Tocilizumab ADVICE

sadie84
sadie84 Member Posts: 16
edited 2. Aug 2013, 16:52 in My Child Has Arthritis
my 3 year old son dewi was diagnosed last november, he has been on steroids naproxen and methotrexate. We visited the hospital today, he is being put on tocilizumab in the next 2 weeks as dewi jia is still very active. He is also going to have a mri scan on his chest neck and knees.

If anyone as any advice on this tocilizumba it would be very helpfull? :?:

dewi as systemic jia.

Comments

  • stickywicket
    stickywicket Member Posts: 26,022
    edited 30. Nov -1, 00:00
    I don't personally know anything about tocilizumab but, if you enter the word in the search engine above, some old threads will come up.

    I do hope it helps Dewi.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Sorry I havent any info on it either
    Just really wanted to offer you my support
    Bless your little boy Dewi
    Best wishes
    Maria
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    hi
    Thankyou for your comments. dewi starts his new treatment thursday the 7th, we had a meeting where everything was explained and we had questions answered, this new treatment is hopefully going to work for dewi. he will start with the enfusion every 2 weeks and when they are happy it will go to once a month, they have said that if this enfusion does not work by week 12 then they will stop it and try something else, they seem very hopefull that it will work so everything crossed that it will. dewi has been having a few really bad days where he is waking with pain in his knees which never seems to go away,plus the infection he has been dealing with.
    He is such a brave little man, i just wish i could take the pain away from him as it brakes my heart to see him in so much pain all the time.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I sincerely wish you did not have the need to find us. Arthritis is a cruel condition no matter what one's age but to affect someone so young? Words fail me.

    I have heard of tocilizumab and I think one member of the forum is on it _ she was posting every now and again when she began it but we haven't heard from her in ages, hopefully because it's doing it's stuff. All I can do is wish Dewi the very best of luck, I hope it helps and that things settle down soon. Naturally this is a tremendous strain on you, I hope you have family and friends to support you in this. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,022
    edited 30. Nov -1, 00:00
    So Dewi starts the new treatment tomorrow? I do hope it works well for him. I shall have everything crossed for your poor, brave little man. Please let us know how it goes.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Hi I am 22 and am on Toculizimab

    I have been on it a while now (about 4 months), it did have an adverse effect on me at first as it was working too well and made my white cell count too low. However I am now on half the recommended dose (its done by weight) and am not taking the methotrexate as well and all seems to be going ok - it has been trial and error with getting my dose right as my bloods have been all over the place, however I haven't felt unwell - only having arthritic symptoms coming through bad occasionally, usually when they have left off treatment waiting for my bloods to pick up.

    I will say this though, I have been on a few of the bio drugs and found this one to be the most easy going - by this I mean I have not have any side effects that have made me feel unwell. I feel tired the first day after having it, so I would recommend rest but after that I feel ok. On other bio drugs I have felt quite ill and had side effects.

    I hope your son feels better soon,

    Best wishes,
    Charleeh
  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hiya, I am 20 and have been on Tocilizumab for just over a year now.

    I started on two weekly but now on three weekly. For me it has been working really well so far and I have been fortunate not to have had any side effects from it. The infusions themselves are ok, although do seem to come round quickly. They do not take very long, I am normally there aboout 2-3 hours. I hope it works as well for Dewi as it has for me. If theres any other questions I can answer please let me know.

    Take care, Steph
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi everyone thanks for all your comments and advise, dewi has had 2 infusions now it has improved is arthritis slightly, which we think is great this is the first time in months we have seen a improvement of any kind, we are hoping that this one will work, dewi is still on a high dose of steroids and the meth, they are going to start reducing the steroids next week, which we are glad of in one respect but also very nervous at the same time. Dewi had no side affects the first time and only minor ones the secoind time. Dewi has now got a chest infection so we r opening it will be gone by next week for the 3rd dose, dewi has had this chest infection for over a week now, so fingers crossed it will clear up. Dewi is having infection after infection at the moment, I will post again next week. Thanks again everyone
  • cla1re
    cla1re Member, NewlyRegistered Posts: 3
    edited 30. Nov -1, 00:00
    Hi

