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#277691 - 04/04/17 10:14 PM What's left after all these drugs?
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Hey everyone,

30-year-old male, been off work for five years. I spend most of my day on the floor, and can only comfortably leave the house for a few hours a day. (Sitting in chairs is near impossible without gnawing discomfort.) Anyway, that's just background; now for the list of drugs.

Here's all the biologics I've been on from first to latest:

Humira
Enbrel
Simponi
Simponi IV
Stelara
Cosentyx
Rituximab
Xeljanz

So far, nothing has remotely made it possible to sustain any activity for longer than a few hours. To add to that, the pain is from morning to night. I have an MRI in May, but recent x-rays suggest things are progressing in my spine.

I guess my question is: What's up? I can't be alone in having every biologic fail. As much as I'd like to pretend I'm special, I know that's not true.

I know there's a few more biologics out there like Remicade and Cimzia, but they're all anti-TNFs, and they haven't had much affect. Xeljanz is being given to me as a hail mary to see if something works.

Has anyone had a similar experience? Like my God I'm growing tired of living on carpet and watching everyone get on with their lives. I know life could always be a little worse, but sometimes I wish it could be even just a little better.

Thanks for your time! Now, back to the floor.

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#277692 - 04/04/17 11:05 PM Re: What's left after all these drugs? [Re: Headunderwater]
Flowers Offline
Registered Visitor

Registered: 07/18/12
Posts: 17
I didn't get full remission from biologics until doc added leflunomide with my biologic. At times, I do take high dose steroids to knock out a flare on a biologic. For me, it takes a combo of meds to feel my best. Have you tried taking a DMARD with a biologic? Also, in the past, I went on LDN with my biologic and that seemed to help me a great deal too.
_________________________
Arava, low dose daily Prednisone, sulfasalazine

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#277693 - 04/05/17 01:03 PM Re: What's left after all these drugs? [Re: Flowers]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Thanks so much for your reply.

Remission? That's a word I can't even entertain. Wow.

No, he hasn't added a DMARD throughout all of this, and I'm not sure why. Even with something like Xeljanz, Methotrexate is supposed to increase the efficacy. I wouldn't be adverse to adding a DMARD at this point to see what happens. It's actually kind of frustrating when I think about it now.

Thanks for throwing out that DMARD name though. I'm going to Google it right now.

Cheers!

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#277694 - 04/05/17 01:53 PM Re: What's left after all these drugs? [Re: Headunderwater]
Tacitus Offline
Registered Visitor

Registered: 06/06/03
Posts: 2898
Loc: Reno/San Fernando LU PI
WELCOME, Headunderwater:

Boy howdy, I know how that feels!

Not the biologics, but Your moniker.

Regret the chimeric drugs are not helping; certainly, this is very frustrating and I hope that You did not have to pay for them out of pocket!

AS certainly requires multiple therapies, but the choice of these should address the cause of this disease, instead of just the symptoms.

This disease had me pinned down, also. There was a reason for that in my particular case, absolutely related to my personal choices rather beyond the scope of this discussion.

Actually, however, many years prior I found the best way to take down flares is to fast, and I typically fasted for six days, but after a 20 day fast I was in solid remission for a long enough period to do a lot of good. I regret that dietary ignorance put me right back in this club within a couple of months. It is helpful understanding the food connection with AS and instructive that I eliminated the wrong thing: Meat. I should have eliminated all starches and especially fried foods.

I hope You find relief. One lead is to obtain a copy of Carol Sinclair's "The New IBS Low-Starch Diet," with an explanation of molecular mimicry--the mechanism of AS (IMO). Foreword by Professor Alan Ebringer. I managed to get very lucky with antibiotics, and worked up my own "AP for AS," in combination with starch elimination. My AS has been inactive for the past 17+ years.

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#277695 - 04/05/17 02:17 PM Re: What's left after all these drugs? [Re: Headunderwater]
Cake Offline
Registered Visitor

Registered: 08/08/13
Posts: 137
Loc: Madison, Wisconsin, USA
A biologic alone has never been enough for me, although it is hugely important and I can't imagine life without it (Enbrel).

I also need methotrexate, Imuran, an NSAID (Indocin), and opioid pain medication (morphine).

I have widespread pain in all peripheral joints as well.

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#277700 - 04/06/17 12:30 PM Re: What's left after all these drugs? [Re: Tacitus]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Thanks so much for your reply John.

It's funny, when I first got sick I tried to cut out all gluten and starch- I didn't even have a toaster for about six months. But man, it just didn't seem to work.

I keep reading all the success of people who have been on the London Diet. I would honestly try a fast if I thought it was going to work. I even read about a guy who claimed bone broth put him into Remission. Seems like everyone has a trick. I guess I gotta keep looking for mine.

Cheers!

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#277701 - 04/06/17 12:31 PM Re: What's left after all these drugs? [Re: Cake]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Thanks for your thoughts Cake. At this point I need to see if I can try a drug "cocktail" of some sorts!

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#277704 - 04/07/17 07:46 AM Re: What's left after all these drugs? [Re: Headunderwater]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6499
Loc: New York
OK, I failed several of them. Could you describe how you failed?

They would work like a miracle for about 6 months (sometimes a year) and then over night "turn to water". so depressing to wake up crippled once again. Any way have been in drug induced (not perfect but so close) remission for over 6 years. Here is my history.

After a couple failures, doctor had me on 10 pred a week before starting med and then taper off. This helps the new med get established. See below my history. Do not give up!!!!! You deserve a life.

Humira Enbrel
Remicade + MTX Humira + MTX+5mg pred+ immurin Simponi + MTX
Orencia + MTX + 5 pred + Arava, Actemra+ Arava


After a couple failures local rhuemy said nothing else to be done, so I went to Hospital for Special Surgery, one of the top hospitals for rheumy in country.


Edited by Banana (04/07/17 07:46 AM)
Edit Reason: typos
_________________________
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.

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#277706 - 04/07/17 09:02 PM Re: What's left after all these drugs? [Re: Banana]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Hey!

Failed as in I can barely leave the house for more than a few hours a week. And when I do get out, it's usually a race to see how long I can bear the pain until I need to lay down again. Absolutely nothing has stopped the inflammation. I would kill for even being able to leave the house for two or three full days a week. Right now I'm spending all my time stretching to stave off stiffness. It's like bailing out the Titanic at this point.

I would never describe any drug so far as a miracle. Even getting to feel like that for a few months again would be a real treat. I honestly don't even what it's like to just leave the house without mentally preparing for hell.

You're on Actemra now, eh? It's an IL-6? That's interesting. Do you find it works very well?

I'm just getting frustrated. Looking at how long I was kept on some of these drugs when they clearly weren't working was silly. Simponi alone was almost 11 months. Definitely mixed feelings about my treatment so far.

Thanks so much for sharing your experience. I really appreciate it. And for letting me type some angst out!

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#277729 - 04/12/17 08:36 PM Re: What's left after all these drugs? [Re: Headunderwater]
kitkat203 Offline
Registered Visitor

Registered: 07/14/14
Posts: 71
Loc: Coral Springs , Florida
I am truly sorry to hear about your suffering, we have all been there.Are on any kind of pain medication? My life improved greatly once my pain was somewhat controlled.
_________________________
Diagnosed with AS November 2013,HLAb27-neg. Also diagnosed with Fibromyalga and CREST syndrome. Degenerative disease of the cervical spine.

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