Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Page 2 of 3 < 1 2 3 >
Topic Options
#277734 - 04/13/17 01:07 PM Re: What's left after all these drugs? [Re: Headunderwater]
Sheep1 Offline
Registered Visitor

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

Top
#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: 31
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!

Top
#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: 6499
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.

Top
#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.

Top
#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.

Top
#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.

Top
#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.

Top
#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: 371
@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

Top
#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: 371
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

Top
#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)

Top
Page 2 of 3 < 1 2 3 >


Moderator:  ElinAslanyan