Ritixumab - Side effects!!!

[gwenllian111]

Hi guys

Had another Ritix infusion last week, and ever since have felt quite poorly, but getting worse all the time. I've been feeling faint, seeing black spots in my vision, loss of appetite, chest pains, and since yesterday, stomach pains, like the glands in my stomach are up, and quite painful.

And I found this about Ritix side effects online;


Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:

stomach area pain
unusual bruising or bleeding
sore throat, fever, chills, or other signs of infection
chest tightness
joint pain or soreness
I have all these symptoms! Why are these symptoms so particularly important, what complications do they point towards?

I feel rubbish anyway.

I had my bloods done at the hospital today (didn't see a doctor, I was just told to have my bloods done this week as I was neutropenic last week).

I don't know how much longer I can put up with feeling like this for. I'm really struggling now.

Hope you guys are all OK

xx

[elephant]

Gwen, did you tell your doctor. Having chest pain means a trip to the emergency room. Don't ignore these symtoms, need to get to a doctor soon. Call now!

[gwenllian111]

it's more of a chest infection type pain than what i would imagine a 'heart attack' pain to feel like though. but my stomach pain is awful, feel quite fluei[sp?]
sorry for the big moan i don't know who else to talk to when i get like this :-(

[elephant]

Gwen, I am glad you are talking about this. Did you call your doctor?

[gwenllian111]

It's early evening here now, so i've rang the out of hours GP service, hoping to see a GP later on tonight. I probably just need some anti biotics.
But, since being on line, i've read up about the warnings of taking ritiximab - some of it is not good!!!! Shocking stuff, lol.

How are things going with you?

[elephant]

Things are going pretty good. Sorry Gwen that it is night time, I forgot about the time difference. I hope you see your doctors soon. Thank goodness you looked it up " the side effects" and who knows it could be something else. As a RN we always told our patients, " Any sign of chest pain they have to be seen immediately". Like you said it could be infection, but it could be a reaction to the medicine. I hope you get some relief soon. You have been through enough.

[Sangye]

Gwen, I just saw this. Please call your doc asap in the morning. The most likely thing is infection acquired by being neutropenic and then receiving rtx. It could easily become pneumonia if it isn't already.

[jola57]

Yes Gwen, you are ripe for a bad infection so let us know what happened at the docs. Hope he gave you double antibiotics.

[gwenllian111]

Well, I went to the go about anhour after my las
t post, ang got admitted to hospital with barrier nursing. High temp,
vomiting etc. I'm on iv broad spectrum anti biotics but if I'm
honest I feel worse than ever. Oh well it's the best place to be
so I'm told :-). I'm missing my daughters fifth birthday whichis horrible.
Just had arterial stab and waiting for the results as myblood ox is low
and there was talk that I may have a fungal lung infection, lord only
knows x

[Sangye]

I'm so sorry to hear what you're going through! I'm glad you didn't wait to get to the doc, though. I hope they do a sputum culture if you're coughing up anything to test. Hugging you from far away, sweetie. Hang in there!

[DEE]

hi gwenllian sorry to hear your not so good just recovering from hospital spell myself
but as you say and our nagging friends say best place for you
keep chin up hope you start to feel better soon DEEx

[elephant]

Hey Gwen, looks like they are taking good care of you. Sorry you have to go through this. Once your better you can throw a nice party for your daughter. Keep us updated.

[TBulger]

Gwen, Sorry you are going through this. It is a great lesson for all of us. We all want things to go well and have a tendency to minimize what we are going through. The naggers on the forum are right!

Don't worry about you daughter. Five year old daughters love to have a second birthday!

[Luce]

Gwen, sorry you're having such a miserable time. I thought you had to be feeling pretty crappy after your Facebook post, you're not one to complain on there unless things are bad. Glad you're in the hospital, it really is the best place for now and I'm sure your little girl will understand.
Hope you're feeling better soon XxX

[gwenllian111]

I'll be honest, I am really struggling now. I'm on IV antibiotics which as my consultant put it 'is like running Dettol through your body'. It makes me feel sick, and wiped out, but the worst thing is, i just want to go home. I tried to dishcharge myself today, but the doctors wouldn't sign the form. My neutraphil count is 0.3 and apparently has to be 1 before they'll even consider discharging me. I am at my wits end, I really am. I miss my husband and children desperately. I'm in a room in isolation, reverse barrier nursed, and I only go out to have a shower each day (even though i'm not allowed to do that either, but I do anyway, I am a terrible patient).

I keep crying, feel like banging my head against the wall. I'm too scared to leave, in case I develop sepsis and die, so i'm so nicely told. I just want it all to be over, i'm not a strong enough person to deal with it.

My husband visiting me is the only thing that keeps me sane. I miss them all so much. I know it sounds depserate, but coming on here and seeing your posts actually helps keep my sanity.

[DEE]

hi gwenllian i know how your feeling at the moment after just spending nine days inisolation with barrier nursing while they sorted blod clots in lungs
i did not manage to escape for a shower until the ninth day and was only alower to cross the corridor to use the toilet athere was not one in my room
please be brave and stay and have your treatmrent i know its hard but its our only way forward
my hubby kept intouch while i was in hospital as could not and as you say it is good sauce to get thoughts
out of your head tacke care of you wishing you a speedy road to recovery
DEEx

[TBulger]

Gwen, My heart breaks reading your post. There is nothing worse than the feeling of loneliness that this horrid condition can force on us. I have recordings of my 18 yr old autistic daughter and my 6 yr old grandson that help me get through the lonely times. The sound of their voices sending me an encouraging word lifts me like nothing else.

Stay strong and think about the birthday party you need to throw for your daughter when you get out. What is it that five year old girls are fascinated with now? I remember my youngest following me around the yard with a Playschool bubble machine lawnmower at age five.

You are in my thoughts and prayers.

[Brooke]

I too am sorry to hear you are going through this, no fun at all. Try not to think about what you want to be doing or what you could be doing, it will probably just drive you crazy. Just relax and let them take care of you!! Try not to stress yourself out. Think positive and stay strong!!
I am also on Rituximab and do not have any side effects, so hopefully you will be feeling better in no time.

[elephant]

Gwen, I am so sorry you are feeling horrible. You will be out soon. You will make it, you are strong. Thinking about you.

[Sangye]

Aww Gwen, your post got me all teary-eyed. I know that kind of sadness.

Here's an exercise that my therapist taught me to help myself through tough times: Think of a time in your life when you thought you couldn't keep going. We all have them-- deaths of loved ones, financial crises, loss of friendships, etc.... Really try to remember the details and how overwhelmed you felt. Don't let yourself judge it like "I was just overreacting then." Your feelings were the same as they are now--just as big, just as real. Then remember how you started to feel better. What did you do to allow that to happen? Remind yourself that you have those same tools now. Then ask yourself what it is about you that allowed you to survive it. You might list things like "I'm courageous." Remind yourself that you still have those qualities.

It doesn't take long to do this and you can do it in your head. It always works for me. It doesn't make the depression go away instantly, but it opens the door to hope again. It calms my mind and reminds me that I'm not helpless and I have ways to overcome things. You can do it, Gwen. You've been through SO much. You have a long list of tools and attributes that enable you to survive.

I wish I could be there to give you a big squishy pred hug.

[Lola]

Oh, Gwennie,

I know a bit about how you feel, but can only guess the rest of it. You are strong and I know that you'll take good care of yourself in order to get home as soon as possible. Being a mother away from her babies is so painful and frustrating. Just know that we're all thinking of you - I will pray for you.