Probenecid and Sulfa Allergy.

[Ema]

Still trying to work out the costs for the IVs with the hospital.

The hospital coordinator said my 20% of the med would be about $150...which makes no sense because if it is covered under Medicare Pt D, it should be covered at the same cost as the rest of my generic meds (2.65).

The nursing/infusion center costs should be under Pt B and I have to pay 20% in MI. It totally sucks because I have state coverage in IN which would pick that up if the doctor would let me do the infusions at home.

I hope that we can get this figured out and it isn't cost prohibitive after all this! I'm supposed to hear more back from the hospital tomorrow.

Ema

 

[Tristen]

Still trying to work out the costs for the IVs with the hospital.

The hospital coordinator said my 20% of the med would be about $150...which makes no sense because if it is covered under Medicare Pt D, it should be covered at the same cost as the rest of my generic meds (2.65).

The nursing/infusion center costs should be under Pt B and I have to pay 20% in MI. It totally sucks because I have state coverage in IN which would pick that up if the doctor would let me do the infusions at home.

I hope that we can get this figured out and it isn't cost prohibitive after all this! I'm supposed to hear more back from the hospital tomorrow.

Ema

Ema,

I would call your part D and ask them if the drug is covered. If so, you may want to ask your doc if you can get it with a script and pick it up yourself and bring it in with you. But your doc may have a good reason for dispensing it from their clinic. Maybe your doc thinks he/she can run the tx longer dispensing it from their stock....dunno, just a thought. Won't hurt to ask. May just save you the 20%.

Personally, I think it's worth having to pay the extra 20% (if your one that will benefit from the drug) if that's what you have to do. Either way, I'm glad your moving forward with the tx. Let me know if I can help with anything.

Best,

T

 

[Ema]

Ema,

I would call your part D and ask them if the drug is covered. If so, you may want to ask your doc if you can get it with a script and pick it up yourself and bring it in with you. But your doc may have a good reason for dispensing it from their clinic. Maybe your doc thinks he/she can run the tx longer dispensing it from their stock....dunno, just a thought. Won't hurt to ask. May just save you the 20%.

Personally, I think it's worth having to pay the extra 20% (if your one that will benefit from the drug) if that's what you have to do. Either way, I'm glad your moving forward with the tx. Let me know if I can help with anything.

Best,

T

It's more the 20% of the hospital bill that I'm worried about though it all adds up of course.

I checked online and it is covered under my Pt D plan though I have found that they typically say everything is covered and then find a reason to deny it later.

Why would he think he could run the therapy longer through dispensing from their clinic? I'm not all that savvy with insurance to figure that one out!

Thanks T!

Ema

 

[Tristen]

It's more the 20% of the hospital bill that I'm worried about though it all adds up of course.

I checked online and it is covered under my Pt D plan though I have found that they typically say everything is covered and then find a reason to deny it later.

Why would he think he could run the therapy longer through dispensing from their clinic? I'm not all that savvy with insurance to figure that one out!

Thanks T!

Ema

I believe the drug would be billed under Medicare part B (rather than part D) when used from his clinic stock, and given in his clinic. I suspect there would be less limitations as far as $$ coverage and duration of tx. this way. Not sure where I got this idea, and I could very well be wrong.....but may still be worthy of asking.

 

[Ema]

So the latest...

The cidofovir has to come from the hospital pharmacy. They will not let me bring it in from outside for "legal" reasons. So therefore, it is covered und Medicare Pt B instead of Pt D and will cost about $150.

The cost for the infusion center is about $100 if the infusion takes 6-7 hours.

So about $250 bucks a shot. If I could get the med covered under Medicare Pt D, it would be less than $100 total. It seems like the hospital pharmacy should have to accept Pt D!

If I could do the infusions in my home state, they would be totally covered and essentially free. $500/month is a lot of money. Sure wish there was a money back guarantee if it didn't work. Sure wish they were more amenable to helping me get them done in my home state as well.

I made the appointment for the first one at the end of the month though.

 

[vli]

Sure wish they were more amenable to helping me get them done in my home state as well.

hi Ema,
does that mean you tried to ask Lerner if he'd let you do them in your home state and he said no?

have you spoken to his other Vis patients? do you know if they're all getting it from the hospital too?

 

[Ema]

Yes, I was told they have to be done in MI.

I haven't talked to any other current Vistide patients. I'm not sure how I would find them except for on here!

