Started new biologic treatment feel so ill

theresa4
theresa4 Member Posts: 696
edited 5. Apr 2012, 15:01 in Living with Arthritis archive
Well I took the bullet and started my 5th biologic Tocillizumab yesterday.
Went to home and was burning up for hours last night then this morning Im frozen and have a temperature my face is burning . Ive spent most of today in bed shivering :(

Ive emailed the rheumy nurse just waiting for a reply.
Has anyone else reacted to biologic infusions like this? Ive had a different one but not reacted like this.

Hope everyone is well and has been able to enjoy the nicer weather

Theresa x
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Comments

  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    I haven’t Theresa, and I’ve no experience of biologics. I just wonder if you had some mild, underlying infection to start off with that you were unaware of but which has taken exception to the new med.

    Can you get through to your rheumatology nurse by email? Will he/she still be picking them up over the weekend? If it gets any worse I’d check it out with NHS Direct. I hope it doesn’t though.
  • frogmorton
    frogmorton Member Posts: 27,374
    edited 30. Nov -1, 00:00
    Oh Theresa you poor thing!!

    You plucked up the courage and now you feel so dreadful :(

    If you dont get a reply, and you have no information leaflet to read, which reassures you l really would be ringing NHS direct too. It can do no harm to take a bit of advice.

    Love

    Toni xxx
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    Thanks Toni & Sticky for the replies

    I still haev a temperature and no reply from rheumy nurse but have read on a few websites that says it can bring on fever and chills (although not good but not too dangerous) Ive now started with really bad indigestion (I think its chest pain plus lots of burping) Ive had this before when I was on enbrel (other biologic) it got so bad I had to stop the drug, Ive taken lansoprazol to try ease it as that was the course of action previously.
    My hubby isnt happy, I have a light red rash over my nose and cheeks, the chest pain, high temp and generally feeling s*** he feels that this may be a bad move going on it. He says Im just back to where I was last time I did biologics he feels being ill all the time is too much for me.(hes just worried as I havent been this ill for a while and the chest pains panic him because its crippling me and I strugge to breathe) I told him I will see they may take me off it if it doesnt calm down anyway or I will try one more dose in 4 weeks time and see, if I get all this again then I think biologics are just not for me but I dont want to jump into a decision yet as whats left is poor mobility, stomach issues and self care problems at 40 :( not ,much of a choice is it

    Theresa
  • frogmorton
    frogmorton Member Posts: 27,374
    edited 30. Nov -1, 00:00
    Oh Theresa

    it is very bad when no-one replies to your calls and it's important :(

    I can quite understand your husband's worries you know you would be the same if things were reversed. As you say maybe you will be way better now and it will be worth trying another dose in 4 weeks. Shame they don't keep you in a bit longer so they can see for themselves what happens. Would that be an option?

    I can also totally understand your own view too. Pain and poor mobility is dreadful and not being able to look after ourselves properly too :(

    Thinking of you

    love

    Toni xxx
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    Hi Toni

    I dont think they can keep people longer as the reactions can take 48 hrs to materialise. Im ok now though still got temp but not as bad.
    Walked dog this morning with m hubby just a short one to get some air as he is away the rest of the day and he didnt want me housebound al day.
    One of the dogs we jnow ( a muscly staffie) Bruno decided to launchn himself at me today to get his cuddle which put me straight on the floor. I havent seen him for a while and he got over excited. Normally I brace myslef but was too wobbly to start with today :( My dog got so cross and growled at him for hurting me :) The poor teenager who walks him was so embarrrassed and upset hes so lovely, I dont know who was more embarrassed though me or him really it cant have been a pretty sight me hitting the ground :oops: Needless to say Im at the mercy of my teenagers for the rest of the day as I cant walk especially since I sat down and the pain really kicked off :? My hubby was so worrried about leaving me.

    well im off to sleep with pain dullers now

    Theresa xx
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Well, that does sound a bit better, Theresa, if you've managed to walk the dog. These side effects can be very scary but I hope you've turned a corner now and the med will do its job.

