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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
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Registered: 07/18/12
Posts: 12
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, Simponi, low dose daily Prednisone, Armour thyroid

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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: 2878
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: 127
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: 6450
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: 70
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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#277734 - 04/13/17 01:07 PM Re: What's left after all these drugs? [Re: Headunderwater]
Sheep1 Offline
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Registered: 08/12/15
Posts: 210
Headunderwater.

I agree with the others- you should be on some sort of "drug cocktail". Each of us responds differently, and each doctor practices differently.

I did great the first 6 months on Humira, then had knee surgery, and the Humira has become less effective. My doctor added methotrexate which definitely has provided relief and seems to make the Humira more effective.

I also take double doses of Aleve on my worst days, and pain medications.

Here is my list: Humira, methotrexate, Aleve (double the over the counter dose), Tramadol (pain medication), Baclofen (muscle relaxant) and at times I have to take Vicoden to help me sleep.

It's kind of a trial and error thing, and I'm surprised your rheumatologist hasn't added other medications to the biologics. A good rheumatologist will think out of the box. Have you considered on getting a second opinion? I am on my 3rd rheumatologist who I like, but even then, I just got a second opinion about my hand pain from another rheumatoloigst (number 4). They all practice differently. I think you need a rheumatologist that is willing to try more aggressive treatments on you. You deserve more than lying on the floor all the time. Before I found a cocktail that worked, I was in bed 5 days a week for 16 hours at a time. Now I only have slow mornings but function the rest of the day and end up in bed only occasionally. Don't give up hope...
_________________________
48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009

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#277739 - 04/14/17 12:00 AM Re: What's left after all these drugs? [Re: Headunderwater]
Eleven11 Offline
Registered Visitor

Registered: 07/09/15
Posts: 29
Headunderwater,

Ouch. You got it really, really bad. It hurts to even read that.

I don't have much to add to what others have said (does seem like adding a dmard makes sense) except that:

Several people in my support group are on Xeljanz and have had success with it. I think some of them had failed multiple biologics. They all see the same doc who I believe is involved with trials of Xeljanz for AS. I hope that gives you some hope.

It sounds like you're young enough to stop this thing with relatively minimal damage and I believe you will!

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#277743 - 04/14/17 10:57 AM Re: What's left after all these drugs? [Re: Headunderwater]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6450
Loc: New York
So none of the meds even worked at all? Did steriods help? Maybe you don't have AS? Why no DMARDs?

Perhaps it is time to see another doctor. When I failed a couple, this rhuemy told me there was nothing else. I went to Hospital for Special Surgery in NYC and there were still plenty of options.

Do not give up!!!!!!! See someone else!!!!! Sorry, for your suffering. Actemra seems to work for a certain subset so it is rarely the first one to try, but it has worked for me, yahoo.
_________________________
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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#277776 - 04/18/17 10:14 PM Re: What's left after all these drugs? [Re: kitkat203]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Sorry for the delay. I have tried opiates, and a lot of cannabis, but it all works to a point before the side effects become to much.

With opiates I'm afraid that my dose to effectively limit the pain would be so high I would have a heck of a time coming off it. I guess that's the problem with opiates for pain that isn't terminal.

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#277777 - 04/18/17 10:19 PM Re: What's left after all these drugs? [Re: Sheep1]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Wow. So I'm not the only one who has lived in bed. It's getting really tiresome. My Mom is retired and back from Palm Springs now, so it's like the Golden Girls, except I'm almost 31,male, and not up to any shenanigans but crawling over to the cat to bug her while she sleeps.

The problem is my rheumatologist is the highest rated in the city, and has the most connections to drug companies, research, conferences, etc. But after all these drugs and the insane time periods in between it gets frustrating. A year on Simponi, for example, seemed absolutely nuts.

Thanks so much for your reply. I really appreciate your perspective.

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#277778 - 04/18/17 10:26 PM Re: What's left after all these drugs? [Re: Eleven11]
Headunderwater Offline
Registered Visitor

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

I really thought Xeljanz was working a week or two into popping the pills. I was even able to sit in a coffee shop and read a newspaper (was shocmed it doubled in price the last time I bought it) , and thought I could maybe go on a backpacking trip if the drug was actually going to keep improving. Wow. That was wishful thinking!

My family doctor just gave me Gabapentin, and I am back to scarfing indomethacin down because Naproxen just doesn't cut it.

It just gets so isolating. I went to a function last week for three hours and barely made it out alive.

