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Medical Forum / Diseases and Disorders / Arthritis / November 2007

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Methotrexate - Question

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Willa - 04 Nov 2007 10:00 GMT
Hi there,

I have been using Methotrexate (20mg) once a week for the last 3
years.  Recently someone told me that one was not supposed to use this
medication for more than a couple of months.  So far I did not really
experience any extreme side effects, I am just wondering if other
users also take this medication on a permanent basis, and if they
experienced any side effects in the long run?

Kind regards.
Harvey R. Stone - 04 Nov 2007 11:18 GMT
> Hi there,
>
> I have been using Methotrexate (20mg) once a week for the last 3
> years.  Recently someone told me that one was not supposed to use this
> medication for more than a couple of months.

I apologize for breaking up your post but it is important that you realize
the truth.   That person does not know what they are talking about.  That
person can be dangerous and does not know it.    With some people,,, it
takes two months before the medicine even starts to work.   I took it for 8
years and it worked well before changing to Arava for a year for my RA.

So far I did not really
> experience any extreme side effects, I am just wondering if other
> users also take this medication on a permanent basis, and if they
> experienced any side effects in the long run?
>
> Kind regards.

That's what those blood tests are for to see how your liver is handling the
amount of Methx you take.    I took 17.5mg a week for most of those years.
Do you ask your RD what your blood test shows?
Please reply
Harv
Willa - 04 Nov 2007 11:38 GMT
> > Hi there,
>
[quoted text clipped - 21 lines]
> Please reply
> Harv

Thanks for answering...

I only see my RD once in 6 months and he normally just informes me
that I am looking good and all is well.  He never mentioned anything
about the liver...just the normal RT factor and routine tests.  You
mentioned that you changed to Arava, I also use Arava but I use it
with Methx and
a whole lot of other meds...reading the posts in the groups I am
starting to think that there must be something wrong, where some ppl
only take 1-3 types
of meds, I take about 6-7 diff meds!
Harvey R. Stone - 04 Nov 2007 14:01 GMT
Hi Willa,   Both Methx and Arava are hard on you liver.   Your liver enzymes
must be in the OK zone or you would not be taking both of them and they are
much the same in their side effects except that Arava causes many people to
have lower bowel distress but both of them can cause loss of hair.   A
person can use grapeseed extract to help the hair loss along with folic
acid.  They also can take Milk Thistle to help their liver live with Methx
and Arava.  Please ask your RD about your liver enzyme reading.   I would
write that question down on something you take for the RD's office.   If you
are like me, if I don't write it down,,,, I forget half of what I want to
ask but that is only a three month mistake for me.
Harv

>> > Hi there,
>>
[quoted text clipped - 37 lines]
> only take 1-3 types
> of meds, I take about 6-7 diff meds!
Willa - 04 Nov 2007 14:45 GMT
> Hi Willa,   Both Methx and Arava are hard on you liver.   Your liver enzymes
> must be in the OK zone or you would not be taking both of them and they are
[quoted text clipped - 55 lines]
>
> - Show quoted text -

Thank you for advise on the herbs, I will def try it out...

Namaste
Willa
hanbell@earthlink.net - 04 Nov 2007 15:06 GMT
> Thank you for advise on the herbs, I will def try it out...
>
> Namaste
> Willa

Harv has given you good and solid advice.  You don't mention how often
you have labwork drawn though.  I'm hoping you have liver enzymes
drawn every two months with that combination fo mtx and Arava.  I was
on both for a while.  It took a lot of talking to convince my RD at
the time to try me on high doses of both because of the liver
effects.  But I was very good about not drinking alcohol (very good,
not perfect, I admit!) and I took milk thistle daily.  My liver
enzymes remained fine throughout, but my docs wouldn't ever let me go
more than twomonths between labwork.

As to taking mtx for years and year, whoever said that is not up on
arthritis treatment.  In fact, in general if you take a long break
from mtx, it may not work for you the next time you try it!  My dad
was in the first wave of people taking mtx for RA and had been taking
it for over 20 years when his heart finally gave out.  (with constant
labwork, of course!)

