Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France and it couldn't have come at a worse time for me.
I'm getting ready to make my first trip to the UK in 2 years. During this time I haven't seen any of my children, grand children or other family members and friends. The spell is going to be broken in mid September when one of our sons gets married, a wedding that has been delayed for one year. We have booked to leave by car on 1 September and return 1 October. People on this forum gave me advice on how to transport the injections to keep them cool and I have bought a mini fridge that works in the car.
Yesterday I went to the pharmacy to collect my order to be told that the lab had run out and that they wouldn't be available until September but couldn't give a date. I was told to contact the hospital consultant to find out what I should do. The consultant is on holiday so it has been passed to someone else. Today I got a phone call saying that I could go in as a day patient and be given an "equivalent" drug. I haven't been told what drug this would be and I am very nervous about accepting a drug that might be different and have side effects, especially so close to the departure date, not to mention the risk of catching covid as well.
The bottom line is, that if I have my injections 2 weeks apart, the two I have left should take me up to my date of return in October. If the pharmacy has them by then, I should be okay. Recently I have taken them every 2 weeks but this is only allowed if my symptoms stay away. However, this does not allow for anything going wrong while I'm away, like recurring symptoms and me having to fall back to a weekly dose. My plan was to take enough with me in case this were to happen.
I would like to know your views about mixing drugs, if this is what the hospital are offering me. I should hear from them again tomorrow. I would also like to know if there is anywhere in the UK that I could order and buy the Roactemra injections on arrival? I'll be travelling from Folkestone to Newcastle. I know they are like gold dust but there may be somewhere.
I lay awake all night worrying about it and I'm hoping that someone will be able to offer me advice. Thank you.
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Are you a U.K. National? I wonder if any of your family could help via their doctor in the UK? Just a long shot. We seem to be getting our supply.Do you know what the alternative drug on offer is?
Are you completely off Pred.?
In my case it is only the Pred that makes a discernible difference to my symptoms. I have taken Tocilizumab fortnightly and weekly and haven’t noticed any real difference. I have GCA/LVV. I never had typical GCA symptoms. I am sorry this has happened to you. I can really relate to how important this trip is to you.
Thank you for your immediate response and concern. Yes, I am a UK National and it gives me hope to know that you are still getting your supply. If there are some out there, maybe there is a way through one of the doctors. It's also reassuring that you are managing okay on fortnightly doses.
I forgot to say I have been off the pred since January. I have made a plan with the doctor on how to take it again if I were to have a crisis. This would include taking the Tocilizumab injections weekly.
I don't think there is an equivalent drug substitute for Actemra. There are other biologics and if they were approved for GCA I'm sure we would already know about them.
Thank you for your reply and the link. I didn't think there was an equivalent either unless she just means a different way of injecting it. No doubt I'll find out tomorrow.
Instead of worrying - get the facts clarified. If you have to go in as a day patient my suspicion is that they may be intending giving you an infusion either of tocilizumab or an equivalent IL-6 inhibitor as they would for their RA patients. I think they only use the injections for Covid and the production line will probably be different.
I would look up the price but, like you, I can't access the BNF - maybe someone else will have a look. But you do realise you are looking at hundreds of £ per shot?
Tocilizumab is available in three vial sizes, which are priced at £102.40 for an 80-mg vial, £256 for a 200-mg vial and £512 for a 400-mg vial ('British national formulary' [BNF] edition 59, excluding VAT).
You are right. I'll see what are going to offer. I think trying to go through a doctor in the UK as SheffieldJane suggested is definitely worth a go. Thank you.
I am taking Tocilizumab every other week as weekly shots were lowering my WBC. My rheumatologist who is involved with drug trials told us that he would switch me to a drug called Kevzara that is being tested for GCA. My neuro-ophthalmologist was in agreement with his recommendation. Good luck on your trip and stay safe.
Thanks for your reply. I carry pred around with me to use in the event of a crisis so I will still do that. I don't want to go back on it if I don't need to as the Tocilizumab seems to be working well.
I am also currently just on Actemra too and I also having an emergency supply of pred. I had a flare up a couple of months ago, which I wonder if it was due to my vaccination. I was able to get home and take my injection. When I told my rheumatologist he said I could of taken 20-30mg of pred, but like you it’s a last resort, but at least you have that back up if for the slim chance you have problems.
