Re: PA-Methotrexate

[Guest guest]

Hello and welcome.

I feel compelled to answer your questions about methotrexate and my

experience with it. You sound at your wits end. Well, so was I. My dx came

about 4

years ago, and was taking prednisone 30mg a day, and more than happy to have

it. It kept the pain at a tolerable level til I could see a rheumatologist.

He left me on the pred and added mtx. It scared the hell (oops) out of me,

too. But I was ready for anything that would give me back some mobility and

take the pain away. Plus, I knew that since this was an autoimmune disease,

it was not going to go away. It has to be delt with and you cannot just

ignore it away. The mtx is not as bad to take as the prednisone. Mtx makes me

nauseous most of the time. I take it at bedtime with some yogurt or crackers.

Usually on Mon and Tues nights. This has been my regimine for some time and

it still works for me. I have only one pinkie finger that is crooked and

have only lost partial movement of my right wrist. It could be so much worse.

Please listen to your Dr. Even if the insurance company has a hand in his

decision, what can you do about it? We tied our hands many years ago when we

allowed big business to take over our health care and they are not about to

let go of all that money and power because the cheap drugs make us sick.

Sorry. I am running off at the mouth again.

By the way, you are the same age of my oldest daughter and my youngest son

is also . Just a little trivia.

Please listen to Kathy F's advice, she is a very wise lady. She has had

this disease a long time and her knowledge is extensive. Good luck with your

decision.

Janet in Ca

[Guest guest]

, I hope that you are able to get medical coverage so that you

can take the medications that will help you. Kathy is right of course

about the value of these medications. I was like you a few months

ago...I remember how difficult going to the store was and I was not

able to work. I started Enbrel injections and within 2 months there

seemed to be no sign of the PA pain and fagigue. Now I'm

working...selling cars. Don't give up. Do what you can to get these

meds. I got on Medicaid and had no trouble getting the Enbrel. I wish

you all the best. -Betz

[Guest guest]

My original rheumatologist who diagnosed me with PA

about 4-5 years ago started me on Methotrexate alone

right away. At that time, I didn't even KNOW I had

psoriasis; all I knew was I couldn't breathe in deeply

and felt short of breath with chest pain all the time,

and that my feet, lumbosacral spine, and both hips

were just killing me. The rheumy did a head to toe

full exam along with X-Rays, MRI's, and bloodwork,

after which he stated that I had limited chest wall

expansion (<4 cm difference between inspiration and

expiration) and costochondritis causing the chest pain

and shortness of breath, spondyloarthritis causing the

LS pain, severe erosive arthritis in the right hip

causing the hip pain, and mild erosive arthritis in

both feet. I asked him why, and he stated it was

probably psoriatic arthritis. I said I had no rashes,

and he informed me that what I had thought was simply

bad dandruff was scalp psoriasis, and that the

Methotrexate was the first-line drug of choice. He

said it was a disease modifying agent that would not

cure the damage already done to my hip and feet, but

would at least slow down the progress of and hopefully

stop completely any further inflammation and damage to

the spine and costochondral area and elsewhere.

He was right. I took Methotrexate by itself, a dose of

25 mg weekly orally, for nearly 3.5 years with SUCH

relief (I went from being almost unable to walk except

with the assist of two canes and being off work for

nearly a year on short-term medical disability from my

employer to being able to walk-albeit with a bad limp

due to the hip damage-and to return to work

full-time-albeit to an office nurse position which was

and is far less physically demanding than my previous

job as a hospital nurse) and MINIMAL side effects. I

had no hair loss, my liver profile and CBC were always

fine, no increased infections. I had a bad case of

mouth sores once when I first started it, but that was

because of the interaction between the NSAID I was on

at the time with the Methotrexate (Diclofenac

potentiates the effect of Methotrexate, I was told)

and once I switched over to Naproxen with the

Methotrexate, the mouth sores cleared right up.

