3 yrs on NPlate, now a sudden platelet drop

My husband stopped Nplate and started the dex treatment on Monday, the full dose of 40 for 4 days, then nothing for two weeks. So far he's feeling OK and his blood sugar is stable. He says he feels better just being off the Nplate. Amgen finally got the blood test results back and said his blood was normal and they didn't see anything to have caused the sudden drop he had two months ago. We're keeping our fingers and toes crossed and I'll keep you posted as we go along.

He had a terrible time after the 4 days of dexamethasone, vomiting, joint aching, burning stomach, you name it. At least his blood sugar didn't go sky high. Platelets went up to a little over 100,000. So now they're going to try just ordinary prednisone at 40mg a day and taper down. He has tolerated prednisone pretty well, but we did all this 28 yrs. ago before the splenectomy so we'll see.

Any thoughts about switching to Promacta? He did well on NPlate, but the side effects kept increasing over the years. Medicare has paid in full for the NPlate, but his drug plan won't pay much on the Promacta.

Dexa is tough to take, good news about his blood sugar. I was crazy on 20mg of dexi, didn't dare do 40. hope his counts stay up for a while!

Wanted to mention that I get Promacta for free through GlaxoSmith's Promacta Cares program. They even pay for shipping, so its really great. For people who don't have prescription insurance. My doctor's billing office did the paperwork. I think your earnings cannot be over $75,000. per year(or $57,000.) not sure the figure.

I haven't had any headache, dizziness, anything like that on Promacta. I take a low dose of prednisone along with it, and the Promacta definitely calms me down, takes the edge off the pred. Promacta is different from NPlate, but hard to say if the side effects would be different for your husband. Seems like it would be worth a try. good luck!

They think he'll have the same headache and dizziness side effects with Promacta that he's had with Nplate. So for now the plan is for him to take 20mg of prednisone a day for this next week then hope he can cut back to 3 days a week of prednisone and maintain 50,000 platelets. The count today was 88,000 and he had been taking 40 mg of prednisone for 3 days after a week off from the dex.

He had been on the lowest dosage of Nplate, which was 1 mcg or something like that. He also was on it longer than any other patient they've had so they don't seem to know much about a build up effect.

After a month, it's time for an update. He took 40 mg of prednisone and the count went up to over 100,00 so they cut it back to 20 mg a day. This week his count dropped to 28,000. Now they are going to try adding danazol twice a day. There's not much info on danazol for men. Has anyone used it with prednisone?

He's adamant that there will be no more dexa and also doesn't want to start Nplate again. I've wondered if he would still have his increasingly worse side effects with Nplate since he has been off it for a couple of months.

They think he'll have the same headache and dizziness side effects with Promacta that he's had with Nplate.

Everyone is different......but in 2.5 years on Promacta, I've had no headaches which I can attribute to it. In fact, I normally take Imitrex for migraines, but have only needed it a couple of times now in 2.5 years. So I've actually had fewer headaches overall while using Promacta. Can't say that dizziness is any more than anything else I've tried.....nothing that interferes with 'life' anyway.
In general, I have enjoyed far fewer (far far fewer) side effects from Promacta than any other treatment I've done over the past nine years. I even managed to drop about 35 pounds.

Everyone is different....YMMV.

Ann,

What doesage are you on and what is your count being maintained at?

tom,

Curious, how is the treatment going?

On Nplate my last count was 80. I only get a count done every 8 weeks. I did go down to 8 earlier in the year but it picked up again afterwards. I use the lowest dose possible 1 mcg per kg of body weight.

You might want to know that in the US you have to go to a doctor each week for the injection. In the UK we self inject at home. If I had to go to the hospital each week I'd have to think more carefully about using it. If that doesn't appeal to you then there's Promacta to try, similar but in tablet form.

my last count was 78K on 5mg of prednisone daily. my dr is weaning me off pred, decreasing it 1mg every 10 days, with hopes that it will level out at a good #. He's hoping my ins. will approve Nplate, if we have to go that route. I praying it will level out at 50K or so without any help! I've been on prednisone for 16yrs straight and the longterm side effects are not good. thanks for your input!

i've been on a prednisone/danazol 2 seperate occations. it took several years but I did go into remission. My dr. used the combo to wean me off prednisone then weaned me off the danazol. This time around my new dr took me off it and is trying to wean me off prednisone and may use Nplate as a back up or go to drug if needed. The site below seems to have loads of info. hope it helps.

www.rxlist.com/danazol-drug.htm

Well, it's been a while so here's the latest update. He has been off the Nplate for more than 2 months and was on just prednisone, first 40 mg, then 20 mg after the dexa disaster. He has been on danazol plus prednisone for a month and seems to be having good results so far. The prednisone was cut to 5 mg last week and they hope to wean him off in the coming weeks. His last count was 56,000 and the MD said he doesn't need to come in every week, but can do bi-weekly visits.

He does feel better being off the Nplate and has always tolerated prednisone well. There don't seem to be any side effects from the danazol so far and his blood sugar has been under control. I don't think I ever mentioned that he also had Hodgkins lymphoma four years ago on top of all his other health issues. He has been in remission after treatment and today he learned he's now completely clear of it so he was in a good mood and finally was optimistic about his outlook.

This probably doesn't belong in this Nplate thread any longer, but I thought I'd post it here because it gives the history of his past six months.

I'm so glad things have stabilized for him! Keep the updates coming no matter what thread you want to post in!