Nann
Harvey R. Stone - 05 Nov 2007 01:56 GMT
> As to taking mtx for years and year, whoever said that is not up on
> arthritis treatment.  In fact, in general if you take a long break
> from mtx, it may not work for you the next time you try it!

And that is why I stopped taking Methx after all those years.  I had stopped
the Methx twice on the advice of my family doctor because of Sinuses
problems or lung problems after a lengthy virus and lung problems.   Wellll,
It just did not work for me any more and that means lots of pain and welling
in several places and getting on another DMARD to get things under control
again where life was livable which took a couple of RD appointments which
means 6 months of pain for me.   That impressed me with the need of keeping
my body under control and not playing with the prescription for my DMARD.
It also made me realize that family doctors do not appreciate what it takes
to control RA.   I do my very best to keep both doctors informed on what is
taking place with me.  I have to do this with my RD tomorrow.
Harv

My dad
> was in the first wave of people taking mtx for RA and had been taking
> it for over 20 years when his heart finally gave out.  (with constant
> labwork, of course!)
>
> Nann
RoseB - 05 Nov 2007 14:49 GMT
I have now been on the equivalent of 25 mgs of mtx for 12 years, most
of the time in combination with something else, and recently in
combination with remicade and then enbrel.
Arava did not work for me, but in fact made my RA refractory or worse.
It is possible that your doc did not mention about the liver enzyme
testing. Look for ALT and AST results, or ask your doc. Milk thistle
is a good herbal remedy that has been shown to reduce ALT and AST.

What are the meds you are on? You mention 7-8 different meds. One of
them is probably to counteract the side effects of mtx- leucovorin
(folinic acid) or folic acid. You may also be on an NSAID like
celebrex or something similar.
    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
Willa - 07 Nov 2007 18:42 GMT
> I have now been on the equivalent of 25 mgs of mtx for 12 years, most
> of the time in combination with something else, and recently in
[quoted text clipped - 12 lines]
>
>      Please remove "Ima" to reply.

Hi
Thank you for the replies,  sorry I could not reply sooner, we had a
bit of a thunder storm and
I'd rather unplug all the electrical stuff in the house.
I went and purchased some milk thistle and started using it - thank
you for that.
The meds that I was prescribed are as follow:
Metx, folic acid, celebrex, Arava, Prednisone, Nexiam,
Cymbalta,Plasmoquine, Topamax, Trepiline and Epilim
All off the above was prescribed while I was in hospital when
diagnosed with RA.
**Im a bit lost...what does "lma" mean?**
I only get my blood tested every 6 months.  You dont even get to see
your physian before the time, the only
way to get an "appointment" is to land up in hospital!

Rheumetologists are in high demand here and sometime you can
wait up to 8 months for an appointment, they do not take calls, the
receptionist will call you back in due time with an answer.
The last time I had a question, I was told to look on the internet!
These drs are way to busy to deal with not-so-deadly-sick-ppl.
That is why I am so glad I found site where I can get the correct info
from ppl living with the same or similar illness.

Thank you all!

Willa
Thumper - 07 Nov 2007 19:00 GMT
>> I have now been on the equivalent of 25 mgs of mtx for 12 years, most
>> of the time in combination with something else, and recently in
[quoted text clipped - 40 lines]
>
>Willa

Wow, that's a lot of meds.  Most of it isn't for arthritis though.
Thumper
Willa - 07 Nov 2007 19:37 GMT
> >> I have now been on the equivalent of 25 mgs of mtx for 12 years, most
> >> of the time in combination with something else, and recently in
[quoted text clipped - 45 lines]
>
> - Show quoted text -

Hi,

Well, they told me that the RA is affecting my nerve system, and that
there was already to much damage. (The first dr. that I saw actually
thought I had a stroke and prescribed Parkinson (spelling?) medication
because of the state I was in. I was totally spastic, had migraines,
could not climb stairs or walk for that matter.
My GP saved me from hell and had me admitted where they pumped me full
of meds and did I don't know how many tests.  All of this just to come
to the conclusion that I have RA.  Nobody that suffers from RA
experience it the same way...I thought I was going to die, I have
NEVER felt so sick.

I was in hospital for close to 3 weeks, the dr decided that because
the meds work, the meds stay!  I am to scared to argue, I never want
to be so sick again.
Now I live with weight gain, and numerous other side effects of these
meds...I just don't know which ones...lol.