    Dogs? No. I love 'em but can't do 'em - especially the exhuberant ones, or even little ones that get under your feet. Staying upright is enough of a challenge without them.

    I hope the rest helps and everything calms down a bit more.
  • barbara12
    barbara12 Member Posts: 21,234
    edited 30. Nov -1, 00:00
    Hi Theresa
    I am so sorry you are having such bad side effects, it must be so scary,the worse part must be not being able to talk to your Rheumy
    I really wish I could help with some advice, I am just hoping that they work for you, and the side effects are just a one off.
    Wishing you well with it all x
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    We all know these are strong meds and they can have the most appalling effects on one but poor you, how awful. I hope that you do hear from the rheumatology nurse soon because something does not sound right and I am pleased to hear that you are starting to feel a little better. Your husband sounds as though he has been supportive and that too is a good thing. I wish you well. DD
  • frogmorton
    frogmorton Member Posts: 27,374
    edited 30. Nov -1, 00:00
    Glad to hear the nasty effects are easing off for you Theresa and that you managed a walk even if it did backfire a bit :(

    I hope you recover from hitting the deck sooner rather than later.

    l saw the sweeeeetest little staffie puppy this morning she was so lovely :D

    Love

    Toni xxx
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Theresa

    So sorry you've been feeling so unwell after your infusion . :roll: you are right to have contacted rheummy as any kind of reaction has to be reported ; but it is disappointing that the rheummy didn't get back to you! :(

    I'm on Tocilizumab too... I was on it for 3 months last year before having my knee op in Oct12.... re-started it in December and now onto my 5th infusion.
    It's my first biologic, although I have had 3 anti-tnfs' in the past (Enbrel, Humira and Infliximab). :wink:

    I've found Toicilizumab really effective and definitely feel that it is working for me. I do feel tired and a little nauseous after the infusions but have never had a fever/ the side effects you've had. The only down side for me has been a greater tendency to get infections... and for these to be slow to clear.

    As sticky suggested... perhaps you had an underlying infection at the time of getting your infusion?... I had similar when on infliximab and had a nasty reaction during that infusion.. what my rheummy called a 'toxic reaction' rather than an 'allergic reaction'. (part of the reason you have to phone in prior to infusion to let them know if you are well/ unwell) It was days later that it became clear that I'd had a chest infection 'brewing'.

    I'll keep everything crossed for you Theresa, that things do settle down so you are able to continue on your biologic.... and that you get a good result from being on it!

    Iris xxx
  • lindalegs
    lindalegs Member Posts: 5,425
    edited 30. Nov -1, 00:00
    Hi Theresa,

    I, too, am glad things sound as though they're settling down again though you do need to speak to someone from your Rheumy team before your next infusion. Can you ring the hospital tomorrow and speak to someone?

    Bet you're dreading your next dose!

    Hope it helps your pain in the meantime.

    Luv,
  • julie47
    julie47 Member Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi theresa

    just wanted to say that I hope the side effects are now wearing off and that today you are feeling much better

    Take care
    ((((((()))))))
    Juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hello, how are things now? As you haven't posted I am hoping that everything is as OK as it possibly could be. DD
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    Hi DD, Julie, Linda, Iris, Sticky and anyone else i have missed

    Sorry for worrying you Im ok well In lots of joint pain but ok my internet went down and I couldnt reply from my iphone. (It wont let me log in at all)
    The temperature has settled down again and the heartburn has stopped I have got a red raised rash on both elbows and red across my nose and cheeks still but I can cope with that. I feel really tired and in alot of pain withn my hands and feet but no sign of any infection so I think it was a reaction to the infusion :? As long as its only a few days and it doesnt get worse next time I can cope with it. ( I think) as long as it starts working.
    many thanks for your support

    Theresa x
  • lindalegs
    lindalegs Member Posts: 5,425
    edited 30. Nov -1, 00:00
    Hi Theresa.

