Forever on the line!

[lindyloy]

Having only one injection of Tocilizumab left, which I should take tomorrow, I called my supply service (who I know have a shortage of Toc.) they were extremely busy and I was on for a long time, and more than once, I didn't manage to get through to anyone. Now, this is where I need advice please, am I better taking my jab tomorrow as normal, or (as I know you can) or leaving it while next Friday, hoping I can get through on the phone for my regular supply?

[PMRpro Ambassador]

Difficult to say isn't it? However, the effect of TCZ is said to persist for a couple of weeks at least, often longer, so if I had no delivery date I'd put it off for a week in the same way you would be told to if you were unwell and hope that by the time the next dose is due you had had another delivery - I don't see you are any worse off?

[lindyloy in reply to PMRpro]

Thanks PMRpro, as ever, concise and to the point.

[SheffieldJane]

I am thinking of going fortnightly on Tocilizumab due to the shortage and ear nose, throat, sinus and eye infection side effects, this is after discussion with my Rheumatologist.

[Nextoneplease in reply to SheffieldJane]

Oh SheffieldJane, this sounds grim 😣 and I read on another post of other problems you’re having with this too! Hang on in there….Wishing you all the best x

Nextoneplease

[SheffieldJane in reply to Nextoneplease]

Thank you. It’s just been too long now. Time to get better. 😊

[Thelmarina in reply to SheffieldJane]

I’ve broken my hip recently and rallying my spirits as day after day slowly wends by takes a degree of energy and erodes optimism. I think you’re terrific. Don’t stop! 👍😘

[SheffieldJane in reply to Thelmarina]

😘🌈

[Thelmarina]

I don’t know whether or not you’re in the UK but it may be worth setting up a repeat prescription online. Your practice should offer the facility on its practice website or you could join the NHS app that does the same. Then you wouldn’t be relying on the phone. Perhaps that won’t work with this drug?

[Rugger in reply to Thelmarina]

In my case, the prescription for TCZ is raised by my Rheumatologist and sent from the Hospital Pharmacy direct to the company who deliver the drug - in a refrigerated vehicle from the south of England up to Yorkshire! I manage all my other repeat medication online via my GP's surgery, but not TCZ.

[Thelmarina in reply to Rugger]

I did wonder! Thanks..

[lindyloy in reply to Rugger]

Mine is the same, but with the shortage of supplies as stated with the letter from Roche, the end of September was one of the expected delay times. I haven't taken my dose today. As PMRpro said, if I was unwell, I'd probably have to suspend taking it for a while anyway. Thanks for the advice everyone.

[springeramber]

I am having the same problem but my recent delivery was only 2 days late so I just took the dose then - unfortunately it is a specialised biologic drug so I am at the mercyof Lloyds clinical homecare. I personally would take your last dose and keep my fingers crossed that delay is not too bad

[Rugger in reply to springeramber]

Lloyds Clinical Homecare have delivered my TCZ with no problems. At the moment, it's just one month at a time instead of the usual 3 months' supply.

The only time there was a slight hitch was when the Hospital Pharmacy hadn't sent my prescription to Lloyds, so not their fault - they couldn't issue a drug without a prescription, like any other Pharmacy.

[Spanky2019]

I'm in USA so may be different for us. I understood the problem with tocilizumab (Actemra) is related more to the shortage of auto injection devicenot the medication. Genentech had my rheumatologist write new rx for prefilled syringes rather than auto inject. My primary providrr will teach me how to do this. I've never given myself shot, the auto inject was so simple. The tocilizumab enabled me to quickly reduce and finally fiscontinue prednisone from original 80 mg 3+ years ago. I do experience Fatigue which zI think at least is partly from tocilizumab. I also think it effects my memory and cognition. Overall. I think it's helped the gca go into remission but I sometimes wish I could go back to prednisone as it helped with other back, shoulder and arm pain.

Remember crp & sedimentation rate lab tests are not accurate measure of inflammation when on tocilizumab.

Hope you feel better SheffieldJane. I know you've beem suffering a long time too. Best wishes to all.

[Spanky2019]

Glad you're doing well. Hubby and I are also eligible for booster. Didn't think about booster efficacy and booster. I'm going to talk with rheumy to see if I should hold off actemra a week or two prior to booster. Thank you.