 

[Ema]

My final thought was to apply for the Vistide patient assistance program. I called and was sent all the paperwork this morning but when I called to ask a question while filling it all out, I was told that that program had been suspended due to the Vistide recall. Grrr. Lots of dead ends unfortunately. Why they couldn't tell me that this morning before I started filling it out, I will never know.

Ema

 

[vli]

My final thought was to apply for the Vistide patient assistance program. I called and was sent all the paperwork this morning but when I called to ask a question while filling it all out, I was told that that program had been suspended due to the Vistide recall. Grrr. Lots of dead ends unfortunately. Why they couldn't tell me that this morning before I started filling it out, I will never know.

Ema

Ema, do take comfort in the fact that they told you within a few hours and didn't tell me for a MONTH.

 

[vli]

As far as the IV, the script read for cidofovir, so I would guess that it is the generic and not the brand name.

hi Ema,
I called up Dr Lerner's office and whoever answered did say the hospital is giving generic cidofovir.

 

[Ema]

Here is a study I found interesting on the possibility of using a reduced dose of probenecid.

Ema

 

[jeanne]

Six months into my Vistide Tx, I developed a severe allergy to Probenecid. I had no other drug allergies before this, and now still do not react to sulpha, or any other drugs. My doc said that I would have to be very careful with Sulpha drugs, but I've tried several since that with no problem. My impression after speaking with my local GP and a few pharmacists, is that probenecid is very distantly related to the sulpha family, and therefore not much of a threat.

You will be doing the IV tx in the docs office and therefore can be promptly treated if you do have an allergic reaction. You will be in a safe place, so don't worry. When I reacted, they just hit me right off with IV steroids and benedryl and put it down immediately. Next time we tried a reduced dose of the Probenecid, but I still reacted severely....so that was the end of that drug, and I did the next 6 months on Vistide without it.

Probenecid is not used just to protect the kidneys, it's also used to hold blood levels of the Vistide longer. Vistide is cleared through the kidneys quite quickly.

Yes, Vistide was very helpful for me. It brought me back from the bedbound abyss. I'm a partial responder having something like 70% recovery on the drug. But that's really hard to measure since I do still have bad PEM, but the OI and other symptoms are gone.

It seems more docs are doing the Vistide Tx now. Is this due to Dr P's talk in Paris?

I am a patient of Dr. Enlander's. He wants me to begin treatment with vistide. I am allergic to probenecid so he is cautiously starting me on very low doses of vistide without probenecid. I had my first trial dos this week and did ok though am very wiped out. I was wondering about your experience of taking vistide without probenecid since this is a very scary drug. I have been on 3- 6 month rounds of valcyte over past 3 years. The last round was unsuccessful. I also was on gcmaf for a year.. did great in the first few months and then slowly lost any effectiveness.I wouldgreatly appreciate any info you could give me as to your experiences of vistide infusions without probenecid.. any precautions etc. Thank You!!!

 

[vli]

Wow. He's willing to do this now? He did not give Vistide this time last year.

 

[jeanne]

Wow. He's willing to do this now? He did not give Vistide this time last year.

Yes. I spoke to him again yesterday since I have been wiped out after receiving test dose. He believes the probenecid's main function is to potentiate the vistide and slow it's removal from the kidneys. He is looking into our options further and will meet with me on Monday. He recently had a medical conference and was very interested in dr. Peterson's positive results with vistide. I will post how he intends to proceed.

 

[Tristen]

I am a patient of Dr. Enlander's. He wants me to begin treatment with vistide. I am allergic to probenecid so he is cautiously starting me on very low doses of vistide without probenecid. I had my first trial dos this week and did ok though am very wiped out. I was wondering about your experience of taking vistide without probenecid since this is a very scary drug. I have been on 3- 6 month rounds of valcyte over past 3 years. The last round was unsuccessful. I also was on gcmaf for a year.. did great in the first few months and then slowly lost any effectiveness.I wouldgreatly appreciate any info you could give me as to your experiences of vistide infusions without probenecid.. any precautions etc. Thank You!!!

Since the Probenecid's function (in part) is to hold blood levels of the Vistide longer, my only concern was getting enough benefit from the Vistide alone......but all did go well for me. As far as Probenecid protecting the kidneys, I had no problems in that regard either. I couldn't say how much that's true for others. Just keep an eye on your labs. I was doing labs 3 times a week to monitor kidney and liver function and never had any problems.....this is true while I was on the Probenecid and then later developing the allergy, without it.