Cimzia and Minor Eye Hemorrhage

[SmittyMcSmee]

I just started Cimzia this week with the first loading dose for comorbid RA and UC. The first 400mgs went fine except for painful (tiny!) hemorrhages in both my eyes. My eyes were very red and very painful, but did not swell or weep, and my vision was not at all affected. I went to my eye doctor and was diagnosed with tiny capillary hemorrhages in both eyes. He linked it to the Cimzia I'd started the day before, since I don't suffer from high blood pressure or anything else that might have caused them, especially in both eyes. No treatment was needed, and after 2 days, both eyes are back to normal. It's a rare side effect of Cimzia but not unheard of, and also not dangerous to the eyes unless it continues. Of course I am hesitant to try Cimzia again, but I am also running out of options. I've been on Remicade, Humira, Entyvio, and Enbrel and those are just the biologics I've failed. There are endless other failed meds, and I am so very very tired. It has been a long, hard road. I need this to work. I want to try Cimzia again just to make sure it wasn't a one time event. My doctor is hesitant. Any experiences to share? I've just kind of had it today, you know? If you're on here, you probably know.

[Tommy1304]

Hi my name is Tommy Kershaw, aged 59, suffered from Crohns for 13 years. Medical team tried me on every drug possible, had an allergic reaction to Humira within an hour of my first injection, put me in hospital for a week.Medical team couldn’t do anymore for me, gave me to the surgeons. My Crohns was at the tail end, my surgery 3 years ago took away my back passage and colon. I’ve a permanent iliostomy , stoma. The surgery and recovery was a bit tough, but after that the rewards are incredible. Living with a stoma is not a big deal once you come to terms with it. I am no longer a prisoner in my own home, no longer stressed out, basically no longer living in fear. I would seriously recommend surgery if your medical team can’t get you a drug that works for you.

I still take methotrexate and an injection because I have enteropathic arthritis brought on by Crohns, I suffer with joint and muscle pain and fatigue. I hope this has been of some help to you.

Regards,

Tommy.

[SmittyMcSmee in reply to Tommy1304]

Thanks so much for responding, Tommy! I am so glad to hear you are doing well after such a long and frustrating road down the autoimmune path. I need a good success story right now. I actually had a total proctocolectomy in 2017. I have a permanent ileostomy, too, as the damage was too severe to hope for a j pouch. There was nothing left. While I do have relief from the bathroom symptoms of ulcerative colitis (I'm incredibly grateful for that--you know how liberating that is!), I still have all the other symptoms such as crippling joint pain, fatigue, feeling sick and so on, as the autoimmune disease rages on. And those symptoms are severe. The doctors told me the colectomy wasn't a cure, and they were so right. Still glad I did it tho! It was scary, but it needed to be done, and I'm happy with my decision. I also have a diagnosis of seronegative rheumatoid arthritis, which might be a factor in the mess that is my health. That's why it's so important to me that I not give up on this medication right away. I have quite literally exhausted all other options, even unto surgery. So it goes. I hope all the very best for you.

[Tommy1304 in reply to SmittyMcSmee]

Thank you very much for writing to me, it means a great deal. I forgot to mention that my sister recommended I take carnitine, an amino acid for joint and muscle pain. My sister does a lot of online research, with autoimmune sufferers. With me the carnitine has had great results, with much less pain. I really think you should give it a try. My sister suffers with Graves’ disease, it has really helped her too. Please let me know how you get on. Regards,

Tommy

[SmittyMcSmee]

UPDATE: Just in case anyone is curious as to how this all turned out, or has the same problem and comes across this post someday, I wanted to share that I did take the second loading (400mg) dose of Cimzia and it went fine: no eye problems whatsoever, only moderate side effects (so far). I did make the following changes tho! **Remember to ALWAYS talk to your own medical team (doctors/nurses/pharmacists) before making any changes to your medications or routines! Just because this worked for me doesn't guarantee that it will work for you, and just because it was safe for me doesn't mean it is safe for you.

1. I stopped any and all medication that even might have contributed to the hemorrhages. For me, this included the NSAID Celebrex and my migraine medication, Imitrex, both of which can increase blood pressure and both of which I took the day of and the day before my first loading dose. (Watch out for those ex's! lol).

2. I abstained from sodium and caffeine the day of and the day after my injections to also try an maintain an even blood pressure. (I'd say I also avoided stress but that's freaking impossible. I was so damn stressed about this).

3. I pre-medicated with 1000mgs of Tylenol and 50 mgs of Benadryl 30 minutes prior to the first injection.

4. I took 25mgs of Benadryl on schedule for the next 24 hours, keeping in mind the maximum safe dose for that time period. I was very tried that day. Benadryl lowers blood pressure and can help control potential histamine reactions to the meds like hives.

5. Probably most important: I spaced out my 2 200mg injections by 4.5 hours. This kept the full force of the meds from hitting me all at once like they did the first time.

I have no idea if any of this was really necessary, but I felt like I needed to do whatever I could to take control and make this work for me. I did experience significant side effects (fatigue--Benadryl duh, mild headache, dry mouth, stuffy nose, just feeling plain sick...) and stayed in bed all day, but nothing extreme like before. That may change as the meds continue to build in my system tho. I'll follow the same plan for my last loading dose in 2 weeks, and then hopefully I can relax a little once I'm on maintenance dosing. I'm already seeing some positive results in my smaller joints, especially my hands, so here's hoping! I wish anyone sick enough to be here reading this all the best in the world. Things can and often will get better. Just hang in there and stay the course.

[MissEgo]

Theres always cure for everything honey. Stay strong