Tocilizumab Infusions

I have been told I will have to wait to start the above infusions due to shortage of beds in the local Hospital. Several people on here have advised they had to wait 4 months for the first infusion. I need to go overseas in August. I have only just been approved and if I have to wait 4 months it will be mid September before my first infusion. I will need to have the infusions for at least a month before I can travel and also to start reducing the steroids as they are causing my feet and legs to swell which makes it difficult to fly. I would be interested to know how many people here in the UK had to wait to start the infusions and for how long? I realize each hospital will have different waiting times, I am located in the Greater Manchester area. I would like to start on injections as that would be more convenient but I have been told that would take even longer to organize.

I would appreciate any advise given.

Many thanks, Sue

25 Replies

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  • Sue I waited weeks ask them if you can come to Rochdale. If your in the Pennine Acute Hospitals Trust you can go to any of the infusion units. Many from Manchester are coming to Rochdale, because the unit is brand new, the nurses are superb and they don't cancel appointments like the Manchester hospital keeps doing. Once patients have been to Rochdale they don't go back to their own hospital. Shaz

  • Thanks Shaz,

    I will contact my Rheumy clinic to find out. I did have a reply to an earlier post saying they went straight onto injections, but they had to collect them on a monthly basis, which is not a problem, I would do that.

    Many thanks, Sue

  • I finally got movement on mine sue, the prescription has just been sent to Bupa to deliver 3 months at a time. Don't give up I went to pals and copied the chief executive. As you know it took me months but it should be easy for people in this authority now because the finance has been passed. If you don't get anywhere complain to PALS and copy the chief exec.

    Shaz

  • Hi again shaz,

    So glad you have got the delivery organized with Bupa for your injections. I have just heard from my Rheumy nurse it will be

    June when I have my first infusion, the person who does the infusions is on holiday and they are without a replacement, also the ward is being refurbished but they are looking into having a different area they can use in the meantime. My Rheumy nurse told me to stop worrying, but if I was told this in the first place, I wouldn't need to worry.

    Take care Shaz, all the best.

    Sue x

  • This is the problem I had Sue. They don't give you any information, that's why I went as far as I did, I'm a customer of the NHS and as such I wanted answers but I was being ignored. Now finally it's moving. Good luck my friend hope the drug works, I think it's brilliant x

  • Hi Shaz,

    I have just come off the phone from speaking with the secretary at my rheumy clinic and as she works with the pharmacist at my clinic she advised that the person who gives the infusions is on holiday and they are unable to find a replacement, plus the ward is being refurbished it will be several weeks not months for me to wait for my first infusion. I was also advised they wouldn't refer me to another hospital and that would take longer. I then asked about the injections, I was told my clinic are still waiting for funding, now that was different from what I had been told previously. My rheumy nurse did say she would make sure I had an additional infusion just before

    I leave to go overseas and again when I return.

    I am waiting for the nurse to call me later today, although, if the secretary is correct

    I should have my infusions in time.

    Many thanks Shaz x

  • I waited a month for my first infusion, I have been trying since November to go onto injections but no luck so far. I felt an improvement from the first infusion though and my crp is less than 4 and my esr is 4, so apart from losing a day off work I don't really mind the infusions every four weeks.

  • Thank you for your reply Ozzy, I can't wait to start the infusions, the only reason I would like to be on injections is the convenience when travelling overseas. As long as this medication works for me I will be happy. I have had really good feedback which is great and if it reduces the level of my pain that is great too. Hopefully the infusions will start in June.

    Take care, Sue

  • Interesting to read about the waiting times in Greater Manchester! I used to live in Middleton, but moved to Cornwall in 1997. Here in Cornwall the waiting times are dreadful and this winter there have been loads of operations cancelled at short notice. I thought it was just down here, but obviously not! However, our hospitals in Devon and Cornwall came out the worst for not meeting targets and have now been fined, which is ridiculous as the only reason they haven't met the targets is due to shortage of funds!

  • Hi sheltielife,

    I have seen on the TV news about Devon and Cornwall hospitals not meeting targets. I had read on here that some have to wait about 4 months to get the infusions which if my own clinic had given me the reasons for any delay, I wouldn't be worried.

    It is all about targets and shortage of funds for most hospitals, my clinic is still waiting funding for the injections.

    As you will have possibly read, I will have my first infusion in June, fingers crossed gently, which hopefully, I will now be able to travel later in the year.

    Take care, wishing you well. Sue

  • Hi Sheltielife

    I come from Rochdale we don't have a problem for the infusions there is now a purpose built unit at Rochdale. It's fantastic, big leather chairs everything brand new and the staff are fantastic. They are actually dealing with people from the Manchester Hospitals, I don't think Sue is in the same Trust. And I agree with Sue the only problem I have with the infusions are we can't travel. After working for 38 years I'm damned if RD is going to stop me doing that. I have to go slowly but it's freedom.

    Shaz

  • Hi Shaz,

    Good for you, we have to make the most of good days but at the same time take care not to over do things!!

