Ditching the Prednisone...
 

So I decided I just cannot stay on Pred any longer. I can't handle the side effects anymore. I was handling my MG without, it just seemed to help a lot. Anybody have any tips for coming off, or things I should watch out for? I'm only on 20 mg, so I don't think it will be too bad...and I am going to go slowly. Probably 5 mg a week, or so.

Also, anybody had cosmetic surgery since dignosed? I'm severly depressed about my body, and after 3 kids and Pred. I don't have any other options. Any input would be nice.

Thank you,
Jessica

You have my empathy, Sugarkiss...I can't stand the prednisone anymore either...I'm tapering off of mine as well, so that I'm at alternate-day therapy
(50/0)..I'm seeing a new neurologist this coming month, and am hoping to taper down from the prednisone-day too...I can't stand how it's affected my appearance, not to mention all of the other sides which are much more serious that I'm dealing with....Found out today that I have ringworm! lol...That's not very serious, but come on-ringworm-on my face, no less?! I feel like I'm plowing my soil for strange creatures to flourish...

Anyway, unfortunately, the prednisone was helping me much more than I was aware...My sx have been flaring on the lower-prednisone days (10mgs)...My sx have always flared throughout my therapy, but they are much more severe now when they happen...*sighs*...I'm pretty sure that after I see this next neurologist, I will be on another immunosuppresant, and after revisiting the severe MG again, I think that's okay by me...Even if it means getting ringworm every now and then...

What are you considering cosmetic surgery for? The moonface and back hump are probably the worst for me....I can see that the moonface will go away as people are commenting that my face doesn't look as swollen, despite still being at a pretty high dose- but the hump's still hanging around-I really hope that I can get rid of it!

I think that you'll be okay, no need for surgery ( not sure if you were kidding around about that)...The only side that I've heard doesn't go away are severe stretch marks and osteoporosis, and sorry, the eye issues (glaucoma, cataracts) too...But the other cosmetic sides go away especially quickly the less time you've been on it, and the lower the dose you're at....I think you'll be just fine in a few months, so not to worry, girl!

:hug:
Nicky

ditching the prednisone
 

Jessica,
I sooo understand wanting to come off the Pred!!! I am doing the very same thing and have talked with Nicky about it too since she is also tapering off. It is so frustrating because when I started the Pred I felt like I had my life back but then the side effects started and I like you just can't handle them anymore.

I think being sure you taper slowly like you mentioned is the most important. I am down to 40 mg alternate days from 60. I go down 10 mg every 2 weeks. I have noticed that I am having some soreness that I am pretty sure is related to coming off the Pred. so you might watch for that.

As for cosmetic surgery I haven't had any. I can tell you that right before my MG diagnosis I was considering Botox and Thank God I didn't do it because now I know how risky that could have been. I have a friend who has MS which is very similar to MG and she had a tummy tuck and breast implants since her DX and recovered fine outside of it taking longer for her to heal. I was very concerned about her doing this since there are serious risks involved in cosmetic surgery even in perfectly health people. Just make sure you talk with all of your Drs and make sure it is safe for you to undergo the procedure. I think breathing issues would be the biggest concern and most likely your weaknes will get worse from the stress it will put your body under. Sorry to be a downer but please be careful. You have little children who need their mommy and it isn't worth taking a life threatening risk for cosmetic surgery unless you can be certain it won't cause more problems.:hug:
Kendra

I am not taking pred any longer. I went off it 17 years ago and to be honest it took me a year to wean off it. I was take 60 mg and weaned off very slowly and under a Dr's care, make sure you do this under Dr's care!

As for plastic surgery, I have not had any done but I have had back and shoulder surgery a few years back and it had no effect on my MG {but I was in remission at that time} There are always risks with surgery so just make sure it is something you really want before doing it.

When you come off the pred I am sure you will start feeling better about yourself and the surgery may no longer be needed or wanted.

Keep us updated on how you are doing :)

Hey,

Are either of you girls losing hair like crazy, or did you lose hair Joanmarie (when you were on steroids)? My hair is falling out so much, that even my family is shocked...Today I tried to run my fingers through my hair, and a huge clump came out in front of my mom and bf...My hair's really dry, so I'm hoping that's causing it and not premature balding or something...It seems to be coming out everywhere, but especially around the top...There aren't any bald spots yet, but this is all making me want to cut my hair really short (boy short)- which is not a good look for me especially with the addition of moonface....

