Re: I just found out I have psoriatic arthritis

[Guest guest]

Robin,

Sorry about your diagnosis. I understand your feelings about the

methotrexate. I have had psoriatic arthritis for several years but have

never been treated for it by anything except NSAIDS. I flared with it

really bad last year when my dad was diagnosed with cancer and a

rheumatologist took one look at me and prescribed methotrexate. I

researched it and I'm so afraid of it that I am refusing to take it until I

am sure there are no other options. I have been reading all of the posts

that the veterans to this site have been making and have learned that there

are other options. So I'm awaiting an appointment with a new

rheumatologist. I know that many people on this site are positive about

methotrexate and perhaps they are the people you need to take advice from.

But, I've heard so many people talk about it making them nauseated for days

that I decided that with four young children, two of which I am

homeschooling, that nausea is not a side effect I can deal with. I was sick

with all four pregnancies and it will knock me out faster than any pain I've

had from PA. You may want to research the archives to this list. There

were a lot of posts about antibiotic therapy. I'm going to ask my doctor

about that. Also, I'm really encouraged about Enbrel. I understand though

that it's a hard drug to get because of shortages or something. I haven't

quite figured that one out. Perhaps you'll find something in the archives.

I wish you the best.

Cheryl

[Moderator's note: Remicade is a good alternative to Enbrel because it is

similar in action and widely available. Ron]

[ ] I just found out I have psoriatic arthritis

> I just found out today I have psoriatic arthritis. I am being

> treated with Methotrexate. Does anyone take this? It concerns me a

> great deal due to all the side effects. My rheumatologist also has

> me taking folic acid the day after my dose of Methotrexate. I would

> love to hear from people who have this as I am very concerned.

>

>

[Guest guest]

Robin,

I'm sorry to hear you have been diagnosed with PA, however, a good diagnosis

is the first step on the road to getting better. I put off going on MTX for

ages because I had the same fears you did. The word " chemo " is intimidating

but it needn't be. All drugs have potential side effects, but in most cases,

very few people experience them. I have now been on MTX for about 10 weeks.

I started on 10 mgs a week and was increased to 15 mgs two weeks ago. I have

experienced no side effects to date (other than fatigue but I feel so much

better, it's worth it), my blood work is coming back fine from the lab and

the medicine has made an appreciable difference by reducing swelling and

easing stiffness. It is much easier for me to get around and I am living

with less pain. You may be one of the great majority of people for whom MTX

does what it is intended to do without causing any other problems. There is

no point being miserable if there is something out there can help. There are

other drugs out there such as remicade and enbrel, however, in many cases,

your health insurer will not pay for those unless you have had no luck with

MTX and a conservative rheumatologist may not even proscribe them until you

have tried methotrexate.

Whatever you choose to do, best of luck with it and I hope you are feeling

better soon.

Kathy

> I just found out today I have psoriatic arthritis. I am being

> treated with Methotrexate. Does anyone take this? It concerns me a

> great deal due to all the side effects. My rheumatologist also has

> me taking folic acid the day after my dose of Methotrexate. I would

> love to hear from people who have this as I am very concerned.

>

>

>

[Guest guest]

Hi, Robin,

I, too, was recently diagnosed with PA, but have so

far avoided Methotrexate. I have a prescription for

it sitting at home, but my hope is that I will not

have to resort to it for a very long time.

For me, the psychological aspects of the disease are

the worst. Knowing that I can no longer be as active

as I would like and every life stress can trigger a

flare up drives me insane.

After having said all that, Robin, I've learned that

if I really listen to my body and take my clues from

it, life runs much smoother. Know, also, that you

have many people on this list who understand what you

are going through and will allow you to vent whenever

you want.

[Guest guest]

In a message dated 9/17/02 10:35:57 AM Central Daylight Time, web63@...

writes:

> You should take the Folic Acid everyday except the day

> you take the MTX.

