Good doctors

You know, I read some of the threads here concerning our various doctors...some good, some not so good, and a few should turn in their sheepskins. Several seem to be stuck in 1913; "Cut out that spleen and bring on the leeches!".

I've had the same hematologist for over 10 years. He's popular at The James and demand makes it kind of hard to get on as his patient. I may hate ITP, but cannot say enough good things about my doc and The James in general. Ya'll know I was there last week and squeaked-out a count of 4k. Insurance change prompted me to 'not treat' for a few months. Not ideal, but I can live just fine on sub-4k counts. After 10 years of this I know the drill. Now where did I put my foam rubber helmet?

Anyway, last night I get a phone call around 7:00pm; "Hi Jack, this is Spero. Just wanted to call and make sure you were doing okay. We'll get your insurance and Promacta sorted out and get you back on track."

Seriously! My hematologist called me out of the blue and talked for awhile....just to make sure I was doing okay.
Now THAT is a doctor!
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That's great! Thanks for sharing!

Not sure where to post this...Does anyone know of a really good doctor in northern Florida (Ocala, Palatka, St. Augustine, even Jacksonville). I am moving there and need one ASAP. Thank you so much.

Jack that is great - made me smile so can imagine how you felt.

jerijerijeri you'll find one - ask your present doctor to find one, might not know one personally but he can look some up in the area you are moving. My hematologist was [still is, I just don't have her any more] in a cancer center - check for one in your new area, also is there a teaching hospital nearby? I moved to Tokyo a few months after diagnosis, didn't know who I would end up with once there - turned out he was one of the best. Things work out.

Thanks for the encouraging words. The doc I now have is of the let's-just-put-her-on-steroids ilk, so I am hoping for a recommendation from a happy patient when I move. I have not had any treatment yet, only watch and see for years, but as of yesterday my platelets are down to 25k and falling, so it's time to take a more aggressive approach.

All doctors tend to start with steroids so don't be disappointed if that's what is suggested. I also think it's worth one go with steroids as they are cheap and easy to take and some do get remission from them. By one go I mean a high dose until a normal count is reached and then a slow taper over 3 months or so. If that doesn't work then it's time to try something else.

Well I suppose an update is in order. Bottom line: I'm good....started back on Promacta Monday night.
Promacta kept me in the 40k-50k range nicely for 3 years. I am the poster-geezer for the stuff!

I received a few calls last week and this week from my hematologist, the patient assistance director, GlaxoSmithKline, Walgreen's, and my insurance company. If it were all not so serious, it would be comical. My doc and the PA director set me up with GSK and I was able to start back on Promacta this week. I put aside my pride and accepted a year of assistance from GSK for a $75 co-pay. My new insurance company wanted $1400 in co-pay. My old insurance was only an $80 co-pay. My hemo-doc also set me up so I could get counts checked at a local lab rather than The James.....my new insurance charges me 20% of the $960 lab fee at The James. My doc also billed my crappy new insurance at the 'low rate'. The folks at The James are only concerned with my health and getting the treatment which works very well for me. It has been amazing.

My new insurance company appears kind of angry that I bypassed them. I received two FUNNY letters from them yesterday. Both letters were from the same person, both written the same day...
1) My Promacta Rx was reviewed and denied ... I do not meet THEIR review board's criteria.
2) My Promacta Rx was reviewed and approved ... but the pharmacy is not on their list so it's denied.

It seems that my doc sent them a courtesy letter explaining my treatment, as did the PA director, as did GSK, as did Walgreen's....and it irked them. All I have to say to my crappy BCBSOA insurance company is:
1) GSK is covering your total lack....but I'm sure your keeping my insurance premiums anyway.
2) The Promacta script comes from any pharmacy GSK and The James want! BCBSOA isn't paying a dime.


And now, a verse from that cowboy platelet ballad (sung to the tune of Gene Autry's 'Back In The Saddle Again').

"Back on Promacta again .... (ooooh ooooh ooooooohhhh [ascending])
out where the platelet's your friend, .... (ooooh ooooh ooooooohhhh [descending])
where white corpuscles aren't mean .... and I can hang onto my spleen.
I'm back on Promacta again. .... (ooooh ooooh ooooooohhhh [ascending])"
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Jack,

Love your post! I just found out about Promacta and am asking my doctor to treat me with it. I'm so glad to hear how well it has worked for me. I haven't been above 12,000 since 12/28/12 and have been between 0 and 5,000 most of the time.

Patti

I love your post - at a time when frustration is the mood it is great to laugh at your wonderful rendition of "Back on Promacta again" :laugh:

I am going to him in June after we did much research. I am glad to hear a personal story about him. I think it will be worth the wait and drive.

