How might I feel after Infliximab infusions ?

[jellybean67]

Im due to start Infliximab infusions soon as oral meds have not helped so far. I have had Behcets for 5yrs and symptoms have recently worsened. Does anyone know how I may feel after the infusions ? Ive heard some people say how unwell they are afterwards but I am aware that sometimes you only hear the bad side of things. I feel I need a positive outlook but I would still appreciate honesty so that I am fully prepared,

[behcetshurtsbeyondwords]

Hello Jellybean,

I have been getting Remicade infusions now for just over a year. I`ve been diagnosed with Behcet`s for two years now, and have been really sick for the last 7 yrs. I might not be the right person to offer you a completely positive outcome, I am still awaiting one myself-- nothing seems to be able to help settle things down. My rheumatologist keeps pushing an increase on the remicade because he feels that this is my best option, but I am now nearing the max dose (800mcg every 6 wks) and still not doing well. However, I wouldn;t say that the Remicade is all negative-- it does seem to be one of the best options available right now for systemic symptoms and I`ve read that it can even help to prevent the serious eye issue and damage-- so even if I still don`t feel great, I feel that at least I`m being protected from serious irreversible damage.

In terms of the infusions themselves-- at the very beginning when I first started getting them, I found that it just wiped me out until the next day. It didn`t make me feel any more sick that I already did, just more tired. So my best advice is to just take it easy for a day or two after your I.V.-- sleep and rest as your body tells you to and just don`t bother trying to fight it-- it will eventually get better. I do still find that I get pretty worn out during and after the infusion, so I usually just go home afterwards and climb into bed.

Because I suffer from chronic nausea and also have adrenal inufficiency, my nurse always injects gravol and steroid into my I.V. before treatment. If you are worried that it will make you nauseous, then you could always ask for an anit-emetic before. The infusion takes a while though, usually about 4 hours. One thing that I do notice about half way through the infusion, I start getting a brain fog-- I`m not sure whether it is actually from the remicade itself, or the gravol, or my low- cortisol-- probably a mix of everything.

Anyways, it does seem a bit scary and daunting at first, but it really isn`t that bad. The only thing is the fact that you have to get an I.V.-- not sure if your veins give you lots of trouble with needles, I know mine sure do... I would say that`s the worst part of the whole thing!

I hope that things go well for you Take Care

-Jenna

[jellybean67]

Thanks for your reply Jenna I really appreciate your answer. I hope your symptoms improve. Take care xx

[andreafm]

Hi there Jellybean

I have just started on Infliximab infusions about 1 month ago. I noticed an improvement from my first infusion but it was short lived for about a week. Then at 2wks later I had another one and felt a good improvement again and this lasted about 2wks.

I am awaiting my next dose next week and am looking foward to having it because I do feel it has helped me overall, but mostly in terms of less fatiguing, muscle weakness and flares are shorter lived.

I have had behcets for most of my life and I am 52 now and was diagnosed in 2000 and also 6 years ago with neurobehcets. I have already tried 3 other immune supressants [tablet form] and prednisolone, which caused all sorts of health problems on top of what I have already got. They also made me feel worse and didn't solve the problems anyway.

What I like about Infliximab is not having to take tablets all the time. I don't fair well with tablets and so having the infusions which will be every other month eventually, is definately a bonus from taking tablets every day, for me.

It takes 2 hours at my local hospital under the haematology unit who are always on time, very caring and professional. Whilst I am there I am given refreshments, updating blood tests and lots of advice. The other patients there are also freindly and like a chat...so all in all a positive experience.

I can't say I have noticed any side affects so far...although I do have a bit of itching, hives and allergy type symptoms. I did suffer with these before at times so do not know if they are down to the infliximab or not. Also a little tired and achy the same day, but nothing more than I have experienced with my condition before.

Hope this helps to make you feel more positive and it helps you as much as it has me so far.

Good luck

Andrea

[jellybean67 in reply to andreafm]

Thankyou for taking the time to reply. It was really helpful xx

[SuenMike]

Hi There Jellybean,

I am looking forward to a dose of the wonderful Infliximab this coming week. I have been having infusions for almost two years now. It makes me a bit tired afterwards for 24 hours or so, but since having this drug, I have been so much better, and a flare I had last year was shorter and much less severe than before Infliximab.

Good luck with your treatment.

[jellybean67 in reply to SuenMike]

Thanks SuenMike for taking the time to reply. I very much appreciate your comments. Good luck and many thanks

[thegoodmom]

I have been getting Remicade infusions for 3 months now. I went through a stepped-up frequency induction phase at first, & am due for my 4th infusion, now at a 6 week interval, tomorrow. They really have helped my all over body pain - joint pain, muscle cramps, & even connective tissue achy feeling. All that pain was gone for the 1st 4 weeks after each infusion, but has started to come back since week 5 post infusion. I only get 100 mg per infusion right now, so I am hoping my dosage can be increased or I can have the infusions every 4 weeks instead. (*Note: I am also on other pain relievers, incl 100 mcg Fentanyl patch; but my current dosages did not control the pain well until I started the Remicade, which has worked wonders.) - Skin, mouth & down there ulcerations have been minimal on the Remicade. I didn't seem to have too bad of side effects after the infusion, except a slight fever and increased fatigue for few days after. Also, unfortunately, I have gotten sick - colds, flus, sinus infections quite a bit, despite vaccinations and considerable antibiotics. About 1-1/2 mo into Remicade infusions, I developed chronic, very severe fatigue, which just kept getting worse. I was diagnosed with adrenal insufficiency last week. I don't believe the adrenal insufficiency was caused by the Remicade, but the Remicade may have allowed an already developing underlying condition to become more apparent. I have been put on steroids for the adrenal insufficiency & I am hoping w/that & more freq Remicade I will be feeling great again soon.

