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Medical Forum / Diseases and Disorders / Arthritis / February 2005

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DMARDs side effects-? for women on here

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islands@volcanomail.com - 15 Feb 2005 22:20 GMT
Is that the correct abbreviation? I have been reading about this class
of drugs and it seems pretty scary-complications with bone marrow,
immune system, possible kidney/liver failure etc. Yet people on this
group seem very happy with these drugs.

My big question is for the women on the group. Did you experience hair
loss while on them? Mild, moderate or severe? Did it grow back or not?
Lisa
Karen Palmer - 15 Feb 2005 23:08 GMT
Lisa,
If we seem "happy" with these drugs its because many of us know what life
was without them.  Yes, there can be scarey side effects but those of us who
take DMARDs have weighed the benefits of these meds verses the risks of the
meds when compared against the risks of the disease.  When you have lived
through uncontrolled RA, when you live daily with the problems and pain that
joint damage bring ,then to many of us. the meds risks are worth it.

I had some mild hair loss with Methotrexate.  It stabalized then regrew.

Karen
> Is that the correct abbreviation? I have been reading about this class
> of drugs and it seems pretty scary-complications with bone marrow,
[quoted text clipped - 4 lines]
> loss while on them? Mild, moderate or severe? Did it grow back or not?
> Lisa
Janet R - 16 Feb 2005 02:21 GMT
Ditto for me.  My hair around my face and on top started to thin, but it is
growing back now.  I just switched my part to the side for a month or so.

I would wear a wig rather than give up MTX.

Janet R

> Lisa,
> If we seem "happy" with these drugs its because many of us know what life
[quoted text clipped - 18 lines]
>> loss while on them? Mild, moderate or severe? Did it grow back or not?
>> Lisa
RoseB - 16 Feb 2005 00:02 GMT
>Is that the correct abbreviation? I have been reading about this class
>of drugs and it seems pretty scary-complications with bone marrow,
>immune system, possible kidney/liver failure etc. Yet people on this
>group seem very happy with these drugs.

Side effects are rare. Remember too that a side effect profile lists
all potential side effects including syptoms that occured in the
sample population whether there was a direct cause effect relationship
established or not. Generally you know right away whether you will be
able to tolerate a drug or develop side effects, and you can stop
early in the course of treatment.

>My big question is for the women on the group. Did you experience hair
>loss while on them? Mild, moderate or severe? Did it grow back or not?
>Lisa
I have been on mtx for many years and have a thick head of hair. Many
people in this group that have experienced hair loss, also take grape
seed oil an OTC product (grapeseed oil) with good results.

My one "female" issue occurred when i took mtx in combination with
cytotec. Then I had prolonged menstrual bleeding, which stopped when i
stopped taking the misoprostil (cytotec).

It helps to be informed so asking questions is a good thing. The other
thing is to find out as much as you can about RA. Some of it sounds
pretty scary as well. Some of the co-morbid conditions that can arise
are not pleasant either. If the drugs can prevent these, then it is
great, in spite of the risks.
    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
Gwen Love - 16 Feb 2005 23:52 GMT
I have stopped losing hair since I started Grapeseed Extract.  I used to
have a lot come out when I shampooed, but don't now.
Gwen

> >Is that the correct abbreviation? I have been reading about this class
> >of drugs and it seems pretty scary-complications with bone marrow,
[quoted text clipped - 28 lines]
>
>      Please remove "Ima" to reply.
Nann Bell - 16 Feb 2005 00:31 GMT
We are happy because we are delighted to have the disease alleviated.  Also,
most of us suffer few side effects and find those far more manageable than
the pain and fatigue of the disease.  

Remember that the side effects are things that MAY happen, that doesn't mean
they will.  And for 99.99% of side effects and people, the problems will go
away once the med is stopped.

When I got on both Arava and mtx, I did have some hair loss.  It wasn't a big
deal for me as I have very thick hair to begin with.  (LOL, I recently
reconnected with a gang of high school friends and they still remember my
hair!)  Eventually though, I got tired of cleaning up all the blasted hair
(LOL) and started taking grape seed extract.  That greatly slowed the hair
loss, probably down to a normal level again.  The only problem is that
between the biotin I take for my nails (also helps hair though) and the grape
seed extract, both my hair and nails are growing so darn fast these days!

