Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·Forums Main Index
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
·In Memorium
·KickAS Stories
·KickAS Banners
Forum Stats
13,550 Registered Members
28 Forums
43,723 Topics
518,353 Posts

Most users ever online: 1,568 @ 06/29/16 02:25 PM
Newest Members
heeya, sidomania, SachinV, Lisajharvey, Pulsar
13550 Registered Users
KickAs Team
John (Dragonslayer)
Melinda (mig)
Timo (Timo)
Brad (wolverinefan)

- Tim (Dotyisle)
- Chelsea (Kiwi)
- Megan (Megan)
- Wendy (WendyR)
- John (Cheerful)
- Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
Topic Options
#519592 - 04/29/19 09:05 PM Decided to stop biologic meds
LINCinNYC Offline

Registered: 09/05/01
Posts: 3410
Loc: The Big Apple
Hi all
After being on Enbrel and briefly Humera for 16 years I’ve decided to stop. I’ve posted about this in the main forum but few replied and I thought this point may have been missed, as my post is titled “Cancer”. I am 55 and I got tongue cancer and my doctors thought being on a biologic and suppressing my immune system on top of others things could have played a role. So I have been off for five months now, and in general my back is ok. Peripheral joints are not, and I get recurring bouts of tendonitis and bursitis in my feet and knees.
My cancer was caught and I’ve finished radiation. I’ve lost weight, have been vegetarian and am hoping to join a gym although I’m very fatigued right now. I’m wondering if anyone else has had to stop biologics? I was bummed as it changed my life for the better pain wise. I went from bed ridden at times to climbing stairs with ease. I did get infections a lot for which I’ve taken tons of antibiotics. Now I am fearful that I face future flare ups. I’ve had no starch diet success before biologics, and will stay veggie, it lessened the severity of flares and I will also be looking at supplements again. My rheumy had no answer for what to do. He’s new to me and I may have to find another.
Peace, you all Rock
Linc O'Brien

#519593 - 04/30/19 04:23 AM Re: Decided to stop biologic meds [Re: LINCinNYC]
Cymro Offline

Registered: 11/01/18
Posts: 55
Originally Posted By LINCinNYC

My rheumy had no answer for what to do. He’s new to me and I may have to find another.

Don't go rushing to find another rheumy. You have enough to cope with as it is without all the extra stress of changing doctors. There is no reliable way of knowing if a new doctor will be any better than this one. See if you can get some information about any new doctor before you commit to change. Find a few patients that have been with a potential new doctor for a few years and ask them what they think of him. That is not an easy thing to do so best of luck with it. Sorry I can't give you better advice but let us know how you get on.

#519615 - 05/04/19 09:30 AM Re: Decided to stop biologic meds [Re: LINCinNYC]
NorthernAS Offline

Registered: 04/28/19
Posts: 1
I too finally stopped biologic. It was causing more fatigue than anything else in life. Now that I have stopped I might be able hold down a job again without having the crippling fatigue. I am being stricter on the no starch diet which helps and medical Marijuana a,so helps manage pain.
I will take acute pain first thing in the morning vs day long fatigue

#519617 - 05/05/19 12:15 AM Re: Decided to stop biologic meds [Re: LINCinNYC]
rumble Offline

Registered: 01/31/09
Posts: 4501
Loc: NE Oklahoma
As you've got a lot going on right now, maybe spend some time researching docs in your area (probably won't take long unless you have a lot of choices of rheumys on your insurance-I've got 2-in the same office). When you are feeling stronger, make a visit with one of them and see if it clicks.

I had to stop biologics for a couple of years after a case of pneumonia, when the antibiotics were done. I wasn't too worried about lung cancer because of lack of symptoms...though this might have been unwise. The workup took me thru several sets of x-rays over a couple of months, then a CT scan that determined the presence of a 1.2cm nodule and 3 swollen lymph nodes. That got me a PET-CT (the point the spouse freaked out) that was less than certain at ruling out cancer. A year later, I had to have another CT, which still showed the nodule and nodes. Another year later, it was finally down to some 'debris', with no more followup needed. I was finally cleared to go back on a biologic and all is well. For the 2.5 yrs without it, my pain levels soared. It was a struggle to keep going at work often. My job keeps me on my feet almost the whole 8 hrs. I'm 62 almost and that is a tough issue--keeping on my feet. They hurt all the time. My Cimzia helps a lot with stamina and some with pain.

So hoping for your health to stabilize quickly once your radiation is complete. Hope your strength and stamina return soon. Good luck, Linc.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

#519630 - 05/09/19 11:59 PM Re: Decided to stop biologic meds [Re: LINCinNYC]
Janclebro Offline

Registered: 09/26/16
Posts: 47
Loc: Cape Town, South Africa
Hi Linc, as you've now given up biologics, how about looking in a completely different direction for a while? Most of the meds that modulate AS seem to work by suppressing immunity, and maybe the way to go right now is to see if you can instead repair and build up your misfiring immune system, rather than looking for an alternative to block it. Also NSAIDs affect the gut, which is where most of your immunity resides, so they too have a negative impact on immunity.

