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Living with Psoriatic Arthritis (PsA)

Remicade side effects


#1

Hi all, i am looking for those with PSA and taking Remicade and any aide effects they have experienced . ive looked online and most forums are directed to Chron’s disease

i.had my first infusion last wednesday. felt tired but otherwise fine. on friday i had terrible stomach cramps and diarreah (sorry) which lasted all through Sunday night . i was woken last night with lower back and stomach pains so severe i.was doubled over . i seriously considered a trip to the ER . everything was spasming and i got no sleep. the pain has pretty much gone away. im just exhausted and stayed home from work . i.have been drinking lots of water and taking immodium

anyone know if this could be from the Remicade?


#2

I don't think those would be side effects of Remicade. I don't think I've read anything about those as possible side effects and don't see them listed on remicade's website. It sounds like a bad gastrointestinal illness to me.

I'm on remicade (3 infusions so far), and my side effects have basically been being VERY tired for 24 hours afterwards (not sure if it's the allergy med or the remicade) and a general run-down feeling for around 48 hours after infusion. I also have more frequent headaches / migraines, but have no idea if it's the remicade or what.


#3

ok. finally got a call back from the rheum dr. my side effects i noted above are from the remicade, although fall under the “rare” category. To top it off I also have a monster fever blister on my lip so valtrex has been called in for me. nothing is easy…when i go for complications i go all out


#4

Dear Suzanne,

Hope you feel better soon!

Wishing you well,

SK


#5

So sorry Suzanne, you seem to get a bad run with the side effects so often! Are they something likely to resolve over time, or has remicade become not an option to you now?


#6

There was no mention of my next infusion being canceled so for now I assume it’s a go


#7

Good luck with it Suzanne :slight_smile:


#8

I had taken Remecade for about 2 years when one day I started spasming and couldn't stop. Went to hospital was there for 9 days they didn't find the reason but my Rheumy said it was because of Remecade. Now they will not allow me to take any biologics. So you arenot alone when you had spasms. It was very scarry for me. The pain was the closest to labor pain that I have ever expereinced. I feel these biologics are dangerous but what do you do when they are the only things that work. Do you not take them and have pain constantly or take them and not have pain and pray you don't have anymore spasms? To anyone that has Psa that is a very hard question to answer and those with Psa are the only ones that can honestly answer this question.


#9

I’ve missed 3 days of work because of how I felt and am only going today to save myself some sick leave. I

I am going to try a other dose in a week and if this happens again then I will have to seek an alternative. I have work but can’t be nauseous, and feel so lethargic at work constantly. It ruins my concentration and makes the day seem very long.


#10

Hi Suzanne
I have been taking remicade since the end of 2009. I have had PSA for 6 years. My doc gave me infusions every 8 weeks to start. I felt nauseous and tired and generally unwell for 2 days then everything was good the pain went within a few weeks and I felt like myself again. Make sure you are careful with infections and colds and things. Get your blood tests done. I went into hospital in Dec 2010 and had 3 major infections at the same time! Doc attributed the remicade to all of them. I am the only one I know thats ever had a problem. It scared me. I came off the remicade. My PSA came back with a vengeance! I was bedridden! I spoke to an infectious disease doc who helped me understand how to keep myself healthy, I am back on Remicade every 4 weeks now, and haven’t looked back…the symptoms can be irritating but the advantages outweigh them tremendously. Good luck honey.


#11

Thanks for the insights Janet.

I am about to begin Remicade in a few weeks....just a quick question or two based on your post. What was the difference between the first and second experiences with Remicade? How has it impacted your Psa impacts? Do you still suffer the reactions after infusions? When you had the 3 major infections, were they difficult to control?

Thanks for sharing any more that you can. :)



Janet Green said:

Hi Suzanne
I have been taking remicade since the end of 2009. I have had PSA for 6 years. My doc gave me infusions every 8 weeks to start. I felt nauseous and tired and generally unwell for 2 days then everything was good the pain went within a few weeks and I felt like myself again. Make sure you are careful with infections and colds and things. Get your blood tests done. I went into hospital in Dec 2010 and had 3 major infections at the same time! Doc attributed the remicade to all of them. I am the only one I know thats ever had a problem. It scared me. I came off the remicade. My PSA came back with a vengeance! I was bedridden! I spoke to an infectious disease doc who helped me understand how to keep myself healthy, I am back on Remicade every 4 weeks now, and haven't looked back...the symptoms can be irritating but the advantages outweigh them tremendously. Good luck honey.

#12

The side effects after the 2nd infusionn were no where near as bad. I had my primary doctor write me a prescription for Valtrex and started taking that 3 days prior to the infusion to hopefully avoid a fever blister, which worked. The infusion nurses told me it is usually 4-6 treatments before one starts feeling the effects, but that's an average. Sooner for some - longer for others. I have noticed a difference in that the pain in my feet seems to have lessened, but no change in the hands and wrists. I also was not nearly as tired after the 2nd infusion.


