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Medical Forum / Diseases and Disorders / Arthritis / January 2005

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2nd RD visit

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Benjamin M. Magno - 06 Jan 2005 18:31 GMT
Argh. The RD still has no idea what I have, but I've been switched from
indomethacin to Methotrexate and prednisone. From what I've been
reading, there's some hope finally. How soon should I anticipate side
effects? I know they can be nasty, though not always. I think it was
one of the drugs my mother was on when she had chemotherapy.

I'm keeping a day-to-day diary, as, other than my "condition", I'm
healthy. No allergies, all blood work is a-ok, I think I'd be a good
model of the average person on MTX.

As of today, I hurt. Everywhere that can, does. It's not enough to
really be incapacitating, it feels like I ran a marathon - all my
musles really hurt.

Anyone have any advice? I'm drinking a lot of extra water, cutting out
alcohol completely, I've always eaten healthy, but I'm watching food
more closely to make sure my meals are balanced right.

There's hope, finally. For the first time in 11 years, I can look
forward to getting better.
Janet R - 06 Jan 2005 19:47 GMT
I was put on MTX the first week of Nov 04.  So far the only bad
effects I have had was when I took the pills.  I have stomach issues
due to years of Rx...so I switched to injectible and that fixed the
stomach problems.  I am almost out of my injectible, so I will have to
go back on pills till the injectible form comes in, but I would rather
put up with an upset tummy than give up MTX.  BTW...I take
12.5mg/0.5cc once a week.

The good effects:  This is the first time since I was 12 years old
that I have had any energy!  I rarely need a nap anymore and my
tendonitis is almost gone.  I used to limp due to tendonitis in my
legs and feet...now only when I am over-tired does it raise its ugly
head.  I have found when you have more energy you are better able to
deal with chronic pain.

I have been on Pred off an on for years.  I'm currently on 7.5mg.
Pred does help my energy level and calms all my joint inflammation.
On any dose...Pred can mask symptoms of infection...be aware of this.

At higher doses (15 -25mg) I have multiple side effects...unsatiable
appetite, moon face, weight gain, acne, facial hair growth (I'm a
girl, so it sucks).  Anything higher than that and I bounce off the
walls and I exhibit mania-like behavior.  My cholesterol soars when on
pred as does my blood glucose level.  I try my best to just stay off
of it, unless its my last option.

Its all a balancing act.  I'm staying on MTX as long as it works and
my liver looks great right now.  I'm weaning off the pred by spring.
I originally went on it to compensate for my Bextra being pulled....

I don't want to scare you, but just be mindful of side effects and
call the RD office anytime you are concerned.  The nurse should be
able to help you most of the time.

Janet R

| Argh. The RD still has no idea what I have, but I've been switched from
| indomethacin to Methotrexate and prednisone. From what I've been
[quoted text clipped - 16 lines]
| There's hope, finally. For the first time in 11 years, I can look
| forward to getting better.
Benjamin M. Magno - 06 Jan 2005 21:54 GMT
Thank you! It makes sense that the Pred would mask infections, but that
didn't register with me until you mentioned it. Good to know,
especially with MTX in the mix.

I feel icky - actually nothing to do with joints, but very flu-like. Is
this common after a first dose?
tinlizzie - 06 Jan 2005 22:40 GMT
Are you taking Folic acid with it?
Lorrie F
Benjamin M. Magno wrote in message
<1105048450.103047.191350@f14g2000cwb.googlegroups.com>...
>Thank you! It makes sense that the Pred would mask infections, but that
>didn't register with me until you mentioned it. Good to know,
>especially with MTX in the mix.
>
>I feel icky - actually nothing to do with joints, but very flu-like. Is
>this common after a first dose?
Jo Firey - 07 Jan 2005 01:18 GMT
> Thank you! It makes sense that the Pred would mask infections, but that
> didn't register with me until you mentioned it. Good to know,
> especially with MTX in the mix.
>
> I feel icky - actually nothing to do with joints, but very flu-like. Is
> this common after a first dose?

Yes.  And the first line of defense is go drink a glass of water.  Really.

Jo
Benjamin M. Magno - 07 Jan 2005 01:46 GMT
I'm pounding the water to me to help keep things going through my
system at a good rate.

I'm taking 15mg/once a week right now.
delcorso - 07 Jan 2005 01:25 GMT
Yes, it's common to feel icky, especially after the first couple of
doses of mtx.  It's also common to feel nauseous....not enough to
throw up, but enough to give you that butterflies in the stomach
feeling.
I felt like that for almost the entire week after my first dose of
mtx.  The 2nd week is was better and then gradually lessened as each
week/dose passed.  Although every week the entire time I was on mtx, I
felt tired and drugged the next morning and most of that day after.
Sometimes people would tell me that I looked like I had a
headache....beady eyes and a tired look.
I found that if I drank a lot of water the day of my dose....before I
took it.....and then the whole next day....I did better overall.  I
could tell if I hadn't had enough water.

How much mtx are you taking?
Carol
> Thank you! It makes sense that the Pred would mask infections, but that
> didn't register with me until you mentioned it. Good to know,
> especially with MTX in the mix.
>
> I feel icky - actually nothing to do with joints, but very flu-like. Is
> this common after a first dose?
Janet R - 07 Jan 2005 02:18 GMT
Actually now that you mention it...I did stay in bed that first
day...but that didn't occur with any subsequent doses.

