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Medical Forum / Diseases and Disorders / Lupus / March 2005

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methotrexate?

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Deb - 16 Mar 2005 23:29 GMT
Hi, Deb here, seen my consultant this morning who has said that the next
step would be to try Methotrexate; at which point my mum freaked (she's also
a nurse who has had patients on this with major problems), she doesn't
usually panic,but she's got me a bit worried now.
Anyone on it?
Any advice?
DEB (uk).
janers - 17 Mar 2005 00:30 GMT
I am suppose to start it but I HAVE to take the injections.  Right now the
injections are NO where to be found and are on back order every where,  so
I will wait.

I too am a nurse and I understand your mother's reluctance but sometimes
these type of drugs work well with joint pain.  THey are not however given
is such big doses as the ones that treat cancer.  But yes there are side
effects and with being on metho, you will definately need monthly blood
tests to monitor your liver.

Have you tried anything else before this?  Is that what is worrying mom?
All the meds used to treat this disease do carry side effects, even the
cortisone. But what we going to do, except follow the doc and keep
monitored so nothing more happens right?

I tried most of the other drugs and my gut and tummy will not let me take a
lot of oral medications so this might help me there.   There are others out
there who have been on it a long time and are doing well.  Let;'s hear from
them.

good luck and keep me posted
janers
Deb - 17 Mar 2005 10:47 GMT
I've been on/still on slow release anti-inflammatories, codeine,
paracetamol, plaquenel, prednisalone on and off but despite all these my
pain is escalating above and beyond the levels where the drugs are
effective; I also take omega 3 capsules everyday; my energy level is
practically non-existent but I can't seem to get more than 4 hours sleep at
a time; I'm determined to keep working until I really need time off (I use
more energy at home than work anyway so that's no bad thing).
Rheumatologist toyed with the idea of trying oxycontin, but we'll see what
happens; seems a little strange that I may soon be taking something my
patients take for their cancer pain!!
Any other ideas, anyone found other pain relief less invasive?
Thanks,
DEB.
> I am suppose to start it but I HAVE to take the injections.  Right now the
> injections are NO where to be found and are on back order every where,  so
[quoted text clipped - 18 lines]
> good luck and keep me posted
> janers
Mair - 17 Mar 2005 18:18 GMT
Yeah, I'm on methotrexate.  Been on it for about 6 months.  I only take 7.5
mg per week.  I take it orally, as it does not seem to bother my stomach.  I
was also on it 10 years ago, with very good results.  I was basically
bedridden with fatigue and joint pains in my feet...and after about 3 months
on methotrexate, I was much much better... able to get off the prednisone
altoghether, and even to go back to school and graduate!

This is just my own story of my experience with methotrexate.  If you decide
to use it, I hope that your results are good as well,

Mair

> Hi, Deb here, seen my consultant this morning who has said that the next
> step would be to try Methotrexate; at which point my mum freaked (she's
[quoted text clipped - 4 lines]
> Any advice?
> DEB (uk).
Diane Bergman - 18 Mar 2005 02:49 GMT
I have been on it since 1998.  I am on 15mg per week and have been only as
high as 20.  It has helped me wean down on the prednisone.  I also, have not
had any problems with it.  I have been so much better since starting it.  My
aunt was put on it a few years ago because she has severe rheumatoid
arthritis, and she couldn't believe how much better she felt.

Good luck.

Diane
> Yeah, I'm on methotrexate.  Been on it for about 6 months.  I only take 7.5
> mg per week.  I take it orally, as it does not seem to bother my stomach.  I
[quoted text clipped - 16 lines]
> > Any advice?
> > DEB (uk).
Deb - 18 Mar 2005 11:02 GMT
It's nice to hear something positive, thanks alot for getting back to me,
DEB
> I have been on it since 1998.  I am on 15mg per week and have been only as
> high as 20.  It has helped me wean down on the prednisone.  I also, have not
[quoted text clipped - 29 lines]
> > > Any advice?
> > > DEB (uk).
Andy - 21 Mar 2005 21:49 GMT
>Hi, Deb here, seen my consultant this morning who has said that the next
>step would be to try Methotrexate; at which point my mum freaked (she's also
>a nurse who has had patients on this with major problems), she doesn't
>usually panic,but she's got me a bit worried now.
>Anyone on it?
>Any advice?

