New Member

[Guest guest]

! This is a terrible thing that happened to you. As if PA isn't enough. I

am so sorry.

A similar thing happened when I was 13. It started in my achilles and moved up

my leg. I was diagnosed with rheumatic fever and spent 2 months total bedrest in

the hospital, 4 months in bed at home and a whole school year only attending

required classes. I also took penicilen pills for about 8 years off and on.

About 5 years ago; the first time I went to a rheumatologist, she informed me I

had no murmur in my heart; thus no rheumatic fever, ever. J

[ ] new member

Hello everyone.

I'm new here, so I thought I'd tell a little about myself. I wanted to share

my diagnosis story.. as I thought it might interest some.

By the way, my name is , and I'm 21 years old.

About a little over two years ago, I woke up with a very bad pain in my foot,

and it was swollen. I'm a diabetic, and already had a podiatrist, so I went to

him first. He first thought it was some form of mild fracture, or something

alone those lines, so he put me in a cast for a week.. going back after that

week, there was no improvement, and he kept it on for another week... thinking

that since I heal slower than most because of the Diabetes, he'd give it some

more time.

Went back again and still nothing really seemed to be different. He was

baffled as to what it migt have been.. but because he is actually a good doctor,

he told me straight out that he wasn't sure what was wrong and he didn't want to

hurt me. He recommended me to an infectious disease doctor to look at my foot

and take tests.

I had MRI's done as requested by the infectious disease doctor, but for some

reason the test results were given to me (which isn't allowed... they're

supposed to be sent to the doctor I always thought).. anyway, the lab where I

picked up the test results were very close to my Diabetes doctor's office, so I

went to show him.

He took one look at the pictures and said that it was very serious and might

need surgery.. I was hospitalized that same day.

Not really knowing what was going on, there was now a team of about seven

doctors being contructed to all look at me, my results and make their

assumptions as to what was wrong with me. Probably two different surgeons, my

diabetes doctor in the lead, infectious disease doctors, etc...

I was diagnosed with Osteo-millitus, which is a pretty severe thing because

it's extremely hard to get rid of. It's a bone infection. Apparently, they

were diagnosing me with a bone infection, although the outside of my foot had no

scrapes, cuts, or any other side of an entrance where bacteria could have got

in. Their theory was that I took an insulin shot and somehow some bacteria on

my skin got into my blood and travelled to my foot.. and I developed the bone

infection.

I was hospitalized for probably a little over a week. It came down to them

" finding exactly what type of bacteria is causing the infection " .. I took

multiple MRIs, xrays, a test where they radiate your white blood cells, then put

them back in you to see where they go.. (assuming you have an infection, the

white blood cells will go to that spot...clever)

There was A LOT of talk about amputation of the toe.. (or foot is what i'm

pretty sure they were getting at) ... One surgeon actually said " well, everyone

loves having ten toes, but sometimes that's just not reality)... After all

the testing they did, they decided to put a pic line in me. (for those that

don't know what this is, it is an approximately ten inch long tube that goes in

your bicep, into your vein, up around your shoulder, right above your heart..

supplying you with whatever IV medicine is hooked up to it)

I was sent home on IV antibiotics to be supplied through the pic line, hoping

that the medicine they were giving was the right one for the bacteria i had.

I had a home nurse to take blood tests every four days, which my sed rates

were Always elevated, which was their main way of figuring out if the infection

was getting better or not...

My left knee then swelled up which worried the doctor quite a bit, as he

believed this was a sign that the infection was spreading.. and ordered my knee

be drained and the fluid tested. This was absolutely the most painful thing

I've ever been through in my whole life. They took something like six or more

vials out of my knee.. I will never forget how painful that was. Of course the

fluid tested negative for any infection... the doctor figured that the fact that

I wasn't walking as much anymore, and then maybe tried to walk a little

traumatized my knee, which, in turn, swelled up with fluid.

