Need some help please.

Don's in the hospital receiving extremely high doses of solumedrol and it's not doing a thing for his platelets. They gave him two units of platelets and it caused a temporary rise of 22 (from 3), but dropped back down to 6. Last night they gave him another two units of platelets and his count has dropped to 5 without any increase. Doc said this morning to wait and see if the steroids kick in. They don't want to give him any more platelets because they think they aren't helping anymore. On top of this, the steroids have caused his normal blood sugar levels to go up to 239 last night (normal being no higher than 120), so they're starting to give him insulin. I begged the doctor to consider his overall health and stop the steroids and she refused, saying if he ends up with diabetes they'll just have to treat the diabetes. Plus they insist the weight gain is for real, he gained 30lbs in one month from the last dose of steroids. With him paralyzed, any weight gain can cause loss of independent mobility. I'm sorry to dump on you, but as I'm writing this I feel so overwhelming sad and alone. Thanks for any advice you can give me.

I know it is terrifying. I've been in this exact situation. Hang tough.

Platelets are a temporary fix, and make the ITP worse, actually, because the body becomes a ferocious eater -- as my doctor used to describe it, platelets just fuel the beast. Platelets can help stop acute bleeding, short term, but do not expect them to raise his counts. They won't.

On high dose solumedrol, my hemonc swears it can work, but I've never seen it. We went up to 2 grams once and 1 gram another time, and neither worked. In both cases, I had to take insulin, but that stopped when they dropped the dosages and I do not have diabetes. I do have some joint issues that I think came from the solumedrol, but it's not a huge deal.

The treatment choices are always up to your husband, not your doctor.

You need to look at alternative treatments. I don't know your husband's history, but you should, in my view, be looking at Rituxan, Win Rho, Promacta, and/or a splenectomy. I know splenectomys are disfavored, and I avoided having one for almost 40 years. But, after two head bleeds and counts bouncing around zero, it became pretty easy to sign the papers for the surgery. They can do an open splenectomy with very low counts if you find the right (trauma) surgeon. In my case, the splenectomy saved my life, I believe, although it was not a longer term solution. I went with the splenectomy because Rituxan, Win Rho, steroids, Imuran and a few others had not worked. We needed something that would work very quickly, and that meant trying the splenectomy as a treatment.

Your doctor should be discussing alternate treatments with you now, even while you see if the roids will work. If not, get a new doctor. Insist on discussing other treatments.

I've been where you are. If you would like to talk, send me a PM and I will call you.

Thanks Gort, I was really hoping you'd be on here because I've read some of your posts and am familiar with your ITP trials and tribulations. I think spleenectomy for Don would be the last chance treatment because of his other health problems, most notibly he has had blood infections and one MRSA infection in the last year. You've lesioned my anxiety about diabetes a little too, thanks for that. When we talked with the doctor today, we brought up Nplate because in an earlier appt. that was mentioned by the doc. She said they wanted to try high steriod first, then said it was difficult to get Nplate to be administered in the hospital, easier for the clinic to get it. Don and I talked, and I called the clinic and left a message to the effect if they would dismiss Don from the hospital, I would take him home and put him safe and secure in bed and he wouldn't get up until they could get Nplate in the clinic. They haven't called me back yet, but I suppose they will discuss it among all the hemo docs in the clinic and let us know tomorrow. Second doc, in our town, there are only two groups of hemo docs, this group is suppose to be the best. Thanks again for being there today.

hello donswife. I'm sorry I don't know your name! Excellent advice from Steve there. There are so many other options. I took NPlate. It did bring up my counts ALOT! Even to high. I was up to 388 on them. That's to much from what I've heard. I also have had Rituxan, I'm thinking it hasn't worked, but I'm still waiting. It's been 4 weeks since last treatment. What you said the doc said about not stopping the steriods blows my mind! I think some doctors get god complexes! Again, what Steve said is true. The treatment is up to Don and hopefully he'll discuss it with you too! Can't wait to see what happens.

I'm glad that Steve mentioned Solumed not working, because I've never seen it work either. It's a steroid, but doesn't seem to do the trick like Prednisone and Dex. I am very responsive to steroids, but have never had a rise from Solumed. It's not commonly used for ITP. I had it as a pre-treatment for Rituxan. Platelet transfusions are also pointless and there are a few reasons why they shouldn't be used unless there is uncontrollable bleeding.

Does your husband have any symptoms? There are other treatments that can be tried instead of being stuck on the same things that are not working.

