Re: psoriatic spondo arthropathy

[Guest guest]

Hi Nick, Welcome aboard,

I think that there are several of us here living with PA with spinal

involvement. My spine first began giving me trouble more than twenty

years ago. Now, it is about 85% fused. My SI joints are now fully

fused - giving me a bit of a swagger - which is not bad because I live

in cowbow country...I sort of fit in even though I didn't get this way

from years in the saddle. My C-spine seems to be the only part of my

back that is not bothering me. I used to be very atheletic and I

think it has saved me from problems that would have been worse if my

spine and muschles were weaker.

I recommend your seeing a rheumatologist and investigating the

biologics: Enbrel, Humira, and Remicade. They are the expensive heavy

hitters that can help you keep from having further damage.

Best wishes, ...Brent

[Guest guest]

Welcome to the group. For me Im from Canada and I travel to the Uk for 6 months

and hopefully move to the Uk. Im 45 yrs old been suffering with PA most of my

life and got DX in my 30. I have postive liver test more than one. The first

time my liver test went up I had a biopsy cause they thought it was the

Methotrexate but I told the Dr. that I felt it was the Celebrex. In short after

the test of the liver The Dr. agreed that it was the Celebrex. I stoped taking

the Methotrexate before the biopsy and Celebrex. Most Dr. ussually think its the

Metho. but with the liver biopsy it was not. In short I stopeed taking it for

about 2yrs and my pain got worse. Tried every meds got the side effect. For

two yrs got back on Metho. liver test is fine when I started taking other meds

liver test went up. I knew that it was not the metho. but other meds. cause as

soon I took it my liver test went up and as soon I stoped felt better. In

short, for me you have to know what

works with your own body and mixining other meds with Metho. can give postive

liver test. Now I only take Metho. cause it the only one helps and hydromorphone

for pain when I need it. For me takes years to find what willl help your own

body and trying different meds is the only to know which will work for you.

Take care t

[ ] psoriatic spondo arthropathy

Hi everyone,

I'm new to the group - just joined. I have just moved to France from

UK where I was diagnosed as having psoriatic spondo arthropathy 7 or 8

years ago. I am now 40 and feel the arthritis has started to kick in,

big time, during the last 2 years. I particularly have problems with

my neck and shoulders, although back, knees, hands, wrists and elbows

are not far behind. Night time is the worst.

Does anyone have a similar diagnosis and have any success stories with

meds/diet? Years ago I was tried on sulfasalazine, which just had

nasty side effects (still taking daily meds for the acid reflux) and

recently tried and stopped methotrexate (didn't like the results of the

liver function tests). I now just take an anti-inflamatory called

voltarol.

I hope I can contribute positively to the group and look forward to

your comments.

rgds, Nick.

[Guest guest]

Welcome to the group! I too have the spinal involvement for 3 or so

years now. I found that Chiropractic care mixed with Acupuncture

helped my back significantly when it was at it's worse. ALSO see a

Physical Therapist about strenthing the back, neck and STOMACH

muscles. I cannot stress this strong enough. Exercising is so

IMPORTANT...even if you feel like you are in too much pain to move,

we need to MOVE!!!!

Having your core muscles flexible and strong will help your back

problems. Just learn your weakness and work around them. Chiro got

me moving again, and the accupuncture took the pain away for awhile,

but the PT taught me how to move and walk, etc without throwing my

back out every 5 minutes...which was what I was doing at the time.

It is the little things that we do wrong, ie gettng out of a car, or

reaching too far to answer the phone at work, that can throw anyone

out of whack and add to the downward cycle of pain!

Also I work out at the gym when I can and do water

aerobics...working out has been extremely frustrating for me since i

was very atheltic before I started having problems. I am lucky, I

have a muscular build so I can manage to work around my back

problems and tone up the rest of my body. But it sucks that I can't

lift anything heavy. From my expereince, building your stomach

muscles can help offset weight on your back...so therefore helping

with the pain and discomfort.

