Infusion completed: Hi all, finally completed my... - NRAS

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Infusion completed

Ginger46 profile image
9 Replies

Hi all, finally completed my Rituximab/Truxima infusions, I should have had my 2nd infusion 2 weeks ago but sadly our niece passed away so we had her funeral to go to, she was only 37, it certainly makes you think of your own motality, I'll do my best to be as cheerful as her. It turned out I had a water infection so it wouldn't have happened anyway so a week of antibiotics but now infused, sounds like I'm a meal being prepared with herbs and spices haha. The only horrible thing at the moment is the headache that won't fully go away, my usual medication won't touch it, I'm drinking plenty, I have some Vicks that I put on my temples after the 1st infusion but that wasn't much help. I think I might have to ride it out unless I nip in and see the pharmacist I trust to give me sound advice. Oh yes and I've heard from my GP's surgery that you can have a flu jab quite quickly after infusion because it's not a live vaccine, it may not be as effective and it's better for a nurse to do this due to adverse reactions but please check with your own healthcare team just in case as they may have different ideas xx

Rebecca G

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Ginger46
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AgedCrone profile image
AgedCrone

Do check with your RheumyBiologics nurse before you have a flu jab-I'm on rituximab and have been told if I have the FLUAD 65+ vaccine I can't have my infusion.

Prior to that I was told I must have a vaccine at least one month before my infusion,& that I must wait three months after my infusion ......as the flu jab would negate the effects of the Rituximab.

If your GP is anything like most GPs he will know less than you know about Rituximab , so do check with someone familiar with the drug.

My GP put me on the list for a flu jab without consulting anybody, it was only luck that I had a prescription review with a prescribing pharmacist , who told me I should investigate before having the jab which I was due to have tomorrow!

Ginger46 profile image
Ginger46 in reply to AgedCrone

Thanks I haven't even got a clue next time I'm going to see anyone in the Rheumatology department, to be honest I'm feeling a bit left out in the cold xx

AgedCrone profile image
AgedCrone in reply to Ginger46

Please telephone your rheumatology department....ask to speak to one of the nurses, don't just leave a message with the operator.

Make a list of your questions, like can you have flu jab, when can you have an appointment etc.

Unfortunately these days you have to be the one to do the organising to get any attention,

Hope you get sorted.

weathervane profile image
weathervane

Sorry you are feeling so rough Ginger, is it possible your head aches are sinus related? I had terrible sinus problems when I first started rituximab. I now find i can manage it reasonably well by saline spray and steaming 3 times a day when its bad . Best wishes, hope you feel better soon x

Ginger46 profile image
Ginger46 in reply to weathervane

It could well be but the pain is over the top of my head if that could be where sinus pain can spread to x

weathervane profile image
weathervane in reply to Ginger46

Maybe not sinus then , is the pain in your scalp or deeper, if you know what i mean . I had awful pain in the back of my head for weeks , it was sore to touch or lie on , I rubbed on black seed oil and it really helped. I have always found the rheumy nurse very helpful if i have any problems. X

Ginger46 profile image
Ginger46 in reply to weathervane

It actually feels like sometimes on top of my head and sometimes forehead but yes it feels deep, I know what you're meaning. Thanks for your advice though I will look into that x

AgedCrone profile image
AgedCrone in reply to Ginger46

You can get sinus pain referred all over your head, the most common areas are across the face under you cheek bones, or over your eyebrows going up in to your head.

As weathervane says inhaling a few times a day is very helpful in helping the sinus cavities drain & takes the pressure off which maybe what is causing your headache.

I use mentholate & eucalyptus in hot water..some people use Camomile..but I hate that smell.

I hope you feel better very soon.

Jillyanne profile image
Jillyanne

You have to wait 8 weeks after infusion for your flu jab

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