>

I've read up on this one and it is good advice but I can't find a reason why

one shouldnt take the folic acid the same day as the MTX can someone

clarify this one for me? Orin

[Guest guest]

Sam,

Do not place self-imposed limits on your activities. Exercise, eat sensibly and

have fun. PA is not the end.

I play tennis, ride my bicycle, and take long walks as often as possible.

I find that the more inactive I am the worse I feel.

Joe in Arizona

Re: [ ] I just found out I have psoriatic arthritis

Hi, Robin,

I, too, was recently diagnosed with PA, but have so

far avoided Methotrexate. I have a prescription for

it sitting at home, but my hope is that I will not

have to resort to it for a very long time.

For me, the psychological aspects of the disease are

the worst. Knowing that I can no longer be as active

as I would like and every life stress can trigger a

flare up drives me insane.

After having said all that, Robin, I've learned that

if I really listen to my body and take my clues from

it, life runs much smoother. Know, also, that you

have many people on this list who understand what you

are going through and will allow you to vent whenever

you want.

[Guest guest]

Thank you Cheryl....I am like you ... scared of that drug.

[ ] I just found out I have psoriatic arthritis

> I just found out today I have psoriatic arthritis. I am being

> treated with Methotrexate. Does anyone take this? It concerns me a

> great deal due to all the side effects. My rheumatologist also has

> me taking folic acid the day after my dose of Methotrexate. I would

> love to hear from people who have this as I am very concerned.

>

>

[Guest guest]

Thank you Kathy...and thanks for the encouraging words on the meds. I have been

so afraid of it.

Re: [ ] I just found out I have psoriatic arthritis

Robin,

I'm sorry to hear you have been diagnosed with PA, however, a good diagnosis

is the first step on the road to getting better. I put off going on MTX for

ages because I had the same fears you did. The word " chemo " is intimidating

but it needn't be. All drugs have potential side effects, but in most cases,

very few people experience them. I have now been on MTX for about 10 weeks.

I started on 10 mgs a week and was increased to 15 mgs two weeks ago. I have

experienced no side effects to date (other than fatigue but I feel so much

better, it's worth it), my blood work is coming back fine from the lab and

the medicine has made an appreciable difference by reducing swelling and

easing stiffness. It is much easier for me to get around and I am living

with less pain. You may be one of the great majority of people for whom MTX

does what it is intended to do without causing any other problems. There is

no point being miserable if there is something out there can help. There are

other drugs out there such as remicade and enbrel, however, in many cases,

your health insurer will not pay for those unless you have had no luck with

MTX and a conservative rheumatologist may not even proscribe them until you

have tried methotrexate.

Whatever you choose to do, best of luck with it and I hope you are feeling

better soon.

Kathy

> I just found out today I have psoriatic arthritis. I am being

> treated with Methotrexate. Does anyone take this? It concerns me a

> great deal due to all the side effects. My rheumatologist also has

> me taking folic acid the day after my dose of Methotrexate. I would

> love to hear from people who have this as I am very concerned.

>

>

>

[Guest guest]

I asked my rhuemy about that on my last visit and he said that at one time it

was thought that it made a difference as to the effectiveness of the MTX not to

take the folic acid on the day of the MTX. He says there is no research to back

it up and I have always taken the folic acid everyday. I don't know what the

thought was.

orinok@... wrote:In a message dated 9/17/02 10:35:57 AM Central Daylight

Time, web63@...

writes:

> You should take the Folic Acid everyday except the day

> you take the MTX.

>

[Guest guest]

Hey Robin me too, I was diagnosed today and given methotrexate to

start. I'm very concerned as well about the side effects. I was

comfortable with the doctor I saw but he never said anything about

the folic acid. I read it on several different sites I searched in

ref to this condition and medication. Has anyone decided not to take

the metho at first? I'm just wondering what could be the result of

putting this type of treatment off for any time. I have pain and

stiffness in my hands right now. not much swelling surprisingly

however.

