Toc and Travel

[Devoid]

Hi having been on holiday and transporting Toc in cool bag as recommended, my crp on return was 7 . I feel well so am not overly concerned but wondered if anyone else had experienced this

[PMRpro Ambassador]

It is something that worries me - not going anywhere soon if I can help it mind!

How did you arrange it? How did you refreeze the cool packs?

[Devoid in reply to PMRpro]

hi , it was only a short flight ang then we had a fridge where we stayed. It certainly seemed cool enough, I suppose it could have been too cold.! I just thought it was odd that before I went away when I felt awful on the leflunomide , crp was 1 what I would expect because of the Toc and then 7 on returning , when I felt great. The supplier gave me a letter for travel that lasts a year so I thought it was very helpful. The airline didn’t check anything. I will have it rechecked in a couple of weeks to see if it is normal,

[SheffieldJane]

My Toc has been in a cool bag, a ferry’s fridge twice to &from Ireland and two hotels’ fridges as well as a rental house. It was fine and I was fine. I don’t pay much attention to my inflammation levels because of suppression. If you feel fine, chances are you are. Was a bit nervous handing it over but they seemed used to it.

[FRnina in reply to SheffieldJane]

Was told recently by the hospital pharmacist here in France that Tocilizumab can keep outside the fridge for two weeks if kept in a cool bag and always under 30C. However, do not re-refrigerate. It means can travel easily with it, at least for short trips. Alternative is to find a doctor at destination (phone check ahead) who will supply it on arrival. And take prescriptions with one, of course.

[PMRpro Ambassador in reply to FRnina]

That's only going to work within the same country though.

And I have finally found a Genentech document that confirms that time:

gene.com/download/pdf/actem...

[FRnina in reply to PMRpro]

You are very likely right there. I guess one must be absolutely sure if travelling outside one's own country that one could get Tocilizumab on one's prescription. A bit nerve racking anyway. Better the cool bag and the two week window.

[PMRpro Ambassador in reply to FRnina]

I will probably travel by car and get a decent 12 volt cool box ...

[FRnina in reply to PMRpro]

zut! looks like I'll have to put New York visit on hold...

[PMRpro Ambassador in reply to FRnina]

In the USA some people are on the infusion (because of insurance foibles) - I was wondering about asking my rheumy if that might be an option to get a month without needing jabs.

[FRnina in reply to PMRpro]

now, that WOULD be great. Would sort out the travelling without having to resort to the cool bag option. I'll ask my rheumy as well.

[PMRpro Ambassador in reply to FRnina]

How long are you going for? There are very snazzy cases for carrying insulin which hold up to 5 or 6 syringes or more

This

4allfamily.com/products/por...

appears to be the Rolls Royce version!!!

[PMRpro Ambassador in reply to PMRpro]

And this is the next down

4allfamily.com/collections/...

[FRnina in reply to PMRpro]

Thanks so much PMR pro! Travel NY is 3 weeks minimum so this would be super for peace of mind. I'm going to order right away. 😊

[PMRpro Ambassador in reply to FRnina]

Really? Do tell me what it is like - in fact, do a post about it with your experience. The only reason I'd be away long is a trip to the UK and I would almost certainly drive so one of the fridges appeals to me - could keep my lunch in it as well!

[FRnina in reply to PMRpro]

First a test trip by train in Europe with the portable fridge! NY for next spring if all goes well. I wonder about border security though: will they be thinking 'suspicious object'?

[PMRpro Ambassador in reply to FRnina]

Same as insulin - and you carry a script/letter I think

[FRnina in reply to PMRpro]

👍

[PMR2011]

We stopped even checking CRP and Sed rate once I was on TCZ as they don’t hold much meaning once on it. Don’t want to waste time, health dollars and my blood! Go by symptoms and how I feel.

[LemonZest11 in reply to PMR2011]

When I attempted to space out tcz jabs to 3.5 and then 4 weeks, my crp and sed rate both rose and blood tests showed that. I have always been surprised by the idea that bloods do not show a flare when on tcz.

[PMRpro Ambassador in reply to LemonZest11]

It is because of how TCZ works - it stops the production of CRP and also, as a result, a rise in ESR. When you stretch out the injections and the disease process is still active, the effect wears off and the production starts again.

[LemonZest11 in reply to PMRpro]

So that is why my increased levels were evident in my bloods?

[LemonZest11 in reply to PMRpro]

Your knowledge and your ability to articulate it, is truly remarkable. Thank you.

[PMRpro Ambassador in reply to LemonZest11]

Signs of a lifetime spend in a scientific world and translating badly written German into decent English!!!! I had a lot of practice

[PMR2011]

Interesting. My CRP went to near zero and we just stopped checking it as rheumie said it wouldn’t be a reliable reflection of disease activity.

[PMRpro Ambassador in reply to PMR2011]

It isn't as long as the TCZ dose is enough - but its efficacy wear off and there comes a point where there isn't enough to suppress the production of CRP and some is made until the next dose.

[Purple-Owl]

What is toc?

[DorsetLady PMRGCAuk volunteer in reply to Purple-Owl]

Tocilizumab aka TCZ or Actemra .....

[jinasc in reply to Purple-Owl]

Generic name: tocilizumab [ TOE-si-LIZ-oo-mab ]

Brand names: Actemra, Actemra ACTPen

Dosage forms: intravenous solution (20 mg/mL); subcutaneous solution (162 mg/0.9 mL)

Drug class: Interleukin inhibitors

Tocilizumab is used in adults to treat:

moderate to severe rheumatoid arthritis after at least one other medicine has been used and did not work;

giant cell arteritis, (inflammation in the lining of the blood vessels that carry blood from your heart to other parts of your body); and

to slow the decline in lung function caused by scleroderma with interstitial lung disease.

Hope this helps.

[Suffererc]

what is Toc please

[LemonZest11 in reply to Suffererc]

Read above comments.