It was after i went home i started to loose the muscle in my legs from being

bedridden. I was soon having difficulty walking.. After weeks, they theorized

that the medicine was not working, and changed to a stronger antibiotic.. this

time, Rosephen (I think I spelled that right) After being on this for a while,

I started to throw up everything I ate. I lost 35 pounds in all from it.. and

by that time my leg muscles had totally deteriorated. My legs looked like

Jello, and had absolutlely no muscle left, I could barely stand.. and used a

wheel chair most of the time.

The antibiotics being in me so long, and the sed rates still high, they

figured that the medicine i was on was still not working for the bacteria that

was in me. I was sent to a surgeon to look me over before he would do a biopsy

to scrape the bone in my foot and test to see what bacteria it was. I, of

course, refused to go to the same surgeon that did the knee draining, and picked

someone totally different (Thank God)... As I was sitting in the waiting room

filling out the papers, when it wanted me to list all other conditions that I

had... I thought (should I write psoriasis?... does it even matter). I'm so

happy that I did.

He looked me over and told me flat out that he totally didn't believe I had a

bone infection, and that he has seen this so many times, at least twice a month.

It made me sick to think that this kind of thing happened THAT MUCH! He told

me he'd look over everything and talk my case over with some other doctors and

get back to me after he saw some test results.

He called me on my birthday and said to tell the nurse to take the pic line

out, gave me the name of a rheumatist, and told me that I had psoriatic

arthritis. If I hadn't gone to see him, I would have almost certainly had

something amputated.. toe, foot, who knows.. whatever it is, it's part of my

body. After that my doctor called me and actually said " Well, Dr. Levine seems

to be convinced it's not an infection.. it's arthritis.. I don't even know

anymore " ....

This incident has left me with a lot of pain, anger, and fear of doctors. Not

to mention I had to pretty much learn how to walk all over again. It is

extremely painful to regain muscle after it is lost. A little more than two

years later and the muscles are still very weak sometimes. I have plans to

start physical therapy and get back to the way I used to be. Just because I

have psoriatic arthritis doesn't mean I shouldn't be able to jump, or run, or

walk up stairs, etc. like a normal person.

I've been depressed for a long time, and what happened to me has affected me

deeply. It was a horrifying situation.

Has anyone else had something like this happen to them? Sorry the story was

so long, it was months and months and monthhssss of my life... I lost quite a

lot and wanted to share the story with people who might be able to understand.

Thanks a lot guys,

[Ed. Note: Good Lord , that's horrifying! It should be written up in a

medical journal. I think I'll send it to my rheumy. Ron]

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]

Hi, Mixa.

I am sorry to hear about your condition. However, I am glad to know

that you are looking for more information. I am a 20 year-old guy

with HH. It seems as though the majority of Hypogonadism ppl are

older than we, but that could be because the older adults are more

knowledable and more active in the message posts.

My therapy has been interesting, for my endo has had little

experience with a HH patient my age or my condition (T = 26 ng/dl). I

am currently on 10g of AG and my T is between 6-9 hundred (I just got

retested last week, and I will know the results of that soon).

I am going to ask my endo this week if I can have a sperm count test.

It sounds as though other members on this board have taken the test

even while on AG, but my endo thinks it is impossible to produce

sperm while on T. But I think he will be open to letting me try.

Actually, the hardest part for me will be providing a sample--even

with the great results I've enjoyed with AG, my libido is quite low;

masturbation is difficult and not a fun experience.

Still, I hope you enjoy success with whichever therapy you use. Many

of my relatives could not believe how much I'd changed in 6 months. I

hope you have positive results as well.

Thyme2k2

> Hello everyone,

>

> I'm 19 year-old guy from Europe suffering of Hypogonadism and

> Cryptochordism. Anyway, I never did any hormone test until this

> January and now I got diagnosed: Hypogonadism.

> I am about to start necessary therapies, but I'd like to get in

touch

> with guys of similiar age that have the same problem like myself.