    Sue

  • Sue you now sound like my husband lol. I get to Bulgaria think I can do anything then suffer for 2 weeks.

    Shaz

  • I have lived and worked in Rochdale. Actually, it was Norden I lived for 6 years. Fortunately, in those days my husband got private health insurance with his job that covered me as well and so anything health wise was at Highfield, a palace in those days, more like being in a hotel. I love living in Cornwall but not when it comes to hospitals! Mine is 25 miles away and as angel-delight says it's been on TV news, I didn't know it was on the National News though. As for infusion I only looked out of interest, as I haven't been offered it. Not being able to travel wouldn't bother me, I feel like I am on holiday 100% of the time as I live on the North Cornwall Coast.

  • I am also in the Greater Manchester area - I waited seven months but it has been worth the wait - I have had just two infusions and the results áre outstanding I feel so much better the swelling has gone and I can almost move without any pain whatsoever . Good luck x

  • That is great to hear, sorry you had to wait as long as you did. I have been waiting a long time already due to taking steroids which effected the tb blood test and caused it to fail after taking the blood test twice and then having to wait over 5 weeks for an appt to see a specialist to be assessed. Fortunately, he approved me to have the infusions.

    I can't wait to get started as the feedback has been great, some saying it is the best medication to date, all but a couple have been very positive.

    Take care, all the best. sue

  • Hi again 1957, I forgot to ask if you have had any more infusions sign your post 16 days ago. I hope you are continuing to walk about with even less pain since then.

    Take care, Sue x

  • Next one is Monday - yes it's still working well

  • absolutely poor service that you have to wait without any clear information...what about choice!

  • Hi Pollock, Unfortunately, the steroids that I have been taking which do help me get out of bed in a morning and what has helped with the flare ups have also caused me most problem with blood tests. I can't wait to start reducing them and that can't happen until I have been on the Tocilizumab for about 12 weeks. My Rheumy nurse is checking with my Consultant to see if I can reduce them sooner, but that depends on how well the tocil works for me.

    I am doing my best to stay positive as I have received very positive feedback, some calling it the WONDER drug, hopefully, I can call it the WONDER drug too and it will be worth waiting for.

    Take care, wishing you well. Sue

  • as we know, we all have diff responses. I have been on it about 2.5 years now- works v well for me. I have had most of others and had differing responses - this is best and longest period yet for me... Wishing you the very best of luck. Ps we have started a NRAS support group - meet near Manchester centre - Salford edge... v welcome

  • Can you give me details of exact location. Pleased you are good with your treatment so far.

    Take care, Sue

  • Hi, I went to see my GP today to find out if it was OK for me to fly overseas later this year, he said it was fine as I am on warfarin and seeing as I will be having the infusions in June and I can reduce the steroids beforehand the swelling should come down in my legs. He said he will write a letter to the airline advising that I need an isle seat so that I can get up and walk every hour as it is a long haul flight. He was very helpful and also said he make sure I have 2 months of my meds to take with me. I now have something to look forward to. I hope the weather here improves as I felt better last week when the temp went up and we had sunshine.

    Hope everyone is feeling better and in a lot less pain.

    Take care, bless you all. Sue xx

  • Hi I was on injections for 18 weeks, it took around 12 weeks to have any effect, unfortunately I was getting bad in site reactions so they put me on infusions a week after my last injection, now had 2 infusion and it's great, I was advised not to travel as I was at a critical stage of my treatment and I am glad I didn't as I still have a few problems to contend with. I live in Glasgow and can't fault timings etc...hope the infusions help but as I found tocilizumab can take a time to work as with other treatments, this also the only treatment I am on after failure of almost everything else..it is also my 3rd biologic..I hope it works quickly for you.

  • Hi again IainM,

    Good to hear from you again, the only medication I have had a problem with side effects from is MTX. I was on Enbrel for a long time but had to stop several times due to other health issues which had nothing to do with RA. My Consultant stopped the Enbrel injections as they stopped working which can happen when you have come off them several times. The injections worked very well for me in the beginning with no side effects at all, so I am hoping that the Tocilizumab infusions will do the same. seeing as I didn't have any problems with the actual injections I will eventually try those but as they have not yet finalized funding it will be when I return from my trip.

    I will have a couple of months of the infusions before I leave and both my GP and my Rheumy specialist nurse both agree I will be able to fly.

    I am taking warfarin for 2 blood clots so I am safe on that score, I will be able to reduce the prednisilone before I leave also and that should help with the swelling in my feet and legs.

    I have received very positive feedback on here regarding Tocilizumab and mostly how quickly, approx 2 weeks for it start to give them pain relief, calling it a WONDER drug, I am hoping it will do the same for me. I know we are all different and respond to any/all the drugs for RA in different ways. I always consider that we have other health issues which interfere with RA medications.

    I thank you for your concern and hope that you continue to improve on your infusions.

    Take care, bless you, IainM

    Sue

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