Positive consultation

[Devoid]

6 monthly consultant appointment yesterday. Plan to increase days between Toc to 11 . To return to 9 days if any symptoms, see again in 6 months time. He said if we do get to 14 days he tends to hold there for some time. Just thought he speaks such sense and I feel really well supported under his care.

[PMRpro Ambassador]

Once you have been on TOC for a while and things are under control I can't see why 2 weekly should pose a problem. In the clinical trials the difference between weekly and 2 weekly injections was minimal. My rheumy did a couple of local steroid injections for sacroiliitis and although before I had started to feel that worse than at weekly so had considered to dropping to every 11 days, I'm back at 2 weekly and no stiffness.

[Duncoding]

With my consultant's agreement, I gradually increased the gap between jabs of TCZ to 14 days, and have thus managed to extend the NICE 1- year entitlement to nearly 2 years.

[PMRpro Ambassador in reply to Duncoding]

How did you manage that - they were doing it by date at one time, not number of syringes?

[Duncoding in reply to PMRpro]

I got deliveries of 12 EpiPens each time, kept them in date order and just eked them out.

[PMRpro Ambassador in reply to Duncoding]

Mine are syringes - but I've never looked at the expiry dates on them. I don't have to worry here.

[Duncoding in reply to PMRpro]

Sigh.

[PMRpro Ambassador in reply to Duncoding]

Indeed - I've been on it nearly 3 years and it has made such a difference. It is a major consideration when it comes to returning to the UK. Which I must do at some point, I won't be able to live here alone for ever.

[LemonZest11 in reply to PMRpro]

Before you’re ready to return to the UK, you could always do what I did, approach Roche directly, with your rheumatologist’s support of curse. While I’m not on it at the moment, their support is ongoing. By the way, to Devoid, I was on three weekly injections for nearly 3 years with great success. But it definitely doesn’t work at 4 weeks!!

[Devoid in reply to LemonZest11]

The consultant seemed to think 14 days was the target, but again not rushing it, I’ve now been on Toc for over 4 years on and off . When my previous consultant took me off it the results were disastrous so I think this guy as.a more cautious approach. Just hope he doesn’t retire or move on!!

[LemonZest11 in reply to Devoid]

That sounds promising. Toci was great for me, got me off pred altogether. But when my Rheumy tried to wean me off toci by stretching to 4 weekly, it went pear shaped over the course of a few months, the indication that the disease was still active and remains so 😔. But as I said, two weeks proved effective and for me, three weekly. It played havoc with neutrophils, hence the three weekly spread. All the best for you Devoid, it's quite the journey, isn't it?

[Devoid in reply to LemonZest11]

You are right about the journey!!! I do have days now that I think has the disease burnt out but last time they took me off Toc I was ill in less than 3 months and it took ages to get back to the same level of health. I’m now on Toc from another company not Roche so I think that the price has probably come down considerably. I’ve not read on here that anyone else has changed over??

[LemonZest11 in reply to Devoid]

That's very interesting. I too am trying to get back on top of things, just have to suck it up and think about how fortunate we are. Take care.

[PMRpro Ambassador in reply to Devoid]

rxlist.com/tocilizumab/gene....

There are two biosimilars now available (biologic generics), Tofidence infusions and Tyenne in the US and Tyenne in Europe - Tyenne also comes in the subcutaneous formulation but I;m not sure about price or release dates.

centerforbiosimilars.com/vi...

When Humira became available as biosimilars, the price tumbled and according to my rheumy fell from a similar price to Actemra to IRO 800 euros a year. It tends not to happen immediately - and Genentech will still have an heavy hand influencing that.

[Devoid in reply to PMRpro]

Tyenne is the one I’m on . Other than the pen and box they come in are a bit flimsy no other notable difference

[PMRpro Ambassador in reply to Devoid]

That may start an interesting conversation in the future! If the price were to come down to Humira levels, I'd happily pay if the NHS won't. Like you, TCZ is the only way I'm not on nearly 20mg pred so you'd hope they would see sense.

I've been switched from Pradaxa to the generic as anticoagulant. The only difference is the blister pack - which is horrible!!! The Pradaxa one was bad enough - sharp aluminium edges that slice your finger soon as look at you! The generic looks similar but is much flimsier and getting it open is a nightmare. But it seems to be about half the price since the copay per month would be over 60 euros - so I shall continue to fight with it!

[LemonZest11 in reply to PMRpro]

Surely it's not about the packaging though. The price reduction should be worth it.

[PMRpro Ambassador in reply to LemonZest11]

I don't have to pay for the generic, I'd have to pay the price difference for the Pradaxa. If it has been a few euros I might have considered it!!

[AyJayBass in reply to PMRpro]

I am now on the generic Dabigatran. The foil is so tough that I use a scalpel to cut a slot parallel to and just above the capsule, then it's easier to get it out. Because I use 7 day dosette boxes, I extract the 14 needed for twice a day all at the same time. I am considering asking to be switched to Apixaban which appears to be just as effective. See:

pubmed.ncbi.nlm.nih.gov/279...

[PMRpro Ambassador in reply to AyJayBass]

I like the dabigatran to be honest - just the foil is a sod!! I'm not sure that is OK? Some capsules must be kept from any exposure to humidity, hence the all foil package. The manufacturers of dabigatran do give that warning:

pmc.ncbi.nlm.nih.gov/articl....

Apixaban is as effective but I'm pretty sure that was what my husband was on and he developed a VERY high level in his blood and came a bit close to bleeding out. That was due to development of a vasculitis post-radiotherapy for prostate cancer and not having been told not to take the anticoagulant and a cardiac medication at the same time - 2 hours apart was OK but he chose to go back to warfarin. The surgeons here told us that apixaban was a real culprit in delays for surgery, stopping it 2 days before surgery was rarely enough, it needed 4 or 5 days. The blood level is always tested in our hospital.