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  #1  
Old Mon Apr 16, 2012, 12:42 PM
David M David M is offline
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Location: Fayetteville, TN
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Pancytopenia and Leg Cramps?

Hello all,

I have had pancytopenia for 10+ years now... my counts are not down to the point of requiring any treatment yet -- just doing the "watch and wait" thing. At last blood letting, my counts were: RBC: 2.85; WBC: 2.35; PLT: 34; HGB: 10.0; and I don't remember the rest at the moment... (I don't have the counts with me.)

I have been exercising some pretty intensly and occasionally working outside pretty intensly doing yard-work. Although my HGB is "below normal" range, I have been trying to get in decent shape and improve my endurance and strength... while I feel like it!

My question/concern is this: I have recently been having leg cramps -- could these be related to pancytopenia issues? Typically these cramps hit me sometime in the mid-to-early morning hours (i.e. 12:30 - 4:30AM)... and they seem to be occurring more frequently. I just had a blood check and my potassium level was fine (although it has reported slightly low in the past year)... and I do try to include potassium rich foods in my daily diet.

Have any of you had frequent problems with leg cramps? Is this something I should be especially concerned about, given that I have pancytopenia going on?

Thanks,
David M
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #2  
Old Mon Apr 16, 2012, 02:38 PM
Hopeful Hopeful is offline
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You may want to get your Magnesium levels checked as well. Low levels can also cause muscle cramps.
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48 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Mon Apr 16, 2012, 03:33 PM
DanL DanL is offline
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I get leg cramps every time my potassium drops below 4.0. I need to be in teh 4.3 to 4.5 range to avoid them. Magnesium seems to help as well as hopeful noted. For me, it does seem to be centered around my level of activity, or within a couple of days after heavy activity, which seems to validate the potassium depletion theory.

Everybody has a different level of normal, so if you are toward the lower end of magnesium or potassium, you might need to be a little higher.
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Treated for MDS RCMD with grade 2/3 fibrosis. MUD-Allo transplant 2/26/14. GVHD of the gut, mouth, and skin. started Vidaza 08/18/2014 to fight off possible relapse.
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  #4  
Old Mon Apr 16, 2012, 03:52 PM
Marlene Marlene is offline
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Ditto to what others have said. Once you know your electrolytes are OK, you can try this little trick. Doesn't work for everyone but has done wonders for my husband. He too was getting nightly cramps especially after walking long distances.

So don't laugh at this suggestion: Get a bar of Ivory soap, cut off about 1/3 of the bar and place it at the foot of your bed under the fitted sheet. The soap tends to crumble when cut so you may want to place it on a paper towel. This costs almost nothing and there is no risk to your health. Google Ivory soap and leg cramps. You'll be surprised at how many people employ this easy remedy.

But like I stated, make sure your cal, mag, pot and sodium are normal. An epsom salt foot bath at night can help also. Soak your feet in warm water with a about 1 - 2 cups of epsom salt. Epsom Salts are magnesium chloride and will relax the muscles.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #5  
Old Fri Apr 20, 2012, 02:53 PM
cathybee1 cathybee1 is offline
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Echoing the magnesium suggestions here. Bruce had leg cramps nightly. After taking Magnesium Glycinate, a more absorbable form of magnesium, he rarely has the problem any more. You do need to add magnesium gradually though, to avoid diarrhea problems.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #6  
Old Fri Apr 20, 2012, 10:25 PM
Greg H Greg H is offline
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Hi All!

I definitely have leg cramps, mostly after strenuous activity. My doc recommended 400 mg of magnesium twice a day, and that does seem to cut down on the frequency.

Both my magnesium and potassium, were in the normal range when last checked, though I don't recall exactly where in the normal range.

Take care!

Greg
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Greg, 57, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath trial 11/2010. Non-responder. Tiny telomeres. TERT mutation. Started Danazol at NIH 12/11. TX independent 7/12. Check out my blog at www.greghankins.com
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  #7  
Old Sat Apr 21, 2012, 09:48 PM
tom30 tom30 is offline
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I have noted that high dose of b-12 causes my potassium to drop to just below normal from right in the middle of normal range. I eat a lot of leafy green vegetables (about a pound a day) and my last potassium level was 4.5. I had noticed restless leg symptoms which i attributed to benadryl but i stopped taking the b-12 at the same time i stopped the benadryl. I'm trying to stay clear of supplements and get what I need from my diet but it not as easy for me as I thought it would be.
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Tom- 50 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA
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  #8  
Old Tue Apr 24, 2012, 01:45 PM
David M David M is offline
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Ivory Soap!

Maybe it is a coincidence of timing, and maybe not... I tried Marlene's suggestion re: Ivory Soap (see her earlier message), and so far, so good! No more leg cramps! I have no idea if there is any scientific basis for this working -- but I like the results.

I did Google this, and there is quite a bit of info on it. Any way, it is easy to try.

Thanks again!

David M
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #9  
Old Tue Apr 24, 2012, 02:16 PM
Marlene Marlene is offline
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Great!!!!!

You need to change it about every 30 days or if you find it's not working as well anymore change it out.

We've been doing this for quite a while now. At first we too thought it was a coincidence. But for some reason, this seems to help many.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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