Tocilizumab injections

[shazbat]

Does anyone in the Pennine Trust hospitals that cover Rochdale, Oldham, North Manchester and Bury, have the Tocilizumab injections yet. I'm on infusion but want to travel abroad, I have travelled with biologicals injections previously, but keep being told that our trust have not yet agreed injections, but it is the nurse saying this. Last October she told me they would be available early this year but keeps putting me off. So I thought I would ask on here as the majority of the country seem to be offering both options.

Thanks

Shazbat

[Ozzy]

I am still trying to find out about injections , I have rang the biologics nurse, and have spoken to the infusion bay nurses, but I cannot get any clues as to when the injections are being rolled out. The infusions are getting harder for me as they can no longer use the veins in my hands and the ones in my arms are hard to find, so I now have a bruised arm from elbow to wrist from two weeks ago 😞 so I hope the injections are available soon for all who want them

[shazbat in reply to Ozzy]

Hi Ozzy I have left another message for my nurse. So if I get no joy I'm going to email my specialist and ask him. Will let you know how I go. The drug is really working, but I want to go abroad to my house for 5 months. They promised last year that they would be on injection by now.

Shaz

[Ozzy in reply to shazbat]

I only found out about the injections on here in October but I rang straight away as I thought it would solve my problems with veins that have been stabbed enough! And save the nhs money by not taking an infusion bay chair up for up to 5 hours.

[angel-delight]

Hi Shazbat, I don't know if this will help you. I live in Greater Manchester area. I spoke with my biologics nurse this morning as I am still waiting to get started on the same infusion. I was calling to check on the test results which I won't get into right now. The nurse said once they get the ok they will start with infusions for the first couple of months even though on my last appt with her she showed me the syringe not a pen that I will be able to use. The nurse did say they have to jump through hoops to get the injections where as the infusions they would be able to start right away

I was asking questions as I travel overseas for a couple of months each year. They are supposed to be in my area, that's all I can tell you. If I hear anything more I will let you know.

All the best, Sue

[shazbat]

Thank you so much Sue. I have spoken to my other Rehumy nurse today. She is going to check with the pharmacist on Wednesday. It's annoying that most authorities are offering eith infusion or injection/pen. So I will let you know when I get an answer. Thank you again for responding. I travel to my house for 5 months in Bulgaria I have a doctor who takes blood tests there if required. So here is hoping. Shaz x

[angel-delight]

Hi Shaz, good luck with the injections. I was told the medication can only be injected or infusion and not available in pen form. I have delayed my trip to see my family until later in the year. I was told today that my second tb test didn't pass quality assurance, my consultant doesn't think I have TB. I have to wait now as I need to be referred to the Thorasic unit, hopefully I won't need to have another blood test as the consultant thinks it is the steroids I am taking that is effecting the test. I have been on them a long time. I hope that he is right. Anyway, I will keep in touch and let you know what happens. Good luck with getting the injection in time for your trip to Bulgaria, very nice. Take care, Sue x

[LS1957]

I am waiting for the appt for my first infusion but as you both say have been told injections will be available in about three months - had no meds now for almost 6 months and struggling now with the pain and fatigue been awake most of the night and got a 9 hour working day in front of me - really hope this drug is going to work or at least help x we need to keep pushing for the best we can get x

[shazbat]

Hi LS1957 I have had most of the biologicals 2 didn't work and Cimzia made me really ill. However Tocilizumab is fantastic. Make sure when you are having the infusion you drink loads of water, stops the headache some people get. Aside from that I have had absolutely no nasty side effects and my scores are fantastic. My RD was attacking my lungs as well as my joints, I have really found it a miracle drug. Hope it works for you.

Take care

Shaz

[shazbat]

Hi all I received a call from my Rehumy nurse this morning. She has done a brilliant job, apparently the injections have been cleared for use by several committees, however it's now with our trust who are at the moment considering it. So she advises me that hopefully there might be some clarity at the end of March following a meeting of the minds. Will keep you all updated.

Shaz x

[shazbat]

Pennine Trust Hospitals have my life on hold. My honeymoon may have to be cancelled. What is going on. I am consistantly promised answers that don't appear. I know other RD sufferers on here will agree. WE HAVE A RIGHT TO SOME SAY IN OUR TREATMENT. I have now been waiting over 7 months to find out if Toczilimab is to be offered as an injection just as many other Health Authorities have done. I currently have this biological by infusion. It's the only one that's worked out of all of the biologicals. But I was told don't worry by the time your going on your honeymoon it will be available in the Pennine Trust as an injection. So I was told again there was a meeting at the end of March where it was up for discussion and I would be contacted. NO contact but had an appointment today with Rheumy nurse so thought I would now get an answer BUT AGAIN " sorry don't know " Rheumy nurse who was contacting me is not in, neither is the specialist. So I got married on Saturday my honeymoon has already been moved until May and I still don't know if I can go. I'm promised another call later so we will see but not holding my breath. So the next move is an email to my MP at the very least I'm entitled to an answer. So sorry for ranting just devastated, they just dont seem to care.

Shazbat

[nomoreheels in reply to shazbat]

Not ranting Shazbat, it's sheer frustration that's jumping out of the screen. It's certainly doesn't seem fair how they're messing with peoples lives. I don't have an answer for you I'm afraid, unless you prefer not to go the complaints procedure route?nhs.uk/choiceintheNHS/Right.... I wouldn't think it would be particularly quick which is what you're wanting/needing. You've spoken with PALS haven't you, complaints not compliments of course!? Check your Trusts' PALS on your search engine & I'm sure you'll have any amount of info on how to go about making a complaint.

Unless I missed something you kept your wedding quiet. I hope you had a lovely day & congratulations to you both! x

[shazbat]

Thanks nomoreheels I should have mentioned my wedding sorry all going on at once. I have been to pals before and they were very good. It's just so frusterating and annoying when they promise to phone you then don't. They seem to forget we have lives outside of this illness.

I will give it until lunch tomorrow then I will contact pals. Thanks for listening.

Shazbat

[nomoreheels in reply to shazbat]

Not to worry, I just didn't want to have missed wishing you good luck if you had mentioned it!

I hope PALS are as helpful as last time.

[shazbat]

Pennine Trust Hospitals need to get their act together for the good of patients. I have today received a phonecall to say they still dont have an answer. No one can understand why there is a delay. I have been told by a number of patients from the other hospitals that it has gone through every committee process but is waiting for sign off from one person. Well they need to get their act together. One person can control the lives of so many patients.

So now it going in as a complaint.

[RA13]

Hi I don’t know how old this post is but yes I have used Toc as weekly injection ( under the Pennine Trust) but I don’t think they worked as effectively as they did with an infusion. Toc has raised my cholesterol but statins give me a flare up (or seem to do). I also have an under active thyroid.

[shazbat in reply to RA13]

Hi same with me it's raised my cholesterol but I refused to take the stations when I saw they caused joint pain. I like the convenience of the injections but I agree by the end of the week I'm having numerous flare ups.