Initially, at 25 mg weekly I was slightly queasy the

day I took it....but splitting the dose (half at night

on Saturdays and half at night on Sundays....as long

as you get the total amount in within a 24 hour period

you're allowed to do that, my rheumy said) and taking

the meds at night so I would sleep through the

queasiness, as well as making sure I took plenty of

peppermint tea and ginger (ginger snaps, ginger

capsules, etc.) cleared that right up.

Unfortunately for me. about a year and a half ago my

feet began to deteriorate again and I developed nail

bed changes and sausage toes, and I am now showing

some arthritic changes in my right hand and wrist, so

my current rheumatologist (we had moved in the

meantime) added Enbrel to my Methotrexate. Currently I

take 50 mg of Enbrel once a week and have been weaned

down to 15 mg of Methotrexate weekly; I had initially

thought the Enbrel wasn't doing much but I tell you,

when I had to be off those meds for almost two months

for my recent hip replacement, I could FEEL the

difference! My back was just KILLING me by the time I

was able to restart the meds, and so were my feet and

hands. Plus i was breaking out in little patches of

psoriasis all over, NOT just on my scalp. I've been

back on them about 2 weeks now, and my back and hands

and the psoriasis are SIGNIFICANTLY better already,

although my feet still throb quite a bit.

I have noticed a few more episodes of infections (a

case of the flu despite getting my flu shot, a couple

of urinary tract infections, a cellulitis after a

spider bite, and a sinus and ear infection with an

associated asthma flare) during the year and a half

I've been on Enbrel, but they all cleared up right

away with stopping the drug for 2 weeks while taking

antibiotics to clear things up. I figure it's a small

price to pay to ensure my back, hands, and feet don't

deteriorate rapidly and hurt again. Again, my CBC's

and liver and renal function tests have remained

completely normal throughout. I plan to stay on the

Enbrel with the Methotrexate as long as possible, in

order to function at work and at home; the rheumy has

said if the arthritis progresses much more, he may

need to start Humira or Remicade instead, and since

those are both based on mouse-antigens and I am

severely allergic to rodents, I hope that never

happens! I also never want to be placed on long-term

steroids, so I'm sticking with the Enbrel and

Methotrexate on hopes I will avoid that; I was

steroid-dependent for several months (prior to my

arthritis diagnosis) due to uncontrolled asthma, and

suffered horrible side effects (water retention, mood

swings, Cushings, hypertension, tachycardia, you name

it) and don't want to experience those again.

Anyway, bottom line, different people react

differently to different drugs, but I think for me,

Methotrexate (and later on, Enbrel) was a blessing.

Hope this helped.

Wanda

__________________________________________________

[Guest guest]

Welcome to the group Hello,

My Name Is .

Love and Peace Always

Shaun and Barb

[Guest guest]

(re: editors note)

I think you really missed the point of my post. I was only officially

diagnosed with PA 2 weeks ago. It took me almost a year to fight my way

through the county medical sysytem to get a referal to a

rheumatologist. Then after all of my efforts I am given a medication

that " I am afraid to take " I have fear! I have questions about whether

or not this is the best medicine for me or the cheapest. I used the

term nasty simply because to me it seems so, due to my fear of the list

of side efects. I never ment to offend. I feel your reply to my post

was very negative and it is not at all what I expected from

this " support forum " and especially from an editor whose job it is to

set the tone for future discussion. At least I know where I stand in

this, alone. How unusual.

[Editor's Note: If the tone seemed harsh it is because I don't understand how

one can be in self-described agony for 3 years, be completely bedridden and

placed on disability without getting some sort of diagnosis that would have

included taking strong medications as treatment - even if it was the wrong

diagnosis. What were you diagnosed with that led to your being placed on

disability? What medications were you on after being diagnosed incorrectly?

Why is it thought that original diagnosis was wrong and the PA diagnosis is

right? I apologize if you took offense at the tone, but you described yourself

as extremely far gone for you not to have already been diagnosed with SOMETHING

that would have called for you to be on strong medications already. I therefore

could not understand why MTX would scare you when your other medications

apparently did not.

