Hi. I'm new to this platform and tomorrow I have my first Rituximab infusion. I was diagnosed with Vasculitis GPA last month. I've never had any hospital treatment before so a little nervous.
I'm curious about other people's experiences during their first Rituximab infusion?
l found my first infusion of rituximub very difficult . I was exhausted, dreadful headache generally feeling unwell . My next one and subsequent ones were fine . It has been a life changer for me . I think the first one was probably so bad because l was having a vasculitis flare at the same time . The staff keep a very close eye on everything. Good luck
Thank you for sharing. I'll go prepared.
Hi Chocolate78. Don’t worry, that’s the first thing I would say. I was diagnosed in December 2019 but after Cyclophosphomide, lockdown, Steroids, failed Azathioprine I was put onto Rituximab a year later. I had no issues during any of my infusions even the first two close together. The only issues I have is I get a dry throat for a few weeks and a bit of muscle pain and a headache from time to time but otherwise I lead a normal life and as artists says “Game Changer” there’s nothing I can’t do if I wasn’t on it. I am on a low carb high fibre lifestyle (have been since 2017) and I stay fit (exercise walking, cycling exercise bike about 200 minutes per week) which I have to admit can be a challenge getting started because I get fatigued a little for about 8 weeks after my infusion. I have got through Covid quite easily while on Rituximab and without any drugs (NHS mess up) like Anti Virals or Monochlonol Antibody treatment, I have had all my Covid Boosters to date (10) although Covid lingered for about 4 weeks but mostly mild symptoms. Very few people have problems with Rituximab but give it time it can be a slow burner initially but you will start felling better after a few weeks, then improve again. By about 10 weeks you won’t know you’ve had it, and if it works for you like it’s worked for me you will hardly be able to tell you have GPA. Oh by the way my bloods are done every 3 months and apart from the odd deviance are all within stipulated limits. Take care good luck and hope this has helped. Nick.
Hi Nick. I read your message just before starting my first infusion and it really put my mind at ease. Pleased to report no adverse side effects other than being very tired. Now home on the sofa with a cat on my lap. Thank you for your kind message and taking the time to share.
You Brave Little Soldier! Well done and forward now. Don’t hesitate to get in touch via the forum if you need any advice or you experience any side effects, I’ve had 9 shots of the stuff now so I can talk all day about it. Take care. Nick.
hello my Rituximab went 100% fine, no reaction. They start is very slowly and monitor. With Rituximab and prednisolone for 5-month Induction there were days where I never felt better. Wish you best of luck!
Glad to hear you had a positive experience with Rituximab. My First infusion went well, just abit tired. Thanks Sally
I've had it several times. They start it very slowly and give you antihistamine. I generally go to sleep. Use the toilet before you start and have any snacks and drinks close by. It takes ages, but it's okay. Good luck x
It really does take along time, doesn't it(7 hours). Thank you for the suggestions on food and drink, I took a picnic 😊
Hi Chocolate 78, I also have GPA and over the past couple of years have had 4 infusions of Rituximab. As Nick has already stated it is a wonder drug that certainty made the difference for me fighting this horrible disease.
Like you, prior to diagnosis, I had never had any significant medical treatment before. I had a white coat and needle phobia and was extremely nervous. I found all the hospital staff fantastic, compassionate and so friendly which greatly helped with my treatments. I had no real issues with the Rituximab infusions apart from a little fatigue for a few days but nothing to worry about.
The first infusion took about 7 hours as they infuse it slowly and monitor closely for reactions but subsequent infusions were around 6 hours. On the day you will have an infusion of antihistamines prior to the Rituximab.
Take a good book with you, relax and don’t worry as this treatment will help you.
I wish you all the best and I hope your treatment goes well.
Hi Dazler99. As suggested I took a good book along, god send. Would have been rather bored with out it.The hospital staff were all lovely so my first infusion wasn't anything to be nervous about.
Thank you for sharing your experiences. I hope I continue to react to the treatment as you have.
Onwards and upwards.
First of all I’d say please don’t worry, you’ll be fine! Here’s a few tips to help:
Drink plenty of water, at least 2L throughout the infusion. This helps to prevent dehydration and helps avoid headaches.
Take a blanket as you may feel cold.
Take a book, iPad etc to entertain yourself but don’t be surprised if you simply sleep a lot.
Take food, nibbles etc you are allowed to treat yourself!
Make sure you have someone to drive you home, you’ll probably feel quite ‘out of it’ and won’t be able to drive yourself.
When you get home just be kind to yourself, you’ll probably feel fatigued for a few days.
Obviously not everyone has the same experience as me, but this was the advice I was given before my first round of rituximab and it was invaluable.