    I know you have sero-neg RF but your last symptoms got me wondering because as you have a rash across the front of your face and your hands and feet are painful, these are signs of Lupus, another form of arthritis. My sister has Lupus and when she's been in the sun even for a short time this rash appears across her nose and cheeks and is very itchy, it's called a butterfly rash. She also has painful feet.

    Now I'm not saying you have Lupus but it might be worth mentioning the rash to your rheumy nurse as you could need different meds to the ones you're having.

    Please let us know what happens.

    Luv,
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    It has been considered but nobody ever extended on it maybe my bloods dont support it ? they dont my RA.
    Despite knowing this I didnt put the 2 together til you mentioned it. :oops:
    As for the sun I burn so easily I didnt when I was younger but since early 20s I have.
    The biologics can also cause butterfly rash lupus symptoms occasionally so it could be anything. Ive emailed all my symptoms to the rheumy nurse as yet no reply but i dont feel its urgent enough now to ring as all the symptoms have gone down.

    Many thanks for your support LInda

    PS for all reading my post
    My internet keeps going down so if I dont respond please dont think Im ungrateful or rude in not replying I will get back to you as soon as technology allows
    Theresa
  • BikerAngel
    BikerAngel Member Posts: 122
    edited 30. Nov -1, 00:00
    Hi guys,
    Theresa I am glad you are feeling better, my friend is just away to start infusions not sure what one but the anti tnf did not work for her. I am just away to start Humira so fingers crossed it works for me. Good luck for your next lot and hope it is not as bad for you.
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    Well no reply from rheumy nurse from the email I sent friday and the red rash on my cheeks and nose are really angry red now. I rang the ward as its not calmed down it just goes lighter then darker, they told me to take antihistimine and they spoke to rheumy who says none of my symptoms are likely caused by the infusion and to see my GP.
    Now ok I admit it could be coincidence but I googled my reactions
    red rash
    headaches
    heartburn (severe)
    temperature that goes off on own
    exhaustion

    and all have been known to be caused by tocilliaumab so I dont understand why they would say that???? Its worrying that they seem to be dismissing the very things the booklet tells you to phone up about. I know having bad reactions will make the data look bad on the meds but Im a person not a guinea pig. ( not that I advocate testing on guinea pigs )
    So tomorrow Im seeing my GP who is goign to ask when did this start, have I eaten, drunk, taken, changed washing powder any different than usual and the only difference is the infusion which seemed to be the catalyst in these symptoms although exhaustion is normal for me but it does seem worse.
    on top of that my bowel has kicked off again and I dont know if thats the infusion or just my normal bowel problem getting to grips nw the steroid has truly gone. Im supposed to let them know about bpwel problems but whats the point I dont think they are interested at all, Im feel like a hypochondriac and wish Id never started on this biologic I should have listened to myself in the first place :( Hopefully I will get an appointment with my nice GP tomorrow I have to ring first thing for an appointment. I need to decide whether to take my methotrexate or not now in the morning??????

    Theresa
  • lindalegs
    lindalegs Member Posts: 5,425
    edited 30. Nov -1, 00:00
    Your rheumy team sound as though they're not up to speed, maybe your GP could talk to them?

    I know this is probably too late but I would wait with the Mtx till you've seen the doc.

    Hope you get some positive feed back from him/her.

    Luv,
  • BikerAngel
    BikerAngel Member Posts: 122
    edited 30. Nov -1, 00:00
    If you are on that treatment then your GP should get you an app right away thats what my nurse told me you have to insist so please don't let them fob you off insist you get an app and just tell them all that is wrong and that it happened with the meds and don't fee like a hypochondriac as we need to make them aware of how things are as it might be imprtant. Good luck hun xx
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    Hi thanks for your reply biker angel and linda and tilly

    I went to the GP this morning they are really good there I get seen same day or next morning usually now.

