Switching to Remicade soon

Unfortunately my body has built up antibodies to my current medication so I need to switch to Remicade. I have already built up antibodies to Humira, simponi and Embrel. I did not have a good reaction physically to cosentyx. I would love to hear from people who currently do the infusion and get some tips on how they pass the time and how they work perhaps there workday into that schedule. I have to do the three loading doses and then after that I will be doing it every two months

[@judibeth6483]

Hi! I’ve been on Remicade for 9 years. I take 6MP as well so I don’t build up antibodies. I originally was put on these meds for Crohn’s and 4 years ago was diagnosed with AS. My infusions started at 8 weeks apart, but I’ve been going every 6 weeks for 5 years now. I nap or watch videos during my infusion. The infusion center that I go to provides snacks. Good luck to you and keep us posted.

[@ankyspondy771]

Thanks Judi

[@ankyspondy771]

6mp seems To have a better safety profile compared to methotrexate. I will ask about that

[@daveelliott2055]

I have a bottle of Methotrexate that I never started.Same here about the liver issues.Not worth the risk but alot of them like Remicade drips like every 6 weeks.

[@gregmacphee7234]

I have been taking Remicade for about 17 years now. My infusion was every 8 weeks until I changed it to 7 about a year ago as it seemed to be wearing off. I was on methotrexate for a short time ( 6 months )in the beginning. Like most people have mentioned I usually have an iPad to watch a movie and I will also answer work emails as well. Good luck with your treatments and I hope works well for you.

[@ankyspondy771]

Thank you Greg. My new clinic is great because I can do work in there I got a laptop desk so I can function better. I feel like it might not be working because I have had extreme fatigue spells for three weeks now. Did it make a difference going from eight weeks to seven?

[@gregmacphee7234]

It did make a difference to go to 7 weeks. For me I would start to feel very fatigued and sore at the end of the 7th week and would call my clinic to see if I could come in early. I have not had any issue since making the change

[@innyc001]

I'm from NYC. I've been on Remicade since end of December which I started during a really bad flare. It started to kick in after about 2 weeks. Had 2 more infusions since then and while it's slow to start working it did get me out of the flare. Still have alot of stiffness in the morning upon waking up but it gets better after about 3 hours of moving around. But I'm definitely in a better place now than I was 3 months ago. I get it every 6 weeks and during the 2-hour infusion I just work on some photo editing on my phone. I feel slightly lightheaded during the infusion, probably because it can raise your blood pressure a bit. But luckily haven't had any side effects from it aside from some fatigue. Best of luck! I hope it goes well for you!

[@ankyspondy771]

Thank you Manny it really is helpful hearing other peoples experience.

[@ankyspondy771]

I forgot to mention that I am actually from northern New Jersey originally. Right outside of New York. I still consider at home. I moved to Canada in 1992

[@bssandhu-jd7gg]

I have also ankosing syponditis

[@ankyspondy771]

Welcome Ninder

[@bssandhu-jd7gg]

No girl wants to marry me anklosing syponditis completely ruined my life.. No can I do job anywhere 😭😭😭😭

[@ankyspondy771]

Oh Ninder that is so sad. Are you in a country we're having a medical problem makes you considered non-marriage material? There are so many people out there with medical problems. I think even if you are in a culture like that which I'm not sure you are, there is going to be someone. Let me know so we can talk further

[@bssandhu-jd7gg]

@@ankyspondy771 i am from india i have ankylosing spondylitis since 8 years..doctor says there is no cure for this disease..I have pain in my back, I can't bend much

[@bssandhu-jd7gg]

@@ankyspondy771 I do daily exercise..if I don't exercise for a few days then pain starts

[@ankyspondy771]

@@bssandhu-jd7gg I have spoken with a number of people from India which is why I asked because I was guessing maybe that was the case. There is no cure that is true but the medication's slow the progression and help pain so something to speak with the doctors about. There are many ways to try to get financial help with the cost. Would there not be women that also have a chronic disease that are in the same boat? That is one option. I remember watching a documentary about a young girl who had diabetes and she was having trouble finding someone to marry in India. It's so sad to be marked in that way. You have so much to offer and your disease does not define you even though it feels like it now. Once you get your symptoms under control with medication there are so many jobs you can do. Had your doctor put you on any medication?

[@bssandhu-jd7gg]

@@ankyspondy771 Doctor advised me to take Saaz tablet But I stopped taking the medicine after 3 months.