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Medical Forum / Diseases and Disorders / Arthritis / May 2006Just my luck......
When I saw the infectious disease doc last week, he said he wanted me to go back on the IVIG because it might have been doing more good for me than we knew it was since I got so bad when I went off it. I agreed because the same thought had passed my mind on more than one occasion. I had the last one when I was in the hospital in Dec. I was having them every three weeks and other than no sinus infections and the fatigue factor being improved greatly, that was all I could really tell that was different. And at $7000 a pop (for the insurance company that is with copays and all that jazz) I really didn't think it was worth it. So I stopped them and then of course all hell has broken loose since Jan. I'm sure I can't blame it all on one thing but it may have been a contributing factor. OK - So I'm going to go back on it but my insurance has lowered the amount it pays now and he wants me to get it at the hospital outpatient clinic. Ok -- I hear it's nicer there anyway and it is set up for Wednesday. Well today they pharmacy for the hospital calls and tells me that there is a nationwide shortage of IVIG and I'll have to find another place to have it as they have to save what they have for in-patients. And the ID office won't give it to me anymore because they are not a provider of my insurance and said I'm going to have to find someplace else to get it. So they have the med and won't give it to me because my insurance won't pay them enough for it and the hospital won't give it to me because they are saving it for in-patients only. Could my luck suck any more than it has this year? I just want to scream! Thanks for listening to me bitch. Cyberhugs...DiW Oh! (((((((((diane)))))))) Big cushy hugs, lots of love, and prayers, Vickie B. {{{{{{DiW}}}}} Oh, for crying out loud. Don't these people know that this is your LIFE they're screwing with? Sheesh. DeeTee > When I saw the infectious disease doc last week, he said he wanted me > to go back on the IVIG because it might have been doing more good for [quoted text clipped - 22 lines] > only. Could my luck suck any more than it has this year? I just want > to scream! Thanks for listening to me bitch. Cyberhugs...DiW GEEZ Diane...ARGH....I think you could catch a break... Maybe a call from your doctor could find you a willing person to help you.... Lots of hugs and prayers... Cindy > When I saw the infectious disease doc last week, he said he wanted me > to go back on the IVIG because it might have been doing more good for [quoted text clipped - 22 lines] > only. Could my luck suck any more than it has this year? I just want > to scream! Thanks for listening to me bitch. Cyberhugs...DiW Oh Diane, I am praying that something changes their minds. This is horrible for you. I hate that catch 22 stuff. I feel for you and my heart goes out to you. I am hoping for the best outcome and that you get the med you need.  SignatureHugs, prayers, good thoughts, Warm fuzzies, TLC, and Love Squirrely Jo Did a bit more research by phone today, about 5 hours worth, and I think it boils down to something similar that happened with Enbrel when they gave everyone numbers and put new patients on a wait list. It's not being handled exactly the same way but the manufacturer of the brand I use will not allow the outpatient clinics to start new patients on it. They can only order it for existing patients. I am of the opinion that I am an existing patient for the drug, having used it every 3-4 weeks from April 2005 until Decenber 2005. I'm just changing the location that I am receiving it in. I received it at my doctor's office and when I was an in-patient at the same hospital that I am supposed to get it administered in as an out-patient. So....I've got a few people working on this for me including my nurse manager with my insurance company. Keep your fingers crossed for me that something will work out. Off to bed! Cyberhugs, DiW >Did a bit more research by phone today, about 5 hours worth, and I >think it boils down to something similar that happened with Enbrel when [quoted text clipped - 10 lines] >insurance company. Keep your fingers crossed for me that something will >work out. Off to bed! Cyberhugs, DiW With Enbrel the supply couldn't keep up with the demand. They had to build more manufacturing facilities. I wonder if Orencia has the same problem. Thumper Diane, pray it will work out for you to get it as an outpatient at the hospital. Gwen > Did a bit more research by phone today, about 5 hours worth, and I > think it boils down to something similar that happened with Enbrel when [quoted text clipped - 10 lines] > insurance company. Keep your fingers crossed for me that something will > work out. Off to bed! Cyberhugs, DiW Prayers and hugs, Diane, you certainly don't deserve all of this on top of the darn RA etc. Loujean >Diane, pray it will work out for you to get it as an outpatient at the >hospital. [quoted text clipped - 14 lines] >> insurance company. Keep your fingers crossed for me that something will >> work out. Off to bed! Cyberhugs, DiW {{{{{Diane}}}}} so sorry you are going through this--somehow one shouldn't have to jump through such hoops to get what you need-- SignatureLove, Alix Always remember, a cat looks down on man, a dog looks up to man, but a pig will look man right in the eye and see his equal". - Winston Churchill Some hope this morning. My nurse manager at my insurance company is setting me up with an approved IV med supplier to get the med on my behalf and have it drop shipped to my house. Now I just have to find some place to infuse it. Don't want to use home healthcare because I am saving my 100 days per year for PT. But at least it's a start. The pharm is calling me today and ***fingers crossed*** it will be with good news. Cyberhugs...DiW And still a little more hope. The out-patient clinic parmacy called me. He appologized and said I should never have been called with that info about the drug shortage and that it was his responsibilty to find a source for me. Very nice and very helpful. He said he had a different brand of IVIG that he could get but was having trouble get permission from my doc to use it instead of what he prescribed. He's also going to try and get my brand at a few moire sources as well as check into using the med I can have drop shipped to me. So.....there is a bit of hope out there! Thanks for all the good wishies -- it must be working! Cyberhugs, DianeW > And still a little more hope. The out-patient clinic parmacy called me. > He appologized and said I should never have been called with that info [quoted text clipped - 6 lines] > out there! Thanks for all the good wishies -- it must be working! > Cyberhugs, DianeW You've really been on the merry-go-round and it's only Wednesday! I hope the week ends better for you than it started and that the IVIG really does knock back all these infections again. Do you sometimes feel as if you alone are keeping the drug researchers and immune system specialists in business? I don't know how you do it sometimes, but I've surely glad you keep hanging in there. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Diane, Any news yet? Adelle I finally got the IVIG at my doctors office last Wednesday. I'm sorry I didn't report sooner but I really reacted badly to it this time and today was my first day out of bed. I've been headachey and so so so sleepy that I couldn't stay out of bed. The nausea went away the second day thank goodness. Today was the first day I was up all day and that's with lots of muscle spasms. I can never tell how I'm going to react to it but when I do 5 days is usually how long it lasts. Maybe next time I'll take 50gm of benedryl instead of 25. I had to pay more to have iut done at the doctors office since they are not a PPO for my insurance co but I'm on a wait list for the hospital's supply if someone drops off. I'm the first name on the list so that's good. I guess it's a bit like when Enbrel gave out numbers when it was in short supply. As long as I'm getting it I guess. Hopefully, I won't start getting sick everytime cause 5 days every three weeks is a bit much to take I think. We'll have to wait and ssee. Cyberhugs.....DiW {{{{{{{{DianeW}}}}}}}} We're gonna wrap you in cotton, Girl, I promise!! DeeTee >I finally got the IVIG at my doctors office last Wednesday. I'm sorry I > didn't report sooner but I really reacted badly to it this time and [quoted text clipped - 11 lines] > cause 5 days every three weeks is a bit much to take I think. We'll > have to wait and ssee. Cyberhugs.....DiW |
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