On the bright side...

I started playing golf again!
Willa - 07 Nov 2007 19:42 GMT
> >> I have now been on the equivalent of 25 mgs of mtx for 12 years, most
> >> of the time in combination with something else, and recently in
[quoted text clipped - 45 lines]
>
> - Show quoted text -

Hi,

Well, they told me that the RA is affecting my nerve system, and that
there was already to much damage. (The first dr. that I saw actually
thought I had a stroke and prescribed Parkinson (spelling?) medication
because of the state I was in. I was totally spastic, had migraines,
could not climb stairs or walk for that matter.
My GP saved me from hell and had me admitted where they pumped me full
of meds and did I don't know how many tests.  All of this just to come
to the conclusion that I have RA.  Nobody that suffers from RA
experience it the same way...I thought I was going to die, I have
NEVER felt so sick.

I was in hospital for close to 3 weeks, the dr decided that because
the meds work, the meds stay!  I am to scared to argue, I never want
to be so sick again.
Now I live with weight gain, and numerous other side effects of these
meds...I just don't know which ones...lol.  On the bright side...

I started playing golf again!
Don Kirkman - 08 Nov 2007 00:40 GMT
It seems to me I heard somewhere that Willa wrote in article
<1194460925.719358.223170@q5g2000prf.googlegroups.com>:

>Rheumetologists are in high demand here and sometime you can
>wait up to 8 months for an appointment, they do not take calls, the
[quoted text clipped - 3 lines]
>That is why I am so glad I found site where I can get the correct info
>from ppl living with the same or similar illness.

>Thank you all!

Obviously I don't know where in SA you are, Willa, but one of your best
rheumatologists, Dr. David Gotlieb in Cape Town, used to be quite active
in this group .  His Web site at http://www.arthritis.co.za/ is a
wonderful source of reliable information about arthritis.  It may even
be useful is locating a doctor you'd be comfortable with.
Signature

Don Kirkman

RoseB - 08 Nov 2007 02:11 GMT
Hi Willa,
It is just a way of blocking my email address so that spammers do not
send me all kinds of junk emails. My name is Rose, and my email
address starts with Rosa. We had a show that starred Donald Trump and
on it there was a contestant named Omarosa. This is kind of a play on
that.

In Canada there is a long waiting period to see a rheumatologist as
well. My rheumie (we call them RD for short) has a two year waiting
period for new patients, and very shortly I am to see a foot and ankle
surgeon that typically has a three year wait.

I notice though that your email address is from South Africa. AM I
correct in that? We know about a lovely RD in Capetown whose name is
Dr. David Gottleib. If there is any way that you can get in to see
him, push for that. I have heard that he is the best rheumy in SA.

Also if you are in or near Capetown and come across a Dr. Wahl, tell
him hello from Rose in Canada. LOL

You are on a lot of meds, Willa. Perhaps you need a change. I am not a
doc, nor do I play one on television. I just know that my RA became
refractory to arava. Remicade worked well for me and enbrel worked
even better.

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

Please remove "Ima" to reply.
Kel Varson - 11 Nov 2007 00:35 GMT
> Hi there,
>
[quoted text clipped - 6 lines]
>
> Kind regards.

Try Remicade, it works better for me.
DeeTee and Bob Taggart - 12 Nov 2007 13:55 GMT
I wish it were that easy to just "try Remicade" - it's not. We have to
suggest to our rheumatologist (after waiting sometimes a month or two for an
appointment) that we try something else, he/she has to agree with us and be
willing to prescribe it, and our insurance companies have to be willing to
pay for it.

That said, I am currently on Methotrexate and have been for several years.
Whoever told the original poster that she could only be on Methotrexate for
a couple of months was wrong. Remember, people, only a qualified doctor can
prescribe medication.

DeeTee's 2 cents worth.

"Kel Varson" <kelvarsonautosales@comcast.net> wrote in message
news:119474133
1.911314.282990@v2g2000hsf.googlegroups.com...
>> Hi there,
>>
[quoted text clipped - 8 lines]
>
> Try Remicade, it works better for me.
 
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