    My daughter is 10 and has been on tocilizumab since August 2012. At first it helped a little, then she had joint injections in the November to help things along. Anyway apart from slight sickness and dry skin as side affects she is doing really well, we go every 2 weeks for treatment but are hoping to move to 3 weeks from June. She is off steroids and methotrexate and we are so pleased with how she is doing, since being diagnosed at aged 3 this is the best she has been. She has tried infliximab and canakinumab which only worked for a short period of time but I really do hope your son responds well. When they are so young all you want as a parent is to take the pain away. Please let us know how he is doing

    Claire
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi everyone just to let you know dewi has had this treatment a few times now at the moment it seems to last about 10 days and then the sore joints start creeping back, they are reducing the steroids slowly so he is now on 16 as he was on 20, meth is still 12.5. The hospital is brilliant with him, and he doesn't complain about going as he nows its what is making him better. Dewi will also start hydrotherpie soon which he is looking forward too as we have visited the pool. Thanks to everyone for your messages. Thanks claire hope your little one is doing well and eveything is still going good for you.
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi everyone. What a nightmare these last couple of days have been, dewi has been doing so well he was getting back to his old self and down to 4mg of his steroids and bang he stops walking and his joints are all swollen. Went to gp who up his steroids to xmg which helped a little only one leg worst affected leg is still swoLlen so dewi is now crawling. Should receive a call tomorrow from hospital with what we shoul do. I just don't know when dewi will get off these steroids. At the moment there seems to be so many highs and lows, we are on a never ending fair ride going around and round. Dewi is such a high spirited child and I just wish like every other parent that I could take the pain away for him. I just needed to get that of my chest as my face will be smiling but inside my heart is braking.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Oh, I am so sorry to read this. This is part of the rollercoaster ride that we are all endure, the meds do so much then their effect begins to falter. There are ways of dealing with this but in the meantime things deteriorate which must be so hard for you. ((())) I hope you hear from the hospital and soon - if not then don't be afraid to chase. Please let us know what they have to say. I am thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,022
    edited 30. Nov -1, 00:00
    That must be so hard for you. It's bad enough for us adults when we fluctuate between optimism and pessimism but even more so when it's your little boy.

    There is often a problem in coming off steroids and it does tend to kick in around the 4-5mg point. I think it's something to do with the body needing to up its own production of them and sometimes our bodies are slow to respond and we have to hang around for a bit on a low dose and then decrease so very gradually the the body is unaware of what's happening.

    I do hope the rheumatology people can help. ((()))
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi everyone dewi is doing a little better his consultant has now put his steroids back up to 12 mg and they are discussing streroid injection to the most affected joints. Dewi also needs another mri scan to his kneck as consultant is worried about is neck movements. Is enfusions are being kept at 2 weekly. The never ending roller coaster is still going around and around.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Ah, yes, the arthritis rollercoaster does just that, up, down, round and round with the occasional loop-the-loop. Hopefully the steroid increase will help to stabilise matters for Dewi, please let us know how he gets on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi everyone dewi is still the same but we have hospital tomorrow so we will see what they will say. I wonder if anybody can give me advice I have bought 2 prams for dewi so we can still do the normal things that we do has a family, the pram as broke asgain due to my son weight, my mother wants me to find out about a wheelchair for him but not sure if this is possible or how to go about it. At the moment now he is missing out on things like walking the dog silly little things that we take for granted. Me and my husband are now taking it in turns to walk the dog when he is a sleep not to upset him, my husband tried carrying him on a walk but he is just to heavy. Pleaser any advice would be gratefull. Sadie
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    I apologise for being late to this, other stuff is going on for me at the moment.

    It sounds to me as though you will be in the right place tomorrow to ask about this. Chat to the rheumatologist and maybe he / she will be able to put you in touch with those who can help. I know that the Red Cross hires chairs out, they too may be able to help. An adult on here bought a chair fairly cheaply from *bay, that may be another resource to call upon. Good luck for tomorrow, please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi DD thanks for the help, will look at all avenues. Hope everything is ok. I will keep u all updated. Thanks again to everyone for all your kind words and advise. Sadie
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    I have been thinking of you both, I hope the appointment was helpful. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello Sadie, I hope that your appointment went well and that you have been able to find out a little more about what can be done for Dewi. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • sadie84
    sadie84 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi. Dewi appointment went ok no steroid injections at the moment but they said that they are not rulling them out got to see the consultant every 2 weeks as dewi swelling is up and down, also iron is low they have increased is sytron from 7.5 daily too 15 daily to see how that goes, so next appointment is wednesday. Big thanks to everyone for all the advise and listerning. Sadie
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