Drugs are hit and miss with me since i am one of those " types " who

are super sensitive to them. Right now I just started on

sulfasalazine...I am now at full dosage and it has been a month

being on it but I can't say if it is working or not. Enbrel was so

quick to work...unfortunately for me I had CNS (MS) side effects and

can't take them now. You are right though, the sulfasalazine is

causing some serious heart burn!!! It is getting better and despite

the occasional dizziness and fatigue, I am reacting well.

Life is good! Hope this helps!

Kat

>

> Hi everyone,

> I'm new to the group - just joined. I have just moved to France

from

> UK where I was diagnosed as having psoriatic spondo arthropathy 7

or 8

> years ago. I am now 40 and feel the arthritis has started to kick

in,

> big time, during the last 2 years. I particularly have problems

with

> my neck and shoulders, although back, knees, hands, wrists and

elbows

> are not far behind. Night time is the worst.

> Does anyone have a similar diagnosis and have any success stories

with

> meds/diet? Years ago I was tried on sulfasalazine, which just had

> nasty side effects (still taking daily meds for the acid reflux)

and

> recently tried and stopped methotrexate (didn't like the results

of the

> liver function tests). I now just take an anti-inflamatory called

> voltarol.

> I hope I can contribute positively to the group and look forward to

> your comments.

> rgds, Nick.

>

[Guest guest]

>

> Welcome to the group. For me Im from Canada and I travel to the

Uk for 6 months and hopefully move to the Uk. Im 45 yrs old been

suffering with PA most of my life and got DX in my 30. I have

postive liver test more than one. The first time my liver test went

up I had a biopsy cause they thought it was the Methotrexate but I

told the Dr. that I felt it was the Celebrex.

>

im new here and just finished reading most posts. and replys. im

glad you mentioned the mtx and celebrex. i didnt have a biopsy but i

also stopped taking celebrex and my lab went back to normal. i will

throw out my celebrex today. i knew it was the celebrex but just

couldnt throw out until now. my doc wants me to take aleve 6x per

day and i just cant. i would rather deal with the swelling and pain.

not much fun..... i talked to a pharmacist and he suggested that

while taking mtx i shouldnt take aleve but take tylenol arhritis.

help!!!!! what is best known out there?

[Guest guest]

I would tend to follow my rheumy's advice rather than that of the

pharmacist. Is there a particular reason you are not wanting to

take the Aleve? I'm not aware of it being any more or less

troublesome than Tylenol. I'm taking Naproxen, which is the

prescription flavor of Aleve. I prefer it so that I don't have to

take as many pills per day. I think I would take 4 Aleves to equal

1 of the Naproxens I take. You can ask your rheumy for a script for

Naproxen if it's the number of pills bothering you.

regards,

sherry z

>

> my doc wants me to take aleve 6x per

> day and i just cant. i would rather deal with the swelling and

pain.

> not much fun..... i talked to a pharmacist and he suggested that

> while taking mtx i shouldnt take aleve but take tylenol arhritis.

> help!!!!! what is best known out there?

>

[Guest guest]

>

> I would tend to follow my rheumy's advice rather than that of the

> pharmacist.> regards,

> sherry z

thank you! im having a pretty bad time with flare ups this week. ive

taken 4 aleve so far today. i do feel better. dont need to feel guilty

on top of the pain you know! just didnt know which way to turn. there

is so much unsolicited advice out there. no one really understands.

thank you for the reply. aleve it is!!

thanks again

lorrie

[Guest guest]

Thanks everyone for your welcome and responses to my posting. It is

great to have supportive and knowledgable contacts in the PA

community at last.

I realise that most of the group members are 'stateside' and wonder

if anyone there has heard of Jan de Vries? He is a dutch alternative

therapist based in Scotland, who claims alot of success with diet and

natural remedies. I'm just reading his book and wonder if anyone in

the groups has tried any of his suggested diets? They look fairly

extreme and hard work, so I thought I might find someone who can give

a personal testimonial, before I put myself through it! (LOL)

rgds

Nick

> >

> > Hi everyone,

> > I'm new to the group - just joined. I have just moved to France

> from

> > UK where I was diagnosed as having psoriatic spondo arthropathy 7

> or 8

> > years ago. I am now 40 and feel the arthritis has started to

kick

> in,

> > big time, during the last 2 years. I particularly have problems

> with

> > my neck and shoulders, although back, knees, hands, wrists and

> elbows

> > are not far behind. Night time is the worst.

