Update

[Ruotsi1]

We had originally thought that my WG's was affecting my lungs/sinuses only, but since the end of June my creatinine has gone from 0.6 -> 1.98. I am taking 60mg prednisone, bactrim ever other day, ferrous sulfate 2x/d, calcium, vitamin D, multivitamin, and fish oil. I am suppose to start on weekly Fosamax this week. The original plan was to get insurance approval for RTX, but when my kidneys started worsening my nephrologist called my rheumatologist to recommend starting IV cyclophosphamide. I have had one infusion, two weeks ago, with another planned in two weeks. I feel quite a bit better than I did 1 1/2 months ago, but still struggling with fatigue and have some discomfort in my chest when taking a deep breath (Pulmonologist said this should imprpve with time.). I was reall hoping to do the RTX, bu my rheumatologist wants to do the cyclophosphamide first, then possibly the RTX. Does all of is sound typical...for a crazy disease that isn't so typical. :mellow: Thanks! I really enjoy reading this forum!

[Dirty Don]

Yes, that protocol is very typical...most places like starting with the lesser drugs if they can get away with it for the patient. RTX is the top and end of the line so far for WG patients...docs would rather save that for last if others don't work. Mine has threatened me (not really, call it a strong reminder!) with RTX next if the mtx doesn't do its job, again, so far, been lucky.

[Debbie C]

Also alot of ins. doesn't pay for RTX and it is about $ 16,000 for an infusion. Hope the ctx does the job and the creatine gets back to normal soon.

[pberggren1]

One infusion of rtx only costs about 4700 here.

[Debbie C]

ONLY 4700,that's still ridiculous for people who need it to live !!

[Dirty Don]

ONLY 4700,that's still ridiculous for people who need it to live !!

Drugs are expensive to make, drugs are made for profit...living...hmmm, it's worth a thought or two...RU kidding me, that's why there's insurance, oh, but so many can't or don't have proper life saving and/or improving insurance...now what? It's a debate we don't/can't/won't win as long as there's a profit motive...on the other hand, there wouldn't be any if there wasn't a profit margin to be kept. Sighs...

[Alysia]

One infusion of rtx only costs about 4700 here.

here, one infusion of 500mg costs about 2250 $ to the health service. I had to pay about 200 $ for 1000mg. I wonder about the difference in costs in different countries.

[Psyborg]

Because of our structure of the medical system in the US, the drug companies often charge significantly more for drugs here to make up for having to sell lower in other countries. They also make up a large portion of the R&D costs on the US market.

When our insurance covered things better it wasn't so bad (unless of course you weren't covered) but these days the out of pocket for insurance plans here is pretty severe. i know last year I had 10000 out of pocket between a procedure for my sinuses and an RTX infusion.

[Wegetarian]

the drug companies often charge significantly more for drugs here to make up for having to sell lower in other countries.
I would think its the opposite, they charge as much as the market can bear. If they can charge 16.000 for a drug that is really needed they will. If some small countries health care system won't pay such a price they can sell it cheaper or decide not to market it there at all. At least that would be my assumption.

I was a bit worried about the cost of my meds when I went to pick up the MTX, folic acid and bone medicine. I though I'd take the receipe to my employers health care doc since then my employers insurance would at least compensate some. To my surprise the bill at the pharmacy was about 35 euros for me, so I didn't bother with going to the employee health care about it. Guess MTX is really cheap. If I remember correctly the patents on meds expire very rapidly, and with the long trials its hard for them to even make a profit on new medicine since they are allowed to be copied so soon.

[pberggren1]

I have 2,000mg sitting in my fridge. I could sell it really cheap.

[Alysia]

I have 2,000mg sitting in my fridge. I could sell it really cheap.

:lol: how much ?
is "business" allowed according to the forum rules ? jk.... lol :flapper:

[pberggren1]

For you my sweety it would be free.

[Alysia]

For you my sweety it would be free.

awww, this is so sweet of you. thank you so much, you are so kind :love:

[pberggren1]

I would do it for all my sweet Weggies.