/17 02:48 AM.
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