> > Does anyone have a similar diagnosis and have any success stories

> with

> > meds/diet? Years ago I was tried on sulfasalazine, which just had

> > nasty side effects (still taking daily meds for the acid reflux)

> and

> > recently tried and stopped methotrexate (didn't like the results

> of the

> > liver function tests). I now just take an anti-inflamatory called

> > voltarol.

> > I hope I can contribute positively to the group and look forward

to

> > your comments.

> > rgds, Nick.

> >

>

[Guest guest]

Lorrie - my rheumy gave me some samples of a timed-release Naproxen

that I finally got around to trying yesterday when I ran out of my

regular prescription. Instead of taking one each morning and one each

evening, I just take 2 each morning and they last all day and all

night. So far, so good. I had the best day yesterday I've had in a

long time. Of course, as we all know, it could just be a coincidence

and nothing at all to do with the new form of Naproxen. But I hope it

is indeed a better way for me to take the med. This is the same as

Aleve but you take fewer because they are stronger. Depending on what

your insurance co-pay for drugs is, it can work out cheaper too.

A physician friend of mine mentioned that taking fewer pills is better

when possible, because all pills have " filler " ingredients, some of

which can be hard on kidneys and liver just like the med itself. So

fewer pills means less filler.

wishing you the best,

sherry z

>

>

> thank you! im having a pretty bad time with flare ups this week. ive

> taken 4 aleve so far today. i do feel better. dont need to feel

guilty

> on top of the pain you know! just didnt know which way to turn.

there

> is so much unsolicited advice out there. no one really understands.

> thank you for the reply. aleve it is!!

> thanks again

> lorrie

>

[Guest guest]

" I would tend to follow my rheumy's advice rather than that of the

pharmacist. Is there a particular reason you are not wanting to

take the Aleve? "

" my doc wants me to take aleve 6x per day and i just cant. i would

rather deal with the swelling and pain. i talked to a pharmacist and

he suggested that while taking mtx i shouldnt take aleve but take

tylenol arhritis. "

I take the Aleve myself, a total of 1500 mg daily, and I take

Methotrexate as well. It's actually been the easiest tolerated and

most effective of all the NSAID's for me. Why do you need to take it 6

times a day? I split my dose into three times a day dosing? Sometimes

the combination of Methotrexate and NSAID's can be hard on the stomach

if you have GERD, but if you make certain to take the NSAID with food

or milk and to take OTC Prilosec/omeprazole daily (or whatever your

doc has prescribed for the GERD), the effects should not be too

troublesome.

Brightest blessings, Wanda

[Guest guest]

>

> Hi everyone,

> I'm new to the group - just joined. I have just moved to France

*Nick...It seems that you have not tried any of the biologics yet (ie

Enbrel, Humira, Remicaid). Enbrel worked wonders for me. I am a 45 yr

young woman who was always very active and found myself barely able to

walk last spring due to PA in my hips and lower spine. Knees and hands

are also effected to some degree. It took the Enbrel about 6 weeks to

kick in and then I have to tell you, I felt better than I had felt in

20 yrs. The fatigue was gone and it felt amazing. I had to get off of

it for 11 weeks due to a UTI but started back last week and am hopeful

that it will do it's magic for me again. It should not take as long

this time according to my Rhuemy. Do you have a new Rheumy since you

moved? As soon as you do, ask him/her about new options for your

treatment.

Nick said:

I hope I can contribute positively to the group and look forward to

> your comments.

> rgds, Nick.

>

Seems as if you are jumping right in there already and giving back. I

believe that is a great way to help you feel better as well! Good

show! -Betz

[Guest guest]

If you are taking MTX, you should NOT TAKE tylenol.

It is documented that both are hard on the liver. You are asking for

trouble by taking both.

Just my 2 cents.

Sandy swOhio

[Guest guest]

In a message dated 11/09/2006 01:54:32 GMT Daylight Time,

nick.lacheze@... writes:

I'm new to the group - just joined. I have just moved to France from

UK where I was diagnosed as having psoriatic spondo arthropathy 7 or 8

years ago.

