Hair loss; Swelling and Pred taper

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!

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...

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.

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.

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.

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!

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!