[Moderator's note: If your doctor didn't recommend taking 1 mg of folic acid

each day while on Methotrexate (MTX), you might want to consider getting a

different rheumatologist, because that would indicate to me that he/she is not

very familiar with prescribing MTX (You ARE seeing a RHEUMATOLOGIST rather than

a regular internist aren't you?). According to RxList.com, when MTX is

prescribed in higher doses for carcinoma, etc., its administration is usually

followed by " Leucovorin Rescue. " Leucovorin is one of several active, chemically

reduced derivatives of folic acid. I would guess from that, that folic acid

should not be taken on the same day as MTX because it reduces the amount of MTX

in the blood (according to http://www.rxlist.com/cgi/generic/mtx_ids.htm). When

I was on MTX however, I took folic acid every day including the day I took the

MTX and it didn't seem to have any noticeable adverse effects on the MTX therapy

- I still had hair loss, nausea, etc., but at least no mouth sores. ;-). I put

off starting MTX for several years because of fear of permanent liver damage,

and because I didn't want to have to become a teetotaler. The results of putting

off treatment for PA can be permanent irreversible joint damage, depending upon

your particular case and level of severity of the disease. It's one of the

unfortunate trade-offs we're forced to make: the possibility of liver damage vs

the possibility of permanent joint damage. Some choice, eh? Ron]

> Thank you ....I thought I was suppose to take the folic acid

all in one day after the MTX.

> Re: [ ] I just found out I have PA

>

> You should take the Folic Acid everyday except the day

> you take the MTX.

> Good Luck,

> in Atlanta, GA

>

[Guest guest]

In a message dated 09/17/2002 4:57:20 PM Eastern Daylight Time,

orinok@... writes:

> I can't find a reason why

> one shouldnt take the folic acid the same day as the MTX

I think it inhibits the absorption of the MTX

[Guest guest]

Hi Robin,

I was diagnosed with PA, and spent 5-7 months trying various NSAIDS.

All had little or no effect. I also avoided MTX. I even went to an

acupuncturist for 3 months with only small relief (mostly stress). In

May 2002, I gave in and started MTX (also 1 mg folic acid daily). I

started with 10mg weekly and remain at that dosage. I noticed a

difference in 2 weeks! Today, I am virtually pain free, my blood

tests & liver functions are all very good, and I had only 1 minor

epidode of mouth sores. (and I believe I caused that by jamming a

tooth brush into my gum causing trauma).

5 months isn't a long time, but as long as everything continues as it

has, I will stay on the MTX. Not drinking, is a small price to pay

when you can live without pain.

Good Luck!

Stay well

> I just found out today I have psoriatic arthritis. I am being

> treated with Methotrexate. Does anyone take this? It concerns me

a

> great deal due to all the side effects. My rheumatologist also has

> me taking folic acid the day after my dose of Methotrexate. I

would

> love to hear from people who have this as I am very concerned.

>

>

> [Moderator's note: Welcome to the group Robin. Yes, Methotrexate

(MTX) can have very bad effects on the liver, but many members of the

forum have taken it for many years without adverse effects, and I

myself was on it for about 8 months without any problems other than

nausea for three days after taking it - which is the reason I

discontinued it. You might want to do a search for " Methotrexate "

or " MTX " using the " Search Archive " search box on the main page at

/ because this has

been discussed extensively in the past. Regards, Ron]

[Guest guest]

Joe,

I do try to keep active - I'm actually doing gentle

workouts at the gym 2-3 times a week. This,

unfortunately, often causes me extreme pain, mostly in

my knees and so I suffer from lack of sleep. It's a

vicious circle - exercise to feel better for a short

period of time, suffer the pain, go back to exercising

to try and relieve the pain.

Riding a bike is impossible due to my knees and

walking, other than on the treadmill, is dangerous

because if I get tired or have pain, I still have to

get home. At least on the treadmill, I can stop when

I need to.

