Re: Hair????

April 29, 2004

Hey Pat, sorry for butting in here but I had horrible hair loss, no underarm hair, no hair on my legs and very very thining on my head, I had been on 25 of methotrexate for a year with folic acid.. and yes it was the methotrexate, I've been off of it for 6 months now and I shaved my legs for the first time in over a year last week.. and my hair on my head is looking thicker, YAY no more bald spots... here is a link for some wigs if your interested Fake Hair - Hair Extensions - Wigs A place to order synthetic/human hair of ANY colour for anyone suffering hair loss from illness/chemo or who cannot use hair dye. http://www.drlocks.net/index.html

Hugs,

-- Hair????

Is it the Methotrexate that is causing my hair to fall out? I thought it was the prednisone. The first time I was on prednisone lost a great deal of my hair but I was not on the meth. But it must be both causing it to fall out this time.

My husband says no to a wig. My hair what I have left I usually braid and put up in bun. Everybody thinks I should cut it off but they don't know how much energy it takes to curl or fix the shorter hair. They may have to look at it but they don't have to do the work.

Where did you get your wig?

Happy hair?????

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 29, 2004

One of the side affects of Methotrexate is hair falling out, sore mouth, nausea.

Prednisone is weight gain, puffy face, and Diabetes.

Sharon

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 29, 2004

Mine is a Young.

http://www.paulayoung.com

I use the human hair.

Sharon

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

HI Pat. Sorry to butt in, but back when I was having serious asthma trouble, I was on high doses of Prednisone and it made my hair fall for a short time after. But that was only one incident. I have been on MTX since Sept. of last year. I haven't had any hair loss yet. I am thankful for that. Good luck with yours. Luv, Debbie T.Pat White wrote:

Is it the Methotrexate that is causing my hair to fall out? I thought it was the prednisone. The first time I was on prednisone lost a great deal of my hair but I was not on the meth. But it must be both causing it to fall out this time.

My husband says no to a wig. My hair what I have left I usually braid and put up in bun. Everybody thinks I should cut it off but they don't know how much energy it takes to curl or fix the shorter hair. They may have to look at it but they don't have to do the work.

Where did you get your wig?

Happy hair?????

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

Sharon

It must have been just a co=incidence the first 1 1/2 years that I was on prednisone. My hair became very thinned out and frizzy, broke off easily and was just generally unmanageable. When I went off the pred. then the hair very slowly came back in and grew back to it's normal state. But now it is falling out and breaking off and a general mess. Really doesn't make much difference but just that it is such a mess.

Have a good day

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

Thanks for the info. You are not butting in. I don't know what caused it to fall out the first time. I don't have any hair from about mid calf down the leg the doctors say that is from the diabetes and neuropathy. The hair on the rest of my extremities is thinner than normal. But I do not really care about that since I normally wear slacks. But my head does really bother me.

This time I started on 40 of pred. and worked up to 20 of Methotrexate plus folic acid. I am at 30 of pred. and 20mg of Methotrexate plus folic acid. I think that it takes affect so gradually that you don't notice the difference because I missed two weeks of the Methotrexate then I really understood that it was helping me. Thank you for the link.

Hope you have a good day.

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

Thanks for the info. You are not butting in. I don't know what caused it to fall out the first time. I don't have any hair from about mid calf down the leg the doctors say that is from the diabetes and neuropathy. The hair on the rest of my extremities is thinner than normal. But I do not really care about that since I normally wear slacks. But my head does really bother me.

This time I started on 40 of pred. and worked up to 20 of Methotrexate plus folic acid. I am at 30 of pred. and 20mg of Methotrexate plus folic acid. I think that it takes affect so gradually that you don't notice the difference because I missed two weeks of the Methotrexate then I really understood that it was helping me. Thank you for the link.

Hope you have a good day.

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

Debbie

Thanks for the input. After reading the posts this am I just remembered that in December when I had my heart cath. They gave me orally a total 100mg of prednisone for three days to protect me from my latex allergy. That really sent things into a spin. I couldn't take the Glucophage for three days after the heart cath and the Lantus and humalog would not hold the diabetes. After about a week I got my blood sugar back to normal with the meds. It is always something.