>

> Cheers,

> Mixa

>

> P.S. Please DO contact me by e-mail: bgyu2001@y... or drop me a

> message by Messenger

[Guest guest]

Welcome Joy,

Being new to this is a bit scary, but don't ever hesitate to ask questions.

Especially with this group. I am newly diagnosed (1 year) and have learned

so much from everyone. I take Celebrex 200mg 2x per day, Plaquenil-40 mg 2 x

per day, Prednisone 6mg 1 x per day; MTX injected 25ml 1 x per week. This

allows me to work full time, and take care of what I have to do as wife,

mother and grandmother. If you are still having bone pain, it is important

to talk to your Dr. I also take Lortabs and Ultram for pain. I recently had

severe heel pain and the Dr. gave me Vicodin ES, boy did I fly???? This is a

battle, and you need to win and the only way you can win is with knowledge.

Ask your Dr, Rheumy, Orthopedist, Podiatrist, etc. or look it up in the

archives here, on the web, etc. until you get relief and the answers you

need.

Take special care of yourself,

Gentle Hugz & prayers,

Carol

[Guest guest]

In a message dated 2/18/03 9:21:08 PM Eastern Standard Time,

jhoorm01@... writes:

> Arava has taken my psoriasis away but not the pain in this

> area. Feet seem a lot better though.

> Thanks,

> Joy

>

Hmmm... I didn't know Arava was good for Psoriasis... although I don't know

much about that drug. Prednisone is a little scary long term... make sure

you know ALL you can about it.

[Guest guest]

Hello Joy,

I just wanted to say welcome and that I hope you find the groups as informative

as I do. Unfortunately I haven't tried the medications you mentioned.

-

[Guest guest]

Thanks for the welcome. What meds have you been on, if you don't mind my

asking?

Joy

On Tue, 18 Feb 2003 erinemcg@... wrote:

> <html><body>

>

>

> <tt>

> Hello Joy,<BR>

> I just wanted to say welcome and that I hope you find the groups as

informative as I do. Unfortunately I haven't tried the medications you

mentioned.<BR>

> -

[Guest guest]

I had that pain on and off last fall. The first time, I called the dr

because I thought it might be a heart attack. It radiated down my arm.

Until I read your post, I had forgotten about that pain. I haven't had it

in months.

Ks Di

----- Original Message -----

From: <jhoorm01@...>

> I have intense pain in my collarbone and clavicle area. Anyone

> experience this? Does anything help?

[Guest guest]

Hello Joy -- Welcome!

I take Arava and I am beginning to feel like it is doing a good job. I had

taken increasing larger doses of MTX for a year but it had become ineffective

(controlled the p really well though) and my doc didn't want to go to a higher

dose (I was taking 25mgx9 each week). At first I didn't think the Arava was

doing much but I recently noticed that I can actually take a long stride step

now. I am very excited about this as I haven't been able to walk well for over

a year. I don't worry too much about my liver because I have never been a

drinker or done anything particularly risky for my liver but we do keep a check

on it.

Plaquenil is still a hard one for me. I quit taking it about a week ago (to see

if it made any difference in my recent hearing loss) and experienced the most

horrible cramping in my calf, beside my ankle, my forearm and lower back. I

started taking it again yesterday and haven't had cramps yet. I am afraid it is

contributing to my hearing loss (I have to get hearing aids as soon as I can get

time to go for the molding). I get my eyes checked often and they seem to be

fine but the hearing loss may get worse so I really have a big decision to make

here.

I have had severe pain in every joint since this all started. My jaw was

horrible and the neck, shoulders, chest etc. were too. All of that is doing

much better. I have bouts of chin to chest pain but not nearly as bad or as

often as before.

Good luck with all your decisions. Cheri

[ ] New Member

Hi my name is Joy and I just was diagnosed Psoriatic Arthritis last

summer.

