Re: Weird Reaction to Rituximab / Hip Pain

[Guest guest]

I've also had allergic reactions to Rituximab and I understand it's fairly

common. My doctor had me premedicate with Arthritis Tylenol and claritin as

well as solumedrol before the first round. They also injected the line with

solumedrol before starting the rituximab. I started itching a couple of

hours in. They immediately stopped the rituximab and injected more

solumedrol. Then they slowed the drip way down to make sure I could handle

it. The second infusion (two weeks later) they had me take extra solumedrol

the day of the infusion. I still reacted but we caught it early (the first

time I wasn't sure what was happeneing - this time the first twitch we

slowed the drip and added more solumedrol).

My second infusion the same thing happened. Someone else started 30 minutes

after me but finished 2 hours earlier then me because they had to keep the

drip so slow to deal with the allergic reaction.

So it's exhausting to deal with the allergy and all the extra meds but I

have to say it's worth it. I've had so much more energy with the rituximab

and I'm not getting colds every few weeks like I was with humira. It's made

a huge difference. I see my doctor on 7/23 and we'll schedule the 3rd round

of infusions during that appointment.

I have to also say that I'm also having a lot of hip pain. It's not

sciatica this feels different) but it does feel like the nerve gets

compressed sometimes. A chiropractor's been able to help a lot but I am

fearful that there's not damage in the hips. I'm not sure about an MRI as

I'm not think and had a lot of trouble fitting in the MRI machine when my

rheumy ordered a foot MRI (as I've had partial tears in both achilles

tendons). I hope if I need another MRI we can find an open MRI center

that's on my insurance. I probably should look into that before I my next

appointment.

Also, thanks for the info that others have higher blood pressure with

arrava. My bp has always been fairly low but is now " normal " to " high " and

my regular doctor is concerned (she thinks it's my weight but I've always

been heavy and my bp was low until I started on the arrava). I will also

discuss this with my rheumy. I can't tolerate MTX and sulfasalazine wasn't

strong enough for my cocktail so we'll see.

I don't post much but really appreciate the list and hearing everyone's

experiences.

susan in alameda (CA)

Weird reaction to Rituximab....

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Posted

by: " lexi7434 " spine_97@...

<spine_97@...?Subject=+Re%3AWeird%20reaction%20to%20Rituximab%2E%2E%2E%2E>

lexi7434

<lexi7434> Fri Jul 9, 2010 8:16 pm (PDT)

Hello everyone.

I have been active on here a lot lately because I was starting rituximab and

checking out what people were saying, most of the posts were pretty

positive, so I agreed to try. Well I had a dose today and I was premedicated

with Tylenol, solumedrol and benadryl but about 4 hours into it, my heart

started to race, I got kind of dizzy,my heart rate and blood pressure went

up and the nurses said I looked really pale and then my head started to itch

like crazy and it was a horrible, tingly itch. They gave me more benadryl,

but 4h later when it wore off, I searched all the rituxan posts and couldn't

see this happening to anyone else. Anyone had anything like this happen to

them and did you go back for the second dose? If so, what happened then. I'm

so upset, I was there for 11 hours and had a complete meltdown when I came

home.

Advice anyone?

[Guest guest]

Thanks,

After all that, I ran a fever all weekend and had an awful headache and now I

just feel like I've had all the life sucked out of me so I can't say I'm

horribly keen to get a second dose. I don't have much of a choice, I've tried

everything now except Orencia. I had reactions to the last 4 biologics I

tried, but this by far is the worst. How long did you know if it was working.

That's my biggest worry is that it won't work either. ( I reacted to all the

others and they didn't really work for me either).

I'm just really frustruated!

Good luck with your hip pain. Hopefully they'll figure it out soon.

Thanks,

Lexi.

>

> I've also had allergic reactions to Rituximab and I understand it's fairly

> common. My doctor had me premedicate with Arthritis Tylenol and claritin as

> well as solumedrol before the first round. They also injected the line with

> solumedrol before starting the rituximab. I started itching a couple of

> hours in. They immediately stopped the rituximab and injected more

> solumedrol. Then they slowed the drip way down to make sure I could handle

> it. The second infusion (two weeks later) they had me take extra solumedrol

> the day of the infusion. I still reacted but we caught it early (the first

> time I wasn't sure what was happeneing - this time the first twitch we

> slowed the drip and added more solumedrol).

>

> My second infusion the same thing happened. Someone else started 30 minutes

> after me but finished 2 hours earlier then me because they had to keep the

> drip so slow to deal with the allergic reaction.

>

> So it's exhausting to deal with the allergy and all the extra meds but I

> have to say it's worth it. I've had so much more energy with the rituximab

> and I'm not getting colds every few weeks like I was with humira. It's made

> a huge difference. I see my doctor on 7/23 and we'll schedule the 3rd round

> of infusions during that appointment.

>

> I have to also say that I'm also having a lot of hip pain. It's not

> sciatica this feels different) but it does feel like the nerve gets

> compressed sometimes. A chiropractor's been able to help a lot but I am

> fearful that there's not damage in the hips. I'm not sure about an MRI as

> I'm not think and had a lot of trouble fitting in the MRI machine when my

> rheumy ordered a foot MRI (as I've had partial tears in both achilles

> tendons). I hope if I need another MRI we can find an open MRI center

> that's on my insurance. I probably should look into that before I my next

> appointment.

>

> Also, thanks for the info that others have higher blood pressure with

> arrava. My bp has always been fairly low but is now " normal " to " high " and

> my regular doctor is concerned (she thinks it's my weight but I've always

> been heavy and my bp was low until I started on the arrava). I will also

> discuss this with my rheumy. I can't tolerate MTX and sulfasalazine wasn't

> strong enough for my cocktail so we'll see.

>

> I don't post much but really appreciate the list and hearing everyone's

> experiences.

>

> susan in alameda (CA)

>

> Weird reaction to Rituximab....

>

< /message/136573;_ylc=X3oDMTJyNmUxNXEzBF\

9TAzk3MzU5NzE1BGdycElkAzEwMTQ3OARncnBzcElkAzE3MDUwNjE2MTAEbXNnSWQDMTM2NTczBHNlYw\

NkbXNnBHNsawN2bXNnBHN0aW1lAzEyNzg3NTg0OTA->

> Posted

> by: " lexi7434 " spine_97@...

> <spine_97@...?Subject=+Re%3AWeird%20reaction%20to%20Rituximab%2E%2E%2E%2E>

> lexi7434

> <lexi7434> Fri Jul 9, 2010 8:16 pm (PDT)

>

> Hello everyone.

> I have been active on here a lot lately because I was starting rituximab and

> checking out what people were saying, most of the posts were pretty

> positive, so I agreed to try. Well I had a dose today and I was premedicated

> with Tylenol, solumedrol and benadryl but about 4 hours into it, my heart

> started to race, I got kind of dizzy,my heart rate and blood pressure went

> up and the nurses said I looked really pale and then my head started to itch

> like crazy and it was a horrible, tingly itch. They gave me more benadryl,

> but 4h later when it wore off, I searched all the rituxan posts and couldn't

> see this happening to anyone else. Anyone had anything like this happen to

> them and did you go back for the second dose? If so, what happened then. I'm

> so upset, I was there for 11 hours and had a complete meltdown when I came

> home.

> Advice anyone?

>

>

>