Janet R

| Thank you! It makes sense that the Pred would mask infections, but that
| didn't register with me until you mentioned it. Good to know,
| especially with MTX in the mix.
|
| I feel icky - actually nothing to do with joints, but very flu-like. Is
| this common after a first dose?
Kelly - 07 Jan 2005 02:53 GMT
Benjamin,
There are so many different kinds of arthritis that it sometimes takes a bit
to diagnose - some like myself still don't quite have the right name after 9
years of this garbage.  That said it sounds like the rd is leaning towards
one of the inflammatory arthritis's and is acting on that - thank goodness.
The methotrexate is started at a low dose and might take a bit to get it to
a level where it will work.  That is why the prednisone - to give you a bit
of a break and bring the arthritis inflammation down.  Makre sure you take
the right amount of calcium, vitamin d and folic acid.  The methotrexate has
an excellent long term track record for a lot of people and is often a basis
for combination therapy.  Some people have an excellent response to mtx -
some don't.  Please make sure you do all your lab tests on time - they are
really important on all these meds. You might like to also take the mtx on a
Friday night for example if you have Saturday off - that way if you get the
fatique lousy feeling you get it during the night and before a day off work.
You will figure out what is best for you.

Hang in there and stick around.  Lots of people will tell you about mtx - it
is not a drug I tolerated (very few are). It is a well studied one though.

Kelly

> Argh. The RD still has no idea what I have, but I've been switched from
> indomethacin to Methotrexate and prednisone. From what I've been
[quoted text clipped - 16 lines]
> There's hope, finally. For the first time in 11 years, I can look
> forward to getting better.
d'huit - 07 Jan 2005 04:26 GMT
i knew the rest of the gang would fill you in on what you needed to know.
sooo, i'll just offer a ((((ben)))) and say, hang in there guy.

kate

> Argh. The RD still has no idea what I have, but I've been switched from
> indomethacin to Methotrexate and prednisone. From what I've been
[quoted text clipped - 16 lines]
> There's hope, finally. For the first time in 11 years, I can look
> forward to getting better.
Nann Bell - 07 Jan 2005 13:17 GMT
I started mtx more slowly than you, working my way up from 7.5 mg.  For me, I
had to get to 15mg and be at that dose for about a month before I felt it
kicking in.  Boy was it a relief to have it start working!

Luckily, at the doses we take for arthritis, the side effects of mtx aren't
nearly as bad as they are at the chemo doses.  The only trouble I've had from
it was major fatigue for about 24 hours after taking it.  I'd sleep up to 20
of those hours. I had to schedule my doses for the time of day where the
extra rest would do the least damage to my regular sleeping pattern.  That
eased up after several weeks at a steady dose though, and now I'm only a bit
tireder for that time period.  

Oh, and you're doing the right thing drinking lots of water!  That usually
wasn't a concern for me as I normally drink lots of water.  But one time I
was very busy on my mtx day and didn't drink much.  Developed a hunker of a
headache.  When I was getting a hurried dinner before leaving for church (it
happened to be Ash Wednesday and I was going to the evening service) I
remembered all I'd read ehre about water and mtx.  Downed a BIG glass of
water before leaving.  That headache eased up,then disappeared over the next
hour.  It was such a dramatic improvement!  Made a real impression on me.  
Haven't forgotten water on mtx day since!

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

Benjamin M. Magno - 08 Jan 2005 15:23 GMT
I am having such a massive flare-up, I had to take yesterday off from
work, as I couldn't walk. I can today, but barely. I can't wait for
these meds to kick in. My boss saw me hobble in to work today, and all
of a sudden, they aren't giving me such a hard time.

This is about as bad a flare up as I've ever had, but thinking there
may be an end in sight after 11 years(I'm only 29 now!) makes it much
more bearable.

The good news is, my girlfriend is very patient with me, and
sympathetic, so things at home are as good as they can get. My last
girlfriend was very impatient. She hated having to slow down for me if
I was having a flare up, and would tell me to hurry up.

You folks are great. I'm glad there are people with experience going
through what I'm going through, that I can ask questions of. Thank you
all again!
Janet R - 08 Jan 2005 16:30 GMT
Hi again Ben,
I know how bad those flares can get.  Sleep as long as you can.  That
is what I do when a flare comes on like yours has done.  Maybe calling
your RD and see if you can boost your Pred for a week and taper back
down to your normal dose?  That usually works with me...pred + sleep.

You have a great girlfriend there...give her lots of affection!  My
hubby is the same way.  I try my best to be extra special to him when
I am feeling well enough to do so.  When you are too tired to go out
and have a "date"... I have found movies are a good option because you
pretty much just sit there (and you can occasionally catch a nap and
they dont notice till you snore).  Just a thought.

Have you been tested for Lupus?  Just wondering.

Janet R

|I am having such a massive flare-up, I had to take yesterday off from
| work, as I couldn't walk. I can today, but barely. I can't wait for
[quoted text clipped - 13 lines]
| through what I'm going through, that I can ask questions of. Thank you
| all again!
Nann Bell - 08 Jan 2005 23:20 GMT
Hang in there, there are better days ahead.  I feel for you.  I was first
walloped by my arthritis when I was 28.  I couldn't conceive of living
another 50 or 60 years in that kind of pain.  I had times when I'd get in my
car after work and burst into tears for 5-10 minutes before I could stand to
hold on to the steering wheel to drive the 1.25 miles home.  I considered
suicide briefly just because I was so desperate to get the pain under control
enough to get some real sleep.  It got better though, as it will for you,
especially with the new medications that have come out recently.  And I met
my husband who has been incredibly understanding and caring through it all.  
The 16 years I've known him and my stepdaughter have truly been worth staying
alive for!

Signature

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

 
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