Hi Nick,

Welcome to the group. I know you joined several weeks ago but I am nearly

always way behind in answering the mail so you will get used to it. lol

I am in the UK, Scotland. How are you finding France? Enjoying living there I

hope. One of my friends has done the same thing.

I hope you had some joy in getting answers to your questions. Enbrel has

been a good help to me. I guess someone will have mentioned the biologics to

you

by now.

I hope you get what you are looking for from the group. There are a lot of

amazing people here.

Take care,

[Guest guest]

In a message dated 12/09/2006 19:24:49 GMT Daylight Time,

nick.lacheze@... writes:

I realise that most of the group members are 'stateside' and wonder

if anyone there has heard of Jan de Vries? He is a dutch alternative

therapist based in Scotland,

Hi again Nick,

I went to his clinic in Troon for about 18 months. This was years and years

ago. I saw him initially and then his son-in-law, a Dr Tan. He is pretty good.

I eventually stopped going because I found out that my own doctor did

acupuncture.

I'm afraid I have never been very good at following his diets though. My

opinion was that, basically I was allowed to eat anything I didn't like and was

not supposed to eat anything I did like! lol

I remember on one occasion when my wife made pork chops for tea. I said to

her, ', pork is at the top of the list of things I am not supposed to eat

because it is so acidic.' ' Is that not on the list too?' she asked, pointing to

the bottle of beer sitting beside it. lol I ate the pork.

Good luck if you decide to go for it.

[Guest guest]

Hey ...nick I have that too..in both ankels and joints....

Jo

martincoyless@... wrote:

In a message dated 11/09/2006 01:54:32 GMT Daylight Time,

nick.lacheze@... writes:

I'm new to the group - just joined. I have just moved to France from

UK where I was diagnosed as having psoriatic spondo arthropathy 7 or 8

years ago.

Hi Nick,

Welcome to the group. I know you joined several weeks ago but I am nearly

always way behind in answering the mail so you will get used to it. lol

I am in the UK, Scotland. How are you finding France? Enjoying living there I

hope. One of my friends has done the same thing.

I hope you had some joy in getting answers to your questions. Enbrel has

been a good help to me. I guess someone will have mentioned the biologics to you

by now.

I hope you get what you are looking for from the group. There are a lot of

amazing people here.

Take care,

[Guest guest]

>

Hi ,

I thourght it was supposed to be Steak and ale, but pork and beer will

suffice!!! LOL

Keep the light shining,

Ian.

>

> In a message dated 12/09/2006 19:24:49 GMT Daylight Time,

> nick.lacheze@... writes:

>

> I realise that most of the group members are 'stateside' and wonder

> if anyone there has heard of Jan de Vries? He is a dutch alternative

> therapist based in Scotland,

>

>

> Hi again Nick,

>

> I went to his clinic in Troon for about 18 months. This was years

and years

> ago. I saw him initially and then his son-in-law, a Dr Tan. He is

pretty good.

> I eventually stopped going because I found out that my own doctor did

> acupuncture.

>

> I'm afraid I have never been very good at following his diets

though. My

> opinion was that, basically I was allowed to eat anything I didn't

like and was

> not supposed to eat anything I did like! lol

>

> I remember on one occasion when my wife made pork chops for tea. I

said to

> her, ', pork is at the top of the list of things I am not

supposed to eat

> because it is so acidic.' ' Is that not on the list too?' she asked,

pointing to

> the bottle of beer sitting beside it. lol I ate the pork.

>

> Good luck if you decide to go for it.

>

>

>

>

>

>

>

[Guest guest]

In a message dated 06/10/2006 21:16:55 GMT Standard Time,

viking_warlock@... writes:

I thourght it was supposed to be Steak and ale, but pork and beer will

suffice!!! LOL

Hi Ian,

Lol Either pairing would have been acceptable to me.

Its great to see you back again, lifting everyone's

spirits.................................so put them back down

again...................you know your not

supposed to be drinking alcohol. lol

Seriously though, i hope everything is going well for you. Everyone enjoys

reading your posts I reckon. That light of yours keeps us bright.

Take care,