wondering

I know there is a likelihood that I may have a bout with ITP again, and have thought about what I would do. This first time I went in the hospital with 10,000, had 5 IVIGS and 2 Winrho's and lots of steroids. I was at zero platelets for ten days and then, during the tenth night in the hospital, started going up at about 1,000 platelets per hour. Before a few days had passed, I was in the "normal" range of platelets in the 300's and have stayed there for the next 3.5 months. I have dismissed the idea of IVIGs and Winrho as they did nothing for me and the Winrho caused me a lot of trouble. It appears that my platelets returned spontaneously, according to my doctor. So now I am wondering, did I put myself thru almost 5 months of steroids for nothing? Were they really necessary? Did they help or not? I wonder if my platelets dropped to zero again, how much risk I would be taking by waiting ten days and seeing if I start producing platelets again at such a rapid rate. I did have slight nose bleeds-- the blood never came out of the nose but it was there. And I had a bonanza of petriakca-whatever. No other bleeding but some massive bruises, especially from blood pressure cuffs til a nurse put up a sign saying I had to have bp taken from lower arm only. What do you think? Am I crazy to think of that course?

Roberta:

The thing about this sort of situation is that you could get an idea in your head of what you might do, but circumstances may change the whole plan. Sort of like a pregnant woman who decides on a natural birth with family present, but then ends up having a C-Section with no one allowed in.

Since you had a bit of an odd introduction to ITP, you really don't know what your body will do if there is a next time. I sort of doubt that just waiting 10 days without medical intervention would just spontaneously result in platelets shooting up all of a sudden. That might be a bit of an unrealistic expectation. I think something jump started your response, just don't know what that is at the moment. I also think that if your doctor were suggesting treatment, you would most likely take his advice. Or, if you saw physical signs such as petechiae, you might be apprehensive enough to want treatment. Many variables will dictate what will happen, so you have a very hypothetical situation here.

I do not think you've been on Prednisone for nothing all of this time. If there is a next time, you might get a better idea of what to expect for the future based on the two experiences, but you're not there yet. Some people do decide not to treat when counts are down, but they only expect their counts to go back into a safe zone on the rebound, not bounce back to an above normal number. Of course you could always try to wait it out, that is an option, but not one that your doctor would probably go along with.

Yes, of course, you are right about something happening that alters the plan. But keep in mind that my doctor said that he believes nothing they did in the hospital-- Ivigs, Winrhos and megasteroids had any effect at all because he believes my body was confused by the sudden loss of all the platelets and that it had to have time to reboot. Once it realized what I needed, he says, it churned out the platelets. As you know, once they start you on those megadoses, you have to get onto the slow steroid taper regardless of whether you need them or not.

Actually, I did ignore my doctor's orders. He told me to begin promacta on a Saturday when it arrived. But the info with it said not to start Promacta if you had had any response to anything else. When he prescribed it, I had not responded, but by the time I got the promacta a week later, my platelets had gone up to 240,000. I could not reach him to tell him that. So I decided not to take it. I am very glad I didn't. And from the look on my doctors' faces when they said I had made a wise decision, it was lucky I didn't.

I think I would discuss not using anything with the doctor and see how negative or positive he was on that. I know that my new doctor who had ITP bouts 17 years apart, did not hospitalize himself when the second came about. I don't know what he did as far as medication goes. I plan to ask him if he's willing to say.

But keep in mind that my doctor said that he believes nothing they did in the hospital-- Ivigs, Winrhos and megasteroids had any effect at all because he believes my body was confused by the sudden loss of all the platelets and that it had to have time to reboot.

I know he says that, but unless you had a very strange-acting acute ITP, it's unlikely that your counts would have responded so great on their own. Acute ITP can be like that, especially if it's quinine-induced. In that case, you wouldn't have to worry about a next time unless you get something that kicks it off again. My Hemo once got a virus that dropped his counts into the 70's. He did nothing and his counts went back to normal once he was well. It does happen to people, they just don't normally know about it unless they get symptoms that alert them or just happen to have a CBC.

I'm not surprised that he wasn't in the hospital with low counts. Many people are not hospitalized; I was one of them.

I also wouldn't have started Promacta in that case and of course it was wise to not follow the doctors directions. The situation changed and you recognized that. I would hope that most people would.

If that is what you want to do, as I said, you do have that option. Hopefully there won't be a next time!

I would bet if you had megasteroids you will have some problems down the road. I was on a high dose for a while and then a low dose, total of 4 years - now the blood red spots [big, small and inbetween] I get on my forearms if I brush them on something is from prednisone. Looks worse then the bruises ITP caused.

Melinda - I get those too. They seem to appear out of nowhere, probably because I just don't remember hitting it on something. I also get weird things that look like cigarette burns (they are not).

Roberta - did you get Solumedrol in the hospital? What day into it did you start Prednisone?

Cigarette burns sounds a bit like discoid lupus lesions.
Erica

I figured it was some sort of Lupus-rash. My sister has discoid and these don't look like hers, unless they come in different types. They go away eventually.