It seems that the only thing consistent with this disease is that everything affects each of us a little different except this group which provides so much understanding and support. It really helps.

Have a super day.

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

Debbie

Thanks for the input. After reading the posts this am I just remembered that in December when I had my heart cath. They gave me orally a total 100mg of prednisone for three days to protect me from my latex allergy. That really sent things into a spin. I couldn't take the Glucophage for three days after the heart cath and the Lantus and humalog would not hold the diabetes. After about a week I got my blood sugar back to normal with the meds. It is always something.

It seems that the only thing consistent with this disease is that everything affects each of us a little different except this group which provides so much understanding and support. It really helps.

Have a super day.

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

You know Pat, I think the same happened to me, when I had my surgery and was on high IV doses of steoids for about 4 days, I lost a lot of hair, but when I started on the Mtx I haven't had any more hair loss. my memory is not the best, but that is what I think I remember.

Marla

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

April 30, 2004

Pat,

I think everyone is different in the way that meds affect them. I

started losing my hair as soon as I started on the Prednisone and it

has been falling out ever since and I have been off the Prednisone

for over 3 years now....but the good news is that my hair does seem

to be a little thicker these last 2 or 3 months and it does not seem

to be falling out as bad. It took me nearly 3 years to get rid of

the " moon face " (still have a little bit) and I have NOT lost a pound

and I do not eat very much at all, so should be losing a little

weight. I still have most of the swelling too and some people have

stated that as soon as they quit the Prednisone, their side effects

go away and go back to normal! NOT ME!!

:-( I still have them.......

Hope this helps.

Hugs,

Darlene

> Sharon

> It must have been just a co=incidence the first 1 1/2 years that I was on

> prednisone. My hair became very thinned out and frizzy, broke off easily

> and was just generally unmanageable. When I went off the pred. then the

> hair very slowly came back in and grew back to it's normal state. But now

> it is falling out and breaking off and a general mess. Really doesn't

> make much difference but just that it is such a mess.

> Have a good day

> Pat

> inquiring minds want to know

>

> Hi, guys. I read a lot of posts reporting the effects of

> different drugs on symptoms, but often there is nothing specific.

> Like, someone will say that MTX is helping their symptoms, but I

> don't know what those are. I'm considering trying Methotrexate or

> Remicade, but I'm not even sure what they're supposed to help. I

> think I read somewhere that Remicade wasn't much good for

> pulmonary sarc, but better for skin & neurosarc. I don't think

> I've seen anything about systemic symptoms, like fatigue & muscle

> weakness.

>

> I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't

> feel a lot worse, but no better. Seem to have " slumps " every 2-3

> weeks, with worse fatigue, then back to the usual fatigue. The

> neuropathic pain in my feet is getting worse; I don't know if I

> should ask for an increase in Neurontin for that. I'm on 600mg 3

> times a day. I don't know what the highest safe dose is and I'd

> hate to top out too soon. Does that make sense to anyone?

>

> Can some of you describe the symptoms that have responded to

> various drugs? I know everyone responds to drugs differently, but

> that would give me something to go on. Thanks for any input.

> Ramblin' Rose

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

April 30, 2004

Darlene,

Thank you for the note. I really agree that everyone reacts differently.

I was over weight before starting on the prednisone but the first time put on 60 then lost it when I quit the pred.

It is interesting to see how everyone's reactions are a little different but also how much we do have in common.

Weight will always be an issue for me. I have tried going to pulmonary rehab but for now it is not a good option for me. Maybe later his summer.

Need to pick up grandbabies from school.

Have a good weekend.

P.J.

inquiring minds want to know>>> Hi, guys. I read a lot of posts reporting the effects of> different drugs on symptoms, but often there is nothing specific.> Like, someone will say that MTX is helping their symptoms, but I> don't know what those are. I'm considering trying Methotrexate or> Remicade, but I'm not even sure what they're supposed to help. I> think I read somewhere that Remicade wasn't much good for> pulmonary sarc, but better for skin & neurosarc. I don't think> I've seen anything about systemic symptoms, like fatigue & muscle> weakness.>> I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't> feel a lot worse, but no better. Seem to have "slumps" every 2-3> weeks, with worse fatigue, then back to the usual fatigue. The> neuropathic pain in my feet is getting worse; I don't know if I> should ask for an increase in Neurontin for that. I'm on 600mg 3> times a day. I don't know what the highest safe dose is and I'd> hate to top out too soon. Does that make sense to anyone?>> Can some of you describe the symptoms that have responded to> various drugs? I know everyone responds to drugs differently, but> that would give me something to go on. Thanks for any input.> Ramblin' Rose>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

April 30, 2004

Pat,

Prednisone can cause hair loss.

