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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jan 6, 2015, 08:01 PM
vickij vickij is offline
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Anyone tired & ache after prednisone

I had mud transplant 6/25/13 and have been on several meds including methylprednisolone. I tapered off the methylprednisolone last month & have felt tired & ache all over. Is this normal ?
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #2  
Old Wed Jan 7, 2015, 12:29 AM
DanL DanL is offline
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I was weaned off of prednisone sometime ago and was having similar symptoms - fatigue, weakness, some muscle pain, and we tested for adrenal insufficiency. I am now taking hydrocortisone and may begin weaning off of that to see if my adrenal glands have begun producing cortisol again. It is an easy test, but takes over an hour as they have to measure cortisol levels three different times over an hour time period to see how your body is processing it.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Wed Jan 7, 2015, 10:48 AM
vickij vickij is offline
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Thanks Dan

I will ask my Dr. about this, I will see him next week. I just hope it is something they can fix. What is hydrocortisone ? I take hydrocodone for pain, but it doesn't help that much.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #4  
Old Wed Jan 7, 2015, 11:11 AM
DanL DanL is offline
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Hydrocortisone is a corticosteroid. It is milder than prednisone and has little to no immune suppressive qualities, but it is used to replicate the production of cortisol in the adrenal glands.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #5  
Old Wed Jan 7, 2015, 11:37 AM
Lori Patrick Lori Patrick is offline
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Any time I change my prednisone or methylprednisone (spelling?) I have increased fatigue and achy muscles and joints. My dr says it is normal.
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #6  
Old Mon Jan 12, 2015, 01:06 PM
vickij vickij is offline
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Dr said aches are normal.

I saw my hematologist last week, he said aches are normal after prednisone. I guess the good news was that all my blood counts are still high ( hmg 14 ) so now they are going to start taking blood to get rid of excess iron. Along with the aches I also suffer from depression, it is always worse in the winter. I have a call in to transplant Dr to see if he will increase my anti depressant.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #7  
Old Mon Jan 12, 2015, 02:39 PM
Susan Susan is offline
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That is good news! I personally didn't get tired or have aches tapering. But I tapered over 6 months, lol. I was on Prednisone for several years though. Maybe take just 5 mg for a bit? Then drop by 1 mg each week. That's what I did with no problem.
With the SAD part of depression if you look outdoors before 11 am for 30 minutes or better go outdoors the sun is proven to be a mood lifter. I have SAD and it helps me a lot. I actually feel awake and alive with more energy once I'm out.
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  #8  
Old Tue Jan 13, 2015, 10:40 AM
vickij vickij is offline
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Thanks Suz

I will ask Dr about getting back on prednisone, I think he tapered me off to fast. I will try going out or maybe just looking out in the mornings. I always have SAD in the winter and I never thought about it being caused by lack of sunshine from staying inside all the time.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #9  
Old Wed Jan 14, 2015, 12:53 AM
Cheryl C Cheryl C is offline
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Would supplementing with Vitamin D3 help with SAD?
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #10  
Old Wed Jan 14, 2015, 01:01 PM
vickij vickij is offline
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Vitamin D3

Cheryl, I have never taken vitamin D3. Does it help with depression ?
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #11  
Old Wed Jan 14, 2015, 07:35 PM
Cheryl C Cheryl C is offline
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I'm not sure whether D3 can help with depression in general. However what triggered my question was the fact that you have SAD in winter when there is the least sunshine. I know that bright light is very important for SAD, but wonder whether it would also be worth you having a blood test in winter to see if your Vit D levels are OK. I don't have depression but my body doesn't absorb Vitamin D very well so I have to supplement. I don't sleep well when I'm lacking in Vit D. Apparently D3 is the best form to take.

Here are a couple of websites I found which may be of interest:

https://www.vitamindcouncil.org/heal...ns/depression/

http://www.drweil.com/drw/u/ART03384...order-SAD.html

All the best!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #12  
Old Sun Feb 8, 2015, 04:54 PM
vickij vickij is offline
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Cheryl C

I had blood test for vitamin D a few days ago, waiting for results. Thanks for links to articles.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #13  
Old Thu Feb 12, 2015, 04:12 PM
vickij vickij is offline
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Cheryl C

Dr called with results of vitamin D test. She said my vitamin D was low. It was 13 , should be 30. I am getting a prescription for vit. D. She said I would take it once a week for 8 weeks and then have level checked again. She said it should make me feel better. I hope it works. I don't know why my transplant Dr. never checked for this.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #14  
Old Thu Feb 12, 2015, 04:36 PM
bailie bailie is offline
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I am wondering why you have to get a prescription for Vitamin D?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #15  
Old Thu Feb 12, 2015, 07:42 PM
vickij vickij is offline
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bailie

This is prescription strength vitamin D that I take once a week. Dr said if this helped I could start taking regular vitamin D tablets.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #16  
Old Thu Feb 12, 2015, 08:26 PM
Cheryl C Cheryl C is offline
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I am so pleased that you have found something that might help with your SAD VickiJ. I'll be watching to hear your comments as time goes on.

There is also some evidence that Vit D can help with thrombocytopenia.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #17  
Old Fri Feb 13, 2015, 10:22 AM
vickij vickij is offline
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Cheryl C

What is thrombocytopenia ? That is why I like this site, I learn more on here than I do from my transplant Dr. All he tells me about is my hmg. & white count. I get a lot more info from my hematologist but there are some things he doesn't know. He and my family Dr have ask me why I am still taking mag 64 & penicillin. I will ask transplant Dr next month.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #18  
Old Fri Feb 13, 2015, 05:42 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by vickij View Post
What is thrombocytopenia?
Thrombocytopenia is the condition of having lower-than-normal platelets. Thrombocyte is the technical name for a platelet.

Here's why:

The word "thrombocyte" is derived from "thrombos" (blood clot) and cyto (cell), so you add penia (deficiency) to get the word "thrombocytopenia'.

That can help you make sense of other terms you might hear, like "cytopenia" (having an insufficient number of ANY type of blood cell), "leukocytopenia" (not enough white cells, called leukocytes), and "granulocytopenia" (not enough granulocyte cells).

Some of the medical words omit the "cyto", so "leukopenia" and "leukocytopenia" mean the same thing, and "neutropenia" means not enough neutrophils (a very important type of white cell).

If you're low on red cells and white cells and platelets, it's called "pancytopenia", because "pan" means "all".

To spoil the pattern, being low on red cells is called "anemia", not "erythrocytopenia", even though the cells you're missing are called erythrocytes ("erythro" means "red"). Then again, it's easier to remember the word "anemia", isn't it?

Now that you've mastered all of these words, you'll understand the joke if we say that some doctors suffer from "explain-o-penia"!
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  #19  
Old Sat Feb 14, 2015, 01:21 PM
vickij vickij is offline
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Thanks Neil

That really helps & my Dr does suffer from explain-o-penia.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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