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Fatique and ITP

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8 years 1 week ago #60845 by Moe1327
Fatique and ITP was created by Moe1327
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.
  • 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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8 years 1 week ago #60847 by D.Mann
Replied by D.Mann on topic Fatique and ITP
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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8 years 1 week ago #60850 by Moe1327
Replied by Moe1327 on topic Fatique and ITP
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.
  • 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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8 years 1 week ago #60854 by Sandi
Replied by Sandi on topic Fatique and ITP
Maybe you're getting sick or something? I only felt tired during steroid use or when counts were really low.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 1 week ago - 8 years 1 week ago #60855 by mrsb04
Replied by mrsb04 on topic Fatique and ITP
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.
  • 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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8 years 1 week ago #60935 by Kelirae24
Replied by Kelirae24 on topic Fatique and ITP
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
  • 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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7 years 11 months ago #61021 by Fitjoanne17.
Replied by Fitjoanne17. on topic Fatique and ITP
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
  • 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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7 years 11 months ago #61024 by Sandi
Replied by Sandi on topic Fatique and ITP
Steroid tapering can cause fatigue and moodiness. It may get worse until you are off of the drug for a few months.
  • 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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7 years 11 months ago #61025 by Fitjoanne17.
Replied by Fitjoanne17. on topic Fatique and ITP
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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7 years 11 months ago #61027 by Moe1327
Replied by Moe1327 on topic Fatique and ITP
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?
  • 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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7 years 11 months ago #61029 by Fitjoanne17.
Replied by Fitjoanne17. on topic Fatique and ITP
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 ..
  • 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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7 years 11 months ago #61033 by Sandi
Replied by Sandi on topic Fatique and ITP
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.
  • 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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7 years 11 months ago #61035 by Fitjoanne17.
Replied by Fitjoanne17. on topic Fatique and ITP
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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7 years 11 months ago - 7 years 11 months ago #61036 by jayinchicago
Replied by jayinchicago on topic Fatique and ITP
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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7 years 11 months ago #61098 by kae0603
Replied by kae0603 on topic Fatique and ITP
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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