Biologic treatment and multiple sclerosis
Hello! This is not a very cheerful topic, but I'd be very appreciative if anyone can share their experience.
I began taking Cimzia (a biologic) for my Ankylosing Spondylitis (AS) in December 2021. I was warned that multiple sclerosis (MS) was a possible side effect of the biologic. I have no family history of MS, so the side effect was considered unlikely for me.
Pre-biologic, my AS-related pain was focused to the SI joints. After beginning the biologic treatment, I noticed a reduction in SI joint-related pain. However, I also experienced newly developed lumbar, thoracic and cervical joint pain that has only gotten worse. I have not had a pain-free day since mid-February and most recently, I have been experiencing peripheral joint and nerve pain, primarily in my right elbow, hand and knee. I've also been fatigued and anxious.
Immediately my mind jumps to biologic-induced MS. I have appointments set up with my GP and rheumatologist, but I'm curious to know, has anyone on this forum who has started a biologic developed MS consequentially? Conversely, have you had AS-related symptoms that sounds like the above?
Hi there hope you're doing well today!
I'm so sorry to read that you are experiencing new symptoms, I myself was on cimzia last year i was on it for about 3 months and i developed PVC's they are still not sure if it was caused by the cimzia injections or My AS but I'm only 38 and never had heart issues before so i believe that these biologics have different affects for each individual which can be very discouraging as Katie above said we rely on these medications and when they fail or cause new symptoms it can be discouraging i hope you find some relief and your doctors can provide a better solution for your symptoms please keep us posted on how it goes. Sending you lots of healing vibes!
Nadine (Team Member)Hello Nadine! I went 3+ months without logging in and never saw your comment until today! Thank you so much for taking the time to write me, and my apologies for taking so long to follow up!
I'm sorry to hear about your PVCs. Since the time you left your comment, have you been able to find anything that helps?
I'm grateful to say that I have no more concern for MS, but am still learning to interpret new symptoms and understand their causes. I will see chronic pain specialist soon who may be able to help me understand what could and could not be tied to my AS.
It is a comfort to know, while we're struggling, that we have people who understand. I hope whatever medication or action you take for your AS that you feel relief and are headed in the right direction. Thanks again for showing your support. I hope you're doing well.No worries hun hope your doing ok? Sometimes a break is needed So I understand. Thank you for your kind words I appreciate that. Since I had the ablation my heart hasn’t felt the same I still get extra heart beats every so often and I get extremely weak not sure what the cause of weakness is yet I have to follow up with a cardiologist every 3 months to monitor it but I’m hanging in there taking it one day at a time. I’m glad your going to see a pain specialist that will help a lot. Wishing you the best on your journey 💙 Nadine (Community Member)
Hey @ebabbey!
I'm so sorry to hear you've been experiencing more pain and symptom's since starting biologics. It's really disheartening when the things that are supposed to make us better actually seem to cause more issues than we initially had. MS is also a major fear of mine, so I definitely understand your anxiety surrounding the whole situation.
So, I did not notice any new symptoms after starting biologics other than I started getting reoccurring UTI's and I now have severe GI issues (probably Crohn's), but I do experience all of the new symptoms you have and it has all been attributed to my AS. Also, shortly after being diagnosed with AS I was also diagnosed with fibromyalgia, which is a very common combination. Two days before my AS diagnosis I was actually in the hospital because my symptoms were so out of control that they did in fact think I had MS. It was terrible to say the least.
With all that being said, symptom onset varies from person to person, but I definitely think you are doing the right thing by bringing this to your doctor's attention. I hope everything turns out ok and they can maybe find a better treatment option for you that gives you the relief you need! If you have any other questions for me please feel free to reach out anytime!
All my best,
Katie, Team MemberHello Katie! So I just went 3+ months without logging in and never saw your comment until today! Thank you so much for taking the time to write me, and my apologies for taking so long to follow up!
I'm so sorry to hear about your experience with new symptoms and side effects. Dealing with complications and then multiple illnesses is overwhelming.
Since writing this post, I did see my doctor and there's no concern for MS (so grateful). As time goes on, even when my pain is lower, I seem to acquire more issues (GI, etc.) and I wonder if it's my AS working in insidious ways or maybe I'm just getting older? Haha it's hard to tell, but I'm just trying to take it one day at a time and develop new healthy habits.
I hope our biologics are only serving us well, and not compounding any issues. Thank you for your support and kindness. I hope you're doing well and headed towards feeling better every day.
