Has anyone gotten into remission after one round

I'm glad to hear that those of you with nerve damage did improve. I'm not in the mood to have more limitations! I remember your post about your hands, Roberta. I can't imagine losing both. I'm glad you got the use back. I don't need Neurontin...I have enough drugs at the moment. The shingles themselves haven't been too bad, just the result of them. I caught it early and got the anti-virals pretty fast. The weakness actually preceded the blisters.

I didn't really fear counts dropping either because I knew I could get them up. I wasn't happy about the steroids because of what they did to my ability to work and raise my kids. I didn't like everyone to have to suffer because of me. I went nuts trying to be normal but felt like I was failing at that big time. Now I can look back and laugh at myself.

Roberta, the only thing I can think of to say when you post about counts dropping is to try to remind you that they may not. It's either that or say "You're right! Your counts just might crash." I don't think you'd really like that response!

PS. Like Jack, I also ignored ITP for a while. After my second round of Prednisone (within a year of diagnosis), my counts were pretty stable, over 150k. I went for monthly counts for a while, then stopped for a year and a half. Didn't know, didn't care. Ignorance was bliss. My GP wanted me to have a CBC though so I did. Counts were back down and I didn't know it. I was angry with him for bringing it back up. So, I got back on the ITP roller coaster and went "weee weee weee"!

Ann - I don't remember that (the accusation about enjoying ITP)! Don't know who that could have been. I never got that impression from you. I just thought you were very educated on the subject and took it for what it was. You read a lot about it and learned everything there was to know very quickly. You're one of the most informed ITP patients I know.

I guess everyone deals with things in her own way. I am not an avoider or a denyer. If I think something is wrong, I go to a doctor immediately. Things only get worse if you avoid dealing with them in my experience. I'm not the sort of stick my head in the sand and hope the disease doesn't see me.

I generally tell myself what the worse thing is that which could happen, acknowledge it, plan for it. And hope it doesn't. But I don't go into la-la land and say, "Oh, it's all going to be great," and not prepare myself. That would just set me up for worse disappointment.

I really think you'd have to be brainless not to be scared silly when you are first diagnosed with this. If you do any reading at all, you know how bad it can get. And if you are truthful with yourself, you know that there is no reason in the world why it couldn't be just as bad for you. So I really can't picture myself not acknowledging that this is a very serious disease and that I need to prepare for all possibilities.

In the meantime I do go on with my life. Our grandchildren are here 4 days a week. We are very active with them. I go out with friends all the time. My husband and I take off for day trips or weekend trips. We are about to take the trip with the grandkids. I hardly sit at home, mulling all this over.

I can see how whistling in the dark helps some people. But it doesn't do much for me. I'd rather turn a light on the situation and deal with it.

Hello

I went to one round of Prednisone and my platelets has been up to 125K the much for 6 months. I don't know if it could be called a remission but I heard is a partial remission. I can say I'm back into business a part time. But I still have to deal with fatigue, and tiredness. My Hematologist told me to loose some weight and change for a healthier diet. Which is tough when working on yhe street...

Health and good vibes

Reboot

RHofm50129 wrote: But you have to remember back to when you first were diagnosed and ask yourselves how positive you were about things two months into it.

Spring 1989 - I remember vividly my bruises and the call at 8pm to get to the hospital, the unknown, and the concern if I would be out of the hospital in time to have our son's birthday party that we had been planning.

2 months into my diagnosis of this disorder [don't like the word disease, I am not diseased ] I was moving to Japan with my husband and children, something we were looking forward to for months before those brusies showed up! My head was not in the sand and no way was I in la-la-land being on 60mg of prednisone, nor was I whistling in the dark [all my ducks were in a row]!

However I must have been brainless because I was not "scared silly" but was dealing with the diagnosis & the bone marrow biopsy [which hurt like h3ll] and determined we were going to make this move to Japan! Thankfully I didn't go into a funk and refuse to move - it was a fantastic experience for us, one never to be forgotten, one we learned so much from!