The staff are amazing and will take good care of you.
All the best!
Thank you for the tips. All followed and all helped make my first infusion run smoothly. I'm tired and very pleased to be home on the sofa with the cat. I'll take it easy for the next few days.
I have my third round tomorrow, so will be chilling for a few days too.
Also… If you’re on Facebook there’s a brilliant group called EGPA Churg-Strauss Syndrome Support & Awareness. It has lots of advice and shared experiences in a very friendly format. I’ve found it so supportive since I was diagnosed last year.
I have a mild reaction to rituximab and the medics slow the infusion down and give me extra antihistamine. The symptoms for me are scratchy dry eyes and a tickly throat and pricking scalp. Otherwise, apart from fatigue which is helped by exercise, no problems.
Hi Pigeon12. Thanks for sharing your experience. I hope your reaction cleared quickly.
I tend to react a bit to the antihistamine/steroid combo they push through before the main rituximab infusion. It causes me to retch quite badly. However if they push it through very, very slowly, my reaction is virtually nil.
As others have mentioned, take drinks and snacks... and entertainment. Be prepared to be bored... you will be there for quite a while 😴
There are a fair few Facebook groups around vasculitis, one I follow is Vasculitis Support (UK). It has a more UK focus.
A fellow GPA patient 😀
Hello Fellow GPA patient I will check out Facebook as suggested, thank you for the tip and your shared experience
Everyone reacts differently. Unfortunately for me it made me worse, completely like a vegetable. And I was extremely well before. Not sure enen now why the doctors presc me Rituximab if my health was great for the past 15 years. Simptoms started after 2 weeks of receiving the infusion 2mg... . Then another 7 months of falling of my feet on the street, walking in zig zag, diziness, horrible double vision, walking like I was 120 years old lady, unable to walk unaided at all , extreme shortness of breath, unable to rest properly, hands shaking while taking food to my mouth. It was absolutely horrendous. I thought I had PML. Hopefully I don't as doctors are still investigating and they don't understand my excessive tiredness all of a sudden after Rituximab. For sure another autoimune health issue was triggered by that.
I don't mean to scare you but this was my experience. When you read 99%of what other people have experienced with it... I guess I was the unlucky one.
Hope it will have the best results on you!
I'm so sorry to hear you didn't have a positive experience with Rituximab and I hope you are on the mend now.
Interestingly alot of the symptoms you mention I have too but I've had them for 5 months prior to my first Rituximab infusion.
Thank you for sharing your experience. I always prefer to be prepared for anything so being aware of this reaction is helpful.
Hope your infusion went well. I’m always pretty tired for anything between days and a few weeks after my infusions so this might also be the case for you.
Thankfully I received lots of books for Christmas so I'll be resting on the sofa for as long as it takes. First infusion did go well, and thanks for your response
For what it's worth since I'm in the US and a bit late to reply. I hope you did well with your infusion.
I've had four rituximab infusions so far. The first two were my induction infusions spaced two weeks apart. Then the schedule became every six months.
My first infusion took the longest time since they go very slowly to see how you respond. It took about 6+ hours.
I took the train to my infusion center which was a 10 minute walk from the station. I didn't dare drive not knowing how I'd feel.
My infusion center pre-treated me with an IV steroid, IV Benadryl antihistamine, and two Tylenol pills (paracetamol).
My infusion was stopped for about 20 minutes because I had a mild allergic reaction (my ears and mouth got itchy). I was given additional IV Benadryl and a 24-hour Allegra antihistamine pill (fexofenadine). Everything was fine after that. I've read it's not unusual to have some sort of reaction when you first start infusions.
I was exhausted at the end and felt a bit wobbly. My daughter met me at the center to take the train home with me and get me settled. I felt ok the next day except for the antihistamine hangover and some heart palpitations from the IV steroids. I have atrial tachycardia and premature heart contractions so palpitations were not unexpected.
At my infusion center they offer snacks and drinks and warm blankets. The nurses were very attentive. I felt well cared for. They documented every response and for subsequent infusions they reduced the amount of IV steroids and made the addition of the 24-hour antihistamine a regular part of my pre-treatment. Infusions #2, 3 and 4 were uneventful. It takes about four hours now and that includes the half-hour pre-treatment.
The infusions have done their job for me. Infusion 4 put me in medication-induced remission and everything attributed to my GPA in my lungs has resolved. My blood work is good. My sinuses are good. (I have no kidney involvement.) Now we see about keeping me stable.
