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hello rwg family. My daughter has JRA and her new meds cost $1000/mo. gonna need to sell a bunch of watches.


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Posted

My thoughts and prayers are with you K!

May the positive engery that is generated here by this amazing community bring your family comfort in your time on need.

Posted

Normally I'd PM but my box is dysfunctional...

I'm guessing the cost issue means they're prescribing etanercept?

You might want to ask your daughter's rheum about making enquiries about enrolling on a canakinumab trial. Some very promising clinical data in this area recently published. If she meets the inclusion criteria, not only would her outcomes be potentially improved, it would also negate you having to fund the cost of the medication.

If you want further info, feel free to email me (check out sales threads in watches and parts for details).

Posted

Sorry to hear about your daughter. I hope things improve. I wish you well. Oh, and one little quote springs to mind, never forget - it takes pressure to make diamonds. All the best.

Posted

I wish and pray for the best outcome possible for your precious daughter and family JAG. I will definitely keep my eye on your watch sales. :)

Mike

Posted

Thanks again to all well wishes. My daughter has been being treated for over 7 years. She is currently on Enbrel. The company offset much of our costs but due to insurance, we will be footing the majority of the $1000.00/month cost until the new year. Hence the need to sell off what I can to bank the monthly expenses.

I have had no time to list and re-list the watches I have but I will get them on the sales corner as soon as my Camera charges.

Regards and love,

Kurt.

Posted

Picked up one of the items to raise funds for Caroline, and Kurt will be ordering some new gen parts for it while I send him a gen dial so he throw together an ad hoc franken. The Caroline Build!

Sent from my iPhone using Forum Runner

Posted

Our doctor cries every time he see's our daughter because she is so healthy.

Which of course only highlights to me how lucky we are, and I admit to getting misty eyed when I hear of other kids suffering like this, it always makes me wonder how I would have coped in the same position.

Stay strong K, prayers coming from Australia.

Ken

Posted

Hope she gets well soon. Enbrel is an amazing drug, and I have seen it work for so many people, but humira and remicade are really similar, and may work out to have different prices. Also, think about clinical trials for any of these drugs, or even new drugs in development. The great thing is that drug companies have to do clinical trials in order to market drugs for children, and the same biologics that work for RA will likely work in JRA -- so these drug companies try to do these huge trials to get approval. Trials = free medication and much closer monitoring. Could be a great option.

Posted

I am so sorry to hear about your little girl. My wife was diagnosed with JRA when she was 3 (she's 43 now & has Ankylosing Spondylitis). It is a cruel dibilitating disease, made all the more worse by the fact that there are no outwardly visible symptoms, so peope who are clueless think it's a put-on. As a father of 2 little girls myself, I know how helpless I feel when one of them skins a knee, or bumps their head. I can only imagine how you feel. My & my family's thoughts are with you & your family. Take care.

Posted

Picked up one of the items to raise funds for Caroline, and Kurt will be ordering some new gen parts for it while I send him a gen dial so he throw together an ad hoc franken. The Caroline Build!

THAT'S the way we roll here at RWG. Nice. The Caroline Build. :tu:

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