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TOPIC: Fatique and ITP

Fatique and ITP 1 year 7 months ago #60845

  • Moe1327
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I am due for another round of IVIG on Thursday and Friday, but yesterday I have been feeling very tired, body is sore, and feeling dizzy. Not sure if this has anything to do with ITP. I've been newly diagnosed and treated for ITP about 3 months ago. Can anyone tell me if there are symptoms of ITP besides bleeding and bruising.

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Fatique and ITP 1 year 7 months ago #60847

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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I have noticed when my counts are low that my legs ache and I do get tired easier. What other medications are you on? Steroids can have some pretty bad side effects for some people. I have had IVIG many times and I am usually tired the day of the infusion but normal the following day.
ITP symptoms that I experience are: bruising, bleeding, blood blisters in the mouth, and red spots on my legs.

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Fatique and ITP 1 year 7 months ago #60850

  • Moe1327
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I'm not on anything else but the IVIG treatments. I'm due to IVIG on Thursday and my platelet level has dropped to 105, I know that number is pretty good, but I haven't felt this tired since being diagnosed.

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Fatique and ITP 1 year 7 months ago #60854

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Maybe you're getting sick or something? I only felt tired during steroid use or when counts were really low.

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Fatique and ITP 1 year 7 months ago #60855

  • mrsb04
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  • Diagnosed in 2014. I'm also a renal specialist nurse
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I'm often tired. I get waves of fatigue more frequently when my count is below 50. If it goes below 30 I am constantly tired.

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Fatique and ITP 1 year 7 months ago #60935

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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I've read articles where the day fatigue is linked to itp but who knows sometimes were just tired for other reasons. I know for me if I'm above 90 I feel horrible and drained my dr thinks I'm crazy but I've had itp for 14 years and I know how I feel lol when my counts are low (5 or under) I feel the same as if I was at 20-60 my favorite numbers

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Fatique and ITP 1 year 7 months ago #61021

  • Fitjoanne17.
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  • I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets..
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Hi , im new to this , im currently dropping my steriods 10mg every 2weeks .. I started with 90mg .. now today I started 40mg , im quiet tired and very moody .. :( are u still on them and how do u feel . Thanks joanne

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Fatique and ITP 1 year 7 months ago #61024

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Steroid tapering can cause fatigue and moodiness. It may get worse until you are off of the drug for a few months.

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Fatique and ITP 1 year 7 months ago #61025

  • Fitjoanne17.
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  • I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets..
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Im not really sleeping at night either , I think crazy stuff .. I taught once I finished the steriods it would take few weeks maybe too get bk too myself . My face is so round too :(

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Fatique and ITP 1 year 7 months ago #61027

  • Moe1327
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My doctor hasn't put me on any steroids, I've only been doing the IVIG infusions. I just had IVIG last week and my platelets have now dropped to 80. They have been going down instead of up, so I guess the IVIG is not working? I did have a bone marrow biopsy that came back negative, but he did say there was some cell damage and they had suggested a Jax2 blood test. Dr. doesn't think it's necessary. Anyone have experience with any of this?

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Fatique and ITP 1 year 7 months ago #61029

  • Fitjoanne17.
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  • I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets..
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I also had ivig too, and my platelets dropped below 16 , so it doesint work for along time , its really a quick fix if your really really low , I didn even get 3weeks out of it , so thats y im on steroids now . So this is the 2nd step. Then they will monitor me without tablets every week to see how my platelets go ..

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Fatique and ITP 1 year 7 months ago #61033

  • Sandi
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If a treatment causes counts to go up, it worked. That doesn't mean counts will stay up. IVIG is pretty much a rescue treatment, meaning that it can get a person out of the danger zone, but IVIG does not cause remission. It's a band-aid. Most people only get a few weeks out of it so it is not a good long-term treatment. It's great if you need a surgery or have bleeding issues. All of the treatments work differently and are designed to do different things.

Joanne - the side effects will go away as the dose is lowered.

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Fatique and ITP 1 year 7 months ago #61035

  • Fitjoanne17.
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  • I was diagnosed with ITP during the summer , I also had ivig treatment , im now currently on prednisone steriods , and go too the hospital every second tues to have bloods , its been a tough year for me , but I have no one too talk too about platelets..
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Thank u for your reply.. I just cannot wait too be finished the steriods as they dont make me feel good .

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Fatique and ITP 1 year 7 months ago #61036

  • jayinchicago
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My experience is decent physical exercise regimen will overcome many of the side effects of these drugs.

I do strength training for30 minutes and running for 30 minutes for 5 days a week, I was on 80mg prednisone for 3 months. I had some side effects but I believe exercise helped me a lot to cope with it.

With NPlate it is back to normal for me, I have zero side effects.

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Fatique and ITP 1 year 7 months ago #61098

  • kae0603
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First, hello and nice to meet you. I am a newbie here.
Wondering what steriod you are on. I am on 2 of 4 days on dexamethasone (20mg) and I feel AMAZING!
Granted, I get my blood drawn again tomorrow so not sure if they are doing their job yet but it just feels good to feel good for a change!

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