Csn you help?

[Witsend8]

I joined as needed RA and Tocilizumab and travel questions answered, here seemed best place. O l posted & got some ideas. However, hospital nor their chosen deliverers Lloyds at home healthcare will deliver, loan or prescribe a travel bag. I know others have done so. Hospital said they would, then rang and said incorrect. Lloydd said hospital responsibility, nurse suggested i call manufacturer so i called Roche. There customer services said would ask, so i asked if they had a prodict manager. They ca lled me & were surprised when i said nurses at hospital suggested it. Roche said they only speak to medics & askes me to speak to medical information team and ask them to call roche. Updated hospital who said would be dealt with hopefully this week.

It appears to me that each airline and airports all have different rules. Cant NRAS get involved to streamline this process so all use same if not similar rules! Also, i suggested to ROCHE they begin a loan system of travel bags for travelling which an old insulin pump manufacturer did. Not everyone can afford to buy these outright, they arent a few pounds after all. Could you help on this scheme perhaps also? Maybe users of scheme could pool to do some Admin of scheme, though some 'donations' of bags and gels would be deally used for this. Its difficult enough without all this uncertainty. I can't think of any other way of getting some of these new to me issues sorted.

[helixhelix]

More likely to be something that a high street chemist like Boots could do. Give NRAS a ring and see if this is an idea they could help take forward.

I can see endless problems trying to do a nationwide scheme using volunteers and donations. So other approach would be to talk to the PALS at your hospital and see if they would help set up something for that area.

But if you have RA and like travelling, then you’ll be using a medical bag for years and years, so it becomes worthwhile having your own.

[Witsend8 in reply to helixhelix]

Had RA over 30years so previously steroid and strong painkillers used. Now in month 2of these injections which i was lectured about the temperature on beginning them. Injected since aged 7 so used frio which I wrongly assumed would be ok. Again, lloyds said they had hospital saying its ok, when i sent frio info, all went suddenly'ee csnt advise'. Im aware but i dont think (prob wrong again) due to costs not THAT many users yet? Good ideas of yours also. Good to get others ideas, but feel something needs to be sorted so mentioned it to manufacturer. Who said maybe but wouldn't be in time for my trip, i understood this. I can't be only one, i worked till health stopped me, way past i should have, so feel for others like me. Im double immune suppressed so live at hospital it feels sometimes. Any other thoughts by anyone else would be welcomed. We are alone until the ones join together amd become a team, league then a nation! Small acorns and all that xxx

[helixhelix in reply to Witsend8]

30 years with only steroids and strong painkillers! Yuck!

Although biologics are restricted in the UK due to cost-risk-benefit ratio, I reckon there are still thousands and thousands of people using them now as have been prescribed since around 2002.

Personally I think the drug manufacturers should just give people a bag each. The drugs cost about £1000 a month, so the profit is probably not bad. I was given one when I first started, but I don’t live in England.

[Witsend8 in reply to helixhelix]

Back then that's all that they had. Think of cancer treatment back then. Look at diabetes when people first had it, they were left to starve to death. We've come a long way!

[helixhelix in reply to Witsend8]

I agree with you about cancer treatments, but 30 years ago was when methotrexate became the first choice drug for RA, and proper insulin treatment has been available to diabetics for 40 years now.

Yes things are massively improved, but I really hope that sometime over last 30 years you were offered something more than painkillers and steroids for your RA.

[Witsend8 in reply to helixhelix]

Yes i was, and tried them all. Due to other illnesses, theu werent suitable as arent a lot now. My kidney specialist wrote to rheumatologist and suggested something like biologics when i had to see him using a wheelchair due to flare up. I now have steroid injections when they are bad, but this sent blood sugars way way to high for too long when on insulin.

Now had double transplants so things on sugars front are ok.

This is just me and we are all very different arent we!!

[helixhelix in reply to Witsend8]

Oh good, as long as you weren’t ignored/overlooked. I guess that’s the best we can hope for as the rest is a lottery.

[Witsend8 in reply to helixhelix]

Certainly is, but that's not right either is it? Its too large now the nhs,if it could be across all political parties so that it didn't interfere when election time with ex nhs people on that, plus policies across all parties, with give and take on all sides.

Now that i wish could happen so its not pulled from pillar to post each time. If only......

[AgedCrone in reply to helixhelix]

Right HH...you can see a variety of medical cool bags on Amazon for under £20....I would imagine it would be well worth that for peace of mind.

Personally I never put anything in an aircraft hold that I expect ever to see again.!

[helixhelix in reply to AgedCrone]

Not sure a £20 one would be enough to keep stuff under 8 degrees for 24 hours? I looked up the one I was given, which works well, and it was 95€...... But not that much in relation to cost of a long haul flight?

And never in hold!! It’s a long time since I put anything in the hold. I’ve found I can manage for up to two weeks with a cabin bag now. One of the (very) small pluses of RA is that I only have one pair of shoes, so my wardrobe that goes with said shoes is equally small, and no longer wear make-up.

[AgedCrone in reply to helixhelix]

One of the main reasons I chose Rtx infusions was they appeared to need no maintenance!

But as you say if you are going on a long haul flight you might have to budget for future use by buying a €95 cool bag?

I really think the NHS has much more to worry about then organising holidaymakers cool bags.

I could probably manage with just a cabin bag for my trips away but I can’t lift a 10 kg bag into the overhead luggage rack & these days Cabin Crew just stand & watch you struggle & sadly I haven’t yet perfected the “poor little me look” for a sturdy Male passenger to leap to my assistance!

I’m quite lucky with hold baggage...but the last time a bag did go missing.....for a week.....it was returned with the contents wet through.

I was very glad I always pack everything in waterproof plastic bags so not too much damage. I had my come uppance though....the airline...Monarch....went bust!

[Witsend8 in reply to helixhelix]

I have had RA over 30yrs but only just trying tocilizumab. Type 1 diabetic travelled with insulin but used frio and not right temperature. I am aware my journey time is long, but its becasue i have to break it up, need to stop a lot due to other issues and its my first time travelling with this to me anyway, new drug. I have no idea even if hospitals will allow to me stay on it, due to already on antirejection meds so now double immune suppressed. This is why i dont know if its going to be an ongoing thing. There's long uk drive, then flight, then long drive to friends new property in the mountains, hence why no fridges! Wouldnt do long haul anymore as i need to be flyable back to UK just incase. As said loan system i used before was good, no issues there. Sorry i dont have any spare cash to buy one, friends putting me up and paid for my flights as pressie so i havent wasted money. It was just a suggestion for anyone else whom may be going to eg scotland, takes hours in car there too remember, plus even london with m25 issues!

Just idea, that was all.

[helixhelix in reply to Witsend8]

If you are going to Scotland, surely you can get the drug delivered there??

[Witsend8 in reply to helixhelix]

Hi yes, uk not issues, its long trips to airport then flights 5 hrs then travel by car again. Wouldnt try abroad to get it or anti rejection drugs, just me. Like them from hospital in uk.

I just wanted some ideas of travelling with it and thought about my loan system which i used when on insulin pump, hence i know insulin is higher temp then biologics.

Will do research elsewhere.

Keep well as you can x

[Witsend8 in reply to helixhelix]

I tried boots and lloyds, and some smaller chemists. Im going to just see what happens and if needs be just have injections that may not work if i cant keep within this temperature. Ive asked roche even if they tested it above that temperature, waiting for answer!

Tried all i can think of, except giving up,which i think i may do soon.

Thanks everyone for all the advice, even asked about why some gel packs leak!

Those who i feel had a bit of a go, i dont know this drug at all, im mid way through my second pack!!