Tocilizumab

Hello, I have had RD for approx 20 years taking various medications but I haven't heard of Tocilizumab. I was wondering if anyone has any information on this medication and if it worked for them. I realize everyone reacts differently and what work for one doesn't always work for another. I am seeing a doctor at the Rheumey Clinic tomorrow that I haven't seen before. I do have several questions I need to ask him but any info that I possibly haven't thought to ask would help. I was told I will need to be assessed again by the Biologics Nurse I usually see at the clinic. It is my Consultant who suggested that I would then be put forward for Tocilizumab assessment via the biologics clinic.

I have googled the medication and went on the NICE website, that was mostly regarding the cost of the medication.

Any information would be appreciated.

Many thanks, S

21 Replies

oldestnewest
  • I have been on infusions of Tocilizumab since June. My ESR and CRP are now below normal as its worked so well at stopping any inflammation. Somebody else on this site has just been offered this drug via injections but I don't know how easy it would be to get them as for me the only downside is a day off work every 4 weeks to get to the hospital for the infusion.

  • Hello Ozzy,

    thank you for your response, I was wondering if it is given by pen same as Enbrel which I am still having until I have the assessment for Tocilizumab. You said somebody else is on injection, do you know if it is in the UK or USA? I go overseas each year to see my family, now that I am recently retired (due to the RD) I would like to go for longer, possibly a couple of months but if I have to have infusions that would make it difficult. I am glad to hear that the infusions have worked for you and that the inflammation levels are now below normal.

    Thank you for your response and I hope you keep well. S

  • Ozzy you can take this weekly, it gets delivered to your home by bupa healthcare at home, that way you dont need to have time off work :)

  • I had 3 infusions 2 years ago with no side effects but it took my neutrophils too low and had to stop. There has been talk about injections coming out but I have no idea how close this is to becoming widely available. I think it took around 3-4 hours at the hospital every month for the infusion. I do find a self injection option easier although some thought has to be given to delivery of the drug and most have to be kept in the fridge. Farm

  • Hello Farm,

    I find that the pens are easy for travelling, I just pack them with an ice-pack and they are fine after an 8 hour flight. The Enbrel pens have to be kept in a fridge and I haven't had any problems with delivery. I will discuss it tomorrow at my appt.

    Many thanks Farm for your response. Sue

  • Uk I think

  • Thanks, I hope it is.

  • Thank you everyone for your response, I saw the doctor at the Rheumey clinic this afternoon and yes they are putting me forward for tocilizumab. I was advised that they are hoping it will come in pen form in about a months time. I will have another assessment in the biologic clinic in the next 2 weeks although he said today I have passed the assessment for this drug today, they will have to do further tests as well as the blood test they also did today.

    Thanks again, take care everyone and hope we can all have a painfree 2015. Sue

  • Hi there, I think it's me the reference is about, I'm from Glasgow and Biologic wise I have been on Enbril, which I was doing great on until an allergic reaction which made me come off it, I was then on Cimzia which done nothing. So now I'm on Toci, which was offered as infusion or weekly injection which I took the latter, it gets delivered same as your Enbril, I have noticed that you are wondering about travel, I travelled with Enbril no bother as it can last a long time out of the fridge as long as it isn't re chilled, with Enbril you take it out for 30 mins usually to let the chill go down before injection, but with Toci it is 5 mins as anything after 5 mins it starts to thicken and gets ruined if not injected, so travel maybe a problem in that respect, not sure about the pen, but the injection is no bother, it also has a spring loaded release to remove the needle from your skin. It seems to be working for me just a little, but I can feel it working, 3rd injection tmrw :), good luck with whatever you decide to do

  • Hi IainM, Thank you for your response, it was very helpful. My next appt with the biologic nurse will be in about 2 weeks. It looks like I will be starting with infusion to begin with, I don't mind either pen like with Enbril or injections. My pens (Enbril) was delivered at home by HAH, no problem, if the same can be done with toci that would be great. I was told today to stop using the Enbril pen and stay on prednisilone until they can sort out the new medication. I fly to Canada every year which is an 8 hr flight, I packed the pens well in a plastic box with an ice pack, plus paper work from HAH. They gave me the advise on how to pack the pens for travelling. The ice pack was still frozen on arrival so I put the pens (3 pens) in the fridge. Hopefully, the pens or injections will be available by the time I start on the medication, I would prefer the injections as sometimes the pens are hard to press due to the pain and lack of strength in my hands.