MTX is one of the oldest and most successful medications used to treat PA. It

has been used for over 20 years and for some people it is a miracle drug. Many

insurance companies require you to try and fail on MTX before they will approve

you for stronger drugs. I don't know if that is also true for Medicaid. Yes,

MTX has side effects in SOME people, but many people experience little or mild

side effects only while reaping considerable benefit. Kathy F.]

[Guest guest]

Hi .

I couldn't agree more with Kathy F.!

I am also a 45yr old male.

Prior to taking the " nasty MTX " , I had multiple sausage fingers & toes,

was in constant pain, slept little and was barely able to walk.

After 4.5+ years of MTX, I am 98% normal. and experience ZERO side

effects.

So while we are all different, I'll take NASTY over my previous life

every single day.

Stay Well,

[Guest guest]

Hi ,

My name is Jenn and I'm 32 *soon to be 33*. I was diagnosed when I

was 20, although like many here I believe it started much earlier.

I have been on both the pill and injectable forms of MTX. The only

side-effects I have noted are slight nausea (which is lessened in the

injectable form - mainly with pills) and on occasion it seemed I

sunburned quicker - but I'm very fair-skinned - so it may or may not

have been related to the MTX.

I've been off and on MTX for around, I'd guess, eight to 10 years.

Yes, there is a hierarchy unfortunately and it's determined by the

insurance companies. Rheumies try one drug and if they can show it

isn't working they can move on to something else, but be aware that

pretty much all the drugs have POTENTIAL side-effects. Anything that

shows up in the trials they have to report. For example, I'm

currently on a combo of MTX pills and Enbrel (a biologic that is

often used if MTX fails alone). Enbrel has a litany of POSSIBLE

effects. Most here would attest that each med and what it brings

forth in a person's life is different in almost each and every case.

Should you decide to take the MTX, which is fairly economical

compared to the biologics, it is imperative that you have monthly

blood tests to monitor your liver function. Make sure your doc

suggests this - if he doesn't ask him why he isn't.

My doc has me get an SGOT, Creatine and WBC and platelet count each

month. This allows him to monitor your condition and stop the drug

immediately if it is causing any type of damage.

These drug decisions are never easy for any of us, trust me.

Good luck with your decision and may you have relatively pain-free

days in your future.

Jenn in Arkansas

[Guest guest]

I think that if you are hurting enough you will try anything. I feel

much better on the MTX. I could not put on shoes until after I started

MTX. I'm 28 and not being able to do " normal " things really gets you

down sometimes. MTX has and Humira has changed that.

I am a bit concerned that some of the posts on this topic are

negative and " scary " . It is not fair to say the drug is dangerous and

will harm you. I would like to stress the fact that just because side

effects are listed on a medication, does not mean you will get sick. I

have been taking MTX for almost a year and have not had one side

effect. For people who are using this post for information and are in

the need of a more aggressive medication, MTX is usually what is tried

first.

Naturally, it is ones own decision to take a new drug especially one

of the more aggresive types. I just thought I would share my opinion.

Thanks.

[Guest guest]

Jaye - I've been on MTX for 3 weeks and I really miss my wine!!! I

was accustomed to having 2 or 3 glasses every day while preparing and

eating my dinner. Man, I miss that. I'm one whose insurance insists

on trying MTX before anything else. Plus, if it works for me it will

still be worth missing my " fruit of the vine " in exchange for having a

near-normal life otherwise. But I know what you mean....

sherry z

>

> I can certainly understand not wanting to take MTX. I

> don't. I enjoy my wine with dinner, beer while

> sailing, etc. Not going to give that up if I don't

> absolutely have to.

[Guest guest]

I agree with ! I have been on MTX for 10 years now- I am 27 and

have had very few side effects. My only complaint has been some

nausea if the beginning stages of taking it. It allowed me to walk

again and wear shoes! That is priceless! I know it's hard to take the

plunge into these medications. I'm now considering Enbrel or

Remicade and I'm quite nervous, but if there's any chance of feeling

better and enjoying your life more than you shuld really considerate

it!!!