Thanks for the advice, though. I'm glad you are able

to keep active.

Sam

[Guest guest]

I have decided to put off taking the Methotrexate for a while. My doctor also

wrote me a prescription for folic acid. He said it keeps the symptoms from

being so bad.

Re: [ ] I just found out I have PA

>

> You should take the Folic Acid everyday except the day

> you take the MTX.

> Good Luck,

> in Atlanta, GA

>

[Guest guest]

MTX rescue theories and rheumatologists!!

Just to confuse the issue my first rheumatologist had me take one dose of

leucovorin 8 hours after the MTX. When I got more used to it I took it at

12 hours after. This rheumy, at a well-known teaching hospital, said that

it reduced the side effects.

My current rheumy, at another well-known teaching hospital, believes in

the 6 days of folic acid and one day of MTX. He kept me on the leucovorin

at 24 hours after MTX because I was already using it.

I don't think there is any consistent way of using MTX and folic acid. I

learned from my rheumies that the DNA poison effect* of MTX is not

important in treating arthritis. The MTX gets absorbed somewhere and it

needs to be in the blood stream for a while to get to that 'somewhere'. We

take folic acid or leucovorin to flush the MTX out and mitigate the DNA

poison effects. The 'somewhere' takes about 6 weeks to get loaded up with

MTX (or a derivative) and start having an effect on inflammation.

(*MTX was originally used in chemotherapy to poison cancer cells by

interfering with DNA production - at much larger doses than we use)

Unfortunately I have very little main effects at 25mg of MTX and

fortunately only a little extra fatigue as side effect.

---------------------------------

On Wednesday, September 18, 2002, at 12:41 AM, lilunder2002 wrote:

> Hey Robin me too, I was diagnosed today and given methotrexate to

> start. I'm very concerned as well about the side effects. I was

> comfortable with the doctor I saw but he never said anything about

> the folic acid. I read it on several different sites I searched in ....

>

> [Moderator's note: If your doctor didn't recommend taking 1 mg of folic

> acid each day while on Methotrexate (MTX), you might want to consider

> getting a different rheumatologist, because that would indicate to me

> that he/she is not very familiar with prescribing MTX (You ARE seeing a

> RHEUMATOLOGIST rather than a regular internist aren't you?). According to

> RxList.com, when MTX is prescribed in higher doses for carcinoma, etc.,

> its administration is usually followed by " Leucovorin Rescue. " Leucovorin

> is one of several active, chemically reduced derivatives of folic acid. I

> would guess from that, that folic acid should not be taken on the same

> day as MTX because it reduces the amount of MTX in the blood (according

> to http://www.rxlist.com/cgi/generic/mtx_ids.htm). When I was on MTX

> however, I took folic acid every day including the day I took the MTX and

> it didn't seem to have any noticeable adverse effects on the MTX therapy

> - I still had hair loss, nausea, etc., but at least !

> no mouth sores. ;-). I put off starting MTX for several years because of

> fear of permanent liver damage, and because I didn't want to have to

> become a teetotaler. The results of putting off treatment for PA can be

> permanent irreversible joint damage, depending upon your particular case

> and level of severity of the disease. It's one of the unfortunate

> trade-offs we're forced to make: the possibility of liver damage vs the

> possibility of permanent joint damage. Some choice, eh? Ron]

>

>

>

>> Thank you ....I thought I was suppose to take the folic acid

> all in one day after the MTX.

>> Re: [ ] I just found out I have PA

>>

>> You should take the Folic Acid everyday except the day

>> you take the MTX.

>> Good Luck,

>> in Atlanta, GA

>>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began

> to conduct extensive research which he publishes as the Psoriatic

> Arthritic Research Newsletter monthly in our emails and digest format.

> Many thanks to Jack. Back issues of the newsletter are stored on our PA

> webpage.