Maybe it is the 4 weekly infusion they are offering you. They don't offer it for our symptoms normally but perhaps this is worth a try for your trip. If you have plenty of pred to take with you as well then hopefully you're covered. It couldn't have come at a worse time for you and you certainly don't need this added stress. But remember if things are bad the pred should help even though it's not ideal.I had my regular delivery this week and they only sent one box of 4 rather than the usual two, so just be aware you may not be able to get it here that easily and I'm not sure that GPs prescribe it,I think it may be consultants only. My pharmacist admitted he knew very little about it.
Let us know what they are offering you, it might be the perfect solution for you. Good luck.
I am interested as if I am ever allowed to get to see my daughter in Hong Kong, due to their strict 3 week quarantine (in a hotel) rule, I am not sure how I would be able to take my TCZ with me. The infusion would sort it out for me perfectly.
Do you know much about how the infusion works? Like how much dose they give you and how does it managed to last that long and not be too much at the start?
In UK. A couple of weeks ago Ireceived a text from Lloyds Pharmacy saying that there was a shortage of TCZ and I would be receiving fewer pens next delivery. This week I received a letter from Roche saying that there was a temporary supply disruption.
I feel that because the treatment is working so well as it is, it would be a real shame if I had to switch to anything else simply because of a temporary shortage. I think I am on the mend and I don't want to rock the boat with my immune system. I was diagnosed with GCA including LVV in April 2020. I started on 40 mg of pred and after 4 months was put on Tocilizumab as well. I tapered off the pred and finished it in January 2021. I was lucky to have a quick diagnosis and that the Tocilizumab agreed with me. I saw my doctor at the beginning of July and she wants me to take it for another year. I hope you achieve your goal. We have to keep trying and be hopeful and this forum helps as there is so much positive support.
I had a text message on August 5th from Lloyd’s Patient Homecare (who normally deliver my Ro-Actemra injections every 2 months) to say they would be delivering monthly now because of the manufacturer’s production problems.
On Tuesday this week, I received a letter through the post from Roche UK headquarters (in Welwyn Garden City) apologising for any possible disruptions to supplies, and recommending contacting health care professionals if I have any concerns.
I changed to 2-weekly injecting a month ago since the original trial data (with groups injecting weekly and two-weekly) seemed to give very similar results. Here is a link to that research. “Trial of Tocilizumab in Giant Cell Arteritis” 2017
......plus I wanted to eek out my supplies as long as possible given that my consultant had not heard officially about the NHS extending Tocilizumab treatment until March 2022. (Indeed, she only received the official confirmation of this on August 5th!).
I have been off prednisolone completely for 17 months now, and had my first face to face appointment with my consultant 10 days ago (the first in nearly 2 years). All blood results, blood pressure, circulation etc. were fine and in fact I feel healthier now than I have for years.
My consultant seemed to think that 2-weekly injections were ok (so the NHS could potentially be saving a lot of money?!. and maybe NICE might consider the reduced cost (£5,000 a year instead of £10,000) could be met by the NHS??
I infuse a completely different drug, for a different purpose: I have an immune deficiency, nothing to do with now having an auto immune disease though. It is Immunolgobulin G (IgG). My usual regime is to infuse via a syringe pump 12mg/60ml per week in one go. In the past I have injected, with a push syringe, 10ml a day for 6 days a week. The stuff, Hizentra, is so thick and viscous that it is hard work pushing it in.
When I visit my daughter in Australia for three weeks (almost a long distant memory now) I have to go to the Royal Free hospital and have a much larger dose of a different formulation of IgG by IV drip. So, it boosts my levels sufficiently and they then fall gradually over the next 3 weeks. When I get home I carry on with my normal regime.
I'm posting this as an illustration of how something that you normally use more frequently can be used at a larger dose less often. Something similar may or may not apply to TCZ.
That's quite amazing. So it's the formulation and, I imagine, how it is stored and released in your body that matters. I was thinking that if you were given a lot of something in one go then the side effects might be worse than normal right at the start and you would have to wait for them to wear off too. It obviously isn't the same as taking 3 weeks of your normal dose in one go. Thank you.
You are right. I've learned a lot today and have lots to think about, When I get more info from my hospital on what they are proposing for me for next week, I'll be posing more questions and may have more information to offer.
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Advice needed please
Some advice needed please
Some advice needed please