My Tokyo hematologist was wonderful, didn't get him until we moved and I went to the clinic and was told I could have a hematologist and which hospital he was in & I'd ride my bike to see him, that system was very interesting - turned out he knew my US hematologist. When we then moved to Hong Kong my hematologist there was a ditz and would panic if I dropped in count so she kind of frightened me and that is why I was on prednisone for so long.

And to be honest - I have never thought ahead to what I would do if I drop again - I know it is a possibility but it is not something I dwell on - probably would try WinRho again. I do know I will avoid prednisone if at all possible - in 2002 when I came out of the partial remission & my hematologist took out her prescription pad I told her I wouldn't take it and I didn't.

Guess I've been around the block a few times [won't go into my other health problems] and think it is better to enjoy instead of fret.

I hope your count doesn't drop low again!

Hey Ann - how are you doing?

Oh my goodness. I didn't think of it as burying my head in the sand. I just thought that lack of bruises and petechiae were a good sign that all was well and good. I guess I just assumed that I didn't have anything to worry about and honestly, I didn't.

Yes, we all do deal with things differently, and I do take a proactive approach to my health. I sometimes make my doctors crazy because I don't always do what they suggest or I may have different suggestions. We work it out. I also make sure I stay on top of things. I get copies of all labs because I don't trust that something won't be missed. That has happened one time too many for my comfort. I jump when I know I need help and get right on it. I can't afford not to....there are too many things that can go wrong.

But, I also don't worry about things that I can control, and I always felt that I had control over my counts one way or another. Yes, they got low a few times, but I was always able to get them back up, so what was there to worry about? It might have been a whole different ball game if I couldn't have done that, but I did. My hat is tipped to the people who live with low counts on a constant basis.

Just curious, Roberta, what was the diagnosis for the nerve problems with your hands? If you can get back to normal after all that, then maybe I can too.

I think we all react differently to this disorder, no right way or wrong way but the thing that would worry me is if that way of thinking continued. I fully understand that I major panic happens when you first get diagnosed but education and time should make your mind relax.
When I was first diagnosed I was in the ER with really bad bleeding and I was being prepared for a hysterectomy, the pre surgery blood test showed a platelet count of 2k, the doctors talked of lots of different cancer diagnoses and I think when they came back with ITP after a bone marrow biopsy that it was a huge relief. From that point on it was more like.... Ok what do I need to do to get past this.
I did have times when I freaked out but I think that was because I always seemed to be at the doctors, having blood tests, on a big dose of prednisone, it just got me down sometimes.
But as time has gone on it has just moved to the back burner, the only time I have test now is when I have my thyroid levels checked I throw in a CBC just cause I am there anyway. To be honest I think my thyroid I'd more of a problem then the ITP, not that it's a bad problem just a pain in the but to get those levels right.
So don't feel bad that this has put you in a spin and the others on here are not sticking their heads in the sand, or denying anything... They are dealing with it in their own way, life goes on, some things you can control others you can't, they are good people and have learnt heaps over the years.

I had my first bout with ITP in 2006. At that time I had 4 doses of Decadron and then followed with Prednisone and tapering. This did put me into a 4-year remission. So it is possible. This last time, my platelets fell all the way from 1-4 and it was harder to get them stabilized. But, finally, they did stabilize and have been in a 3-year remission July 19.

Sandy, I do think people should stay in touch with this forum because we never know if we will fall back out of remission. And, If you keep in touch and keep reading what's going on, I think you are less likely to fall into a panic. I've read about so many people who have fallen out of a remission after 10 years and they are in a full-blown panic. For some reason, by keeping in touch, I think it does make me feel better. Other than that, I do go on with my life and try not to worry about it. My doctor only gives me a CBC test once a year, and this doesn't even bother me any more--as long as I don't have the symptoms. Like Milly said, education and time should make your mind relax.

Yes, it would be nice if everyone would stick around, but they tend to move on if ITP goes into remission. It always surprises me to remember someone from years ago that comes back just to say hello. It's nice to hear from them and get an update. We also have many people here who no longer have a problem with ITP but hang around to help others.