>

> Also remember that the list archives comprise a tremendous amount of

> information (Over two years of messages and answers).Feel free to browse

> them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

> question chances are there is a person who has been around a while who

> can help you out with an educated guess for an answer. If not we can at

> least steer you in the right direction with a good website to go to for

> the answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

In a message dated 9/18/02 3:02:31 AM Pacific Daylight Time,

lilunder@... writes:

> Hey Robin me too, I was diagnosed today and given methotrexate to

> start. I'm very concerned as well about the side effects. I was

> comfortable with the doctor I saw but he never said anything about

> the folic acid. I read it on several different sites I searched in

> ref to this condition and medication. Has anyone decided not to take

> the metho at first? I'm just wondering what could be the result of

> putting this type of treatment off for any time. I have pain and

> stiffness in my hands right now. not much swelling surprisingly, however.

>

Lilunden, The result of putting off methotrexate is continued psoriasis and

sometimes irreparable joint damage. I have been on MTX for almost 2-1/2

years. I am grateful for it. Before MTX I had psoriasis really, really bad on

my scalp. It completely covered my ears and was really bad on the front half

of my scalp and was creeping down my forehead to my eyebrows. Now I hardly

have any psoriasis, still a little behind my ears, on the crown of my head,

and at the nape of my neck, and the insane itching is fairly well controlled.

I don't feel like I have the flu 24/7.

Don't get me wrong, I still have plenty of pain in my hands, shoulders, feet,

knees, hips, and back (okay everywhere), but I don't have that low-grade

fever, make you feel like you're going to crock feeling like I used too all

the time.

I also take etodolac and Tylenol in addition to the MTX , along with

ranitidine, benadryl, Robaxin, temazepam, Premarin, calcium, iron gluconate,

and a bunch of others that would give me cramps in my fingers to type them

all down.

MTX has worked well for me up until recently. Lately, I have been getting

more pitting on my nails and my liver AST enzymes went up to 61. I had other

extended liver function tests done, but everything else so far has been fine.

I will have to wait and see my rheumy, to see what he wants to do. I have

also noticed that my pain is not as well-controlled as it was before, so I

may have to come off the MTX and go on something else. I never had a lot of

nausea from the MTX. I am taking 20 mg p.o. once a week. I only feel slightly

nauseated and just really drug out and tired for about a day after taking it.

I take it on Friday night, so by Saturday evening or Sunday morning I'm

feeling pretty okay. I work Tuesday through Saturday and by taking MTX this

way, I don't spoil my weekend.

MTX also helped most of the swelling go away in my feet. When I first had the

first signs of PA, my feet ankles swelled up overnight like big balloons. It

was thought for almost 4/1-2 years that I had rheumatoid arthritis because I

didn't know psoriasis was a part of our disease, and I never mentioned this

little tiny patch of psoriasis I had behind my right ear at that time. The

treatment for both diseases is basically the same, but it is wonderful to

finally know for sure what I have.

If I hadn't started the MTX I wouldn't be walking or able to do my job. I

work as a transcriptionist, and so I type dictation 8 hours a day. My hands

are still really affected by PA (lump on my little finger joint, pain in my

end joints of my fingers, and lots of stiffness, tendinitis, and just the

right touch of carpal tunnel ((sounds like a recipe)), but MTX has made them

at least 50% better from what they were. Before it just felt like all my

fingers were broken and I had a real difficult time performing my job. I wear

my night splints, take my meds faithfully, and do what I can to make myself

more comfortable.

Anyway, only you can decide what is best for you. Just don't wait too long.

You might be leaving youself open to harm if you don't start some sort of

disease modifying drug such as MTX, as it is usually the first drug of choice

by rheumys because it has the fewest side effects compared to some of the

other disease modifying drugs out there.

Good luck in your decision.