I am also in the US and had my first infusion of rituximab last Friday 2/17. My experience receiving the first was the same as yours with the premeds before the infusion. I had no issues, during or after, drove myself 3 blocks to home and napped the rest of the day. My next appt for #2 is next Friday. I still feel tired daily. I have RA and been on all the regular ra meds since diagnosed in 2013. Mtx and hydroxy stopped working after 7 yrs and humira stopped working after 10yr. Tried embrel and it did nothing.
I'm not sure what GPA is, I did Google it. And hope I'm not butting in on the wrong group. My RA has really blown up during this last yr. Sticking to a more vegetarian diet, cutting out refined sugar and trying to exercise to gain some muscle mass back.
I Hope the rituximab will help as my hands, wrists, feet, ankles and knees are all inflamed and make every day living quite painful. I am on celebrex as a pain reliever but it doesn't do much.
Thanks for the pos+ feedback for chocolate78
Hi Susan. I probably shouldn't be surprised but I do find it interesting that the treatment plan in the US and UK are the same. It's quite reassuring really.
My first infusion did go well thank you. Just abit tired, I was already wobbly!
Very pleased to hear you're in remission and the number of infusions you mentioned helps to paint a picture of what I might experience myself.
I hope you remain stable and in remission permanently.
i have finished 8 rounds of infusions and am in remission. The nurse watches you carefully and moniters vitals aver 30 minutes. Nothing to be worried about. I bring my Ipad and watch a movie, or bring a book, and snacks, and a sweater.
Thanks for your reply. How long did it take for you to go into remission?
Two years of infusions and prednisone. I believe I was in remission after one and a half years. The early infusions took about 6 hours and the later ones about 4 hours. I have microscopic polyangiitis which affected kidneys.
I too have this condition and am due to have my 2nd infusion on the 18th February, 6 months after having had my 1st infusion 6 .months ago. I found that part 1 of the 1st infusion left me feeling quite tired and lethargic, however the 2nd one was fine. The one watch out I will share is that I have suffered with bad ulcers in my tounge and have been doing so for 7 months. They have given me several mouth washes to try, however my most recent appointment with a maxillofacial oral consultant mentioned that by using 1 component of a 3 part mouthwash would perhaps offer better return...so far she has been right having started a pure dose of bethamehasone on Friday and so far thing seem a lot less painful. I do hope that you do not develop the same issue I did, as it has changed my abilities both personal and social. I also suffer with bad tinnitus upon my diagnosis and so far nothing has helped. Stay strong and hope that part 2 of the infusion goes well. Which hospital are you at if you don't mind me asking? If Addenbrooks, I suggest you request for any prescriptions to go to your GP surgery, as the pharmacy there is so busy and you could end up waiting for 4 hours.
Thanks for replying. I'm being treated at Southmead hospital in Bristol. They avoid 4 hour waits by not having a patient pharmacist onsite!!
The ulcers don't sound pleasant, sorry you've had to deal with this. I have tinnitus and mild/ moderate hearing loss due to the vasculitis (it started as an ear infection that wouldn't go away).
Have you noticed any improvement after your infusions? I read it's meant to have an impact after 2 - 4 months .
That's probably a good thing as it's getting harder to get prescriptions dispensed at Addenbrooks. Your symptoms and issue sound very similar to mine and the hearing issue initially presented as a possible ear infection which progressed I to tinnitus after about 2 days. It is the most frustrating problem and I pray one day it will pass. Anyway onto the infusion, the 1st was about 7 hours and the day after I felt shattered. It took about 3 days to start feeling normal again, however I picked up Covid-19 in-between treatments which knocked me back by 4 weeks and then had my 2nd infusion which was a lot easier to manage. My bloods were regularly monitored and my PR3 ANCA level dropped from what was 33 down to 17. I a. I'm now at 1.76 from my last test and the infusion has made a big difference. I would say that it dtarted feeling much better after wk12, but everyone is different. Be very careful with calcium, as whilst I was on ADCAL together with Prednisolone , I got very tired very quickly, especially when my calcium levels spiked.
My PR3 cANCA was 174 when first diagnosed!! I hope the infusions make a big difference for me too.
I'm also taking Adcal and I'm very tired. In what way should I be careful?
Bless you and the infusions will certainly help I have no doubt. I found that Adcal pushed up my calcium levels quickly, which depleted energy and left me lathargic and exhausted. On weekends I was sleeping up to 14hrs a day, which is not healthy. Too much calcium is worse than having low calcium, it's just about finding balance and regular full count bloods will reveal this and you will get advise and support.
hiI found Rituximab a life saver
After having 2 half doses I was like a new woman
don't be frightened one a year two years never looked back with the GPA yet 5 years on
look after your diet and exercise as much as possible take care of yourself x
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