Has anyone gotten into remission after one round

Of prednizone? Am just wondering. I understand only 15-30% of people do. Hoping to be one, of course. If you have gotten into remission after one round of prednizone, how did you counts go? Did you fluctuate or just plateau early?

Roberta:

The way it tends to go around here is that the people who go into remission after one round are never seen or heard from again. I remember quite a few and they posted for several months after remission began, then dropped out of sight. A few came back after a year or so to say they were still doing well, but they don't hang around. I can't think of anyone here who is in that situation, so you probably won't get answers to that question unless someone happens to pop in.

Yes, I figured as much. Thought it was worth a try.

It depends on what you call a remission [and that has been discussed here at length, the definition of remission] - I consider myself having been in "remission" for almost 10 years after about 4 years on prednisone [my choice, we lived overseas and I didn't want to go off of it with a hematologist who freaked if my count dropped], my count was between about 80k and 120k. I no longer had a hematologist and blood work was for my yearly physical.

Then a tetanus booster in 2002 took my counts to the gutter, my son found me this group and my old hematologist was my hematologist again. I declined prednisone and had 1 IV of WinRho and have not had to treat since. So really I consider myself in "remission" once again - counts here & there & sometimes in the normal range - others would disagree.

Melinda wrote: - counts here & there & sometimes in the normal range - others would disagree.

Not me! Since we had that discussion many years ago, the definition has been refined. Remission = maintaining normal counts with no treatment. Partial remission = maintaining below normal (but safe) counts with no treatment.

You fit the definition!

Yeah I have and I am still here . I was on prednisone for nearly 12 months in 2010, started prednisone in January 2010 and took it till December 2010, counts since then have been between 100 and 250 but mostly in the low 100 so I am happy with that

Wow! That is one slow taper. I think the prednizone is affecting my knee joints. They seem less stable to me.

Yeah it was very slow and very miserable

Why was it miserable? Did you have a lot of side effects? how many mg did you start from? I started at 40 the third week in April. I am not alternating 10 and 20. Once I hit 20, the worst of the side effects-- the loss of equilibrium-- passed off.

Sometimes the lower in dose you go during the taper, the worse withdrawal can be. It can include joint pain, muscle pain, extreme fatigue, depression, etc. A slow taper can minimize that, but you feel some of it for a very long time.

Well I started on 75mg for about one month then slowly decreased by 5 mg over different periods of time, I often had to increase because platelets would start to drop. I actually found the last bit the worst, from about 25mg down...the joint pain and muscle pain was awful, I was exhausted and constantly cried over really silly things.
The pain continued for about three or four months after I stopped, I am happy with the result but would I do it again....I really don't think so.
I am now felling pretty good, but the thought still crosses my mind every now and again is this the month it's going to come back but at least it's not an obsession anymore... Just a thought buried way down deep in my mind
I still come here every few days just to see how everyone is and see if I can help anyone is a small way but I am forever grateful to these people who have helped me through a really difficult time. I send them much love from across the ocean.

Thank you Sand- I was in remission then [partial not "remission"]

I was on prednisone from 1989 - 2003 - last years were low dose, I did not want to get off it and maybe crash when my hematologist would panic anytime my count went down so I waited to get off until we returned to the States.

Once home I did a very slow taper and I attribute that slow taper to not having any taper side effects - but that is my experience, we are all different.

I have read that steroids stay in your system for six months. And that is interesting. Because I also read that you can't use any of the flacin antibiotics when you are on steroids-- like cipro-- because it increases your chances of your muscles snapping. And I am wondering how many doctors know what antibiotics can't be prescribed. My doctor has me on calcium. I read that you can't take cillins if you are on calcium?????

Roberta - I actually had that happen two years ago. My GP gave me Cipro for an infection and I got Achilles Tendonitis in both feet that lasted about 6 weeks. They didn't rupture so I guess I got lucky. That side effect can occur even if a person is not on steroids, so it's a risk either way, but greater when on steroids. I was only on 15 mg's at the time.

I'm thinking the ITP docs should have some sort of chart to check out before they prescribe stuff. Even then, you are lucky if a doctor listens to you. A few years ago I had a cyst which ruptured and abscessed big time. I told the doctor I could not take minocycline. five minutes later he prescribed minocycline. HELLOOOO.

Yeah, I have that happen all the time too. I now pretty much tell the doctors which antibiotic to prescribe. A few months ago I went down the list of no's with my GP and he got nasty and said, "Well, what can you take?" I told him and he wrote the script. But as the years go on, I find that I'm reacting to almost everything that I take. I consider every drug a risk, but you have to weigh the pros and cons of which is worse, the illness or the drug.

I should mention that I'd taken Cipro quite a few times while on Prednisone with no problem. I considered it to be one of my safe antibiotics. Now I can't take any from the quinolone family.

My count was 290,000 today, down from 306,000 last Thursday. A little bit of a bummer. I wish it would stay put.

Really, there is no difference between 290k and 306k, platelets are not static and there is a lot of normal fluctuation. So you should not be bummed at all!

For me when I taper I go from the 300s at 20mg prednisone to about 70k at 15mg .

I'm scared to death about going straight 10mg every day. I am tempted to stick in a 20 here and there. But I'm not sure that would matter. Guess I will see what happens at Wednesday's draw.

Since your counts have been stable during your taper you probably shouldn't stick an extra 20 in there, just let your body adjust to the 10mg and hopefully your back pain will ease up.