Not ether of the gals who responded, but...............I have had issues with hair loss to the point of bald spots literally. So I have gone to wigs on an off. Currently back in one since the hair started falling out in clumps again. Not sure if is the pred or something else. Don't care either, anymore. LOL
Just be careful on the pred wean. Listen closely to the old body and what it is sayng as you wean. My body is addicted to the pred. can't get to below 50 without crashing and burning. Vanity is horrid here. I refuse to even look in a mirror the transformation or should I say morphing iis sickening. I would love to see my OWN face and body again one day. sighdeb

Thanks, Justdeb...Yeah, I've noticed that the very dry hair and falling-out-episodes started when I first weaned down from 80mgs...I think that it may be from weaning off the prednisone, as opposed to the prednisone itself...Maybe I am weaning too quickly...On my 'no-prednisone-day,' I was supposed to wean by 10mgs every month, but have been doing it every two weeks (to my own detriment, I guess)...March 1st, I wont be weaning that quickly anymore- I think that it is just too stressful for the old body....

I was watching Dr. Oz yesterday, and he was saying that when there's hairloss all over the head, it's usually from trauma that happened many months prior... I was thinking that maybe this is related too because I was really anemic some months back, and also from the surgery maybe...

Who knows...You know those little conditioners you get with hairdye? My hair's so dry, that I used a whole tube of that after I took a shower, didn't wash it out, and it's still dry! lol...Feels like I have cotton candy growing outta my head...

Maybe I will have to go ahead and cut it really short...but it ain't gonna be pretty....I guess I don't call 'em my 'ugly' pills for nothin'!

When you say that you 'crash,' you mean that your MG flares, right? Or do you mean that you get lots of withdrawal sx? The joint pain in my hands is returning, but it's not too bad at the moment, I can manage it...I also see it as a sign that my wounds will start healing again, and maybe my sternum will heal more properly- it moves around all the time...*sighs*

Hi Jessica,
Be careful with the tapering period, I had a very bad experience end of August when I went down from 5 mg/d to 4... When tapering, 10 or 5mg/d depending on the prior level, I usually had several bad days then my body seemed to adjust itself to the new dosage but this time it lasted several weeks and finally, I was sent back to a full relapse...which, now after 5 months I'm still trying to cope with, although I had to go back up to 60 mg/d!
My personal conclusions: never take off more than 10 % at a time and for the first four days, use (100%)-95%-100-95-100-95, then 90 for at least 3 weeks
Maurice.

ditching the prednisone
 

Lizzie,
I so appreciate you sharing your struggle with the pred. I am determined to get off this poison but after reading your post have decided to slow it down a bit. I am terrified of going into a crisis and coming off of it too soon just isn't worth the risk.

Nicky,
I have just recently started noticing the hair loss. I think you are right that it is connected to lowering the pred. Mine seems to be worse when I'm washing my hair. I am also noticing that it seems drier which is something I have never had before. I like you condition all the time. Does anyone else on here color their hair and if so have you noticed that your color seems to either grow out or fade at the roots quicker than before? I have colored once a mont hfor years but am noticing I really need to do it every 3 weeks to keep the roots from showing.

I had to laugh about the moonface everyone describes. I have noticed the last couple of weeks when I look in the mirror I look like I have chipmunk cheeks. Of course the weight gain is something I am really struggling with! I have gained 10 pounds and it seems like my jeans get tighter everyday. I bought a treadmill and have ordered a yoga DVD. My Dr told me it is hard to lose the weight while still on pred but to try and maintain where I'm at. I have gotten lazy about exercising and hope that will help.
Kendra

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

ditching the prednisone
 

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. :hug:
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

ditching the prednisone
 

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?

Thanks Kendra, I'm sure it will be fine. At least I don't have to go on the treadmill this time. I couldn't take any meds before the test so I didn't last very long! I'll keep you posted. Take care.;)

Hugs,
Pat

You will know because you can function, and you will not be in pain, not nauseated, etc. I sometimes run a fever, do not make sense (this is how my husband knows I need more steroid!), my blood pressure drops and I feel like poo. I was in the hospital and they refused to give me my life-giving steroids for hours and watched while I almost had a heart attack and all my electrolytes tanked and I was close to death. This is not something to play with - you need to be careful - also stay hydrated.

But to just to go 5mg every other day and drop it is too drastic - you need to wean more slowly. 5mg is the point where the adrenals will wake. You may be able to, if you are brave, and feel ok, 2.5 and if you are not feeling well, go to every day, and then wean down to a quarter pill and shave down from that - but do it a week at a time. More slowly depending on how you feel.

This is not to be hurried.