I concur with @A MySpondylitisTeam Member. In my observation amongst this and a couple of other forums that I've been on, I have yet to meet anyone on meds that don't have to change their meds or who don't get complete and/or permanent relief from any of them. In addition, the liver and kidneys typically suffer from medications. Do what you can in terms of healthier lifestyle. Its just as affective and better for you overall anyway, in my humble opinion and personal observations of myself and others. If you do go with meds, keep as detailed diary as possible about everything you take in addition to copies of all your lab work so you can identify potential problems before they get irreversible. Dont expect your drs to do that, you're not their only patient. Be your own best doctor.

Mentioned Users

A MySpond...

I am afraid of all meds, unfortunately. I went 25 years with pain before being offered a biologic 2 years ago. I decided to try everything else first... diet, exercise, therapy, meditation. I am glad I did because I am healthier over all. But it's still work. I have to work daily at my health and finding the right combination. I haven't eliminated the idea of meds, but I still have too much fear to start yet.
Best of luck finding what works.

I had absolutely NO FEAR of trying a biologic. When I was finally diagnosed and was offered a biologic, I jumped at the chance. I had already researched all the possible side effects and saw that the chance of developing them are very small. With what AS had done to me, I had already lost any chance at living anything close to a life which could be enjoyed any longer. I started on Enbrel and within 2 weeks I thought I was beginning to feel improvement but my rheumatologist had said it would be 4 to 6 weeks before I would start to feel improvement. At the 3 week point, my husband said he noticed I was beginning to move better so then I knew I wasn’t imagining anything. My blood is drawn regularly and I’ve had no ill effects. Improvements. I no longer need to use a rollator to walk (or the 2 canes I’d use on a ‘good’ day) but I’m able to walk without any mobility aids at all. In fact, I can now walk at a very quick pace when I take our new puppy out for his daily walks. I certainly still have some pain but all I need to use now to relieve it is good old Tylenol Arthritis. Biologics have been a LIFESAVER for me.

Never refuse to try a treatment without weighing carefully the greater possibility of success as opposed to the much lesser chances of the medication’s failure. I had to quit working and had been classified as Long Term Disabled. I’ve passed retirement age now but I’m probably more physically able and active than many people 20 years younger than me. Biologics saved my life!

@MySpondylitisTeam users... Hi ladies, my experience with biologics and what I have learned through my own research since taking them is this:
1 - without a cytokine panel that reveals you actually have an overabundance of the inflammatory cytokines the biologic prescribed targets, it's a dangerous experiment to your immune system.
2 - a cytokine panel test does exist but might be difficult if not impossible to get depending on where you live. You may have to travel to a teaching hospital to get it and your insurance company might not pay for it. It costs between $500 and $1500US.
3 - READ THE INSERTS. It astounds me how many people don't. Know what side affects are possible so you know what to be aware of.
4 - Get copies of all your lab test results and keep them so you can identify trends and potential problems before they're irreversible. It astounds me even more how doctors don't typically share this info with patients.
5 - My Rheumatologist tried me on Humira, Cosentyx, Enbrel, Orencia, and Skyrizi over a 3.5 year period:
Humira - 6 mos+/-, did nothing; Cosentyx - 4 mos+/-, full body guttate psoriasis got worse,no arthritis help ; Enbrel, 3 mos +/- everything got worse, caused new genital psoriasis that split my labia to bleeding point😣 ; Orencia 6 mos +/-, did nothing; Skyrizi 1 yr+ cleared my skin everywhere, but scalp, in less than a month, but after a year no help with arthritis. Then bloodwork showed declining liver function and I had to quit Tylenol use in addition to occasional glass of wine. Also, white blood cells,neutrophils, quit producing, Neutropenia. A few other things in blood started pointing to possible cancer and I was referred to a Hematologist. He said it was all due to the many experiments with biologics.
6 - After researching antioxidants for inflammation at National Institute of Health.gov I found that many of those taken regularly act on the same exact cytokines as most, if not all, biologics target. And they don't involve mixing human DNA with Chinese hamster ovaries 🤔. After discussing this with my Rheumatologist, who owns a side business that is a drip parlor, she agreed with me that it can likely be managed just as well, if not better, through diet, supplements, PT and lifestyle. Most Rheumis don't tell patients that for a variety of reasons. I personally am doing better using this route.

Do your homework and you will help your Rheumi find a treatment plan that suits you best.

As for worrying over what MIGHT happen in the future, remind yourself that it also is just as possible to might NOT happen. Cross the "might" bridge when you get to it, there will probably be better ways to deal with it then. New therapies and procedures are becoming more accessible every year, like stem cell transplants. TOPS, nanobiooperatives...😌🙏

Mentioned Users

A MySpond...

A MySpond...

A MySpond...

I am. But I do believe the benefits outweigh what side effects can be. I do feel better with the scary meds than if I didn't take them. I was told it would be rare to get them too....but I do get scared it may happen. I do go for annual skin cancer screenings too.