#13

Alexis,

I began my second set of remicade infusions after the doctors got rid of my infections. I actually had pneumonia pancreatitus and endocarditus. The infections were not life threatening! If left yes but easily taken care of. My second has been worry free but I am very careful with keeping my hands clean and not touching my face or mouth if I am outside of my house, my children know not to bring someone home who's been ill with something catching. I haven't been sick again, I have very minor pain and when I do its cause I try to do to much. My biggest issue at the moment is the fatigue. You can't really combat that. I highly recommend Remicade and it has done wonders for me yes I still feel tired and a little unwell after the infusions but compared to the hot shards of pain throughout my joints I will put up with the side effects. I really think I can control what I am exposed to to stop being sick and will see a doctor if I can't shake whatever it is within a week or so. Please feel free to ask anything of me I am almost back to my old self and if I can shift a bit of this weight I will feel even better. I hope this helps take care.

AlexisM. said:

Thanks for the insights Janet.

I am about to begin Remicade in a few weeks....just a quick question or two based on your post. What was the difference between the first and second experiences with Remicade? How has it impacted your Psa impacts? Do you still suffer the reactions after infusions? When you had the 3 major infections, were they difficult to control?

Thanks for sharing any more that you can. :)



Janet Green said:

Hi Suzanne
I have been taking remicade since the end of 2009. I have had PSA for 6 years. My doc gave me infusions every 8 weeks to start. I felt nauseous and tired and generally unwell for 2 days then everything was good the pain went within a few weeks and I felt like myself again. Make sure you are careful with infections and colds and things. Get your blood tests done. I went into hospital in Dec 2010 and had 3 major infections at the same time! Doc attributed the remicade to all of them. I am the only one I know thats ever had a problem. It scared me. I came off the remicade. My PSA came back with a vengeance! I was bedridden! I spoke to an infectious disease doc who helped me understand how to keep myself healthy, I am back on Remicade every 4 weeks now, and haven't looked back...the symptoms can be irritating but the advantages outweigh them tremendously. Good luck honey.

#14

Oh I forgot to mention that I also take methotrexate along with the remicade. I can't say that both experiences were similar because I haven't been sick again and honestly didn't realise I could get sick. So I am just careful.


#15

That's very helpful Janet, thanks!

Is the fatigue you mentioned related to the Remicade treatment or the condition in general (realizing that is a common theme)? I know so many of us (and me as a relative newbie to a Psa diagnosis) have a heck of a time trying to figure out what symptoms/pain is the actual condition and what isn't - so I'm just curious where the "hot shards" of pain were the worst for you.

Thanks for the continued sharing...it's appreciated. :)



Janet Green said:

Alexis,

I began my second set of remicade infusions after the doctors got rid of my infections. I actually had pneumonia pancreatitus and endocarditus. The infections were not life threatening! If left yes but easily taken care of. My second has been worry free but I am very careful with keeping my hands clean and not touching my face or mouth if I am outside of my house, my children know not to bring someone home who's been ill with something catching. I haven't been sick again, I have very minor pain and when I do its cause I try to do to much. My biggest issue at the moment is the fatigue. You can't really combat that. I highly recommend Remicade and it has done wonders for me yes I still feel tired and a little unwell after the infusions but compared to the hot shards of pain throughout my joints I will put up with the side effects. I really think I can control what I am exposed to to stop being sick and will see a doctor if I can't shake whatever it is within a week or so. Please feel free to ask anything of me I am almost back to my old self and if I can shift a bit of this weight I will feel even better. I hope this helps take care.

AlexisM. said:

Thanks for the insights Janet.

I am about to begin Remicade in a few weeks....just a quick question or two based on your post. What was the difference between the first and second experiences with Remicade? How has it impacted your Psa impacts? Do you still suffer the reactions after infusions? When you had the 3 major infections, were they difficult to control?

Thanks for sharing any more that you can. :)



Janet Green said:

Hi Suzanne
I have been taking remicade since the end of 2009. I have had PSA for 6 years. My doc gave me infusions every 8 weeks to start. I felt nauseous and tired and generally unwell for 2 days then everything was good the pain went within a few weeks and I felt like myself again. Make sure you are careful with infections and colds and things. Get your blood tests done. I went into hospital in Dec 2010 and had 3 major infections at the same time! Doc attributed the remicade to all of them. I am the only one I know thats ever had a problem. It scared me. I came off the remicade. My PSA came back with a vengeance! I was bedridden! I spoke to an infectious disease doc who helped me understand how to keep myself healthy, I am back on Remicade every 4 weeks now, and haven't looked back...the symptoms can be irritating but the advantages outweigh them tremendously. Good luck honey.

#16

Hi Janet,

I am just on my first infusion of remcicade for my Psa. Felt OK during infusion besides bad headache,but nurses said it was probable due to weather not infusion but it not really gone since (5 days now). Have been on secukinumab,golibumab,embrel and methotrexate. I am still on methotrexate now as sub cut weekly dose.

Am hoping have no interactions with this med as all others have caused either no relief or major complications that have put me in intensive care twice since 2016.
P


#17

I was on Remicade for 8 years and it was working well until this year. I developed Lupus. It’s horrible to deal with but as bad as it is, it’s the only side effect I have had. As always, ask your Rhematologist, but I have discovered, with any autoimmune disease anything can happen. Hang in there and all the best to you.