Hair loss; Swelling and Pred taper

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Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/27/2008 7:46 PM (GMT -6)   
Hello all!  I am certain this has been brought up before, so I apologize if I am asking everyone to repeat themselves.  But I am losing a lot of hair.  Not in clumps, but shedding a lot more than is normal for me-and it is not easing up at all.
 
This started when I began tapering off of the pred, and it seems like the lower my dose, the more hair I shed.  I am also on Asacol, and am in a trial for Humira, but am thinking it must be related to the pred taper because of the timing of it?
 
Is hair loss a common (or possible) issue for a pred taper?  I have very thick hair normally, but at the rate I am losing it, I am not going to for long!
 
Also, it seems to me that my swelling is actually getting worse lately.  I do think my face might actually be started to deflate a bit, but the rest of me just seems to be getting worse!  Even my ankles are more swollen now than they were when I was pregnant with either of my girls.  Has anyone had this kind of thing happen during a pred taper, where it gets worse before it gets better?  I am trying really hard to increase my water intake and decrease my salt, but geez! 
 
Thanks for sharing your thoughts with me!
Laura
 
33 years old, stay at home mom of 2 girls, ages 3 and 21 months
 
Diagnosed in 2007
Currently on:
Prednisone 12.5mg/day and tapering-UGH
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 7/27/2008 9:06 PM (GMT -6)   
Same thing is happening to me with hair loss....except mine started before my taper. I remember when I took asacol it was bad too. I asked the pharamacist today and he thought it was the 5ASA drugs.
ulcerative proctitis - march 05 diagnosed
current status - bad flare
colazal - 9 pills
prednisone -40mgs 30mgs, canasa -AM, hydrocortisone enema - PM
VSL#3
fish oil, flaxseed oil, bee pollen/royal jelly & garlic, calcium & vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
ACCUPUNCTURE
 


piper_chris
Regular Member


Date Joined Jun 2008
Total Posts : 73
   Posted 7/27/2008 10:59 PM (GMT -6)   
I've taken asacol for years and didn't have any noticeable hair loss with it. Recently I've been losing hair - lots in shower and hairbrush. I'm not sure if its from the prednisone (started taking high doses in April and have been slowly tapering down since) or from the 6-MP (which I have been taking for almost 2 months now).

Thank you again to everyone who participates in this forum, I appreciate it...
- diagnosed ulcerative colitis Feb 2005
- currently 15mg prednisone (tapering down from 80mg), 75 mg 6-MP/mercaptopurine/purinethol, asacol/mesalamine 4800mg (4 pills x 3 times day), 1 Canasa 1000mg nightly, VSL#3, Benefiber, multivitamin, chewable calcium, fish oil, sometimes iron pills


Zerxer
New Member


Date Joined Apr 2008
Total Posts : 10
   Posted 7/27/2008 11:23 PM (GMT -6)   
Years ago, my dad was on prednisone for several years for reasons I forget but it caused him a lot of problems and hair loss was one of them. After being on the prednisone for a couple years in a row, he started balding and got eye cataracts and a couple other problems. He wasn't on any other medication I don't think so it was definitely the prednisone that caused these side-effects. He was very very wary about letting my doctor put me on prednisone to control my UC because of this, he fought the doctor for awhile but I'm on it anyways. I just hope none of that happens to me.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/28/2008 8:28 AM (GMT -6)   
Supa, the pred has made my swelling worse, and I did have some hair loss on my head and my hair stopped growing on my legs but I also got a mustache, very weird.

If the swelling does not go away after you are off the pred have your Dr. check the amount of proteins in your urine. 5ASA's can cause Kidney Disease (Minimal Change Disease) and the symptom of MCD is swollen ankles (most noticeble during the day/eve) and also sometimes swollen face/eyelids (most noticable in the am). The urine test will tell them if you have MCD or not. Everyone on 5ASA's should be checked for this yearly anyway.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


piper_chris
Regular Member


Date Joined Jun 2008
Total Posts : 73
   Posted 7/28/2008 9:34 AM (GMT -6)   
Beth75,

Just curious is the marker for MCD protein in urine like your post says or protein in blood like your signature, or perhaps both? I get my blood checked regularly (CBC & CMP), but not urine...
- female 41
- diagnosed ulcerative colitis Feb 2005
- currently 15mg prednisone (tapering down from 80mg), 75 mg 6-MP/mercaptopurine/purinethol, asacol/mesalamine 4800mg (4 pills x 3 times day), 1 Canasa 1000mg nightly
- VSL#3, Benefiber, multivitamin, chewable calcium, fish oil, sometimes iron pills


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/28/2008 10:20 AM (GMT -6)   
piper, if you have MCD you will have high proteins in your urine and low proteins in your blood....the problem is my kidneys are not filtering the proteins into my blood and they are 'spilling' out in my urine.
Either test would be a good indicator of kidney problems. Ask your Doc for a copy of your lab report next time you go and see what tests they are doing.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 7/28/2008 10:25 AM (GMT -6)   
I have been having hair loss too for about 8 - 10 weeks now, currently down to a taper of 2.5mg pred for another two weeks then finish. Dr's don't know whether side effect off pred, azathioprine, asacol or disease (big help!!!!) but my dr matter of factly told me that "good thing was I still had hair" could of punched him straight in the face but fake laughed instead. Anyway I was really stressing about this early on but after about 3 - 4 weeks hair loss I bought new shampoo to minimise hair loss, recommended by my hairdresser who's husband has alopecia and started taking biotin which I had seen recommended on a previous post and although still losing hair there is considerably less and I'm not stressing about it too much now either.

