Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Prednisone and remission length

More
12 years 7 months ago #30703 by mnhindt
Prednisone and remission length was created by mnhindt
I was diagnosed with ITP in summer 2011 and treated with a course of tapered prednisone (60 mg down to 5mg over a couple months). It worked very well and my platelet counts were good for a year until summer 2012 when my ITP came back. Again I was treated with prednisone and am now fine again. Just wondering if anyone else has had a similar experience with prednisone and what is the typical remission length. I know everyone is unique but I am still curious... I guess I should be lucky the prednisone works so well but I HATED it each time and don't exactly want to go on it once a year, even if a one year remission is pretty good... My hematologist doesn't want to take out my spleen unless I am getting it more often than once a year. The next thing we might try is Rituximab. ..but maybe my ITP will never come back? Who knows...
Thanks!
Maria
More
12 years 7 months ago #30705 by eklein
Replied by eklein on topic Prednisone and remission length
Wow you have a hematologist who does NOT want to take out your spleen - treasure that doctor! It seems like most of them want to do that first.

Maybe it won't ever come back - who knows, like you said.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: mnhindt
More
12 years 7 months ago #30707 by milly
Replied by milly on topic Prednisone and remission length
Maria,
I have treated with prednisone and I am currently up to two years with no treatment, counts are in the 120 to 130 mark and I like you am hoping that my time is done with ITP. I had prednisone for nearly 12 months with a very slow taper.

Good luck

There is no practice run in life.
The following user(s) said Thank You: mnhindt
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
12 years 7 months ago #30711 by Sandi
Replied by Sandi on topic Prednisone and remission length
There is no average remission length. It varies with each person and can even change for one person with each use.

I once had a three year remission from Prednisone. Well, I know my counts were good the first year and a half, then I stopped getting counts done. A year and a half after that, my GP talked me into a CBC and counts came back at 30, so I have no idea how long they were down. I just monitored at that point until counts got below 15, then went back on Prednisone. I refused the higher doses, so never did get another remission from Prednisone.

I'm with Erica about that doctor. Keeping the spleen with manageable ITP is a good idea!
More
12 years 7 months ago #30712 by mnhindt
Replied by mnhindt on topic Prednisone and remission length
Thanks! Was just curious if others have had similar remission lengths each time. I guess it is completely unknown if/when it will come back.... I should probably stop thinking about it!! I had a lot of really obvious/heavy bleeding symptoms both times so I will likely know when it is back.
More
12 years 7 months ago #30713 by milly
Replied by milly on topic Prednisone and remission length
I have had heavy bleeding as well and if it wasn't that I was having a blood test for a thyroid condition wouldn't bother getting a count done either, as I am sure I would know by symptoms.

Try not to stress over, I just think I will worry about it when and if I have to!

There is no practice run in life.
The following user(s) said Thank You: mnhindt
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
12 years 7 months ago #30714 by Sandi
Replied by Sandi on topic Prednisone and remission length
Yeah, it's a good idea to put it out of your mind when counts are good. That is a perfect time to enjoy life and forget about it. As you said, if counts drop you'll most likely know and can deal with it then.
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
12 years 7 months ago #30803 by dru
Replied by dru on topic Prednisone and remission length
That seems like a great remission length from pred. It usually will raise my counts while I'm on it but as soon as it tapers my counts go way down. The side effects are awful, I hate it too but at least it works and that makes it easier to stand the bad stuff. I'm on 60mg and last nite at 3am was up cleaning my hospital room, I would have cleaned everybody else's room too. No way could I stay in bed.

Dru
The following user(s) said Thank You: mnhindt
More
12 years 7 months ago #30811 by mnhindt
Replied by mnhindt on topic Prednisone and remission length
Yes..I was only able to sleep a few hours a night on prednisone. Very frustrating!
More
12 years 7 months ago #30814 by jeffrey71
Replied by jeffrey71 on topic Prednisone and remission length

dru wrote: That seems like a great remission length from pred. It usually will raise my counts while I'm on it but as soon as it tapers my counts go way down. The side effects are awful, I hate it too but at least it works and that makes it easier to stand the bad stuff. I'm on 60mg and last nite at 3am was up cleaning my hospital room, I would have cleaned everybody else's room too. No way could I stay in bed.

Dru


Dru!
Let me know when if you ever get to Indiana! I will save you some of my prednisone and we have a lot to Clean! LOL! I will even fix you the snacks! :cheer:

Jeffrey
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
12 years 7 months ago #30817 by dru
Replied by dru on topic Prednisone and remission length
Yes, I will bring my cats too!
The following user(s) said Thank You: jeffrey71
More
12 years 7 months ago #30828 by jeffrey71
Replied by jeffrey71 on topic Prednisone and remission length
Hey Dru!