    Thanks again for your response, it was very helpful and good luck to you, I really do hope the injections keep on working for you. Sue

  • HI i this is my third year on toci having been on most other meds at some time or another i have had RD for around 11 years and nothing worked.It has worked better than others but still have problems with neck hands and feet but go for it.I will be happy to inject rather than monthly treck to hospital .Best of luck hope all goes well

  • Hi Beeckey not sure if its a regional thing, I am on injections, dont know if they are a new thing or not as Im only 3 weeks into therapy on Toci having failed 2 other biologics and all dmards, I was given the choice if infusion or injection, which gets delivered same as all biologics at home, hope this helps :)

  • Hi beeckey,

    Thank you for your response, I will have to start with infusions at the hospital, but I was advised yesterday that a pen or injection will be available in approx a months time. If you check with your Rheumey clinic they will be able to tell you when the injections are available in your area, that will save you from a trip to the hospital every 4 weeks. If you read through my responses, one gentleman advised that the injections can be delivered to your home. Thank you for letting me know of your experience with toci. I was ok with Enbril pens, they just stopped working after having to come off them twice due to other health issues, apparently, this can happen. I did have problems with other medications which is the reason they put me on anti-tnf. The Dr yesterday advised me to stop using Enbril pens as they weren't working anyway. I will hopefully have another appt with the biologics nurse in 2 weeks with the next part of the assessment, I'm not sure when the infusions will start but I am very eager to get started. I am in such a lot of pain at the moment in my shoulders, neck, arms, hands and feet. The doctor did a das yesterday and my RA activity is very high.

    Good luck in the future, I really do hope we can all be pain free one day. Sue

  • I was on a drug trial it is a wonderful drug after two infusions I noticed my inflammation was reduced and I was very pleased.... unfortunately its to wrong drug for me as I need to target my white cells.

  • Hello widget100, Sorry to hear it was the wrong drug for you as it unfortunately effected your white blood cells. Yours is the second reply that the drug worked well but they had to stop the infusions due to how it effected the white blood cells.

    I have my next appt with biologics nurse at the end of this month so hopefully, I will be able to start the infusions or injections soon after. The feed back I have received has been positive.

    Thank you for your response and good luck with future medications. Sue

  • Hi all I have had 3 infusions now and everything is going really well. If you go for the infusion, I listened to someone on this site who told me to drink plenty of water during the infusion because it stops a headache you can get with the infusion. It was great advice, I have had no side effects and everything is going well with my RD. I'm desperate for the injections as I go abroad for 3 months, my Rehumy nurse just keeps saying she dose not know when. I Live in the Manchester area does anyone in my area get the injections.

    Good luck

    Sharon

  • Hi Sharon,

    I too live in the Manchester area, my Consultant Rheumatolog Clinic is in the Bolton area and they told me last Friday I will be starting on the injections, that's if the TB test goes well tomorrow and the other blood tests and x-ray comes back clear, and I will be starting on the injections. I go over to Canada to visit my son and his family every year, this year, I will be going for longer now that I have retired, due to RD.

    My concern is traveling with the injections, I think I mentioned I was on Enbrel (pens) and I had no problem with traveling or customs. I am led to believe that the difference with the Toci injections you have to use them within 5 mins where as the Enbrel pens you have to leave out for 30 mins before injecting. The Rheumy clinic gave me a telephone # for the advise line where I can ask the question. I will let you know just in case you change to the injections before you go away.

    My Biologic's nurse told me that the injections can start working from 2 week to 12 weeks. I can't wait to get started as the flare up haven't stopped. I am so pleased that Toci is working for you with no side effects even though you have only had 3 infusions, hoping I will be so lucky. I will take your advise and drink plenty of water even with the injections as I have read they can also give you headaches.

    Keep well, take care and I hope you enjoy your holiday.

    Good luck,

    Susan

  • Thank you so much Susan. I would have thought provided you keep the pens chilled they will be fine. I travelled across Eastern Europe with Cimzia in a cool box over 3 weeks. The drug was fine. When flying I put them in a plastic box wrapped in kitchen role I put frozen packs on the outside of the kitchen role then close the lid and put the box into a thermal sandwich bag. I got a letter from HCH which you give to security at the airport, which usually asks them not to X-ray. They usually swab the outside of the syringe or pen then put it back. Provided it stays chilled you won't have any problems.

    I'm hoping the injections will be available soon. I go in May x

  • Hi, I did the exact same with the Enbrel pens they were fine. I had a letter also for customs and they didn't even look at it, just the fact I had a letter from HCH and another letter to cover my other medications from my GP, which I put in a plastic bag they were fine. I do have wheelchair assistance at the airport as I travel alone and unable to lift my luggage or walk very far due to a prolapsed disc which I have epidurals in my lower back for the pain, may make a difference. In the last 4 years they haven't swabbed the pens or looked at them.

    I believe it could be Bupa at home that will deliver the syringes and send a nurse to show me how to use them. I have used similar before for claxane injections before I can have the epidural injections. I don't have a problem with using pens or syringes.

    Good luck with getting the injections, I hope they sort it out before you go away in May. I usually go in May but decided to leave it until later in the year so I can give the new medication time to take effect, plus I am on prednisilone and will have to wait to start reducing them until I have been on the injections for at least 12 weeks. I have twin grand-daughters so I try to go over whilst they are on school holidays, plus I hope to go for longer this year.

    Take care, getting away for a while does make one feel much better. Susan x

  • Hi Sue it's finally been confirmed I have the injections and they are already set p for delivery. Let me how you go. Take care.

    Shaz x

  • Hi Shaz,

    That's Brilliant, now you can go to Bulgaria, keep well,

    Take care,

    Sue x

You may also like...