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Nann
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Simply the thing I am shall make me live --- William Shakespeare

Mary Z - 16 Feb 2005 01:18 GMT
>My big question is for the women on the group. Did you experience hair
>loss while on them? Mild, moderate or severe? Did it grow back or not?
>Lisa

I was probably on the largest doses of mtx (for RA)  of anyone in this
newsgroup, and had no hair loss.  Remember mtx is a cancer drug so
much of what you read is for doses many times greater than anything we
take.   Keep in mind that RA is very serious disease aside from the
fact that if untreated it can cripple you it also has many other
systemic effects including: increased chance for Lymphoma, lung
inflammation and scaring, inflammation of the heart, inflammation of
the eyes and blindness (ask Duckie about that one), enlargement of the
spleen.  Inflammation of the blood vessels open ulcers etc etc.  The
disease is serious and needs to be treated seriously.  Everyone
worries about potential side effects, but don't forget about the
certainity of the disease.  I take Remicade and mtx the combination
has put me into remission I never want to go back to the pre-remicade
days.  -- MZ

Visit my website:
http://www.mzuschlag.com
Harvey R. Stone - 16 Feb 2005 01:57 GMT
Hi Lisa,    You have received several good answers.   Sorry,  I am male with
RA and we have the same hair problems with the same drugs that women do.
     I want you to know that your use of the word :"happy",,, makes me a
little bit angry at your thought process.
      Let me ask a question or two.   Why do you ask?   Do you have a
better understanding of how both men and women think with loss of function,
jobs, husbands or wifes because a person lives with dialy pain so bad that
it controls them and what they can do on any given day?????

   You talked about scary side effects.  I want you to understand that the
DISEASE is what is scary.   You have no idea how good a day is when our
disease is controlled and we can do things that normal people TAKE FOR
GRANTED.  Grrrrr. going to stop now.  I hope you got some answers.
Harv
> Is that the correct abbreviation? I have been reading about this class
> of drugs and it seems pretty scary-complications with bone marrow,
[quoted text clipped - 4 lines]
> loss while on them? Mild, moderate or severe? Did it grow back or not?
> Lisa
Joan Carter - 16 Feb 2005 02:17 GMT
>Is that the correct abbreviation? I have been reading about this class
>of drugs and it seems pretty scary-complications with bone marrow,
>immune system, possible kidney/liver failure etc. Yet people on this
>group seem very happy with these drugs.

There can be side effects, Lisa, but they have to list all the possible side
effects that can happen. Most people will not experience most of them, and the
dosage of Methotrexate for instance is small compared to the dose used to treat
cancer. Side effects "usually" but not always occur with high doses. Regular
blood tests keep track of potential side effects.

I am grateful for these drugs as the damage done by arthritis could be much
worse without them. I don't especially like having to take drugs but I would be
in much worse shape without them.

>My big question is for the women on the group. Did you experience hair
>loss while on them? Mild, moderate or severe? Did it grow back or not?

Don't think I have had hair loss, and I guess it would not be a big thing if I
did. There are always wigs. And I think what people experience is probably a
thinning of hair. Again, everyone is different. My advice, if your doctor is
considering these drugs is to research them, talk with him or her about the best
one to try, you may have to try more than one, and them make a decision
together. It is important for the person taking the drug to be as comfortable as
possible with the decision. It's a big step, but treatment is so important. Good
luck.
---
Joan
Jo Firey - 16 Feb 2005 02:44 GMT
> Is that the correct abbreviation? I have been reading about this class
> of drugs and it seems pretty scary-complications with bone marrow,
[quoted text clipped - 4 lines]
> loss while on them? Mild, moderate or severe? Did it grow back or not?
> Lisa

I have a really thick head of hair, I could actually afford to lose some of
it.  But I've been on MTX for several years and it hasn't thinned it at all.

I wouldn't care if it did.  Without the MTX or something like it I wouldn't
be able to function, hair or no hair.