    The hospital should be on the ball as its one of the major research hosptitals for the country in Rheumatology. They have a large budget(well had a large research budget) and are the ones doing the testing of new drugs. I think they are being cautious so not to upset the data for this groundbreaking drug.

    My GP understood I felt they are being underhand and not being open about the problems of the drug. Especially when the symptoms are listed on websites as problems of tocillizumab.
    She has told me to write all my symptoms down, and for this time we will manage the symptoms with other drugs lansoprazole for heart burn, Paracetamol for headsches, citirizine for the rash ...and so on.........

    Then if it happens again on the next infusion (then it will confirm the problem) it will come down to a decision of what Im happy with or not if thats the case. :roll:

    It is still a worry if the next reaction is worse, my face is still red and sore and I had plans to go out with my friend friday for a meal as long aswell enough but I dont think I want to be seen in public I look like ive got the lurgy :oops: :shock:

    Had written this prior to your post tilly, This is exactly what I worry about as this has happened before with Enbrel when I was hospitalised as they thought I was having a heart attck, it turned out to be severe heartburn reaction to Enbrel. They put me on lanzoprazole. They said no way was it the drug yet it all went away when I stopped (due to it not working anyway) It desnt fill you with confidence really.
    Please dont anyone worry and avoid the biologic route becaause of my reactions it works well for some
    I am a complex individual with several allergies and intolerances (the list keeps growing) Its just important we as patients keep some control over our treatment and not be fobbed off when we know!! that something is not right becasue of the treatment we are recieving and remember that sometimes the doctors have ulterior motives that they really shouldnt have.

    Thankyou for all the support

    Theresa
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    It's not all good news, Theresa, but it sounds like your GP has a plan and is working hard with you. That's very good indeed. I hope the next infusion goes well.
  • ironic
    ironic Member Posts: 2,386
    edited 30. Nov -1, 00:00
    Hi Theresa,
    I am pleased that you have such a good GP and they are keeping a good eye on you. I have no experience with other than mtx so cannot help with your current meds.
    I do hope the rash will have settled down for you before Friday as it would be nice to go out with your friend for a couple of hours.
    Gentle hugs,
    I x
  • lindalegs
    lindalegs Member Posts: 5,425
    edited 30. Nov -1, 00:00
    I'm so glad you have a great GP who listens and responds but it won't alter the fact that you'll worry when its time for your next infusion.

    I really hope you can face your public on Friday as it would do you good to go out with a friend ...............I know it always gives me a lift.

    Hope your botty's behaving now too .....just what you needed on top of everything else Theresa! :roll:

    Fingers crossed things will settle down soon, including the pain.

    Luv,
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    Hi all
    well dont I just feel worse.......
    some of you may remember my problem with a certain rheumatologist who was a condascending b**** well I've finally had a reply from my rheumy nurse to tell me the same said rheumy wants to see me before my next infusion :shock: :?

    I really do not want to see her but tocillizumab is her baby or at least it was last year so I assume it still is. How do I say I refuse to see her? They could chuck me off the service as there is no guarantee in biologics clinic that I wont see her at some point they all run it together. I like going to the hospital (its over the road from where I live) and I like my rheumy I was changed onto but she is not in charge of biologics clinics although she works them too and if I end up coming off this one I will go back to normal rheumy clinic and the nice rheumy, the other one (horrible one)is young, slim, and sticks her nose in the air and treated me like I was a liar and making up my pain levels (oh no she actually said well your pain tolerance might be low!!) yeah Ive had 4 kids no pain relief, used to lift on building sites like most of the men, did judo, karate etc...
    I cant believe something so silly has floored me, Ive already been in tears and I am so angry with myself as Ive learned to accept each day as it comes bad days are bad days good are good I cant change them either way, I was so proud of myself for reaching acceptance, and now Im dreading this appointment on 17th April.
    a very worried and upset
    Theresa

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