2nd update after 1st infusion.....

[GranAmie]

1st was on 23rd july and in all it took 10 days to recover; next is on Weds 8th august but hopefully am more prepared now. btw thanks Aged Crone - the nurse said it was a mild tranquilliser but it was actually anti-histamine , so that's probably what knocked me for six.... dozy, dizzy etc. I will try to be tactful but will query the need for this on Wednesday. Now all I want is to get it over with and get back to the pool. Him indoors was so relieved at signs of back to normal [ordered 3 prs of shoes / boots in pavers sale] that he booked 2 more hols in that hotel with a small safe bay to swim and the ayurvedic facials [ :} squared LOL]. can't find a practitioner in N Ireland, sadly. So Pollyanna is waking up again. ie for the youngsters - am feeling optimistic again atmo. still fat fingers, bruised? knuckles, wrists, toes and ankles but cd be worse. wishing you all some pain free days xox

[GranAmie]

I did eat , but awful soup and baked potato ... and dark dark choc, but will take my sort of food next week. Can't believe smoked salmon banned, tho won't miss soft cheese as much. I think it has to have been mainly the anti-H so will ask them. Glad your hands /wrists are getting there. Take care GAx

[cathie]

I’ve been taking rituximab for several years now. The anti histamine is to stop your body from reacting against it. So there is a good reason.

[GranAmie in reply to cathie]

thanks Cathie - knowledge is power isn't it. good ofyou to take time t reply. I'd never had anti-H before ! xx

[phil_54]

Hi GranAmie, The anti histamine tablets are for potentially protecting you from any possible allergic reactions to the infusion, sorry to hear it took you a while to recover, I must have been a bit luckier i felt fine the day after it was only around the following Monday i had a blistering headache all day which only cleared late evening, the next few days i just felt really tired and wiped out, Good luck on Wednesday the nurse told me the 2nd time is a little quicker but only 30mins or so all they do is increase the rate of the drip from the start.

Hope all goes well for you mine will be this Saturday.

Cheers

[GranAmie in reply to phil_54]

thanks phil - good to know ! Glad you are ok now, too. Good luck for Saturday too

[GranAmie]

I was given a listof stuff to avoid while on Rtx [Truxima] ... any processed meats [ nitrites? nitrates?], ready made meals, bought sandwiches, smoked salmon, soft/ blue cheeses like brie, gambozola, etc. But once I've settled down i may take smoked salmon as i know the processor so it's not via supermarket etc. I'll check it out on Wednesday tho' as the rheumy nurse in a different hospital gave it to me. Bit of a b##gg#r ...

[cathie]

No problem! Here in edinburgh we get the antihistamine plus a steroid infusion. I queried the latter because it increased my blood sugars which wasn’t good for diabetes but they explained that it helped to boost my immune system which rituximab can hammer. So I kept checking and took a bit more insulin to compensate.

[GranAmie in reply to cathie]

yes, that's what they gave me - plus 2 paracetamol - before the infusion. i now know they gave me Truxima which is a biosimilar, and warnings to abstain from processed foods, ready meals [neither of which i use]and to avoid smoked salmon, soft or blue cheeses. poor A. Crone got a scare there but thinks it's because i get the biosimilar, not RTX. at my age , 75, i'm grateful they even considered me for it, given the state of the NHS. wishing you painfree days x

[cathie in reply to GranAmie]

I might ask about this because they've never mentioned it to me. I did find though that after waiting for about 10 mins in quite bright sunshine for my husband to pick me up afterwards I had a photosensitive reaction. I am inclined to this, but will be careful in future.

[oldtimer]

The blanket ban on foods that might possibly be contaminated with bacteria is a bit stringent! I don't think most people are advised to do that, although taking sensible precautions against infection is one of the things we all think about while on immune suppressants. Washing hands carefully and frequently and buying any prepared foods fresh and from reputable places seems enough to me - I can't live my life in constant fear of infection!

[helixhelix in reply to oldtimer]

It does seem so variable what people are told. Yes all biologics increase risk of listeria and salmonella in particular, but you can pick these up from things other than soft cheese etc anyway. According to government health site raw spouts are a source!

I wonder whether it relates to the general health of the individual patient? Granamie is 75, so perhaps they felt a bit more fragile and potentially higher risk?

But good food hygiene is important to all of us RA'ers...I make sure I know where my food comes from and how it's stored, so do eat things from the "high risk" category but generally only from quality producers with certified health standards.

[GranAmie in reply to helixhelix]

Fragile ? moi? 1.73 cm and 75kg and 30 lengths almost daily? ... apart from my natural indignation I can see that's a very valid point, HH tho' i do struggle to subdue 'i can manage' when i sometimes can't... I'll get another copy of that food list and post again. However, 2nd infusion went well, abt 5 hrs, slept 2hrs there and 3 hrs later and am feeling pretty good, so vivid imagination and too much neuro knowledge probably combined to raise stress levels at 1st session. Thanks again to you all for support, info' and giggles. night all xox