Jo
islands@volcanomail.com - 16 Feb 2005 03:27 GMT
Thank you, thank you to all the women who thoughtfully answered my
questions. I am terrified and depressed (at times suicidal since I have
battled one illness after another the last 10 years and have little
fight left now-not to mention no insurance and no chance of getting it
if I can't go back to work full-time) over the whole long drawn out
process of diagnosis. (I have been through this before with other
illness.) What I have is either RA or Lupus (elevated ANA speckled
pattern, high sed rate, specific symptoms etc. etc.). I am exhausted
and not feeling well and outside this group no one understands. The
progression of the disease and the drugs used to treat them are all
frightening to me which was why I asked the questions I did. Yes,
people here seem happy with their meds which was why I commented on it.
That gave me hope and I wondered why that was and you have all answered
beautifully. I had such thick hair I had to pin it up during the day or
I was hot, it thinned considerably but not too bad if you didn't know
me pre-thyroid. As thyroid affects metabolism and the fatigue makes it
impossible to exercise (then my joints started hurting even water
exercise hurts)for a while I weighed almost 200lbs. with thinner hair.
At the time at 39,  and divorced, men ran the other way when I tried to
talk to them. I was even sadder to think that I'd be alone the rest of
my life. I finally lost the weight and my hair stopped thinning (though
it never came back to the way it was) and no Harv I don't think hair
loss is anywhere near as traumatic for men as women. All women are
judged on is appearance. I have 10 years university education, had a
career as an inner city teacher and spent my life giving back to the
community both in my work and as a volunteer and none of that counted
for s**t when I got fat and ugly-men didn't care that I was
intelligent, well-educated and giving. I've been alone for years and
years, it is very lonely.  Then I lost the weight and suddenly I exist
again. I have not met many men willing to take on someone with a
serious progressive illness, being ugly and losing my hair will assure
that. I know, been there, experienced that...My concerns are many, my
fears are many and the hair thing in context is not huge but to me it's
devastating. All the women who answered me here took me seriously and
were very kind. I don't know Harv, why each time I post (and some
others I've seen)you are so hostile. In fact I wasn't speaking to you
anyway.

> Is that the correct abbreviation? I have been reading about this class
> of drugs and it seems pretty scary-complications with bone marrow,
[quoted text clipped - 4 lines]
> loss while on them? Mild, moderate or severe? Did it grow back or not?
> Lisa
RoseB - 16 Feb 2005 04:09 GMT
I can relate a little to how you are feeling. I was 15 when
diagnosed with JRA, It affects your self concept severely, and affects
how your project yourself to others, I think that should be included
as a side effect of RA. You simply don't feel feminine wearing
supportive low heeled shoes, wrist braces,  pred moon face and other
assorted paraphanalia that accompanies the treatment of this disease.

It sounds like you need a hug.

Also know that the right man will judge you for who you are inside and
not for your health.

    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
islands@volcanomail.com - 16 Feb 2005 05:00 GMT
Thanks for the hug Rose and the encouragement, you're right of course.
Some days are just harder than others. :0)
> I can relate a little to how you are feeling. I was 15 when
> diagnosed with JRA, It affects your self concept severely, and affects
> how your project yourself to others, I think that should be included
> as a side effect of RA. You simply don't feel feminine wearing
> supportive low heeled shoes, wrist braces,  pred moon face and other
> assorted paraphanalia that accompanies the treatment of this disease.

> It sounds like you need a hug.
>
[quoted text clipped - 5 lines]
>
>      Please remove "Ima" to reply.
Nann Bell - 16 Feb 2005 13:46 GMT
>> Also know that the right man will judge you for who you are inside and
>> not for your health.

and my first thought was that you don't want the guys who are unable to see
who you really are and are unwilling to deal with your disease.  They ain't
worth your time and effort.