[Guest guest]

Welcome Joy,

I'm on Celebrex and plaquenil. I've been on the plaquenil for 10

years with no problems. I understand that some people do have

problems with plaquenil. The combination has worked for me. I'm

physically active with only minor aches and pains, most of the time.

Joy is also my daughter's name, so I'm partial to

> Hi my name is Joy and I just was diagnosed Psoriatic Arthritis last

> summer.

> I started out with using Celebrex and prednisone, then

> plaquenil (broke out in hives) and now Arava and prednisone.

> Is anyone else taking this? I know it has gotten some bad press.

> I worry about this. But my rheuma assures me as long as I keep

> up with blood tests I should be o.k.

> I have intense pain in my collarbone and clavicle area. Anyone

> experience this? Does anything help?

> Arava has taken my psoriasis away but not the pain in this

> area. Feet seem a lot better though.

> Thanks,

> Joy

> http://pages.ivillage.com/jhoormann/

[Guest guest]

Hi Joy,

Your post sounds similar to my husband. He was diagnosed last summer, and is

now on Arava and pred. He has been on it six weeks, and his doc said he noticed

an improvement. Not a lot, but we'll take what we can get. His P is about 95%

better (but it was never really bad to begin with) and his PA has improved a

touch. He tried MTX in the beginning, but after 4 months, there was only a 40%

improvement. After 6 weeks on Arava, there was a 50% improvement. His doc was

happy with this, and now we don't have to go back for 12 weeks. The improvement

is small, but we have a renewed sense of hope.

Hope this helps!!

Jeni

[Guest guest]

Thanks Jeni. Where does he have the most pain?

Joy

On Wed, 19 Feb 2003, Jeni Hinz wrote:

> Hi Joy,

>

> Your post sounds similar to my husband. He was diagnosed last summer, and is

now on Arava and pred. He has been on it six weeks, and his doc said he noticed

an improvement. Not a lot, but we'll take what we can get. His P is about 95%

better (but it was never really bad to begin with) and his PA has improved a

touch. He tried MTX in the beginning, but after 4 months, there was only a 40%

improvement. After 6 weeks on Arava, there was a 50% improvement. His doc was

happy with this, and now we don't have to go back for 12 weeks. The improvement

is small, but we have a renewed sense of hope.

>

> Hope this helps!!

>

> Jeni

[Guest guest]

Thanks Fred, the plaquenil was a big no in my book. I was so full ov

hives, I had bruises from some of them. Thanks for the welcome.

Joy

[Guest guest]

Thanks Carol, boy you are on a lot of meds. I know what you mean. I work

and some days it is such a struggle. I also have a 14 year old and 11 year

old. I tried Ultracet and could not take it and cannot take Vicodin.

My regular doc prescribes Darvocet but about all that does is make

me sleepy so I cannot take it at work.

Thanks for the warm welcome.

Joy

[Guest guest]

Hi Cheri,

What dose of Arava are you on? Do you take anything else and how long did

it take the Arave to kick in do you think?

Thanks,

Joy

[Guest guest]

He has pain all over. His hips have been the worst though. But, since he

started Arava, that has eased up. The sausage digits have also decreased. At

our last visit, we questioned why his thumbs are so bad also. His doc said that

he doesn't know why, but in PA patients, this is often a bad spot. He said it

doesn't happen in RA patients.

He also has pain in one shoulder. Other than that, he has kind of a roving

pain. For a few days its a knee, the next his elbow. He has lost some function

in his elbows already. He cannot extend them fully anymore. He didn't even

notice it until the doc said something. Weird.

Re: [ ] New Member

Thanks Jeni. Where does he have the most pain?

Joy

[Guest guest]

Yeah, my cardiologist took EKG and ultra sound when I told him where pain

was.

The EKG just showed irregular heart beat. He sent me home with halter

monitor but said it

was o.k..

You begin to wonder with one test after another.

Joy

> I had that pain on and off last fall. The first time, I called the dr

> because I thought it might be a heart attack. It radiated down my arm.

