Benepali and traveling

[Kerry-78]

Just wondering what others have used when traveling with Benepali ? Healthcare at home recommended molly mojo icool but I've also Googled travel bags and there are a few to choose from.

[Deniseelk]

Hi, I just returned from Italy and used the Molly mojo brand. I got the travel bag with the gel ice pack and room for 3 pens. It was on offer and was delivered quickly. Worked perfectly. If going abroad will need customs letter from HaH and they sent me a travel sharps bin too. I also took my latest prescription and letter I already had from Rheumatologist stating my condition and meds I need. The Benepali pen should not go through scanners. Molly mojo sent out a technical data sheet regarding the materials in the gel pack so carry that too as the security could seem it as a potential explosive threat. Saying that it was only the security in Heathrow that had any interest in what I was carrying and they gave the pen a “ swipe”. Hope this info helps!

[TPaine in reply to Deniseelk]

I tried one from molly mojo but it froze my pen and was difficult to get temperature right so I lost a pen through it. Mine had a temp gauge and when I saw it said 1 degree I opened it and the solution had actually frozen so lost faith totally. What did you do with yours?

[Deniseelk in reply to TPaine]

Oh, that sounds odd and very frustrating for you! Mine is a small zipped carry case with two sides one where you place the frozen gel pack which zips inside and the other side holds 3 pens. I wonder if there was a chance that your gel pack was touching your pen? When I arrived in Italy I kept the case in the dark, cooler wardrobe in my air conditioned room. My injection wasn’t due until the end of the week so to be fair I didn’t open the case at all until then. Obviously, the gel pack was no long cold but provided the injection stays below 28• then it’s fine. Out of interest, if you missed your weekly injection how did you feel / notice any decline in what would then be almost 2 weeks without Benepali?

[TPaine in reply to Deniseelk]

Luckily I was only away a week so took it a day late once home. Just frustrated as it's an expensive medicine wasted essentially. My injection day is normally Friday so had it the day before holiday and then the Saturday evening once home. Going away for a week again in September so I think I will just do that again rather than waste another pen.

My RA is still up and down as trying to get established on benepali and methotrexate only but it has made a big difference to my overall wellbeing so far, still some iffy joints on and off but better than I was.

[KMC15 in reply to TPaine]

Are you on methotrexate & benepali? Ive been on benepali for 10 wk (after changed from methotrexate) i have bot flown yet with injections only sailed from southampton so got a grl pack as above & mine seemed to freeze but did defrost eventually to enable me to inject. Im worried about flying wih it. But at my rhumi monday & as dont feel not much help may takr me off. I got a letter for customs from H@H too.

[Kerry-78 in reply to KMC15]

Yes I take methotrexate too. I thought if it froze you shouldn't then take it ? I spoke with H@H on Monday and they said would send me a customs letter.

[KMC15 in reply to Kerry-78]

I am new to this injections so didnt know i shudnt inject if it had frozen (it did defrost) will check with my rhumy.

[TPaine in reply to KMC15]

Yes I am on both, been on methotrexate for nearly 2 years and despite this have not been well until started benepali. I was in sulfasalazine from the beginning 10years ago, but this was stopped once on benepali. I personally don't feel methotrexate has helped me but I was told it complements biologics so need to stay on it. Was on 25mgs but I have reduced this to 20mgs last 2 weeks as joints improved and desperate to take less of this. I have managed to come off my anti inflammatory meds since starting benepali too which I have not managed before successfully when on the other DMARDS so I feel it has made a big difference, although not managed remission yet, still early days though as only started in March this year.

I read if benepali freezes then it can make the medication ineffective when used, so it may be worth explaining this particularly if your arthritis is not so well controlled as maybe the drug hasn't been given enough time as essentially you may have missed a dose. It won't cause harm apparently but just may be less effective. That's why I was annoyed the device to cool at 2-8 degrees froze my one as it meant not being able to use it as I need it to work.