Hi Sandi, thanks for your input on solumedrol. I read today that it isn't indicated for ITP either which surprised me. I thought all steroids like that worked the same. The hemo doc wouldn't even call me back (or Don) today, instead left a message that the nurse was to call me and tell me they would not release Don, and if they decided to use Nplate, they would go through the hospital, and they still insist on the high dose of solumedrol. I talked with him tonight and told him my fears, even printed out some credible web sites discussing the serious side effects of it. He still says he wants to wait and trust the doctors. Wow, I'm really floored by you guys confirming that the solumedrol isn't right (and thankful you gave that info to me). I guess Don's stuck in the hospital until who knows when, meanwhile, he's gained an add'l 3 lbs since he went into the hospital on Tuesday. And that's even when he missed 2 meals because of tests. I fear that by the time he gets out (if he ever does)I'm not going to be able to handle that big of a guy, and of course, I'm worried about that. Thanks for the support.

I'm really hope Don Gets better soon. I understand how you feel about the steroids. I have serious fluid retention issues with them also. I'm on a diuretic now. I have had solumedrol 3 times 1 gram per day for 3 days. the first two times it worked and It is the only steroid that has ever gotten my platelets to the "normal" 135k-450k range. on the third occasion it did nothing. Since then if I want a steroid pulse i have been using dexamethsone (Decadron) which takes me in the 80's or 90's. I also had insulin when in the hospital on those high doses but since i've been out the blood sugar tests have been normal. I do believe that they will find something to help don and he'll be back home soon. I'll be praying for you guys.

Thanks Lorie for the prayers, I'm waiting for the doctor right now and am going to insist that they talk to us about alternative therapies. The doc is being a "smart alec" right now, because instead of calling me or talking to Don about our question on going home from the hospital and starting Nplate in the clinic, they told the nurse to call me and give me the message that they are going to stay with solumedrol high dose and if they are going to consider Nplate, they will do it at the hospital. They also cited the fact that Don has two pressure wounds (has had them for over 6 months) as reason why he can't go home. That's completely BS, because they don't treat or care for them, they've know about them since we started going, and because of the steroids, the healing is stalled out. I'm shaking angry right now, and poor Don is so large (he weighed 271 last night) that I'm afraid he won't be even to help me get him in the wheelchair (he's paralyzed) because he's become so weak. On the diabetes, I don't know why they're not keeping him within the normal range with the insulin they're giving him. They seem to be content to keep his blood sugar at 160-175, Isn't that dangerously high?

I'm not even going to pretend to know about all of this stuff you're talking about but - is it possible to get another opinion? Could you ask for a file review from the head of hemotology or whatever department he's being serviced by?

I had to do that when I had skin cancer because I wasn't happy with how I was being treated and it changed my course of treatment. They also called for a big consult with the head of OBGYN because I was pregnant at the time.

And the situation you're describing is much more serious than mine was.

Just a thought. Hoping things get better for you both.

THANK YOU all so much for your help. I appreciate being able to talk with someone who is/has gone through this. I just talked with the hemo doc and he's agreed to take Don off of solumedral and give him Nplate - TODAY! And the kidney doctor says he wants him on a diuretic to try to remove some of the fluid (and of course, that med is something that can cause low blood platelets). But we all talked frankly about the situation, the doc won't let Don leave the hospital until he gets a count of 15-20. I was firm when I said I didn't want him to be sent to a nursing home if it was taking too long, that I would take the responsibility of taking him home. I don't know if he quite agreed to that, but I can hike up all of my 5'1" and stand tall if I have to. Yes thanks Michelle, I emailed PDSA yesterday and asked for dotors within 200 miles of our town and they sent me several, one is even in the hemo group that his doctor is in so we could ask for him to look at the file and see if he can see something. Also Joan Young added that it's always good to find a doctor in the largest teaching hospital which is 50 miles from us, so if things don't progress with NPlate, we'll ask for a referral up to them. Oh, and his count today was 3 so obviously solumedrol for 3 1/2 days wasn't working. Thanks so much, have a happy 4th of July.

I've said it before and I'll say it again. I'm willing to deal with whatever ITP wants to throw at me. Yes, it's no fun sometimes, and even quite serious, but this is my lot and I will deal with it. Fine. Bring it on. I've told myself a thousand times -- it's not cancer; I can see, I can read, some days I even climb mountains. I've bungee jumped. I've hiked around volcanoes. I've married, I have a son. I've done almost everything I want to do.

But I wish it would leave my family alone. I'll take the fear, fine, no problem (heh, except very occasionally). I can't take the fear in my wife's eyes (and she isn't easily spooked, being a doctor). Or my mother's eyes back when I was a little kid and they told her it was Leukemia.

I'll take it, but I wish it would leave my family alone. ITP can be bad for the patient, but it's much worse for our families and friends. We learn, we learn about living with low counts and being a patient patient and all of those great ITP lessons. But some of them never understand, and they always worry.

So, to you, Don's wife, three cheers for hanging in there and taking care of an ITPer. We all owe you a debt of gratitude. I'll drink a (fake) beer in your honor on the 4th.

I'm really glad they are taking him off of the Solumed. It seemed to be doing more harm than good. Good luck with N-Plate.