Types of medications

Ok I've been on Pred, Dex, Rituxan, Promacta, and now N-Plate. What are the other types of medications out there? N-plate doesn't seem to be working as well, count yesterday 15K and on my 6th injection. Sitting down with doctor on Thursday 9/5/13 to talk about things and want to know treatments to talk about.

Thanks for any help.

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Amber,

I do not have a clue on what to tell you but I am interested in what you learn. Please keep me posted!

Jeffrey

Amber, unfortunately I don't know t he answer to your question, but I am curious. Please let us know what happens after you speak to your doctor. Personally, I'm tapering on prednisone now 10 Mg a week, 60mg to now I'm at 40mg after 2 weeks. I also had 3 ivig treatments.

I'm wondering what will happen next if this combo stops working.

Good luck!

Going to ask about rituxan since it did last 6-8 mouth with out the horrible side effects. Headaches and joint paint that no pill will help. N-plate has done that to me I am miss a free weekend pass to Dragon Con because of this and I get to sit at home so no more n-plate I am putting my foot down.

Hi Amber, if that free pass is going to waste my son could use it. He can't afford tickets, and really wants to go. We are in Atlanta. Please message me if it is a possibility.

I was able to transfer it to a family member and come to find out the lady in charge also has I.T.P. Small world

Amber,

There are immunosupressants such as cyclosporine, cell Cept and Immuran. These have been effective for some people on here. At the conference, they discussed that these are usually tried by trial and error, but are inexpensive and effective for some, may be worth asking about.

Thanks anyway, Amber.

I have followed your posts with interest and concern because we are also in Atlanta, and because of how much you have been through. We are all in your corner!

The Rituxan seems like a good idea. It sounds to me like you could really use a break from all this for a while, even if it only lasts six months.

6 month break would be awesome! Who knows maybe it could be longer. it is nice to know people are in my corner THANKS ROB!

Hi Amber,
Good luck for the Doctor appointment and finding a suitable drug. The immunosupressant MMF (CellCept)works for me but took about 4 months to kick in. My counts were quite stable at over 100k using a 2g per day dose. Now the haematologist is reducing the dose to 1g a day and counts so far at 80 to 90k. Hope you find something soon.
Derek

Counts today 105k, I do great with dex. The doctor talked about taking my spleen out, this is my second doctor. The first one jumped the gun and talked about it the 5 appointment. I have seen this doctor since the first of the year. We have tried lots of medications. So I am getting counts re checked next Wednesday and starting Rituxan (again) the following Wednesday. Doctor said he doesn't like the autoimmune suppressants drugs.

So here is my problem, right now I am approved at 100% with the hospital. So they will cover everything but the expense of the surgeon ($1000-2000) which I can cover. The charity program end 1/26/14 and if I have insurance by then the co-pay will be more than the cost of the surgeon. And I am sure I will have to wait 6 months after getting insurance to have the surgery.

I can re apply for the charity program, but the only way is to go to the ER again. So that mean I would have to let my counts drop and go to ER. Then they will put me in the hospital and get my counts up then send me home. It takes time to get approved and that is if I get approved. My husband has found a job, it is not much money but it helps. So I don't know if I will every be able to get the 100& again.??

That is frustrating. The panel of doctors at the conference use them often. It's always risk vs reward. One doctor said she even gives Immuran to pregnant women.

I am think of doing the Rituxan again and if that doesn't work try some thing else. I cant get the spleen back once they take it.

www.medscape.com/viewarticle/584895

found this the other day doing research. It says that the chances are better doing Rituximab with Dex. the first time i did the infusion no dex.

Blood count today, woke up with blood blisters in my mouth. My gums bleed yesterday morning along with my nose. So I am going with low counts today. But thinking positive and good vibes!!!

Amber I thought you didn't want to be immunosuppressed.. so now you are going to use two immunosuppressants at once and one of them you've tried before with no success. You are an enigma.

The doctor doesn't like the old immunosuppressed drugs and success rate is higher with the comb rituxan and dex. The first time it was just rituxan and it gave me 7 great drug free months.

Since last post counts 12k and have had 2 long nose bleeds,pop up bruising and the blood blisters. Started dex to getting rituxan tomorrow at 8:30.

Good Luck Amber,

I hope it works this time for you.

Cindy Ann

7k today

Amber,

I have you in my thoughts! Hang tough kid!

Jeffrey

Yesterday in the infusion center 1k went home then husband took to ER (i wasn't making any sense) counts 29k. Re check this morning and counts at 1k, platelets then re check 45 minutes after just before leaving and counts at 41K. I have another appointment at 7:30am for samething tomorrow. So platelets last about 12 hours in me, or maybe my treatments are starting to kick in. Either way I feel better today and my counts haven't been this high in a long time....GO PLATELETS!!

Amber,

41k is a lot better than 1k. That's awesome!

Yes it is and so happy. Going for re check this morning but feeling pretty good....

Praying for a fantastic count!

Counts today 1K (I really don't believe the counts) feeling great. Didn't get a re check after since I know that it kicks in and they are higher. Period has stopped and no bleeding anywhere, so I got Platelets and went to work. Going back again at 9am then treatment on Thursday.

Counts yesterday 8k to day 3k, more platelets and have an appointment with infusion center until next Tuesday for CBC and if lower than 10k platelets. I feel good and the pred is keeping me wide awake, but i have had good luck with pred in the past....

Counts today 13k oh yeah...

Today 4K but better than last week

2k yesterday and 15k today got last vincristine and tapering Pred since it isn't working. Re check counts in am