Good Luck

-- In , " " <mtymry@...> wrote:

>

> I think that if you are hurting enough you will try anything. I

feel

> much better on the MTX. I could not put on shoes until after I

started

> MTX. I'm 28 and not being able to do " normal " things really gets

you

> down sometimes. MTX has and Humira has changed that.

>

> I am a bit concerned that some of the posts on this topic are

> negative and " scary " . It is not fair to say the drug is dangerous

and

> will harm you. I would like to stress the fact that just because

side

> effects are listed on a medication, does not mean you will get

sick. I

> have been taking MTX for almost a year and have not had one side

> effect. For people who are using this post for information and are

in

> the need of a more aggressive medication, MTX is usually what is

tried

> first.

> Naturally, it is ones own decision to take a new drug especially

one

> of the more aggresive types. I just thought I would share my

opinion.

> Thanks.

>

[Guest guest]

> [Editor's Note: I agree, . We must take charge of our own

destinies. I was misdiagnosed from 1965 (when I was 16) until 2002.

Kathy F.]

Unfortunately many of us were misdiagnosed. I went for years until the

right person diagnosed me. Unfortunely many of the damage is already

done to some of our joints. I think I just diagnose a friends son. He

is 26 and going to all kinds of doctors with pain and swollen joints.

When she was telling me about him it just so happened that she said

something about his psoriasis. BING!!!! I told her to see a rheumy

and that it sounds like what I have. He is going next week. I am

curious to know what he finds out. It's just a shame that many of us

have to go unanswered for so long.

Janet (ny)

[Guest guest]

Hi ,

I hope you are still reading.

You have taken offense to the editor's note and may have also taken

offense to some of our replies. I apolgize for my own if you taken

offense. I meant only to give you my experience.

But, I my disagree with your statement that you are in this alone.

You can certainly make that choice, but please realize that if that is

the case, you are seperating yourself. This has always been a

wonderfully supportive and knowledgeable group. We have all had many

different experiences with this disease and we can all learn from one

another. From treatments to those annoying twinges or embarrassing

itches to relating to the folks w/o PA to verbalizing or yelling at the

Dr. that doesn't understand. It's all here and more.

You'll find that with this disease the only thing that is constant is

that it affects eveyone differently. That goes for treatments too.

I hope you stay with us and not " alone " . We can be here for you if you

let us.

Stay Well,

[Guest guest]

>

> Hello, My Name Is .

>

> I am 45 y.o. male. I have just recently been diagnosed with PA

> although I have had psoriasis for years and progressively worse PA

> symptoms for the last 3 years. I have ran the gamut from being bed

> ridden in pain to feeling almost normal for months only to succumb

> again. Recently I have been on the low end of functionality. I

can't

> really clean my house or do my laundry. When I go to the grocery

> store I have to buy little things that I know I can carry in myself

> and without making more than one trip because a second trip is too

> much to contemplate.

> For a long time I tried to work and deal with the pain but my DR.

> put me on disability and that was a great relief because trying to

> work and manage all the pain was making me very depressed. The

> depression had lifted , however, I am now living in a state of

limbo

> because after having filed for SSDI almost a year ago I have yet to

> have a final determination. My state disability is going to run out

> soon so, I am feeling depressed again, not knowing if I will be

> homeless or forced to go back to the ways things were a year ago,

> trying to hold down a job and deal with all this pain. I don't see

> how I can.

> Now, my Dr. want' s me to start taking Methotrexate. I am not one

> that tolerates medication well. So I am very scared of this

> medication with it's many side effects. What I am very curious to

> know and what prompted me to write here is that I am having

> difficulty trying to determine if this medication is a first choice

> or a choice that is easily covered by insurance. When my Dr. first

> mentioned medication he spoke of Enbrel and then he voiced some

> concern over whether or not it would be covered because I

have " CMS "

> (County Medical).