I have been sick since late 2002. I was diagnosed w/UCTD originally in 2003, with a differential diagnosis of Behcet's (which I thought was bizarre at the time, though I had mouth, nose & down there ulcerations [tested negative for all STD'S], skin problems, a positive pathergy test, chronic joint & musculosketal pain, arthritis, etc.) - I was definitively diagnosed with Behcet's in 2007, when I began having severe, large ulcers all over my face and body & across my eyes at times. I developed Uveitis for the first time in 2011. I also have had several abnormal brain MRI's, & "a long history of numerous neurological problems probably related at least in part to her Behcet's) (*No one in my small town really qualified to handle neurobehcets. Fortunately for me, I still lived in a bigger city when I was originally diagnosed with Behcets, or I might still be suffering far more than I need to - as many know, pre-diagnosis is a terible time for us with this poorly understood disease.)

I used primarily methotrexate, plaquenil, & some prednisone & went into remission after a couple of years. I started getting sick again two years later halfway through my 2nd pregnancy & have never fully stabilized since. Plaquenil & colchicine worked well enough until this past year when I entered my 3rd serious flare. I am grateful they have the biologics like Remicade now, as the methotrexate made me very nauseaous & tired all the time, & I had some even worse experiences w/a few others. I have decent experience thus far, & still great hopes for Remicade.

[Michja]

Hi Thegoodmom,

Did you have uveitis before Remicade? Did you get pressure in the eyes?

My 10 year old daughter is about to start Infliximab/Remicade. Jaida had an MRI yesterday to see for ulcers but found her bowel impacted still. She has been on Lactulose to help for 2 months but not helped. Been in hospital now for 2 weeks with all usual symptoms and seem to be here more than at home.

Rheumatologist has decided it's time for Infiximab, I'm nervous but looking forward to seeing Jaida hopefully doing kids things. Running, playing games and to my surprise school work. Jaida misses her friends dreadfully.

Regards,

Michelle

[runninggirl08]

Hey jellybean, first I like your screen name. I just started remicade in October, I'm getting ready for my 5th infusion. I've had bechets for 30 years, last five years have been a huge digression. Its affected my CNS and I've lost all my hearing., I suffer w horrible mouth ulcers, uveitus, ulcers on extremeties, etc etc. The good news is since the remicade, my mouth ulcers have cleared for first time in four years. My uveitus is also doing much better, i was down for the count w that and couldn't drive for a month. The downside is I'm having a lot of side effects from remicade, horrible joint and bone pain, memory issues, brain fog, depression. I typically am given Tylenol and claritin prior to infusion. Benadryl knocked me out too much. I am very tired for a few days after. Then it seems I have a few really weepy days. I'm unable to work, but I am a tad more functional, which is great. Hang in there jelly - these drugs r very powerful but sometimes our only alternative after years of misfires. Good luck on your first infusion, let us know how it goes. And a Starbucks, iced green tea helps, lol

[andreafm]

Hi there Jellybean

Yesterday I just had my 7th or 8th infusion of Infliximab.... I have been ill with behcets for over 20 years [which remained untreated for well over 15 years] until I found good Consultants who are now looking after me.

I tried various immune suppressants by tablets over the last 6 years and found these really mucked up my system as I have never been any good at taking tablets. But with the infliximab I don't have this same issue and the beauty of it for me is that I have the infusion every 6 weeks and that is it. So for me not having to take Immune Suppressants every day is a bonus.

In the beginning with the infliximab I also got a biggish kick back from the infusion but now am beginning to really feel the benefits. In the beginning I felt pretty tired and weak and achy and as others have said a bit weepy. It is so important to rest just after having it as it used to take me up to a week to recover.

Having had it yesterday I now feel a bit hot and flushed and a little wobbly but otherwise my weakness is better than just before I had it done. and my brain is working so much better.

I make sure I take plenty of bottled water and something to munch during as I find this helps a lot.

I think what I am trying to say is it might take time to settle but for a lot of us it works well in the end.

Good luck when you have it

[bjburger]

This is my second infusion. The first one was 3 years ago...no reaction. This time however I have been kind of a littlr afraid. DO NOT let this deter you. It is a good drug. Have a good attitude and move forward

[runninggirl08]

Jellybean..I wanted to give an update re remicade. I had to stop it after 6th infusion...tested positive for ana and the side effects were just making me immobile. For me it was horrible as it went on. I made the personal decision to go gluten and dairy free seven weeks ago....its had been amazing...my brain fog is gone...memory back...joints much improved...no mouth ulcers...I am taking my body back...started a pro biotic...these changes have alleviated a number if my symptoms.