> Until I read your post, I had forgotten about that pain. I haven't had it

> in months.

> Ks Di

> ----- Original Message -----

> From: <jhoorm01@...>

>

> > I have intense pain in my collarbone and clavicle area. Anyone

> > experience this? Does anything help?

>

>

> 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]

Joy, I don't know the dosage. I put the pills in my holder and I threw the

bottle away. I know that is not a good thing to do but I really struggle with

all the meds I have to take so I do what I can to deny their presence. I'll

find out though. It is one pill per day, whatever that is. I take it just

before bed as it makes me tired right away. I started taking it the week before

Thanksgiving 2002 and I didn't notice the improvement until sometime in late

January. I also take vioxx, plaquenil, and I have prednisone for break through

flares. I don't take the prednisone unless I absolutely have to. For pain I

take extra strength tylenol because I have really bad reactions to a lot of the

other pain meds, ie. hives and trouble breathing. Meds have always worked

overtime on me and that is partly why I am so frugal about using them.

Keep in touch, Cheri

Re: [ ] New Member

Hi Cheri,

What dose of Arava are you on? Do you take anything else and how long did

it take the Arave to kick in do you think?

Thanks,

Joy

[Guest guest]

Thanks for reply, thyme2k2

I was already thinking that none had read my message at the group...

It's good to hear that your therapy is going well. Now I see that I

haven't written enough details regarding my case.

Well, I got diagnosed only two weeks ago, although I've suspected for

a long time that something (now I know what) might be wrong.

I was diagnosed during the military recruitment check-up. In my place

military service is compulsory for all able-bodied males 18-65.

When I was born, I was suffering of hypospadias and criptorchodism.

Anyway, at age of 5 I had these problems somewhat corrected (at least

my uretra is totally OK), but one of the testicles atrophied

completely. So, since age of 5 I have only one testicle, which is by

the way hypotrophic (smaller than it should be). This all gave me

reason to suspect (as written above) but I hesitated to talk about it

with my parents. One of the main reasons for suspections was that I

have virtually no beard growing and that my whiskers are also not so

strong (at least not like they should be).

So when I went to the military check-up, they sent me to see

urologist which sent me to the Military Health Academy, where I was

checked from toe to the top of the head. The endocrinologist there

sent me to check my testosterone, LH and FSH levels. My testosterone

level is 6,1 [i'm not sure about the units], while allowed level for

males is between 10,1 and 41,0 The other two levels are much, much

higher than they should be (I'm not sure about the exact levels, but

one of them is larger for 300 units that the maximum allowed). Since

the endocrinologist is a military one, he didn't bother telling me

what do to in order to improve my levels. But at least he declared me

Permanently Unable For Military Service.

At the moment, my parents and I are looking to find an expert for

hormonal issues and to start any kind of therapy.

Cheers,

MIXA

> > Hello everyone,

> >

> > I'm 19 year-old guy from Europe suffering of Hypogonadism and

> > Cryptochordism. Anyway, I never did any hormone test until this

> > January and now I got diagnosed: Hypogonadism.

> > I am about to start necessary therapies, but I'd like to get in

> touch

> > with guys of similiar age that have the same problem like myself.

> >

> > Cheers,

> > Mixa

> >

> > P.S. Please DO contact me by e-mail: bgyu2001@y... or drop me a

> > message by Messenger

[Guest guest]

Just catching up, someone may have already responded to this, if so - delete

this! Could the P be cleared up because of the prednisone and not the

Arava?

Re: [ ] New Member

> In a message dated 2/18/03 9:21:08 PM Eastern Standard Time,

> jhoorm01@... writes:

>

> > Arava has taken my psoriasis away but not the pain in this

> > area. Feet seem a lot better though.

> > Thanks,

> > Joy

> >

>

> Hmmm... I didn't know Arava was good for Psoriasis... although I don't

know

> much about that drug. Prednisone is a little scary long term... make sure

> you know ALL you can about it.