I seriously thought it might just be easier to go through life alone for some
time after my diagnosis after the response of the fellow I was seeing at the
time.  Then I met my DH, who saw me more thoroughly on our first date than
many people have after years and who has always been understanding and
supportive with my health issues.  Now I know more than ever that the ones
who don't provide that ain't worth it.

while I'm at it, methotrexate is a really inexpensive DMARD, especially if
you can stand to inject yourself with it.  It is also really effective for
many people.  Some folks with lupus have also used it for shorter periods to
get major flares under control.  Plaquenil can also be inexpensive and is a
milder med, but it doesn't have as high a rate of effectiveness.  There's a
good chance that mtx, and maybe even plaquenil, could get you feeling decent
again and back to work and health insurance.

Signature

Nann
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Simply the thing I am shall make me live --- William Shakespeare

islands@volcanomail.com - 16 Feb 2005 18:43 GMT
Nann,
I know you're right, just that so far I haven't met that person who
seems willing to be there through the health stuff. I don't know if
it's where I live (same city where I grew up) or it's just been me. I
see that there are others on this group who have found fantastic guys
and it always cheers me to read about it. Thanks also for the med
information-when I research it on my own it's very scary, hearing your
(and others experiences) makes it seem manageable (plus I get confused
over which drugs are really expensive and which aren't)The injection
thing is another issue but I know if I had to do it, I would.
Thanks :)
Lisa
> >> Also know that the right man will judge you for who you are inside and
> >> not for your health.
[quoted text clipped - 22 lines]
> remove the Gator cheer to email me
> Simply the thing I am shall make me live --- William Shakespeare
Nann Bell - 17 Feb 2005 14:22 GMT
> Nann,
> I know you're right, just that so far I haven't met that person who
> seems willing to be there through the health stuff. I don't know if
> it's where I live (same city where I grew up) or it's just been me.

I really do understand that.  I personally come from a rather quirky family
and that made it hard to find someone I really felt at home with.  In fact, I
was rather shocked when it did happen!   LOL  Not sure how I got so lucky,
but i know it did happen just by me being me and doing the things that
mattered most to me with what energy I did have.

> (and others experiences) makes it seem manageable (plus I get confused
> over which drugs are really expensive and which aren't)The injection
> thing is another issue but I know if I had to do it, I would.

I never injected mtx, but I am injecting Enbrel now.  It is much easier than
I thought it would be.  Now, my brother is a long-standing Type 1 diabetic.  
I went into the Enbrel with the attitude that I couldn't complain about 1
shot a week when he's been taking several a day for 35 years now!  That may
have made it easier for me.

My brother does tell me that they have relatively recently started coating
injection needles with silicone and that makes injections much smoother and
easier.  (Who'da thunk it?)

And if you want to get a handle on how expensive different meds are, you can
get price quotes for prescriptions on drugstore.com.  Of course your local
pharmacy may vary somewhat but it does give you a general idea.  I've used
them a lot that way, just to find out what stuff costs.
Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

islands@volcanomail.com - 16 Feb 2005 18:44 GMT
Nann,
I know you're right, just that so far I haven't met that person who
seems willing to be there through the health stuff. I don't know if
it's where I live (same city where I grew up) or it's just been me. I
see that there are others on this group who have found fantastic guys
and it always cheers me to read about it. Thanks also for the med
information-when I research it on my own it's very scary, hearing your
(and others experiences) makes it seem manageable (plus I get confused
over which drugs are really expensive and which aren't)The injection
thing is another issue but I know if I had to do it, I would.
Thanks :)
Lisa
> >> Also know that the right man will judge you for who you are inside and
> >> not for your health.
[quoted text clipped - 22 lines]
> remove the Gator cheer to email me
> Simply the thing I am shall make me live --- William Shakespeare
Janet R - 16 Feb 2005 05:18 GMT
When the right person comes along...your hair, weight, health, etc wont be
an issue.

When my first husband left (me with my 12 y/o son and no job)....I had a
good education...got a job and a place to live in a new city.  I was
overweight and have Lupus, OA, gout, diabetes, bleeding disorders...and no
friends or family nearby.

I married the best man to ever walk into my life a year later.  He didn't
waiver when I told him about my Lupus, etc, and said my weight was mine and
my doctors issue...he loved me no matter what.

