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Starting Methotrexate-- looking for voices of experience

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Jennie

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Apr 13, 2002, 2:03:42 AM4/13/02
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Hello. I have had Crohn's Disease for 9 years and have been on and
off just about every med I can think of. 6-mp caused my white count
to drop, immuran hasn't helped much and even prednisone which was
always the "magic bullet" hasn't helped much these last couple of
months. I currently take pentasa and remicade about every 6-8 weeks.
I get good relief from the remicade but it only lasts about 4 weeks.
THEREFORE, my doctor has recommended that I begin methotrexate. He
claims that the side effects are not that bad because the dosage is
low but all the info I've read about it sound pretty scary. I would
love to hear from anyone who has been taking this, especially in
conjunction with Remicade. What are the side effects, how bad are
they, do they go away with time, how long before feeling relief????
Thanks for your input! I appreciate it!

Sincerely,
Jennie

Paul Hinman

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Apr 13, 2002, 10:21:24 AM4/13/02
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I had to stop the methotrexate because it did nasty things to my liver.

Archaeopteryx

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Apr 13, 2002, 1:26:05 PM4/13/02
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On Sat, 13 Apr 2002 14:21:24 GMT, Paul Hinman <paul....@shaw.ca>
wrote:

>I had to stop the methotrexate because it did nasty things to my liver.
>

Paul,
What was your dosage? Do you remember? My doctor has
recommended methotrexate for me, but they are starting at 15 mg
because of my low body weight.

Amanda

Archaeopteryx

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Apr 13, 2002, 1:28:14 PM4/13/02
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On 12 Apr 2002 23:03:42 -0700, jenm...@mac.com (Jennie) wrote:

<snip>

>claims that the side effects are not that bad because the dosage is
>low but all the info I've read about it sound pretty scary. I would
>love to hear from anyone who has been taking this, especially in
>conjunction with Remicade. What are the side effects, how bad are
>they, do they go away with time, how long before feeling relief????
>Thanks for your input! I appreciate it!
>
>Sincerely,
>Jennie

Jennie,
I can't answer all of your questions, because I haven't
started taking methotrexate yet. However, I can answer your question
about how long it will be before it "kicks in." My doctor explained
that it's similar to Imuran and takes about six weeks before any
relief is usually felt. What is the dosage they are going to start
you on? I'll be watching this thread, too, because my doctor plans to
start me on 15 mg of methotrexate and simultaneously try Remicade.

Amanda

Linda

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Apr 13, 2002, 3:04:13 PM4/13/02
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Hi Jennie,

I've never taken methotrexate so I'm afraid I can't help you, but just
wanted to say "welcome" :)