>

>

>

>

>

[Guest guest]

I was on prednisone before the Arava and it didn't help the P. My doc said

Arava has helped

people with P. I know that is not a very well know drug and there is some

controversy about

it but my doc said as long as I stay current on labwork and don't drink I

should be o.k.

Second round of blood work turned out o.k.. I have gained weight on the P

though and

even though I want to go off it, when I do I notice the swelling in my feet

and toes comes

back and I have more pain.

Joy

Re: [ ] New Member

> Just catching up, someone may have already responded to this, if so -

delete

> this! Could the P be cleared up because of the prednisone and not the

> Arava?

> >

> > > Arava has taken my psoriasis away but not the pain in this

> > > area. Feet seem a lot better though.

> > > Thanks,

> > > Joy

> > >

> >

> > Hmmm... I didn't know Arava was good for Psoriasis... although I don't

> know

> > much about that drug. Prednisone is a little scary long term... make

sure

> > you know ALL you can about it.

> >

> >

> >

> >

> >

[Guest guest]

What country are you in?

Steph

----- Original Message -----

From: " mesmir83 "

Sent: Friday, February 21, 2003 9:40 PM

> Thanks for reply, thyme2k2

>

> I was already thinking that none had read my message at the group...

> It's good to hear that your therapy is going well. Now I see that I

> haven't written enough details regarding my case.

> Well, I got diagnosed only two weeks ago, although I've suspected for

> a long time that something (now I know what) might be wrong..........

[Guest guest]

Your description sounds like Klinefelters, which we know is the most common

chromosome variation affecting 1 in 700 birth males.

However, like I said before, only a blood test to ascertain your karyotype

can reveal whether you are XY, XXY or something else.

The sooner you have the blood test, the better. I would suggest you discuss

it with your GP and request a referral to an endocrinologist. Your GP can

arrange the blood test and send it off for analysis.

I didn't grow facial hair until 3 years ago, like you I could only ever

manage peach fuzz and even that didn't happen until I was in my mid 30's. I

had no body hair, my pubic hair was sparse. The testosterone implants I

received were not giving my body the amount of testo it needed. So although

I was diagnosed in 1988, it wasn't until 1999 that I started getting a much

higher dose of testo and to get the shots, I had to kick up a fuss and make

an official complaint against my then endocrinologist. If I hadn't gone to

the USA I would more than likely have committed suicide by now. 4 days in

the USA changed my life beyond my wildest dreams. I've gone from 600mg every

4 months to 150mg every 7 days.

From 1985 to 2000 I was taking anti-depressants, prescribed by my GP on the

instructions of a neurologist. My depression wasn't caused by low seratonin

levels, it was caused by low testosterone levels. Yet to this day, no doctor

will acknowledge that.

Do yourself a favour and see a doc as soon as possible. Having knowledge

about your own body will allow you to move on. Take care.

Steph

www.XXY.com-1.net

----- Original Message -----

From: J A

Sent: Tuesday, February 25, 2003 7:55 PM

> Sorry about that. I am 35. I could let my facial hair

> grow for 3 weeks, and still would just have peach

> fuzz. I had a friend I went to school with who could

> grow a beard in 2 days, and I've never even been able

> to grow a mustache no matter what.

[Guest guest]

Hi Nicci.

I too am in the UK (30 miles north of London) I was DA with PA around

3 years ago and only went onto Mtx 6 months ago (also on Salazopyrene

and Vioxx), so far not having much noticeable affect but at least no

side affects either. Blood tests every month show no liver problems.

I say this because I believe here in the UK treatments such as Embrel

are not considered at least until you have worked your way through

the NSAIDS and treatments such as Mtx.

Everone on this board seem to agree that agressive treatment is

essential and I would suggest that if you hope to get onto Embrel the

sooner you try Mtx the earlier that might be. If you are fortunate

the Mtx may work well for you. I would from my own experience not be

overly concerned about Mtx provided that you are confident that your

Rheumy will monitor you properly and you do have the blood tests

regularly.

