Experience of my first infusion: pls response

[DavidXU]

Hi all, I have got my first Remicade infusion right before Christmas. It was OK during the 3-hour infusion, and then I went home.

Since then I felt really sleepy and dizzy. Cannot work any more for the past 5 days.

The belly pain seems to be better: it comes several times each day, with lower magnitude. But I lost 1.5 kg after the infusion.

Do you have such reactions?
Is post-infusion reaction a good predictor of Remicade's efficacy to Crohn's?

Thank you.

 

[theOcean]

That doesn't seem like a typical reaction to me... have you been able to get in contact with your GI at all, or a nurse? It could possibly be an allergic reaction of sorts to the Remicade.

Remicade, out of all the current biologics, is the easiest one to get bad reactions to because of the protein it's made from. Let your doctor know how you're doing when you can, because that doesn't sound good to me.

Are you getting regular blood testing?

 

[maggiesfour]

I had those reactions too. Many people do. I had the dizziness pretty bad too. I was told it was a normal part of side effects. Plus, finding site that talk about remicade helped me to decide what was good and what was bad. For example, when I started with extreme bone pain, I insisted on a Prometheus test...

Please, just put a call into your doctor, so this can be charted. Okay? I just wanted you to know, I had the same reactions. OH - and brain fog - my goodness, the brain fog was the worse with the Remicade - And it as always after the infusions, so I just worked my days around the symptoms. It was great.

 

[Honey]

Hi there,
and welcome. You should have regular bloods taken, in fact before your infusion on site, at the hospital to check how you are. Keep your doctor informed of any side effects as they will want to monitor you closely. I did well on Remicade for almost a year, then I reacted by having a lung infection, and had to come off! Nothing else had worked or made me ill. I am currently doing well off treatment for Crohn's. I hope all goes well for you. Best wishes.

 

[DavidXU]

Thank you for your replies.
I have called the Dr and he doesn't know why I feel so sleepy.
This is day 6 of my first infusion. The pain seems to be improved by Remicade, but I still feel tired and brain fog sometimes.
I will have my 2nd infusion in 2 weeks and blood tests will be done before that.

 

[Honey]

Hi there,
I am told by my Consultant that fatigue is part of the illness. I lead a busy life, but do have to go and rest each day otherwise I become disorientated. Go with how you feel and take that rest. Best wishes.
:rosette1::thumright::rosette1:

 

[Alley2231]

The Remicade hangover is no fun! The day after my infusion I feel extremely tired, weak, lightheaded/dizzy, joint pain, bad headaches.

The joint pain and the bad headaches stay until about a week before my next infusion, but everything else goes away by the next day. The fact that you are still feeling that way a few days after the infusion, doesn't sound right.

Keep in contact with your doctor. I don't know if you keep a journal, but it would be good to start journaling your symptoms every day too.

 

[DavidXU]

Thank you Alley2231.
After around 1 week, my headaches and dizziness finally disappeared. I am as energetic as before.
But the sporadic abdominal pains are still there. And I see no weight gain yet.

 

[Alley2231]

Glad to hear the headaches and lightheadedness went away! I have pain everyday still in my abdomen, usually very dull, but can get up to a 5 or 6 occasionally. I have had no weight gain from the Remicade....it was the Prednisone that packed on the pounds for me!

 

[Jay Woodman]

@Dave I just usually feel sleepy during the remainder of the day after my morning infusion but I am also given two Tylenol prior to the Remicade Infusion so I attribute my sleepiness to the Tylenol.

 

[DavidXU]

Glad to hear the headaches and lightheadedness went away! I have pain everyday still in my abdomen, usually very dull, but can get up to a 5 or 6 occasionally. I have had no weight gain from the Remicade....it was the Prednisone that packed on the pounds for me!

How many infusions did you take so far? If Remicade works for you, I guess the pains should dissipate...What does your doctor say?
I have been desperate for gaining weight in the past 2 years. I used Prednisone for 6 months but no weight gain.

 

[DavidXU]

@Dave I just usually feel sleepy during the remainder of the day after my morning infusion but I am also given two Tylenol prior to the Remicade Infusion so I attribute my sleepiness to the Tylenol.

Hi Jay, why do you take Tylenol? I think that's for treating symptoms associated with cold.

 

[Alley2231]

How many infusions did you take so far? If Remicade works for you, I guess the pains should dissipate...What does your doctor say?
I have been desperate for gaining weight in the past 2 years. I used Prednisone for 6 months but no weight gain.