How about looking for a doctor of integrative and functional medicine? This is a qualified doctor who has studied further and focuses more on getting to the root cause of illness rather than just treating symptoms. They tend to have one foot firmly placed in the world of medicine, and the other in alternative treatments. I'm guessing that most of them will have some experience in treating autoimmunity, though not necessarily AS, and you might even be able to find one that specialises in cancer. The one I visited knew plenty about diet, though not the AS diet unfortunately, but she was nevertheless able to give me some useful tests and excellent pointers for getting my health back. She acknowledged that there were things I had researched about my disease that she didn't know, so she wasn't prescriptive, but we worked together as a team. Integrative refers to the fact that they work together with other specialists in order to help you, so they might refer you to other likeminded practitioners.

Not necessarily a perfect solution, but it might be worth asking around to find a good one and having at least one consultation, and see if this is a line of action that appeals to you.

Good luck with your recovery, Jane

#519640 - 05/16/19 06:03 PM Re: Decided to stop biologic meds [Re: LINCinNYC]
Luvnlife Offline

Registered: 08/08/12
Posts: 48
I hear you. Stelera caused really serious skin issues, it was like I was a vampire when I went in the sun my skin would almost bubble :0 Humira was working amazing until my blood pressure short circuited on Thanksgiving no less and I didn’t know what was happening but I really thought I might pass away at the table.

Now I am doing zero. I am getting off the prednisones it’s nearly 6 months from the Humira & Celebrex and I am just yesterday starting to lose the dizziness which has been absolutely terrifying for the past six months. I don’t know I’m wondering whether or not painkillers might just be a safer and more reasonable way, at lest for a while until science really figures out what they are doing.

I don’t pretend to know the answer I’m just pretty sure that these medicines are waaayyyy more dangerous than they are worth. Yes my foot is agonizing sometimes, yes I am miserable often but the AS has never made me terrified to be alone Or think my body was just going to shut down. Pain is awful but it’s survivable.

#519855 - 08/12/19 08:07 PM Re: Decided to stop biologic meds [Re: LINCinNYC]
Sue22 Offline

Registered: 01/13/08
Posts: 21342
Loc: Upstate NY
Have you considered LDN?

Before I could get a rheumy to dx and treat me, before I could get on the humira, I went on LDN.

I'm still on it, 4.5 mg a day. I think maybe it helps keep my immune system healthy while on the humira?

It did help my enthesitis. Once I started LDN in 2009, I stopped tearing tendons and ligaments.

But my neck and SI flared too badly too often, along with other symptoms, so I felt I needed the humira, and so far so good, though I understand why you are deciding to go without them.

My stepfather doesn't want to start remicade because he has "precancerous" cells in his intestines, probably from years of crohn's...because his is crohn's, he's been on asacol for years and plans to stay on that.

but, maybe consider LDN. It boosts instead of suppressing the immune system. Supposed to be good from everything from autoimmune diseases to cancer. smile


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#519945 - 11/21/19 05:43 PM Re: Decided to stop biologic meds [Re: LINCinNYC]
finnari Offline

Registered: 06/02/07
Posts: 528
Loc: phoenix
Worst hell of my life was not being able to take biologics.
I'm finally able to take them without getting a serum like sickness feeling. It was the antibody reaction to them.
But 5 years off and now on Cosentyx and it's amazing. I have my life back.
I would never consider life without them.I too was fatigued also but cleaned up my diet. Low FODMAP, Gluten free and dairy free and i am so much better. The DIET does ZERO for my AS without the biologics. I'm so thankful for them.


Moderator:  Megan, WendyR 
Who's Online
0 registered (), 48 Guests and 3 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
Last Piece of the Puzzle
by Inanna
07/07/20 07:42 AM
Typical NSD day
by DragonSlayer
07/03/20 02:25 PM
High sugars and inflammation
by DonCA
06/30/20 05:29 AM
Last year bad year for Auto-immune diseases?
by DonCA
06/29/20 03:23 PM
New Member AS patient Youtube Channel
by kristenlittle
06/16/20 05:58 AM
Antigen Based Immunotherapy
by sBrian
06/15/20 09:56 AM
As Patient You Tube Channel- brand new. all welco
by kristenlittle
06/14/20 07:58 PM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 53,482,382
hmmm 2,522,155
Has anyone had Pedicle subtraction Osteotomy ? 2,126,352
What to do about healthcare? Can it be fixed? 1,443,173
User names revisited 1,133,326
A.S and beds, What do you find best? 1,100,428
Medicinal Marijuana 1,050,447
OMG!!!! 996,125
No/Low Starch Diet Success Stories 801,747