How are you feeling today?

Jeffrey
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
12 years 7 months ago #30836 by dru
Replied by dru on topic Prednisone and remission length
I feel jittery from the prednisone. My house is getting really clean, made the bed 3 times, can't focus either. Going to doc tomorrow and hoping for good counts and a decrease in meds! Have a rx for ambien and will hope to get some sleep tonight.
More
12 years 6 months ago #31290 by jessmeyer
Replied by jessmeyer on topic Prednisone and remission length
I feel for you. Prednisone is the worst. I was on it for about 5 months, and it didn't work for me. Dexamethasone is what gave me the highs & lows though -- I would seemingly go for days without getting much sleep (a sleeping pill would give me 2 - 3 hours at most), and then I would crash, sleeping for 24 - 36 hours straight. Thankfully, I had a VERY understanding work place that was willing to accommodate my strange schedule.

I had to laugh about you cleaning in the middle of the night. I did that, too! It wasn't until after I heard some pounding on my ceiling that I realized it probably wasn't such a great idea to vacuum my apartment at 3:30am. :)

As for remission, I eventually got it through Rituxin infusions. For me, Rituxin was BY FAR the easiest treatment I tried -- even considering that I had a bad reaction to the infusion the first day. The side effects of steroids seemed to dominate my life for 6 months, and compared to that, Rituxin was a cake walk. On April 11th, I'll be a year into remission.

I think if anything my experiences with different treatments has taught me to understand my body a lot more and what I'm willing to put my body through. With my first go of ITP, I was willing to do and try anything my Hemo advised me (granted, I have a GREAT Hemo). If I ever have to deal with ITP again, there are certain treatments I won't try -- steroids being one of them.

Best of luck!
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
12 years 6 months ago #31295 by dru
Replied by dru on topic Prednisone and remission length
Thanks, yes rituxan works well for me too. I had a 4 1/2 yr remission from it in 2007 and 18 months from it in 2011. Prednisone is just a temporary fix for me. At least my house is clean and my room at work too. Now on a lower dose and not as hyper.....really forgetful and moody tho.
More
12 years 6 months ago - 12 years 6 months ago #31335 by dismantled
Replied by dismantled on topic Prednisone and remission length

eklein wrote: Wow you have a hematologist who does NOT want to take out your spleen - treasure that doctor! It seems like most of them want to do that first.

Maybe it won't ever come back - who knows, like you said.
Erica


My hematologist is eager for me to keep my spleen too! It was brought up once years ago, and I opted for Rituxan instead. It was a good choice for me, as I went into remission for 3.5 or so years, counts averaging 150-180 :woohoo: I am adamantly opposed to having my spleen removed. I am only 22, and have no interest in being at higher risk for infection for the rest of my life. My doctor has not brought up splenectomy since the ITP returned 6 or so months ago.

I personally experienced NO significant remission with prednisone. I was on and off of it for a while. My platelets would get into an acceptable range, and within 3-4 weeks of stopping it, I was below 20k. A year remission from prednisone sounds wonderful to me.

I positively REFUSE to EVER go back on prednisone or any other steroid. I have made this very clear to my hematologist, and luckily, she understands. Not only does it make me feel crazy, but as someone who spent 3 consecutive years in treatment for Anorexia Nervosa, I am unwilling to take the risk of the weight gain I experience on Prednisone messing up the eating disorder recovery I have fought for, am fighting for, and will continue to fight for.
More
12 years 5 months ago #31945 by russp
Replied by russp on topic Prednisone and remission length
Hey, my Hemo has recently changed his tune also. He initially was like "oh yeah, we'll take out your spleen if rituxin does not work" but now he's more like "yeah, we'll only do that if it's really, really necessary". He still is kinda of the tune of "it's no big deal" but that might be because his mother has lived without a spleen for years. In any case, might be my influence or not but it's good to see.

As for me, still just trying to fine tune with prednisone. 5mg/day is apparently not enough to keep me at good counts (last count was 25k) but maybe 10 mg will be. He seems to be wanting to try this route and not rituxin for now. I'm good with that as I'm hoping maybe 7.5 mg will be enough to keep my levels good and I can live on 7.5mg/day of prednisone without too many worries.

By the way, not new to the board but had to reregister as it dropped me. :(
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
12 years 5 months ago #31958 by Sandi
Replied by Sandi on topic Prednisone and remission length
Hi Russ. There is one possible difference between you and your doctor's mother. You have an autoimmune disorder, she may not. If the splenectomy doesn't work or you develop another autoimmune disorder, you may have to take immunosuppressants. That can be a bit more risky than the average person who lives just fine with no spleen.