I've been on Remicade since April 2014. So I had the initial infusions (0,2,4,8) and then an additional 4 after that.

I just had my last infusion last week. I am actually switching to a different biologic due to side effects I've been experiencing since being on Remicade - migraines, light & noise sensitivity as well as bad joint pain.

 

[Jay Woodman]

@DavidXU Just review the Remicade Information Website www.remicade.com I think you will find information under Infusion Overview helpful. For example, "Premedication could include antihistamines (anti-H1 +/- anti-H2), acetaminophen, and/or corticosteroids. During infusion, mild to moderate infusion reactions may improve following slowing or suspension of the infusion and, upon resolution of the reaction, reinitiation at a lower infusion rate and/or therapeutic administration of antihistamines, acetaminophen, and/or corticosteroids. I am given both Tylenol & an infusion of Corticosteroids as a "preventative" cautious approach to help prevent an infusion reaction.

 

[Jay Woodman]

@DavidXU I also thought it important to mention to you a typical compliment treatment regimen by North American standards is to add an adjunct drug to the Remicade. To help you body avoid building antibodies to Remicade most GI's usually recommends a medication such as Methotreaxte. I am on a low oral dose of 10 mg. (4PillsX2.5 mg.) ONCE a week. I wasn't really keen to add this drug to the Remicade Infusion but if you review some of the Clinical Trial Data you will begin to understand the importance of adding another drug to hopefully help avoid Remicade antibodies. We as Crohn's patients don't have a lot of Biologic medication options if our bodies reject the assigned Biologic.

 

[DavidXU]

@DavidXU I also thought it important to mention to you a typical compliment treatment regimen by North American standards is to add an adjunct drug to the Remicade. To help you body avoid building antibodies to Remicade most GI's usually recommends a medication such as Methotreaxte. I am on a low oral dose of 10 mg. (4PillsX2.5 mg.) ONCE a week. I wasn't really keen to add this drug to the Remicade Infusion but if you review some of the Clinical Trial Data you will begin to understand the importance of adding another drug to hopefully help avoid Remicade antibodies. We as Crohn's patients don't have a lot of Biologic medication options if our bodies reject the assigned Biologic.

Thanks for the mention. I know some doctors prescribe immunesuppresant like AZA or MTX to take while taking Remicade infusions. The combination will work better than Remicade alone. But also at higher risk of cancer
This is my first time to know that MTX once a week can help avoid Remicade antibody. I will discuss with my doctor about it but I do guess he might not heard about it.(I am his first CD patient)

 

[DavidXU]

I've been on Remicade since April 2014. So I had the initial infusions (0,2,4,8) and then an additional 4 after that.

I just had my last infusion last week. I am actually switching to a different biologic due to side effects I've been experiencing since being on Remicade - migraines, light & noise sensitivity as well as bad joint pain.

I am sorry for your side effects. So you are turning to Humira?
Did you take scope to check your healing after Remicade infusions?

 

[Alley2231]

I'm waiting for my doctor to get back to me about insurance approval for my new med. He would prefer I go on Cimzia because it has less migraine like side effects.

I had 2 colonoscopies with in a 3 month period last year. My doctor has said that only a yearly scope is now needed. The next one is looking like it'll be in February.

 

[DJBHeat]

For me, the day of and the day after my infusion of Remicade is when I'm a little sleepy/out of it. After that I feel OK. Was always told that Remicade can have some strong side effects, but it affects everyone differently. Definitely try to get in tough with your GI to discuss what you're feeling

 

[plebsta607]

Hi
I am going in for my first infusion this week and I'm so worried that it's going to make me sick.
can anyone tell me how they felt whole having the infusion and afterwards...I'm worried that it's going to physically make me be sick...is there any chance of this??

 

[OldCrone]

I used to feel terrible for three days after the infusion but then one time, after turning the wrong way on a one-way street, I realized how foggy my brain felt and I requested that I not be given IV Benadryl with the infusion the next time (I now take oral Clariton instead; this was okayed by by doctor).

I'm always a bit tired after the Remicade, but is it from the drug or from sitting in the chair for three hours after being poked and prodded and bruised by nurses who can't find a vein? Or sitting there without anything to eat or drink because I forgot to bring something? Or from the Remicade? Anyway, I've been on it over a year and while I do feel wiped the day of infusion, I feel pretty good after a night's rest. If you get the IV Benadryl and don't like the way it feels after, check into another antihistamine. (I take the Tylenol and Clariton at home because, and given the cost of Remicade this is ridiculous, I know, I can't stand the thought of paying $8 for a dose of Tylenol!)