Carol in Vancouver, Washington USA

[Guest guest]

i have been taking mtx for a yr now and it has helped me alot but i am right

now having a really bad flareup and my rheum has increased my mtx to 25mg and

im fine..it just depends on how senstive you are to meds and you can always

stop taking if you experience side affects that are unbearable compared to

the pain.

Good luck

Lissa

[Guest guest]

Hi,

I am fairly new to this list and to PA. I had been seeing doctors for four

years before I found a rheumatologist who after taking one look at my elbows

(covered with psoriasis) said this is what I had. After doing some research, I

was shocked because I realized the colitis/IBS the docs had been treating me for

for twenty years had all along been the PA. When I had flare-ups of pain I

would say it is in the bone at the base of the spine and the doctors would say

oh no, it is in the colon. But now I think it was the start of all this and I

was and still am swelling around those bones. (My legs were covered with

psoriasis at the same time but it has since cleared). The doctors would say, we

can give you some cream for that rash but never made a connection. My mother

has passed, but I now realize she also had this. She had the swollen fingers

and ankles/feet and would get regular shots in her shoulder for " bursitus " . My

problem is that I also have small fiber neuralgia going on in conjunction with

the PA. I am on seizure meds, (Topamax) 50 mg one day 25 the next, to control

tremors, which I am told are not connected to PA. The Topamax greatly reduced

pain and the neurological disease makes my feet mostly numb so in a way, it

actually helps the effects of the PA. My new rheumatologist said I am allergic

to many of the PA treatments but has prescribed 50 mgs of VIOXX. This makes me

feel pretty good, but he doesn't like me taking it on a daily basis. He wants

me to stay off methotrexate for as long as possible because of the potential

side effects and the long-term committment and in my case, with the allergies, I

don't have a lot of options. I was on methotrexate once, but not for very long

and started losing hair so I wasn't anxious to back to it. I am concerned that

if you wait, however, to begin treatment to suppress the immune system, how much

joint damage and bone damage might take place. I am thankful I have the Topamax

since I was using a cane to walk before I started on it. I also exercise

regularly and do Yoga faithfully which I think helps tremendously. I only do

this with trained professionals who work with arithitic people and my

rheumatologist wasn't thrilled with everything I do, but it makes me feel

better. I have had to give up so much so anything that makes me feel better I

take. The Yoga is a great stress reliever and you don't have to stand on your

head or get into strange positions to benefit. Mainly it is gentle stretching

which really helps those stiff joints. (Again, you have to find someone who

understands how the body works)

I am so happy my family doctor hung in there and kept sending me to different

doctors. He couldn't figure out what was wrong, but he knew it wasn't

fibramyalgia. I hate that catch-all phrase.

I have really learned so much from reading this list. It helps to see others

going through what you face daily and what those around you really don't quite

grasp.

relizabethb@...

Re: [ ] I just found out I have psoriatic arthritis

Robin,

Sorry about your diagnosis. I understand your feelings about the

methotrexate. I have had psoriatic arthritis for several years but have

never been treated for it by anything except NSAIDS. I flared with it

really bad last year when my dad was diagnosed with cancer and a

rheumatologist took one look at me and prescribed methotrexate. I

researched it and I'm so afraid of it that I am refusing to take it until I

am sure there are no other options. I have been reading all of the posts

that the veterans to this site have been making and have learned that there

are other options. So I'm awaiting an appointment with a new

rheumatologist. I know that many people on this site are positive about

methotrexate and perhaps they are the people you need to take advice from.

> I just found out today I have psoriatic arthritis. I am being

> treated with Methotrexate. Does anyone take this? It concerns me a

> great deal due to all the side effects. My rheumatologist also has

> me taking folic acid the day after my dose of Methotrexate. I would

> love to hear from people who have this as I am very concerned.

>

>

[Guest guest]

Hi Ruth,

I just read your e-mail about being on seizure meds. Have you

actually had a seizure? The reason i'm asking is I have had about 8

seizures since I was 21 and i'm 31 now. They don't think I have

epilesy and I went off my meds in March 2001 as we are trying to get

pregnant. Has anyone said that PA may cause seizures?