It is not easy having this, as the fatigue (in my case) has as much

impact as the other sympoms. I wish you well and hope you find this

group a support. I expect you will get other responses.

Geoff

> My Husband has had Psoriasis for 20 years and PA for

> about 6/7. He has only just started to talk about

> everything, though we have been together 9 years

> (married in '98).

>

>

> __________________________________________________

>

[Guest guest]

Geoff

Thanks so much for your reply - sorry for the delay in contacting you

back but I have never used a facility such as this so have replied to

your e-mail!

I have also tried to post my reply in case anyone else has any

comments about methotrexate/sperm count or any information regarding

treatment that is available to us in the UK.

I have the hang of the site now so look forward to all the help &

support it offers!

Nicci

-- In , " wgsooty

<geoffsutcliffe@h...> " <geoffsutcliffe@h...> wrote:

> Hi Nicci.

>

> I too am in the UK (30 miles north of London) I was DA with PA

around

> 3 years ago and only went onto Mtx 6 months ago (also on

Salazopyrene

> and Vioxx), so far not having much noticeable affect but at least

no

> side affects either. Blood tests every month show no liver

problems.

> I say this because I believe here in the UK treatments such as

Embrel

> are not considered at least until you have worked your way through

> the NSAIDS and treatments such as Mtx.

> Everone on this board seem to agree that agressive treatment is

> essential and I would suggest that if you hope to get onto Embrel

the

> sooner you try Mtx the earlier that might be. If you are fortunate

> the Mtx may work well for you. I would from my own experience not

be

> overly concerned about Mtx provided that you are confident that

your

> Rheumy will monitor you properly and you do have the blood tests

> regularly.

>

> It is not easy having this, as the fatigue (in my case) has as much

> impact as the other sympoms. I wish you well and hope you find this

> group a support. I expect you will get other responses.

>

> Geoff

>

>

> > My Husband has had Psoriasis for 20 years and PA for

> > about 6/7. He has only just started to talk about

> > everything, though we have been together 9 years

> > (married in '98).

> >

> >

> > __________________________________________________

> >

[Guest guest]

What was your very rough time in terms of the body reacting to the AP

working? I am seeing an Alternative Dr. who is interested in

Clindamycin IV's for 5 days then Mino. I am terrified of needles. Does

anyone know how the IV's are administered? Through the arm or hand?

Tamra

Re: rheumatic New member

Hi,

I was diagnosed with RA in '88, however since that time we strongly

suspect there is/was a PA connection. Either way, my path would have

been the same - that is the AP protocol as outlined and explained in

http//www.roadback.org.

I too had the worst of the arthritis in my hands, fingers, toes and

knees. I am not cured as yet but all of my labs are inching toward

normal. (In fact my CRP is normal)

I began the AP two years ago and had a very rough time of it, in terms

of my body reacting to the AP " working " .

I myself felt that the usual drugs such as methotrexate, celebrex, etc,

were not for me. I did not want to treat symptomatically, instead my

goal was and is to eject the rheumatoid out of my body. This I believe

(in my case) can be done, is being done.

Do read all of the information in the Road Back, the " histories " section

was particularly helpful and inspiring to me when I was most in need of

help and inspiration.

K

Attwood wrote:

> Hi everyone. I am considering antibiotic treatment for my psoriatic

> arthritis. I have been taking 25mg methotrexate (injected for last 2

> weeks) weekly and 1g daily salasopyrin for over a year and my PA

> continues to get worse. I also take 175mg Indocid (I'm allergic to

> celebrex & VIOXX). My CRP is 48 and ESR/SED is 15.

>

> The PA is in my fingers, toes, knees and occasional flares in my

> lower back.

>

> I am interested in hearing from anyone with similar symptoms who has

> tried antibiotic treatment.

>

>

>