32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


ChiCubs7
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 7/28/2008 6:19 PM (GMT -6)   
piper_chris, if they are doing a CMP (assuming you mean Comprehensive Metabolic Panel), check your creatinine (it's also in a Basic MP). That is an indicator of kidney function. I bet most GIs prescribing 5ASAs will use a BMP or CMP to check kidney function to look at creatinine rather than a urinalysis to check for protein in urine.

If you have protein in your urine for a long period of time, you will notice generalized swelling (edema). As Beth describes, you will notice it in your feet and ankles later in the day and face and eye lids after you wake up. This is because of gravity; the fluid goes wherever gravity pulls it. On a CMP, you can check your albumin (this isn't in a BMP). If this protein is leaving your blood through your kidneys, it will be low in your blood. In fact, low levels of albumin in your blood is what causes the swelling.
Ken

Seborrheic Dermatitis diagnosed Jul 08 (flaring) - Fluocinonide Topical QHS, Ketoconazole 2% Shampoo TIW
Left Sided Ulcerative Colitis diagnosed Jan 08 (flaring) - 4 x 1.2g Lialda QD, 5mg Prednisone QD, 1000mg Canasa QHS
Minimal Change Disease diagnosed Feb 06 (in remission) - 10mg Lipitor QD

1200mg Fish Oil BID, 400 IU Vitamin D + 600mg Calcium BID, 2mg Garlic Oil QD, 4 x 3g Metamucil Fiber Capsules QD, 2 x 225 billion VSL#3 Capsules QID, 10 billion Culturelle HS QD


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/28/2008 9:37 PM (GMT -6)   
Thank you all for the responses! I hate that I can't tell what is caused from this med or that med, or just the disease itself. UGH!

Hopefully the hair loss will level off and I will get back to normal when I am done with my taper. If not, I guess I'll investigate the Asacol and see if that is it.

And I am definitely going to keep an eye on my swelling, since I really seem to have it most everywhere.

It is always something, isn't it?
Laura
 
33 years old, stay at home mom of 2 girls, ages 3 and 21 months
 
Diagnosed in 2007
Currently on:
Prednisone 12.5mg/day and tapering-UGH
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 7/28/2008 11:56 PM (GMT -6)   
Supa, I've had the hair loss going on for at least a couple of months. My hairdresser reassured me last week that new little hairs are growing it, at least. She said it isn't that noticeable, but I know when you're seeing all that hair in your comb or brush it can be pretty frightening.

I'm trying to reduce my asacol dose gradually to 6/day instead of 9 on the theory that's causing it. I tapered off pred at the end of March, so it seems more logical that it's the asacol to me.

Hang in there!
Potato...  Female, 58, dx mild left sided ulcerative colitis 11/07
asacol 3 3x a day   asacol 2 3Xday
rowasa tapering to 2 x week
culturelle, citracell
Centrum, Vitamin E 400 mg
omeprazole 2x a day
oxazepam (anti anxiety) when needed
 
 
 
 
 
 


Castlefront
Regular Member


Date Joined Jan 2007
Total Posts : 26
   Posted 8/6/2008 9:02 PM (GMT -6)   

hello all.  i am having terrible hair loss over the past few weeks as well.  only on salofalk, so this is my only culprit ... i also feel like at this rate, i will be hairless in no time ... and it is making me very anxious (which i imagine doesn't help!).

i am also trying to reduce my dose from 9 to 6 pills a day, but if anyone has other suggestions (name that shampoo? recommended vitamins ...?)  i am taking suggestions!


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 8/12/2008 12:19 AM (GMT -6)   
My daughter is also losing hair---shower clogged daily! She has been off the pred for a few weeks and just switched from Asacol to Colazol. Have no idea the cause at this point, but I don't feel so alone! If anyone knows the true culprit, write in and keep us all in the loop.
thanks!
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Asacol, Prednizone 50mg, major flare, now off!, Hosp. @U of C, Comers twice this yr. Low residue diet still
began 6MP, ,horrible acne, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/12/2008 10:08 AM (GMT -6)   
Wow, I've never experienced this on asacol. I grow more hair with prednisone!! Especially on my face, fortunately it's blonde. I do get moon-face, but it goes away when I can get off the prednisone, but no other swelling (except from gaining weight from being hungry all the time).

Try eating lots of protein: when I do a low-carb, high protein diet (to lose weight) my hair and nails grow like CRAZY.
49 year old female, diagnosed in 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years; Currently 15-20 mg prednisone trying to taper off from lingering flare, slow-release iron and B-12 shots for severe anemia.
August 2008 Tested gluten intolerant and started gluten-free, soy-free, etc. diet and Replete probiotic, DGL Plus (licorice root, slippery elm), Permeability Factors, under care of naturopathic doctor.

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