I was on vioxx before and I think it helped me a bit. Hope it helps

you.

Shirley.

[Moderator's note: To the best of my knowledge, no one has ever said anything

about PA causing seizures for as long as I've been a member of this forum. Ron]

> Hi,

> I am fairly new to this list and to PA. I had been seeing doctors

for four years before I found a rheumatologist who after taking one

look at my elbows (covered with psoriasis) said this is what I had.

After doing some research, I was shocked because I realized the

colitis/IBS the docs had been treating me for for twenty years had

all along been the PA. When I had flare-ups of pain I would say it

is in the bone at the base of the spine and the doctors would say oh

no, it is in the colon. But now I think it was the start of all this

and I was and still am swelling around those bones. (My legs were

covered with psoriasis at the same time but it has since cleared).

The doctors would say, we can give you some cream for that rash but

never made a connection. My mother has passed, but I now realize she

also had this. She had the swollen fingers and ankles/feet and would

get regular shots in her shoulder for " bursitus " . My problem is that

I also have small fiber neuralgia going on in conjunction with the

PA. I am on seizure meds, (Topamax) 50 mg one day 25 the next, to

control tremors, which I am told are not connected to PA. The

Topamax greatly reduced pain and the neurological disease makes my

feet mostly numb so in a way, it actually helps the effects of the

PA. My new rheumatologist said I am allergic to many of the PA

treatments but has prescribed 50 mgs of VIOXX. This makes me feel

pretty good, but he doesn't like me taking it on a daily basis. He

wants me to stay off methotrexate for as long as possible because of

the potential side effects and the long-term committment and in my

case, with the allergies, I don't have a lot of options. I was on

methotrexate once, but not for very long and started losing hair so I

wasn't anxious to back to it. I am concerned that if you wait,

however, to begin treatment to suppress the immune system, how much

joint damage and bone damage might take place. I am thankful I have

the Topamax since I was using a cane to walk before I started on it.

I also exercise regularly and do Yoga faithfully which I think helps

tremendously. I only do this with trained professionals who work

with arithitic people and my rheumatologist wasn't thrilled with

everything I do, but it makes me feel better. I have had to give up

so much so anything that makes me feel better I take. The Yoga is a

great stress reliever and you don't have to stand on your head or get

into strange positions to benefit. Mainly it is gentle stretching

which really helps those stiff joints. (Again, you have to find

someone who understands how the body works)

> I am so happy my family doctor hung in there and kept sending me to

different doctors. He couldn't figure out what was wrong, but he

knew it wasn't fibramyalgia. I hate that catch-all phrase.

> I have really learned so much from reading this list. It helps to

see others going through what you face daily and what those around

you really don't quite grasp.

[Guest guest]

No, Shirley, my doctor said they are definitely unrelated. They thought for a

long time I might have Lou Gehrig's but I have lived too long. The nerve

technician thinks it is another tumor ( I lost half a thyroid and a parated

gland due to tumors which were not malignant). I am on a very low dose of

Topamax but I have lost most of my sense of taste and smell. I can't feel hot

and burn easily. I have no feeling almost up to my knees and the reflex is

getting bad. That is all the neurological stuff.

relizabethb@...

http://site.quickbooks.com/sites/98/03/2e/rebrown15541/

http://albums.photopoint.com/j/AlbumList?u=52571 & f=0

[ ] Re: I just found out I have psoriatic arthritis

Hi Ruth,

I just read your e-mail about being on seizure meds. Have you

actually had a seizure? The reason i'm asking is I have had about 8

seizures since I was 21 and i'm 31 now. They don't think I have

epilesy and I went off my meds in March 2001 as we are trying to get

pregnant. Has anyone said that PA may cause seizures?

I was on vioxx before and I think it helped me a bit. Hope it helps

you.

Shirley.