MTX can cause hair loss.

Sarc can cause hair loss.

Take your pick.

If your Dr. writes a prescription for a wig the insurance may pay.

Jane

May 2, 2004

,

Hair is such a huge issue. I know that mine has become so thin from years of prednisone, immune suppressants, MTX, and now the Remicade. I have a great widows peak. LOL!

So far, and I've only had the first 2 infusions- but my hair isn't any worse than before the Remicade.

It is a hard decision to make, do we cut it really short, all the way off, and what is this, the hair on our heads is going- and I have more on my chin and sideburns than my husband. (Thank you prednisone.)

Ya know, I think your husband would support whatever you need to do take care of you. Let him know ahead of time, so he's not totally taken by surprise. I'm sure he can see what is happening, and hasn't a clue of how to talk to you about it. If he says the wrong thing-- and he will-- then he's up a creek without the paddle, or boat.

Torey and and I were talking about this same subject prior to my starting the Remicade, and they came to me and said that should I loose my hair, that they'd go shave their heads so we could be a hairless household. My reaction was "No Way! One of us being bald is enough!" Besides, I've seen both of them bald, and even tho they have great shaped heads, I like the hair!

Seriously, talk to him about your concerns-- I suspect he wants to help you however he can-- and when it grows back, if you want to treat him to the "Godiva" thing-- do so!

Hugs,

Tracie

May 2, 2004

,

Hair is such a huge issue. I know that mine has become so thin from years of prednisone, immune suppressants, MTX, and now the Remicade. I have a great widows peak. LOL!

So far, and I've only had the first 2 infusions- but my hair isn't any worse than before the Remicade.

It is a hard decision to make, do we cut it really short, all the way off, and what is this, the hair on our heads is going- and I have more on my chin and sideburns than my husband. (Thank you prednisone.)

Ya know, I think your husband would support whatever you need to do take care of you. Let him know ahead of time, so he's not totally taken by surprise. I'm sure he can see what is happening, and hasn't a clue of how to talk to you about it. If he says the wrong thing-- and he will-- then he's up a creek without the paddle, or boat.

Torey and and I were talking about this same subject prior to my starting the Remicade, and they came to me and said that should I loose my hair, that they'd go shave their heads so we could be a hairless household. My reaction was "No Way! One of us being bald is enough!" Besides, I've seen both of them bald, and even tho they have great shaped heads, I like the hair!

Seriously, talk to him about your concerns-- I suspect he wants to help you however he can-- and when it grows back, if you want to treat him to the "Godiva" thing-- do so!

Hugs,

Tracie

May 2, 2004

I got sick in late 2001. I was on decadron, then prednisone. I've been off and on prednisone ever since. I used to have very nice hair. It is now very short and I have a large spot in the top of my head where the hair won't grow more than an 1/2 inch before breaking off. When I comb my hair a lot of it ends up in the sink. I tie my hair up around the house. If I didn’t it would be all over everything. I started mx 2 weeks ago. I don’t know how my husband would react if I decided to cut it all off. I'm afraid to.

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 2, 2004

I got sick in late 2001. I was on decadron, then prednisone. I've been off and on prednisone ever since. I used to have very nice hair. It is now very short and I have a large spot in the top of my head where the hair won't grow more than an 1/2 inch before breaking off. When I comb my hair a lot of it ends up in the sink. I tie my hair up around the house. If I didn’t it would be all over everything. I started mx 2 weeks ago. I don’t know how my husband would react if I decided to cut it all off. I'm afraid to.

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 3, 2004

, I hope you are using Folic Acid with the Methotrexate.

Also a Young at www.paulayoung.com

has hair pieces just for the top of your head. The colors are very close to our own color and not all that expensive. Right now there is a sale going on.

Sharon