Tocilizumab infusions

[angel-delight]

Hi everyone, It will be 2 weeks on Tuesday since I had my first infusion and I am feeling really good. I just had one flare up with my right knee, very swollen and very very painful and that was after 3-4 days of the infusion. It only lasted the one day and the very next day it was still a little swollen but no pain.

Today, I called the clinic and booked my next blood test and two infusions to make sure I could have them before going away. I have to see how the blood test results turn out, hopefully, they will be fine and I will have 3 infusions in total before going away.

I do have fingers crossed that all will go well and I will be able to enjoy several weeks with my family pain free.

Take care everyone, wishing you all well. Sue xx

[shazbat]

Hi Sue that's fantastic I'm really pleased for you, I still think it's a miracle drug ( touch wood ). I hope the blood tests come back fine my friend and you get that holiday x x

[angel-delight in reply to shazbat]

Thanks Shaz, I am really pleased, so far so good. Fingers crossed my next blood test come back OK so I can have my next infusion and go off to see my family in sunny Canada for 6 weeks. I can't wait to get there. My grand-daughters are twins and 9 years old, they are my angels I love them to bits.

I agree it is a wonder drug, I hope I am not speaking too soon. The feedback I received before I had my first infusion was mostly very positive.

Take care Shaz, hope you keep on improving. Sue xx

[shazbat in reply to angel-delight]

I'm doing great it's 7 months now and all is good. Start the injections next week because I had an infusion before I came away will let you know how they go. I bet your so excited seeing your granddaughters, I'm keeping my fingers crossed for you. Take care

Shaz x

[angel-delight in reply to shazbat]

Thank you Shaz, I will keep in touch, good luck with your injection next week.

Take care, Sue xx

[bassiefromholland]

Hi Angel,

Great that your first infusion went ok! I have had three sofar. Some days I feel good, other days more pain and tired, But overall Inam satisfied till now.

I hope your next infusions will go good, so you can spent time with your family. You and your family deserve it!

XxxBas

[angel-delight in reply to bassiefromholland]

Thank you Bas, I have my fingers crossed best I can. Good to hear it is working for you, any improvement is greatly appreciated, I am sure the warmer weather will help improve things in more ways than one.

It will be a wonderful time with my family, we all miss each other and hopefully I can be with them permenantly one day. I have to find out what I need to do as it has been about 18 years since I lived there. But for now I can have a lovely time for six weeks.

Take care bas, I hope you keep on improving. Sue xx

[IainM]

Glad it's going great for you, I'm a little worried it's not working too well for me now, constant agony in my wrists and feet and legs burning all the time, feel like I'm going to have a major flare any day now, although my esr is a constant 2, I'm still in considerable pain with really bad stiffness. I am now off it until my operation which is in less than 6 weeks so time from last infusion to op is 7 weeks, 3 weeks off it to let immune system reboot looking at 10 weeks from now until I can get another infusion lol, then back on it and then off it again to get another op, don't know wether to laugh or cry lol...so glad it's working for you though x

[angel-delight in reply to IainM]

Hello IainM, I so sorry it doesn't seem to be working for you. Do you think it would have been better if you hadn't needed to come off it due you having an op. I hope you can manage with the pain if you have to wait another 10 weeks before you can have another infusion. Has your rhuemy or GP not given you something else for the pain in the meantime. I have been taking oxycodon+Naloxon MR 10mg and 20mg twice a day plus prednisilone, I was on 20mg reducing by 2.5mg weekly to 7.5mg until I see the Consultant in August. I have so far reduced prednisilone down to 15mg and next Wednesday I will reduce it to 12.5mg. So far I am keeping the pain at bay.

I really do wish you well and get some relief for the pain and stiffness.

Take care, Sue xx

[IainM in reply to angel-delight]

Hi Sue, I had an infusion last week so I'm okay for another 2 and a bit weeks, I just mean in general that since I have been on it I have always had pain and flares, I was on injections for 19 weeks and have had 4 infusions, just not sure I'm getting the benefit everyone else seems to get off it lol, I would have hoped for some sort of remission like I got from Enbril, it's working to a degree as 6 months ago I was crippled and couldn't walk, maybe I'm just expecting too much. I can't go back on oxy as it took me months to get off it, I was on 160mg a day and had severe withdrawal, the pain is manageable and tbh I would rather not go back to pain relief unless I really needed it x

[angel-delight in reply to IainM]

Hi IainM,

I think I understand better now, I think everyone's pain level is different, possibly due to you being in such extreme pain, obviously worse than mine, it may take longer to work, I would stick with it and hope after the op's you will start to feel more relief.

I asked on here to see what sort of response people were getting from this drug. The majority were very positive and calling it a wonder drug. I really do hope you benefit from this as well even if it takes a little longer.

I had the same problem with oxycodone I was on the strongest dose times 8 per day and had to come off it, which was hard, but it effected my liver the same with paracetamol, I can't take that either. I was on Enbrel pens and that worked great too until I had to stop the injections due to another health issue, twice, it didn't seem to work after that and my Consultant stopped it, saying he thought it was the prednisilone that was controlling the pain. It has taken a long time to get on the tocilizumab and in that time I felt that I had suffered the worst flare ups ever, having to retire last August managing a retirement development 36 flats. It was a job I really loved doing but my health had to come first. At least now hopefully, I can see more of my family.

Take care IainM, I do wish you the very best and hope the injections start to work better and give you more relief once you have had your op's.

Sue x

[angel-delight in reply to IainM]

Sorry IainM I did mean to say co-codamol, not oxycodon+ that is what I am taking now.

Sue