Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Decided to stop biologic meds

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

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.

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

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.

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

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.

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.

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.

Hi LINCinNYC and all the strong AS kickers....

A word of warning and a little history of my case... I was on a biologic called revelex infleximab for 2 years during 2014 to 2015 and thereafter one more year that was like in 2017 to 2018. In the beginning I had mild nagging back pain and that was severe for me at the time, As i thought. However I took the biologic and felt amazing almost cured! I then stopped and started again for one year more and after a while my CRP started to climb up also noted by the Rheumatologist, said that I have built up antibodies to the biologic. The biologic started to affect me badly during the infusions since I had antibodies to it I started shaking heavily vomited etc and felt very sick taking it...
I even went as far as removing the tube from my arm and draining the Biologic drip into the sink when the nurse was not looking...Since it
made me feel extremely bad...I then forced the doctor to stop it as It was not making any difference to my condition and CRP was climbing...so there was no point in taking it. I then asked for a new biologic the doctor told me there was no funding for Humira and still wanted me back on Infleximab. I refused to take poision.

Long story short, 8 years later my CRP continued to Climb and my condition got really bad with me on crunches for 2 years, and now with severe kyphosis and posterior pelvic tilt. I was just wondering how did my condition got this bad and then I realized it all went south after leaving my biologic...It is the only thing I have done to affect my AS health condition which went from mild back pain completely "normal" to crunches! and wheel chairs....

A BIG WARNING to ALL thinking about bioloigcs if you have mild pain and symptoms I would lay off Biologics as an option of treatment completely as it Seems, Biologics are designed for you to be on them permanently or until they fail to work then move on to another Biologic
otherwise all hell will break loose....if you stop completely !!!!!!

In my opinion Biologics should be illegal to give to patients because in the long run they cause more harm than good....

All the best

Lee