Kendra,

What you describe with the hair colour not sticking to the hairs is something I've read about on other boards discussing prednisone side-effects. I think that the hair just gets so dry from it, and thin, that it doesn't absorb colour well.

I definately am going to have to cut my hair. It's breaking and falling out in hugh knots like crazy!

Nicky

Nicky that is crazy!!! I thought for sure it was my imagination but I guess not. Just another good reason to hate the pred!

Oh I can't imagine how stressful it must be to watch your hair fall out in chunks! Maybe once you are down to alternate day only pred this will get better.
Kendra

Nicky, I have never taken Pred, so I can't speak to that. But, I have gone through the hair problem you are describing and I was devastated. It was a long time ago, but I had very long healty hair and in no time at all it became so dry it felt like hay and was falling out like crazy. I had to cut it very short and it was so thin from all the fall out, but seemed to stop as fast has it started. It did grow back in, but not quite as full as it was. The only thing my doctor could contribute it to was a sudden rise in my TSH levels. I'm sorry this is happening to you, but it did help getting it cut short so I didn't have to go through that horrible feeling everytime I saw the handfuls of long hair I was losing every day. I really feel for you, but try to take some comfort in knowing it will grow back...easier said then done, I know. Take care and keep us posted.

Big Hugs,
Pat

Thanks, Pat!

I was thinking that I should maybe get my TSH levels checked again.

When your hair was falling out like that, did your scalp really hurt too? I have had shedding episodes before over the years, but never to this degree. Everytime I've had them, my scalp really, really hurts. Like even moving a few hairs kills. It's like there are needles in my scalp. Last time this happened, I had to cut my hair really, really short too at that time, and it seemed to help a bit. But again, it has never been this bad. My brush practically needs its own hairdresser...lol

I think that you may be right about the TSH thing. Mine was a bit more than 2before starting the prednisone, then afterwards (when I started it), it got down to 0.75 (I read that steroids suppress our pituitary glands), and I have antibodies to my thyroid. I was thinking that maybe as we lower the prednisone dosage, our TSH starts to go up again, and maybe this makes the hair fall out.

I'm going to let my doctor know about this.

Thanks for your reply, Pat!

Nicky

Nicky, I don't remember if my scalp hurt that first time, but over the years I too have had that shedding many times and YES my scalp not only hurt, but just lightly pushing on my hair felt like needles...what do you think causes that?! I know as the hair starts to grow in you can feel the prickly stubble when you run you fingers lightly over the scalp, but this is different like you said and it hurts. I never mentioned that to my doctor or anyone for that matter untill now. Guess I thought I was the only one! So glad you mentioned it, thanks.

Hugs,
Pat

http://www.nlm.nih.gov/medlineplus/e...cle/000357.htm

http://www.globalrph.com/corticocalc.htm shows steroids half-lives, converter

Know that 5mg of pred= 20mg hydrocortisone, and that that is the *magic* number where the adrenals are completely suppressed - so getting around that number is where things get the hardest.

You can alternate the doses a bit -going down a few days and then up one, then down a few, stay down and see how you do, then if you are stable, slowly work your way down as an alternate to just going steadily down. This sometimes helps with the pain. This is something not to hurry. Weaning is also painful as the body is used to the anti-inflammatory effects of the steroids, so any ache or pain suppressed by it will come to life, sometimes with a vengeance. There are medical papers that even say it is like heroin withdrawal so don't feel bad if you are not feeling well.

I had Cushing's - I had a "wean" from my own steroids, and have to wean all the time when I get sick, after surgeries, etc. My adrenals are gone now - so now I live on corticosteroids - joy. Not. But after pituitary surgery - weaning hurt so bad, I could not even walk up a flight of stairs. That was from 20mg = 5mg prednisone. It was after the adrenals left, they discovered the MG - I was very nicely self-treating myself with my own tumor. How nice of me.

I have refused to take steroids for the MG since the Cushing's destroyed my body.

Thanks for the links. I am currently at 5mg (down from 40mg). Have been at this dose for 5 weeks per neuro instructions. At the end of 5 weeks I was to call the office which I did this morning. Hoping he will take it to 5mg every other day and then off completely. So far I haven't had any withdrawal symptoms, but how will I know if my adrenals kick back in?

Pat,

I honestly don't know, but I have some theories....