> I tried to get an answer but have not been able to. My question is,

> am I being treated with this nasty medication because it's the best

> thing to fight my disease or because it's what is covered. Is

there a

> hierarchy in PA medications? Such as you try " this " first and then

if

> that fails you go to " this " and then " that " etc..

> Or is it determined at the Dr.'s discretion and experience. I'm

still

> trying to figure out what course is the best for me to take in

> dealing with this. Thanks for reading.

>

> [Editors' Note: Methotrexate (MTX) and Enbrel are excellent

medications that many of us take to treat our disease. You have

seen what NOT taking medication has done to you - it has left you

unable to work, unable to take care of your household and almost

unable to care for yourself. How much worse do you have to feel

before you will stop viewing these medications as " nasty " ? It is

the disease that is nasty. MTX, Enbrel and some other medications

cannot reverse the permanent, destructive, damage that has been done

by your refusal to treat the disease heretofore, however, they CAN

help to slow the progression of the disease. For 95% of the people

who use these meds, they are not " nasty " at all - but the disease

is. Your best course of action is to follow your doctor's advice on

this (you should have begun these medications a long time ago). Good

luck. Please let us know how you are doing and feel free to ask as

many questions as you want. Kathy F.]

>

Until they come up with something better methotrexate is the best

option you will be glad you have it.

[Guest guest]

In a message dated 08/08/2006 20:03:56 GMT Daylight Time, rstone115@...

writes:

I am 45 y.o. male. I have just recently been diagnosed with PA

although I have had psoriasis for years and progressively worse PA

symptoms for the last 3 years.

Hi ,

Welcome to the group. I see Kathy answered your questions perfectly so now it

is just a case of you making a decision on whether you will give the MTX a

try. If you do I hope it works wonders for you.

Hopefully your SSDI will come through soon.

Reading on...........

Ooops Just been reading your follow up mail. I'm sorry you didn't like

Kathy's reply to you but I can assure you that she only has your interests at

heart.

She is just trying to put your worries about the disease versus the drugs

(MTX in this case) into perspective. I have already said in this forum recently

that I don't like taking MTX but I do take it as I, like everyone else

including you should you decide to take it, have regular blood checks to ensure

that

there are no problems.

I am in the UK and over here we do have to fail on all the other drugs before

they will approve you for one of the biologics. So I was on other stuff for

around fourteen years before they even put me on to MTX! lol That is the case

with a lot of us.

, MTX has improved the lives of many of the people in this group. I

take it you don't want to continue to deteriorate so I reckon your choices are,

either take the MTX and see how it goes or push it to try and get yourself on

to one of the biologics. The thing is though, most Rheumatologists would

probably advice that you take the MTX on top of the biologic as they feel they

work

better together as opposed to them on their own.

Whatever you decide, good luck.

Keep us up to date on how things are going for you if you can.

Take care,

[Guest guest]

I know this is way out of date, but I had an idea when I went back

and read this in my unopened emails...

I used to trade a friend of mine baby-sitting for her kids and she

cleaned for me and drove me to and from different places... just a

thought...

michael's critter corale

>

> can't really clean my house or do my laundry. When I go to the

grocery store I have to buy little things that I know I can carry in

myself and without making more than one trip because a second trip is

too much to contemplate.

>

> Check with your local nurses aid and helpers place... They will

usually cover cost of someone coming to your house, doing laundry,

shopping, cleaning? They don't always do a great job on cleaning,

but they do it... You either pay only $2o.oo or lower to have them

help, and sometimes it is free depending on what your medicaid with

cover... You give them the list, they do the major big shopping or

less, and you wont end up doing it... Plus, they will in some of the

time clean for you, showers, furniture, laundry, dishes,

vacuuming... Check into it... They can span it out two times a month

ect, what ever your needs are... Just a thought...

>

> Love and Peace Always

> Shaun and Barb

>

>

[Guest guest]

Welcome , and all that I missed while in floodlands lol... I missed being

on here everyday with all of you...

Love and Peace Always

Shaun and Barb