Jack,

So happy to know you worked this out. Thanks for the laugh, loved your song.

I too am lucky to have a great doc. It makes such a difference in dealing with ITP.

Dru

UPDATE:
I need to change the song lyrics again..but; "Back on the Cellcept again" doesn't have the same ring to it.
Short version of the tale is that after a month at 50mg Promacta, we were going to go up to 75mg dose to get a better initial response. This caused a snag in the assistance program, which raised the co-pay 400%, and I ended up taking Dex pulses from mid-December through February.
I then decided to cut my losses for 2013 and try the least expensive route (without steroids) I knew would work; Cellcept.
I had been treated with Cellcept for about three years early on in this adventure, it worked fine, but was a high co-pay. Now there is a generic version which is dirt cheap at a $10 co-pay. So we decided to give it a whirl as an interim measure.
After one month of generic Cellcept, my count rose from 4k to yesterday's 29k. I'm happy, symptoms are down now, and the 1000mg dose has more tolerable side effects than higher doses I did previously. It appears this will keep me in the 30k range through 2013. Then I will jump through the insurance hoops early to get back on Promacta for 2014. It's a big balancing act sometimes.


And a question for Vdeutsch85. Did you say that you are going to see Dr. Spero Cataland at The James/OSU in June? Just curious is all. He and his team have made my ITP trip so much less stressful than it could have been. He is genuinely more concerned about the welfare of his patients than the he is about the almighty dollar. He listens, advises, and works with you. I would have gone nuts trying to deal with some doctors that I've read about. And as an added endorsement, my twin sister Jill goes to Dr. Cataland now also.
If one must have ITP, one should at least have a doctor one can be comfortable with. You may quote me
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Good luck! I couldn't even tolerate 200 mg's of CellCept a day. Too many side effects.

I hear you Sandi.....it's the old balancing act of side effects and benefits.
But, after 2.5 months of bouncing around on constant Dex pulses, 1,000mg Cellcept is almost pleasant.
I would much rather be treating with Promacta again, I simply need to take care of some other things this year (in addition to treating ITP). The cheap treatment route it shall be for 2013.
It has been several years since I used Cellcept as a treatment and I don't recall all of the side effects I had at that time.
One thing I've noticed this time around are 'vivid dreams'. Good dreams, entertaining dreams even...but quite vivid. Usually they come in 2-4 parts like a TV mini-series, all over one night. That is new to me. Still beats taking Dexamethasone!
Hey.......what's not to like......treatment AND a show! :whistle:

I am so glad to hear that! I wish I didn't have to wait as long to be seen

That's great to hear! I am looking forward to it. I decided I didn't want to wait that long so I'm going to a specialist in a few weeks at Cleveland and Catalans in June.

I saw Dr. McRae at Cleveland Clinic last week. He actually listened to every concern I had and answered every question I had. He was very calm in his approach even though my counts were 17. He said unless I am bleeding I do not need to freak out. He was impressed with my knowledge of the latest research on splenectomies. I stated that I do not want one at this time and never once did he bring it up. Instead he came up with a new treatment that may or may not work. He did say I have to be patient because treatments take time. He said don't worry if these treatments don't work we can try other things.

Since that appointment I have felt so much better knowing that I don't have to have a splenectomy if I don't want to. I also felt that he understands thus disease and his patients! I am happy to have had the opportunity to see him.

Is cell Cept an immune suppressant?

Yes, it is.

Yep, Cellcept is an immune suppressant. I'm using it myself as a stop-gap measure for 2013.
There is a generic form available now, so it's much less expensive than it used to be.
It works fine for me. 1000mg/day keeps my count in the 35k-45k range with minimal side effects.
Far far far easier to live on than steroids. At least it is for me anyway.
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Thank you for sharing! I am trying cyclosporine right now.....have been on it for a week. Going back to Nplate injections tomorrow as well! Have you tried Nplate? Amgen is pretty good about financial assistance?

I am glad that it is reasonable now and that it works for you. I am on cyclosporine now. It is around 54 dollars a month with insurance. Hopefully it will work!

I am excited to see dr mccrae in June. I like how he suggests treatments without judgements and lets me choose what I feel comfortable with

Vdeutsch85 wrote: I am on cyclosporine now. It is around 54 dollars a month with insurance.

You may want to try 'generic Cyclosporine'. When I used that it was only an $8 co-pay. I think generic is only like $40 without insurance.
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Weird jack,

This month I ordered it through my doctor's clinic. It was only $10 dollars. Quite a deal as far as itp treatments are concerned!