Hugs, Linda
~~~~~~~~~


"Jennie" <jenm...@mac.com> wrote in message
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Jeff and Mary Berk

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Apr 13, 2002, 10:11:48 PM4/13/02
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i don't take this med, but i do hear that it is a member of the chemo
family. i hear some loose some of their hair and also hear of nausea
symtoms. about all i can help you with. it has shown a positive effect
when used with using remicade. evidently according to a study, about 7% of
the remicade infusion side effects are relieved if you take another
immuno~modulator such as mtx (not a large percent, huh?). but this is kind
of funny in a way, because studies have also shown that you only have about
10% chance of having remicade side effects during infusion or soon after
*ANYWAY*!!

jeffy

"Jennie" <jenm...@mac.com> wrote in message
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Connie Devine

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Apr 14, 2002, 1:20:32 AM4/14/02
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Spoke to my doc about this combination a while back. He stated that he had
spoken to some of his colleagues at UCSF and that this combo did not have
any marked positive effect. Do not know the exact number of patients and
time period, but trust my doc and those doing work in this area at UCSF.
Just some input. Do what your doctor recommends if you trust his judgment.
Connie

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Jennie

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Apr 14, 2002, 1:36:51 AM4/14/02
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My doctor has perscribed 25mg IM once a week then if I see improvement
switch me to oral MTX. He also suggested 1mg a day of folic acid
although I'm not sure what the connection is. My doctor told me that
the side effects at this dosage are not bad but all the reports from
the drug company etc. are scary. I'm very interested to see if the
combination of MTX with remicade will be more potent. The first time
I got Remicade it was like a cure. I couldn't believe it.
Unfortunately, subsequent doses haven't been that dramatic. My doctor
will be watching monthly CBC's then a liver profile at the three month
mark. Sounds like it is worth the risk. I am just hoping the
nausea, vomiting, fatigue, hair loss and menstrual irregularities are
not too bad.

Jennie

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Apr 14, 2002, 1:38:53 AM4/14/02
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"Nasty things"? What happened? Did your symptoms go away once you
went off the med?

Paul Hinman <paul....@shaw.ca> wrote in message news:<3CB83F61...@shaw.ca>...

Kibitzer28

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Apr 14, 2002, 8:24:59 PM4/14/02
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Medicationwise we sound like twins. I've had Crohn's for approximately 18
years.I get Remicade,take Pentasa etc. I've been on Methotrexate injections
once a week for the past year. I have found that it tends to boost the
Remicade. However, it has been of concern when I've developed infections and
take forever to heal. My doctors now tell me to skip the Methotrexate for a
while when this happens. My immune system has already been compromised and
regular blood tests help to insure that the Methotrexate has not been doing
damage to my liver or white cells. I would recommend taking it as long as you
have good follow up and can truly communicate with your physician. Good luck.

Sheila

Gross Family

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Apr 15, 2002, 2:15:54 AM4/15/02
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IT CHANGED MY LIFE ...10MG ONCE A WEEK AND 3 DAYS LATE ONE FOLIC ACID......

"Jennie" <jenm...@mac.com> wrote in message
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REP

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Apr 15, 2002, 7:05:43 AM4/15/02
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In article <5721c704.0204...@posting.google.com>,
jenm...@mac.com (Jennie) wrote:

> What are the side effects, how bad are
> they, do they go away with time, how long before feeling relief????
> Thanks for your input! I appreciate it!

from http://www.cancerbacup.org.uk/info/methotrexate.htm:

Possible side effects

Temporary reduction in bone marrow function. This can result in anaemia,
risk of bruising or bleeding and infection. This effect can begin about 7
days after the treatment has been given and usually reaches its lowest
point at 10-14 days after the chemotherapy. Your blood count will then
increase steadily and will have usually returned to normal within 21-28
days.

The extent to which your blood count is reduced depends on the dose of
chemotherapy you receive and which other chemotherapy drugs, if any, are
given in combination. Your doctor can advise you how likely it is that your
blood count will be lowered by the chemotherapy. Your blood count will be
checked regularly to see how well your bone marrow is working. If your
temperature goes above 38C (100.5F), or you develop any unexplained
bruising or bleeding, or you suddenly feel unwell, contact your doctor or
hospital straight away.

Temporary taste alterations. A dietician or specialist nurse at your
hospital can give advice. CancerBACUP's booklet Diet and the cancer patient
has tips on boosting appetite, coping with eating difficulties and
maintaining weight.

Mouth sores and ulcers. If your mouth becomes sore, or you notice small
ulcers, tell your doctor. They can prescribe appropriate mouth care for
you.

Diarrhoea. This can usually be easily controlled with medicine but let your
doctor know if it is severe or persistent. It is important to drink plenty
of fluids if you do have diarrhoea.

Skin changes. Your skin may darken, due to excess production of pigment.