Hello

I'm into Men's Cave forum now. Still in remission partial remission. Hang in there.

Health and good vibes

Reboot

You don't have to stay in the Man's Cave. You can come out! :woohoo:

Roberta - how are you doing?

June 5th--290,000; June 12--329,000; June 19-- 338,000. So I have not been below 304,000 since May 1st, a week after I got out of the hospital. I am not counting the clumping week which was 233,000. I asked not to have a blood draw next Wed because last Wed I was stuck 4 times before they got blood and one stick gave me a hard lump under the stick on my hand. So I am having it drawn July 1, the day before we leave for Florida. I am on 10mg a day til we get back. So far, so good.

Awesome!
Doesn't seem like you would need a weekly draw anymore anyway your counts are so stable. Now you can really look forward to your trip with your grandchildren...have a great time!

It doesn't get any better than that! :laugh: Good for you!

Good for you Roberta! Now you can get ready to take the grandkids on vacation. You are going to have a great time and you can relax a little! And, it will be nice to slow down on the blood draws.

Have a great trip!

Thank you all. I will be holding my breath til my draw on the first, then go off and have a good time with the kids with a little luck there.
I know this is likely to happen again and have made a timeline of what happened when. I am trying to decide if IVIG helped me; if Winrho (which put me into bad anemia) helped me. I am inclined to take only predinisone if it happens again.
Apr.10-- went in hospital with 10,000 platelets. Ivig and steroids and platelets given.
Apr. 11-- 2,000 platelets. Ivig and steroids given
Apr. 12--10,000 platelets. Ivig and steroids given
Apr. 13-- 0 platelets. Ivig and steroids given
April 14-- 0 platelets. Ivig and steroids given. Bone marrow biopsy
April 15-- 0 platelets. Ivig and steroids and winrho given
April 16-- 5,000 platelets. steroids given
April 17-- 5,000 platelets. winrho and steroids given
April 18-- 5,000 platelets. Ivig and steroids given
April 19-- under 4,000 platelets. steroids given
April 20-- under 4,000 plalets. steroids given
April 21--- 6,000 platelets. Steroids given
April 22-- 12,000 platelets. Steroids and 3 units RBC given
April 23-- 14,000 platelets. Steroids given
April 24-- 25,000 platelets. steroids reduced to 40 mg
April 26-- 90,000 platelets. Steroid taper begins
May 1-- 235,000 platelets
May 8-- 342,000 platelets
May 15-- 304,000 platelets
May 22-- 233,000 platelets but inconclusive due to clumping
May 30-- 306,000 platelets
June 5-- 290,000 platelets
June 12-- 329,000 platelets
June 19-- 338,000 platelets

I am inclined to forgo any Ivigs if this happens again. I don't think they did me any good. Doc #2 says people who respond to Ivig usually respond to Winrho. I am not sure if Winrho did anything for me either. The rate at which it came up and the fact that it never dropped low once it got started makes me think I went into a spontaneous remission of some sort. I am sure the steroids helped, but who knows?

Wow! Whatever it is that did it that is good news! Enjoy your trip! Fingers crossed it was a spontaneous remission for you and you won't need to worry in the future!

I understand once you have had an ITP event, you have a 90% chance of it occuring again. So I would like to be prepared ahead of time with what I would do.

Happy to say that I am one of the lucky ones, so far anyway. I was diagnosed with ITP in January this year. Admitted to hospital with count of 3,000 and nosebleed. Was given platelet transfusion & IVIG infusion and a 4 day Decadron (another steroid) pulse. My counts came up quickly and have remained in the normal range since. So...it does happen. I'll keep my fingers crossed for you.

DT,

You, too, have done very well!! I am very happy for you and Roberta! Do try to enjoy self.

Dee Dee

Have fun on your trip Roberta,

Thank you for all your good wishes. I just hope my good counts continue and that we have no "issues" on vacation. I will have "rescue prednisone" with me. It took so long to come up last time, that I am not sure what good that would do, but...

Hi am a new lurker but wanted to answer your question I have been off prednisone for 8 months. Holding steady at 200k.