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#277779 - 04/18/17 10:35 PM Re: What's left after all these drugs? [Re: Banana]
Headunderwater Offline
Registered Visitor

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

I just finished a week of prednisone and absolutely nothing. In the past it would take the edge off, but this time, good god no.

Never had a DMARD. He seems to be a firm believer that it's only for peripheral AS, but with how much pain I'm in, who can differentiate at this point.

It seems likely I have AS. HLA-B27, sacroilitis, and my x-rays are finally *sigh* starting to show some faint squaring in the lumbar, with some stuff happening in the C5-6 area too. I would love for there to be a misdiagnosis easily corrected!

I am going to ask him about Actemra. He's really trying, but it's so frustrating to wait months and months to see him and then it's all stabs in the dark. But I also realize treating AS isn't always straight forward.

At this point I would love to sit in a chair comfortably for even eight hours a week. Like, that would be a dream. A two hour movie is stretching it as is.

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#277780 - 04/19/17 01:17 AM Re: What's left after all these drugs? [Re: Headunderwater]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
@headunderwater..stand for everything you do. Its not very comfortable but better than sitting. You can buy one of those sit stand desks for 240. It used to cost around 1000 a year ago, but now they are much cheaper.

http://www.ikea.com/us/en/catalog/products/S49084965/

I am also around your age, and have many symptoms as yours. I failed humira and cosntyx as well. I am seeing Dr. Gensler now. Changing doctors is one thing you can do. Although even a new doctor may not be able to help you, but at least you
would have checked out that from your checklist. And I am sorry for you have to go through it. I will keep my message short, as I have a tendency to spread my hopelessness. All the best!
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#277781 - 04/19/17 01:35 AM Re: What's left after all these drugs? [Re: Headunderwater]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
don't change doctors, but go for a second opinions, ask your new doctor to work with your current doctor, so you have two minds working for you instead of only 1
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#277792 - 04/19/17 01:31 PM Re: What's left after all these drugs? [Re: Shippingnews]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Thanks for your perspective shipppingnews.

I was about to get a standing desk waaaayyyyy back in 2012 when I first got diagnosed, but sitting or standing, I just couldn't survive for forty hours a week. (Or, in advertising, sixty.) I find those zero gravity lawn chairs to be the most effective, as it puts less gravity on everything. My dream would be to live in space if I could.

I agree with keeping my doctor. He's good at what he does and see no reason to stop seeing him. It would be nice to have a second rheumatologist to see more often, but I have no idea how that would work.

I went to a pain clinic a few years ago, but it was the same long stretches of time between appointments. They also didn't offer much besides creams, painkillers and nerve block surgeries. Pain relief is a goal, but I really don't want to be dependent on opioids if there are ways of slowing the disease.

Anyway, thanks so much.


Edited by Headunderwater (04/19/17 01:33 PM)

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#277795 - 04/19/17 05:56 PM Re: What's left after all these drugs? [Re: Headunderwater]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
You said"

---I agree with keeping my doctor. He's good at what he does and see no reason to stop seeing him. It would be nice to have a second rheumatologist to see more often, but I have no idea how that would work. ----

Talk to another rheumatologist- and I am sure they would be willing to give a second opinion. Your current rheumatologist , if he is a professional would not mind that or should not mind that you are getting a second opinion. I am sure you are not the first of his patients who wants to get a second opinion and it is very common in this profession. I was worried just like you how the seeing second rheumatologist would work, but it is not a big deal. Just tell them you want to get a second opinion, they cannot stop you from doing that. And it should not effect your continued treatment with your current doctor, do some research which doctor you would want to see(preferably who is a specialist in AS, need not be the best, even 2nd or 3rd best would work) and if he/she is in your insurance coverage. Yes it is a long stretch( for most of us), I waited 4 months between appointments. The earlier you contact them the earlier it will be. All the best!
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#277796 - 04/19/17 05:59 PM Re: What's left after all these drugs? [Re: Headunderwater]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
one advice- Dont try to hide that you are seeing another rheumatologist( I thought doing that, but eventually did not)( be open about it), as you dont want your current doctor to think that you dont trust him/her(plus second doctor would need all the medical records from your current doctor)

EDiting to add: In my case, the new rheumatologist was very nice and she said that she would have to see me more than once in order to treat me. I have dealt with many doctors and most of them are very accommodating to your needs.


Edited by Shippingnews (04/19/17 06:06 PM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#277806 - 04/20/17 07:16 PM Re: What's left after all these drugs? [Re: Shippingnews]
Headunderwater Offline
Registered Visitor

Registered: 03/18/17
Posts: 11
Thanks so much for this advice! It's nice to bounce this stuff off other people.

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