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AA Aplastic anemia

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  #1  
Old Fri Jul 3, 2009, 08:27 AM
amaharaj amaharaj is offline
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Unhappy AA and Hair Loss

Hi all,

I'm 26 years old and was diagnosed with AA in March of this year. I had my 1st round of ATG (rabbit) in April, and I'm patiently waiting for a response while taking cyclosporine and getting my BMT testing done. I've recently started experiencing severe hair loss. I'm not sure if it's from all the drugs, or even the ATG itself. I would really like to know if anyone else has had experience with this, and whether there's anything I might do about it. I have a wig but I'm hoping it wont come to that

Thanks,
Aneela
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  #2  
Old Fri Jul 3, 2009, 09:24 AM
sandra sandra is offline
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Hi Aneela,

This is very WEIRD. You are on cyclosporine, you should have hair growth, not loss. Cyclosporine is actually used to treat some serious forms of alopecia (eg scarring alopecia).

http://www.hairdiseases.com/diseases...-control.shtml

Did you experience any type of hair growth at all? Such as arms, legs, eyebrows?

I wonder if it has something to do with androgen levels. What was your diagnosis (moderate, severe...)? Do you remember counts at diagnosis? (WBC, HGB, PLT, ANC and MCV)?

Sandra
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  #3  
Old Fri Jul 3, 2009, 03:00 PM
Neil Cuadra Neil Cuadra is offline
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Aneela,

Sandra is right; your experience is indeed unusual. Typical ATG side effects include fever and chills, sometimes hives and serum sickness (rash, fever, joint and muscle pain), but not hair loss.

The cells in our hair roots grow rapidly, and chemotherapy drugs target rapidly growing cells, which is what causes hair loss for chemo patients, but ATG and cyclosporine are immunosuppressive drugs, not chemo.

Even though hair loss isn't life threatening, it's one of the biggest concerns for patients who face it was a side effect, and our hair is important for our overall well-being (not to mention keeping us warm).

I definitely think you should talk to your doctor about it, if you haven't already. Perhaps the reason isn't the ATG and cyclosporine but some other aspect of your AA, treatment, and health, such as other medications, nutrition, stress, hormones, or any of the other possible causes of hair loss in people who don't have aplastic anemia. Whatever the cause, let's hope it's temporary.
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  #4  
Old Fri Jul 3, 2009, 10:19 PM
Neil Cuadra Neil Cuadra is offline
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I can only laugh at myself for mentioning nutrition in my post above, now that I've followed the Home Page link on your user profile page, which goes to your blog about cooking. You certainly know more than the rest of us about food!
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  #5  
Old Sat Jul 4, 2009, 10:56 AM
amaharaj amaharaj is offline
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Thank you so much for your replies. I was surprised when it started initially because I do have increased hair grown on my arms and strangely enough... my earlobes. Perhaps it is due to stress. My counts were pretty bad when I was diagnosed: hemoglobin at 3, platelets at 7000. Maybe it's just due to stress. My nutrition seems fine as well. I asked my doctor about it and she seemed to indicate that there was nothing I could do. I'll keep investigating.

Thank for taking the time to reply!
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  #6  
Old Sat Jul 4, 2009, 11:13 AM
amaharaj amaharaj is offline
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Oh My Gosh!

Hey all!

I think I may have figured it out. I was reading the link posted about about the causes of hair loss and it mentioned something about birth control pills. I have been on OCPs for some time now and was always told that it would pose no problem . HOWEVER I had been using Tri-cyclen lo (for months) and then recently switched to Yasmin (another brand.) I never made the connection until now that my hair loss began at around the same time as my switch to Yasmin. I did a quick google search and found other women who have experienced hair loss from Yasmin. Now, there's always a chance that I'm wrong, but I'm NEVER using Yasmin again, and hopefully I'll see some improvement. Maybe the cyclosporine will speed up some hair growth on top

Thanks SO MUCH!!!!
Aneela

BTW, glad you liked my blog!
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  #7  
Old Sat Jul 4, 2009, 04:05 PM
Ruth Cuadra Ruth Cuadra is offline
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Wow, Aneela! What an amazing discovery! Thanks so much for posting what you learned so we'll have this information available to help others who come along asking about the same problem. I hope that switching brands helps your hair grow back quickly. It's funny that you mentioned earlobes--I had the bushiest eyebrows and longest eyelashes you've ever seen while on Cyclosporine. Luckily, all of that went away once I was off it.

Regards,
Ruth
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  #8  
Old Sun Jul 5, 2009, 10:05 PM
Laura Laura is offline
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I just had to throw in there that I also ended up with really hairy earlobes too.