If a person cannot take your health issues..then they are a not for you.
But there folks out there that CAN handle it.  How you exhibit your feelings
about your health will frame how others see you  (hope that made sense).

If you seem ok with it...they will be more comfortable.

Anyone at anytime can become disabled, physically or mentally.  You can
marry a well person one day and the next they are disabled.  Remind those
who worry about your illnesses that we are all terminal!

Hope this helps....You are in my thoughts
Janet R

> Thank you, thank you to all the women who thoughtfully answered my
> questions. I am terrified and depressed (at times suicidal since I have
[quoted text clipped - 33 lines]
> others I've seen)you are so hostile. In fact I wasn't speaking to you
> anyway.
islands@volcanomail.com - 16 Feb 2005 05:56 GMT
Janet,
I'm glad for you that you found someone, that's wonderful. Everything
you said was right and who knows what the future will bring. Thank you
for your support. :) :)
Lisa
> When the right person comes along...your hair, weight, health, etc wont be
> an issue.
[quoted text clipped - 58 lines]
> > others I've seen)you are so hostile. In fact I wasn't speaking to you
> > anyway.
Jo Firey - 16 Feb 2005 05:43 GMT
>All the women who answered me here took me seriously and
> were very kind. I don't know Harv, why each time I post (and some
> others I've seen)you are so hostile.

> In fact I wasn't speaking to you
> anyway.

This is a public newsgroup.  Its pretty hostile of you to come to the group
and feel you can speak in the group to some but find fault with others.

If you are going to find fault with others tone, you might want to moderate
yours.

We are all here to give and receive support from each other.  And we try to
do so in spite of the pain we may be in and the problems we may have.
Doesn't mean everyone succeeds all the time.

Jo
Harvey R. Stone - 16 Feb 2005 12:51 GMT
I don't know Harv, why each time I post (and some
> others I've seen)you are so hostile. In fact I wasn't speaking to you
> anyway.

  What you think is hostility is really just intensitiy.   I hope you
understand that men face the same problems only in a slightly different way.
Since you are well read in the newsgroup, you know we have lost dear friend
to the newsgroup from what this disease does to a person.   This is not a
soap opera.  Be afraid of the disease.
Harv
Gwen Love - 17 Feb 2005 00:00 GMT
Harv, if you were speaking of Donnah, it wasn't her terrible RA that took
her but the brain cancer.  But I know how RA can do it.
Gwen

> I don't know Harv, why each time I post (and some
> > others I've seen)you are so hostile. In fact I wasn't speaking to you
[quoted text clipped - 6 lines]
> soap opera.  Be afraid of the disease.
> Harv
Rebecca Ford - 16 Feb 2005 19:07 GMT
I'm one of those who had quite a bit of hair loss with 20mgs of mtx.
Probably almost a third of it wiht some thinning patches that were
noticeable to only me and my hubby. I did have a lot of hair to begin with,
though. The grape seed didn't do much for me but I did add a french-canadian
product with all sorts of things including biotin that has helped. My rheumy
also lowered my mtx dose to 10mg and added 10 mg of Arava (in addition to
the Enbrel I've been on for almost 6 years). The doc figured that by using
lower doses of two drugs, as opposed to a higher dose of one, I could still
get the same effectiveness with fewer side effects. I don't know if it's the
supplements or the new drug combo but the fall-out is lessening.

I, too, have the added thyroid problem with the hair, so I suppose it may be
an issue I will revisit periodically. Fortunately, I haven't had serious
weight issues from the Hashi's, although the Arava is dropping my weight a
little more than I expected.

As scary as all the side effects are from all the RA drugs, I'd rather risk
it and die an early death with a decent, functioning body and a physically
active lifestyle, than to live a long, painful life unable to do the things
I love to do. Does it get me down sometimes? You bet. Do I rage at the
unfairness of this disease and all the difficult choices we have to make?
Probably more than I should. But thankfully, I have these drugs available
and am managing to live a good life in spite of my body revolting on me. Of
course, it's easier to say this when I'm not in a flare. ; ) Hang in there
and know you will have better days.

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Rebecca Ford

 
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