This usually returns to normal a few months after the treatment finishes.

Your kidneys may be affected. Methotrexate in very high doses can damage
the kidneys. It is uncommon for this to happen when conventional doses are
given. To stop this happening an alkaline solution (soda bicarbonate) is
given intravenously for several hours before the methotrexate is given.
Your kidneys will be checked by a blood test before each methotrexate
treatment.

Gritty eyes due to inflammation of the cornea. If this occurs it is
important that you tell your doctor. They can prescribe soothing eye drops.


Less common side effects

Nausea and vomiting. There are now very effective anti-sickness drugs to
prevent or substantially reduce nausea and vomiting. If it does happen it
may begin after the treatment is given and last for a few days. If the
sickness is not controlled, or continues, tell your doctor. They can
prescribe other anti-sickness drugs which may be more effective.

Blurred vision. Methotrexate may affect eyesight. Tell your doctor about
eye pain or vision changes.

Hair loss. This is very uncommon at low doses but often happens when high
doses are given. Hair may thin, or occasionally be lost completely. If this
occurs, it usually begins about 3-4 weeks after starting treatment,
although it may occur earlier. You may also experience thinning and loss of
eyelashes, eyebrows and other body hair. This is temporary, and the hair
will return to normal once the treatment is finished. CancerBACUP's booklet
Coping with hair loss contains more information.

Sensitivity of the skin to sunlight. During treatment with methotrexate,
and for several months afterwards, you will be more sensitive to the sun,
and your skin may burn more easily than normal. You can still go out in the
sun, but always wear a high protection suncream and protective clothing.
CancerBACUP has information on skin protection.

Skin changes. Methotrexate can cause a rash, which may be itchy. Your
doctor can prescribe medicine to help. Areas which have previously been
treated with radiotherapy may become red and sore. Let your doctor know if
this happens.

Changes to lung tissue. Tell your doctor if you notice any cough or
shortness of breath.

Your liver may be temporarily affected. Methotrexate may cause changes in
liver function, which return to normal when the treatment is finished. This
is unlikely to cause you any harm but your doctor will monitor this
carefully. Samples of your blood will be taken from time to time to monitor
your liver function.

Allergic reaction. You will be monitored for any signs of an allergic
reaction during the treatment. Signs include skin rashes and itching, high
temperature, shivering, redness of the face, a feeling of dizziness,
headache, shortness of breath, anxiety and a need to pass urine. Tell your
doctor or nurse if you have any of these, as medicine can be given to
reduce them.

Additional information

When methotrexate is given into the fluid around the spinal cord or into
the brain it can cause headaches, dizziness, tiredness, blurred vision and
loss of balance for a few hours. Tell your doctor if you have any of these
effects.

Some other medicines can be harmful when you are having chemotherapy.
Always tell your doctor about any other medicine you are taking.

This drug may be prescribed for conditions other than cancer. The drug
dosage will then usually be lower and these effects will probably not
happen.

A drug called folinic acid may be given 24 hours after starting
methotrexate treatment to reduce the effects. While you have a drip in, the
folinic acid can be given intravenously, otherwise it is given as tablets.
It is very important that the folinic acid is taken on time and that all
the tablets are taken as directed by your doctor. Folinic acid is often
called a 'rescue' when it is given after methotrexate treatment.

Fertility. Your ability to conceive or father a child may be affected by
taking this drug. Discuss fertility with your doctor before starting
treatment.

Contraception. It is not advisable to become pregnant or father a child
while taking methotrexate as it may harm the developing foetus.

S w e F l o

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Apr 15, 2002, 8:45:02 AM4/15/02
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Hello Jennie;

I am 28 years old and have had Lupus and Chron's since 1987, so Methotrexate
was a good choice for me (had tried about everything else...). Methotrexate
is an immunesuppressant and is also used for certain cancers (in MUCH higher
doses!)

I have been on it for 4 years and have not experienced ANY side effects
(i.e. hair loss, nausea, etc.). My dose have been 21.5 mg once a week. I
also take 1 MG Folic Acid along with it, this is to protect the liver. The
main thing with Metho is that it is metabolized in the liver and you have to
be monitored regularly with blood tests. The Folic Acid will help the liver
and it counteracts some of the side effects.

You should stay away from all alcohol and also be careful with what
medications you combine Metho with, especially certain antibiotics you might
be prescribed to take for infections etc. I had a urinary tract infection
one weekend and had to go to an emergency clinic to get antibiotics. They
accidentally prescribed an antibiotic that does not go well with Metho, and
my regular doctor almost flipped out after he found out! He said it could
have caused a lot of damage, but I was lucky.

I am right now working on coming off the Metho since my husband and I are
planning to conceive later this year. I am down to 7.5 mg now and doing
great. The Metho have to be completely out of your body for at least 3
months before it is safe to try for a baby. My main problem has always been
joint pain, and Metho does wonders for that! My Chron's has been doing
really well on it as well! I hope this was somewhat helpful.

Take care! Katrin.

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