Sandi those red areas - like I said, big or small or in between sized - just appear out of nowhere, and they happen & I don't know it. They aren't a bruise but red - sometimes one may be raised a little bit and I can tell it will bleed if not careful. One day I was standing at the sink brushing my teeth, looked down and there was an L "slice" by my wrist & it was bleeding - how in the heck did that happen, I have no idea! So I moved that skin back into place and kept a tight bandage on it so it would heal in place, that worked because it didn't even scar.

These red spots are ugly & I do wonder what people think when they see them. I've also had a problem with the skin on my lower arms just being laid open & looking like a piece of meat - but have learned to move the skin back in place & cover so it will heal in place hopefully.

My new hematologist told me the red spots are due to prednisone, sun, age. The NP I saw for my pre-op physical said the cause is prednisone, happens to some not all.

Oh and sometimes those red areas don't leave totally - there was one on my right arm just below the wrist, I can still see where it was because the skin has a color just slightly darker than my skin.

So with megadoses of prednisone things could be worse, never know - time will tell what that prednisone has done.

No, I didn't get that drug. The only thing has bothered me other than the insane vertigo I had til I dropped to 10mg is the muscle spasms. I had it second week after I was out of the hospital. But it only lasted about 2 hours. Very painful.
So last Tuesday, I started feeling like I had pulled a muscle down the right side of my body. Over the next few days it went across my whole back. Then Friday suddenly my whole back seized up. It was so very painful. I went over to urgicare. They gave me flexerol (sp) and within 2-3 hours all had cleared up other than one spot under my shoulderblade on the right side. It feels like someone is sticking a foot into my back. When I don't want to tolerate it anymore, I take 2 hydrococone and the pain goes away.
But I don't know if it steroid caused or what. My hema told me the first time that steroid taper can cause muscle spasms. I don't know why it would choose to do it now when I am only on 2.5 mg a day!

Sandi, they started me on steroids the evening I arrived-- about six hours after I saw the rash.

I take Flexeril. I've taken it daily for years. I didn't realize how well it worked until I stopped taking it once. I have not heard of tapering causing muscle spasms. Usually with Prednisone, spasms are caused by low potassium. Gatorade and bananas help. Couldn't hurt to try it.

The reason I asked about Solumedrol is because it is often an IV form of steroids given in the hospital. If you'd had that, it could explain why you didn't respond. I have never responded to Solumedrol, but I do respond to Prednisone. I also did not respond to Win-Rho at all. I've never had IVIG, so I don't know about that one, but some people don't respond to that either.

I got steroid injections. If I were hooked up to an IV already, they just injected it into that. Otherwise I just got an injection.

I think what might be happening, Melinda, is what happens to my father-in-law. The steroids thin the skin and it is more easily injured. At least that's what his doctor says. My sister's mother -n-law was in a nursing home. They said the elderly (she was 84) should only have two baths a week because their skin is so fragile. course, they might not have had the time and were rationalizing.

I had five IVIGS. I actually went down from 10,000 to 2,000 after the first one. Nada on the others. I just stayed at zero for 8 days, then got 12,000, then 24,000, then 90,000 etc. I didn't have pill form of prednisone til I got home.

Re Winrho, my doc #2 says generally, if you respond to IVIG, you respond to WinRho and vice versa.

Melinda,

My 87 year old father has had that since he was 50. He was on prednisone many times for years and it thinned his skin. He has always just moved the skin and covered just like you described. He also gets sometimes those red spots that sound like you describe.

Other than being careful with that to avoid infections, he is one of the healthiest people I know, lives alone, takes good care of himself, and travels frequently, off to Portugal next week!

Thanks for letting me know Dru - and I'm glad I'm doing it right when the skin gets laid back, I learned that after I got a couple scars because I didn't put the skin back in place. Your father sounds like a neat person, hope he enjoys Portugal!

RHofm50129 wrote: Re Winrho, my doc #2 says generally, if you respond to IVIG, you respond to WinRho and vice versa.

Not always. There have been a lot of people here who didn't respond to both, but did respond to one or the other. Before the TPO's and before the black box warning on Win-Rho, some people were stuck with IVIG only because they didn't respond to anything else. They work differently too, so I don't know why they would be expected to give synonymous results. If anyone can find an article that supports that, you win the prize! I'm curious. I looked quickly, but didn't find anything. There are a lot of old articles about a response to IVIG or Prednisone predicting splenectomy response, but that has been disproven (and it's irrelevant).

I don't know....you're a mystery, Roberta! Your whole story seems so similar to a quinine reaction.

I've never take quinine though. I don't drink alcohol, so I have never had tonic water or bitter lemon. I was just sitting on my bed wrapping some birthday gifts when it hit. I had had the slightest of nose bleeds the day before and that morning. I wish I could pin it on something I could avoid forever.

Don't wrap any more birthday presents! :whistle: