Injectable Travel Case

[Marie1479]

Here is the case my Rheumatologist gave me. I am pointing to the white ice packs in this picture

[SheffieldJane]

Can I ask what might seem like a silly question? You are on 6 mgs of Pred and feeling well. What additional benefits do you think Actemra has brought? What have the doctors told you to expect as a benefit of Actemra?

I am also plagued by waves of an awful flu feeling and increasing fatigue. I am on 7 mgs diagnosed March 2016. I haven't got much pain and am puzzled as to what to do next. I think the flu symptoms were present long before my diagnosis and I thought they were depression related.

I would happily learn to inject myself if I could see light at the end of the tunnel. ( I THINK).

[PMRpro Ambassador in reply to SheffieldJane]

I doubt it will be an option for PMR in the UK somehow SJ

[SheffieldJane in reply to PMRpro]

I know but they were talking about Vasculitis and inflammation of the Aorta and stronger (!) medication. Hannah said she could possibly make a case for it.

Having said that, the chatty chap who did my ultrasound ( neck arteries and shoulders) thinks that it is unlikely that I have Aortic Stenosis, even though that was not specifically what he was looking at.

I want to be prepared.

[PMRpro Ambassador in reply to SheffieldJane]

Oops - I'd forgotten that bit.

[Gaijin in reply to SheffieldJane]

I saw a cardiologist today, after ruling out any cardiac pathologies based on EKG and ECG, he said he could not rule out aortic involvement, only that if I have inflammation in some part of the aorta, that it hasn't affected my heart.

So.. go figure..

[Marie1479 in reply to SheffieldJane]

Was able to reduce by half 14 to 6mg in very short time which is below the amount that is said to be “safer”. Most of my side effects are gone. I feel almost normal unless I over it. A day before I am due for my shot I feel fatigued and ready for my dose. It gets very tricky at 5mg, at least for me. Remember I was diagnosed less than a year ago.

[PMR2011 in reply to SheffieldJane]

Hi Sheffieldjane, whatvyou describe is how my GCA presented itself. Major fatigue, foggy head, dry cough, heart rate elevated. My CRP and Sed rate were very high (and that was on 7mg pred for my PMR). Couldn’t do a biopsy and no experienced ultrasound in my area. We ruled out any infection so by process of elimination GCA. Started on 40mg if pred (low end) and within 4-5 days symptoms resolved. Glad you are getting it checked out!

[SheffieldJane in reply to PMR2011]

Thanks. I must say you were lucky to get diagnosed correctly without eye or jaw symptoms. I do seem to be moving in the wrong direction after 19 months of PMR and feeling pretty good on 8, 9 and 10 mgs. Or rather the other way round.

[SheffieldJane]

That sounds pretty good Marie! In record time. From GCA doses?

Almost normal sounds like Heaven, having spent the day pole - axed because I went to Leeds yesterday for an ultra sound test.

I hope you continue on this excellent trajectory!

[Marie1479 in reply to SheffieldJane]

I don’t have GCA. Just PMR.

[SheffieldJane in reply to Marie1479]

Sorry, you are in America then?

[Nap1]

I just sent a photo of this pack to my rheumatologist. If he doesn’t know where to get it I will ask you to ask your doctor where I can buy this. Last time I traveled I froze the drug.

[Klah in reply to Nap1]

I remember you freezing the drug! Because of that I have a thermometer that I store with the drug. The 11 or so travel time...Home to destination...it was a bit tricky. I had two freezer packs and was constantly checking the thermometer and moving the oaks around in the carrying case. My medication was also in a box. I had to get more ice at the hotel. My doctor’s office gave me a thermal pack from another patient.

[Nap1]

I had too many freezer packs but it was difficult to judge because I went from house to motel then the next day on the auto train where I couldn’t get to my car which had the drugs. So being afraid I overdid it. The drug company was very kind and replacing but I will try when I travel back to New Jersey to only carry one or two weeks worth of act Actemra. But the pack Marie has is really convenient for short trips. How are you doing. I am not reducing as quickly as everyone else because I’ve been on steroids for many years and had many relapses so I have to be a little more cautious. Today I went down to 8 after being on 8.5 for only a week. I will stay on 8 if the blood is OK and I am OK for two weeks.

[Klah in reply to Nap1]

Today I am feeling great...no pain, no fatigue....played tennis this morning. Walked the dog. Tomorrow will be my first injected Actemra. I have had 7 infusions. Feel like I don’t need Actemra or prednisone at this time!! Ha! Kind of like having your migraine go away from the meds, so you think you are over it!! I am cautiously optimistic...but I have not felt this good in4 years. Still on 3m of prednisone and trying to be careful. Resting now😊

[CT-5012]

Have you investigated FRIO Cooling Products? My daughter used these to keep meds cool when returning to UK from Australia you only need water to keep them active for upto 45 hours. I used a small one on a tour of California for my eye drops and found it excellent. Daughter got hers directl from USA don't know how cold you need to keep your meds but a friend with diabetes uses one for her insulin with out any problem. Hope this may be of assistance.

[Klah in reply to CT-5012]

Thank you! I will find it.

[Gaijin]

I read a post months ago, somewhere by an actemra user that had it delivered to her home somewhere in the US.. She didn't know if she could go to her vacation home in the Bahamas because the actemra needed to be refrigerated.

Thank you for sharing this info. Not being able to travel to visit my children, scattered all over the world, was the only thing keeping me undecisive about going on actemra.

[Akino]

Thank you for sharing. Good to know!!!!! Monika

[Klah]

How many syringes in the box. This last trip I put two syringes in one box...then in the same medical bag shown. Thought I might call Genentech and ask if it is ok to take each syringe out of the box for travel.

[Marie1479]

1 per box. Let me know what Genentech says

[Klah]

Hw many syringes can you get by ne box? Thanks.

[Marie1479 in reply to Klah]

1 because the box takes up most of the space. Not sure if you can remove from the box