One aspect to consider is, what is likely to happen if you do NOT take
it? Your GP/Consultant ought to be able to give advice, then you have to
decide.
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Lee Thompson-Herbert - 24 Mar 2005 12:50 GMT
>>Hi, Deb here, seen my consultant this morning who has said that the next
>>step would be to try Methotrexate; at which point my mum freaked (she's also
[quoted text clipped - 6 lines]
>it? Your GP/Consultant ought to be able to give advice, then you have to
>decide.

Yeah, definitely consider the risks of _not_ taking the drug.  MTX is
actually pretty benign compared to Immuran or Cytoxan.  I was on 20mg
MTX injected for a while, along with Arava and Azulfidine.  However, I
had too many infections on that combination and my liver panels started
shooting up.  Also, I'm one of the unfortunates who gets migraines from
MTX.  That's proven to be a real bugger for me, because many of the new
biologicals work better with MTX, and some like Remecaid require it.

I was on Enbrel for about a year and a half, but the drug effect faded for
me.  I'm currently on Humira and doing much, much better.  The infection
risk is supposedly much higher than the triple combo I was taking 3 years
ago, but I haven't seen any real problems yet.

Your mother is probably getting upset because
1) MTX is considered a "serious" drug.
2) It does have reproductive consequences (can cause miscarriages)

What she's missing is that it's now standard procedure to haul out the
big guns early on to keep rheumatoid diseases from _getting_ horrible.
Used to, MTX was only pulled out when things were going straight to hell.
That's not true anymore, especially now that many people have been on it
for years with no ill effects.  It's proving to be a good mainline therapy,
sometimes much better than the standard Plaquenil.  

Goodness, you want to be freaked out, read the set of warnings on Enbrel
or Humira.  At least here in the US, there's a big "black box" warning
of the "May cause death" type at the top of the product description. ;}

Signature

Lee M.Thompson-Herbert        lee@retro.com         KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

Deb - 25 Mar 2005 18:40 GMT
Thanks for that, I've forwarded the mail for my mum to read, I'm sure it
will help her realise that MTX might actually help, not hinder.
DEB
> >>Hi, Deb here, seen my consultant this morning who has said that the next
> >>step would be to try Methotrexate; at which point my mum freaked (she's also
[quoted text clipped - 34 lines]
> or Humira.  At least here in the US, there's a big "black box" warning
> of the "May cause death" type at the top of the product description. ;}
cloud - 30 Mar 2005 17:18 GMT
I will be late for my own funeral but thought i would reply to this one for
what it's worth.
I am on Methotrexate and have found it has given me back a larger part of
quality in my life.
I have what is known as MCTD which is a combo of Lupus / RA and a few other
goodies too.
I have found the Methotrexate helped much with the flares I had experienced
over a 3 year period when I first began on Plaquenil.
I find I benefited more from it than those many inexpensive doses of
Predisone to which was partly responsible for my incurrance of Osteoporosis
and Diverticulosis. Often we must take some bad with the good.
Our doseage of Methotrexate is by far much smaller then those who are
prescribed it for reasons of cancer or organ-donar recipients.  Still, there
are still those setbacks which come in the way of infections and more as
this drug is classified as an immunosuppresent and suppresses the immune
system from what some believe autoimmune disease to behave as hyper-immune
systems.  I do have to take special care to avert from possible infections
and to treat cuts and bruises with prompt atopical antibacterial treatment.
Otherwise, appart from a few ear infections and a lung infection, I have to
admit I am enjoying the heck outta life.  Not nearly as much pain as I was
once in.

Hugs!

Always,
..? ???)) -:?:-
?.?? .????))
((??.?? ..?? cloud -:?:-
-:?:- ((??.??*
 
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