For me, I have thyroid and dsDNA antibodies. I know that both can cause hairloss, and since I've had this aching/prickly/painful scalp thing with the shedding a few times over the years prior to taking any prednisone, and I've noticed that my joints hurt much more during these times- and in pictures, I've noticed that I'm pretty puffy-looking (also remember waking in the morning during these periods with big lines on my face because my face was retaining water...lol...Kinda looked like that X-men guy, can't remember the name...lol...), I've considered that it might be one of the autoimmune things going on.

Since it's happened with you too, I think that it may be the thyroid....I remember distinctly going to the doctor during one of these periods (I remember because it was around the time my sister got married), and my tsh was 4.something. I didn't know what was normal at that time, but I remembered the number. I had it retested again some time later (maybe 4-months) and it was 2.something. Now I see that 4 is close to hypo.. I had gained weight during that time (not much, but enough that I noticed and it didn't seem to correlate with my eating habits), had dry skin, had the scalp thing with the shedding, was waking up with the deep lines in my face (my x-men 'superhero look' lol).

On the other hand, it seems to be very common with tapering off prednisone. Check out this link. I found a forum discussing tapering off prednisone and hairloss, and everyone who commented said that they experienced the same thing- extreme dryness, massive shedding. So I think that it may be a combo. of the thyroid thing and prednisone-taper. I didn't read anyone mention that their scalps hurt on the taper-thread, so that might just be from the thyroid thing.

I could deal with my thyroid causing this because I know that the hair comes back. If it's the Lupus antibody, that'll suck. I've heard that the hair doesn't come back, but I'm not exactly sure.

Today, my bf's sister massaged my scalp and put this coconut conconction on it to see if it'd help. She was shocked by how much hair came out. It was a whole hand-full of hay-like hair. It was very depressing for me. I remember Kendra saying that it's bad enough to feel like crap, but to look like crap tops it off. I can deal with my looks going down the toilet- the acne, the paleness, the hump, the goti, the big old face, the cortisol planting ringworm, and other unknown-creature seedlings even- as long as it's temporary.

Well, I guess if it's permanent, I'll have to deal with that too, but I hope that it's not.

-Prednisone tapering and hairloss-

http://www.inspire.com/groups/nephsp...page=2#replies

EDIT: To add this little tidbit I just came across....The woman had scalp pain with shedding, and her TSH was normal. Her doctor figured that it was nothing since her hair is thick and she appeared healthy. Then the doctor ordered a thyroid antibody panel, and he came back positive and she was started on thyroid meds.

http://www.healthboards.com/boards/s...d.php?t=468822



Nicky

Thanks for all the info & links Nicky. It does seem to be caused from the thyroid. When I was first diagnosed in the 70's my TSH was an 8.? and I had no idea what the numbers meant back then. At that time you were lucky if a doctor would treat you at all and I think 5 was the high end considered to be hypo. I just recently checked out some hypthrodism sites and now I see since March 03, I believe, they have changed those old numbers to 3 as the high end. I tried to post a link, but messed it up. One site states that most people feel well between 1 & 2, so idealy that's where you should be. I am taking 125mcg of Synthroid and the past few months have been having all the typical symptoms of it being low. My doctor could see my dry skin, hair and even the outer corners of my eyebrows are gone. He ran a panel and told me I'm fine at 3.8. Now he wants me to have a thyroid scan to rule out any growths or abnormalities. While that's a good idea, it seems to me just a small increase in the synthroid might solve the problems. Some people feel well with higher levels while others don't. He's also repeating the panel as well as the scan. I see him again in 2.5 months and I will talk with him about all of this. Check out the websites and the new standards. In the meantime, I hope you get some answers and your fallout comes to an end soon! Take care.

Hugs,
Pat

Hmmm the thyroid issue is something I remember hearing in the past now that you all mention it. I have hypothroyoidism. I was talking to my hairdresser today about us discussing the hair falling out and being so dry. She has MS and has been off and on high doses of pred for a while now. She said her hair is falling out too and she has been off the pred for over 2 months now. She is also on some new meds and said she needed to check and see if hair loss is one of the symptoms. She also said she has heard that it can cause severe dryness in the hair although she didn't experience that.

Pat I hope your scans all come back fine. Geez seems like if it isn't one thing it's another huh?