I had some very mild hair loss from my scalp and it was attributed to being so anemic for so long.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #9  
Old Wed Jul 8, 2009, 09:04 AM
amaharaj amaharaj is offline
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Hey Laura,

I feel better knowing that I'm not the only one with furry earlobes. I recently used Nair to remove the hair because I was wearing earrings to a reception, and I figured that if I was going to draw attention to my ears, they should be fuzz-free. When I wiped the cream off I just couldn't believe how much hair there was. On the other hand, as an AA patient I would happily endorse Nair for removal of hair on arms, legs, and ears. If you can get over the slightly odd smell, it is a great product I only wish I could move some of that hair to my head which is still shedding

Cheers everyone!
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  #10  
Old Wed Jul 8, 2009, 06:26 PM
Laura Laura is offline
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What is your hemaglobin? Maybe try a transfusion or keeping your HGB a little higher for a little bit to see if the shedding stops?

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #11  
Old Wed Jul 8, 2009, 06:47 PM
JEZ JEZ is offline
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I had initial hair loss after ATG/cyclosporine until my counts went up.... then I got pretty furry! My hair got curly too! And thick.... got hair on my face and had to shave... OMG....
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #12  
Old Sat Oct 3, 2009, 11:34 PM
Vera W Vera W is offline
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Hair on face

I have hair all over my face. Luckily it is white. It's on my nose, chin and in my lips. I don't want to use chemicals because of the gvh rash but my question is does it come back worse after shaving it?
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #13  
Old Sun Oct 4, 2009, 05:33 AM
squirrellypoo squirrellypoo is offline
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Vera I've had the same thing appear post transplant and I've been told is from the cyclosporin and will go away on it's own. They stopped my cyclosporin entirely about ten days ago and I've noticed all my gorilla body hair (arms, legs, face) has slowed down to normal levels but the excess has not fallen out yet like I'm told it will. I think shaving it is a bad idea as you'll just get stubble which is worse than soft tufts, even as bad as that is!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #14  
Old Sun Oct 4, 2009, 01:10 PM
Hopeful Hopeful is offline
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Hi Vera!

When I get peach fuzz white hair on my face from the Cyclosporine, I shave it off. It doesn't grow back for months. When it's does come back, it's still peach fuzz white with no stubble. I've shaved my arms as well, and it grows back light. Go for it! You'll feel so much better!
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52 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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  #15  
Old Thu Oct 8, 2009, 09:01 PM
JEZ JEZ is offline
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I went off Csa a while ago and my fuzzy wuzzy body is back to normal. Unfortunately my nice thick hair from it is going back to fine and my eye brows are back to fine and not too pretty as well.
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #16  
Old Tue Apr 17, 2012, 08:42 PM
glitterandlace glitterandlace is offline
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I also lost 1/3 of my hair. I was also on steroids with the cyclosporin. The hair I grew on my body and face NEVER fell out. My hair has also never been the same. But I was losing hair like crazy while on these drugs.... On my head.... Hair on my face and body grew thick and dark.
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  #17  
Old Tue Apr 17, 2012, 09:13 PM
DarDar789 DarDar789 is offline
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Hair hair hair

I'm so glad it's not just me! I'm still on cyclosporin after having the ATG done in February. I've had to use Nair because I was developing a serious moustache, and am now noticing dark hair on my earlobes and arms. My boyfriend is now affectionately calling me the "gorilla". I think i'll just wait out the earlobes and arm hair, that seems way too much to Nair off. It's good to hear that the hair growth goes away as soon as you stop cyclosporin...I can't wait!
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  #18  
Old Wed Apr 18, 2012, 06:39 AM
edithr edithr is offline
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My son was 15 when he was on Csa, and because of the hair growth was one of the first in his group of friends to HAVE to shave. He was pretty happy about that.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #19  
Old Fri Apr 20, 2012, 12:02 AM
dfantle dfantle is offline
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Oh joy, looks like I'll have some more fun times ahead. I've just been on Cyclosporine for 3 weeks. My husband & I had some good laughs about my impending gorilla look.


Best,
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Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #20  
Old Fri Apr 20, 2012, 07:34 PM
MelanieW MelanieW is offline
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Alternative

My doctor put me on tacrolimus instead of cyclosporine for this very reason. It is apparently a newer immunosuppresant that does not have the hair growth side effect! It's only been about 6 or 7 weeks but so far so good!

I don't know if you can switch from csa to tacro but for anyone just going into ATG (and you're female!) maybe you could ask.
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Melanie, age 52. Dx AA 11/11, ATG 3/12, partial response, still on tacrolimus
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