 

[plebsta607]

I'm in England so I don't know if I have the same stuff as pre meds lol.
I'm due my 3rd infusion this week...They have all gone fine so far apart from feeling tired for a few days after I have been fine
Hopefully it controls the crohns aswel lol

 

[Honey]

Hi there,
I do not know what other meds went with my Remicade infusions, other than an anti_nausea drug. Yes, I was tired for days too. However, the good news is it worked for me and the symptoms of pain and Dia...were under control!
So, I wish you well and hope it works for you. I did eventully have to come off because off unwanted side effect, but I am currently very well. Best wishes.
:rosette1::bigwave::rosette1:

 

[plebsta607]

Do you mind me asking what the side effect was?
Since my 2nd infusion the room on face has been really dry and sore..I don't know if it's anything 5p do with infusion or not lol

 

[DavidXU]

I know that my case may be rare: I had been on Remicade only, and my white blood cell count dropped. After my 3rd infusion, I felt brain fog for more than 4 weeks. I feel better now, but not as good as before the first infusion.

The nurse gives me Dexamethasone as pre-medicine. I don't think this is to be blamed for the long term effects.

Remicade really works for me, but the side effects make me concerned. And it costs me so much(20,000RMB≈$3,500 per infusion). I will talk with the doctor and make a serious decision.

 

[Jay Woodman]

@DavidXu. Sorry to hear the white blood count has dropped. I've completed Infusion #4 on February 10th. I continue to take the 8 weeks infusion plan combined with weekly Methotrexate at 10mg. After Infusion #3 I was feeling very discouraged & anxious because there was no significant change in fistula drainage. All of the literature I read indicates that there should be a noticeable response after Infusion#3. Infusion # 3 seems to be sometimes referenced as the "MAGIC MILESTONE"....There wasn't....The weeks following Infusion #4, however, have been noted as a marked change with fistula drainage almost nonexistent...Just wanted to shed some positivity of Remicade response for perianal fistulas : )

 

[Honey]

Hi there
I took a lung infection and had to go into hospital.. I had had a number of infusions before that, and was just about to have my next. Do not worry, we are all individuals in our response to meds! Best wishes.

 

[Alley2231]

The only thing that I ever noticed during my infusion was a headache as well as some lightheadedness. I never took any pre-meds or any other meds to treat my Crohn's besides the Remicade. It worked very well to control my symptoms, however it caused horrible migraines and joint pain for me, so I needed to switch. I also felt extremely exhausted and fatigued the day after my infusion, but the day after that I felt fine. I think the tiredness a lot of people feel is just due to the amount of meds that is being pumped into your body.

I'm currently in the introduction stage of Cimzia...so far so good! The best part about it, is that I feel fantastic the day after my injections....no laying around feeling like death the day after!

 

[indyjps]

(I am his first CD patient)

David, is it possible to get a Dr that has experience with Crohns / fistulas. I'm not sure of the medical process in China, but I would want a Dr experienced in this field.

I'll be started remicade soon, Crohns / fistula myself.

I've never been to Beijing but been to China 6 times, once for 6 weeks, mostly Suzhou and Shanghai. My Chinese is terrible, even after much practice. I usually try to find a kid to help if I can't figure something out, their English is good from school.

 

[DavidXU]

David, is it possible to get a Dr that has experience with Crohns / fistulas. I'm not sure of the medical process in China, but I would want a Dr experienced in this field.

I'll be started remicade soon, Crohns / fistula myself.

I've never been to Beijing but been to China 6 times, once for 6 weeks, mostly Suzhou and Shanghai. My Chinese is terrible, even after much practice. I usually try to find a kid to help if I can't figure something out, their English is good from school.

Hi indyjps, welcome to China. It is possible to find experienced Dr with CD in China. I am not sure about Suzhou, but I lived 4 yrs in Shanghai and get diagnosed there. There are a few IBD experts in several hospitals in Shanghai. Remicade usage is common for them. But I am not sure who of them offer English service.

If you can go to Sir Run Run Shaw Hospital in Hangzhou, you can see Dr Qian Cao. She worked in Mayo Clinic in the US, so I am sure she can speak great English.

But if you are not covered by your own insurance, you have to pay by yourself. Contact me if you need more info.