Yes, but as you know, they could tank at any time. That's the nature of the beast.

Roberta:

Just for fun, let's pretend the glass is half-full here. When you hear a positive comment, try not to counteract with a negative. Take that comment, mull it over, and tell yourself that there is a possibility that counts will be okay.

I have a similar situation. Last week, I got shingles which affected a nerve in my arm. It caused extreme muscle weakness in my left hand. I can't button my jeans, paint my nails, open jars, get the cap off of toothpaste...the list goes on. My fingers will not move where I want them to and they cross each other when I grip something. It's been frustrating to do daily tasks. Anyway, I've read that there is a 50% chance that damage could be permanent. But - there is also a 50% chance that it will not be. I am opting for the temporary disability. Hope is all I have. I am also thanking my lucky stars that it affected my left hand and not my right (I'm right handed). I'm looking at the positive because it could be worse. If it were my right hand, I would not even be able to sign my name. I was afraid that I would not be able to even hold my camera, but I did try today and I can. Hooray for small miracles!

I am on high dose Prednisone right now to try to decrease inflammation and prevent permanent damage. I see my neurologist next week. I got shingles in the first place because I've been on potent immunosuppressants for the last two years. I was giving myself Methotrexate injections for over a year, but that caused lung damage so I had to start Imuran instead.

I'm fed up with the autoimmune crap too, believe me. It's been 16 years of dealing with it one way or another. But you have to hang onto hope first and foremost, and you have to try to stay positive. It's too easy to get depressed and down in the dumps.

You are stronger than you think, and you will be okay no matter which way this goes. But attitude is everything and I think you can try on the positive hat for a while. I'll bet it fits you really well!

RHofm50129 wrote: Yes, but as you know, they could tank at any time. That's the nature of the beast.

I've had ITP since spring 1989, if I thought like that all these years what kind of life would it be? I used to have as my signature in the old discussion group site [before anyone else said it]: I have ITP - ITP does not have me

If we want to get down to the nature of the beast: Waking up and getting out of bed in the morning is dangerous to your health.

Enjoy!

Wow Sandi, shingles? Sorry you have to deal with that......but as always your positive attitude will get you through. Hope it goes away quick! I had shingles a few years ago when I was on prednisone. I had some nerve damage too but it went away kind of gradually.


Roberta: listen to Sandi she has been dealing with people with ITP for many years. A positive attitude can help get you through.
You respond well to prednisone and you have 2 doctors who seem to be on top of things....so you are doing well and should continue to do well.

Sandi,

I hope you feel better ASAP! My boyfriend had those and he said they were extremely painful! Luckily they didn't last too long. I think his immune system was really week because he had not slept due to his board exams. That was 5 years ago and has not had them since so hopefully you won't get them back either!

I hear you guys, and I am sure you are right. 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. You are talking years into it, not weeks into it.

Sandi, I am sorry you have been dealt another crappy card. I know really well how hard it is to do without your hands. I lost the use of my right hand due to nerve damage, and a month later the left one as well due to sympathetic nerve damage. So for three months I could not open a can or cut my meat or wash my hair or tie my shoes or any of the thousands of things you need your hands for. Touching a kleenex felt like touching blades. I put bandaids on all my fingers so that I didn't feel anything. My poor husband had to do everything for me. It sucked royally and I did not know if it would ever go away. Finally, they got me the right medicine and it did.

So I know what you are going through and it is miserable. I hope the shingles clear up soon.

Sandi, ask your neurologist about neurotnin/nerotonin/? Whatever. It was a miracle worker for me. Maybe it will help you.

RHofm50129 wrote: I hear you guys, and I am sure you are right. 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. You are talking years into it, not weeks into it.

Not all of us. I got accused by someone here (who isn't here any more) of enjoying having ITP because I wasn't miserable about it. That was in the first couple of weeks. I wasn't enjoying it but thought like Melinda.. if I worried about counts all the time I might be worrying unnecessarily and missing out on life. On the other hand if the worst were to happen what was the point of worrying.

By the way I did get remission from my first round of steroids. Remission lasted six weeks then I woke up one morning with petechiae all over my feet, went for a count and it was 1. But I had a wonderful six weeks.

I find it easy to be upbeat and optimistic but some don't. You fall into that category and have to work harder at it. Talk to yourself about it and make yourself see that things are just fine, and enjoy the moment.

I think my husband worried more about my ITP than I ever did/have. I only wondered once how I got it and that was after my hysterectomy. Both my fm dr. and hema told me there was no relation, so I never wondered again. My mother kept asking where it came from but I didn't. I was very nonchalant about it. The only major thing I did was stop working. Other than that I did pretty much what I did before ITP. Oh, and if my counts were too low, I didn't drive. That was my choice.

I have to swing with Ann and Melinda on this.
I'm trying to remember when I was first diagnosed. It's been 10 years. Ah yes, after I was diagnosed, I ignored my doctor and the hematologist she sent me to...and ignored ITP for about a year. Then I had a blood draw due to being covered in bruises, got a late night call, let them talk me into the ER with a 4k count. Spent a couple days in The James then...with people in the rooms around me who were really really sick. I felt like I was stealing their bed space....vowed never to do that again. Got out on a Friday, worked my side-business on Saturday, went to band practice on Sunday, back to work on Monday, and back in a biker bar with the band on the following Friday.
Sure things are different, and sure symptoms come and go, but life continues.

To me, the worst thing about ITP is having to fight with insurance companies.
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