Re: New to the Board... some questions...

[Guest guest]

I have moderate PA . . .

I think that stress reduction being mindful of what you eat and

weight reduction for starters will help it go into remission. I have had mine go

into remission spontaneously. I think that if you *love* what you do that may

benefit you greatly with this disease.

[Guest guest]

oknextinline,

Sorry to read you have this disease. It will most likely be a

life-alterring experience that not everyone may have empathy for.

The short answer to your questions:

The general purpose of a biologic is to reduce inflammation but it is

more complicated than that.

http://www.rheumatology.org/public/factsheets/medications/biologics.asp

or

http://tinyurl.com/96asjo

Yes, PA can go into remission but (the last I have read) the reason for

remissions are very inconclusive. Results for the same types of

treatment have rarely yielded the same results. This is thought to be

because we have so much variability in our genetic and physical

make-ups. Many people find ways to deal with the disease so that they

achieve partial remissions.

Stress, both emotional and physical, can be a big factor in having

flare-ups. As a general rule, the more stress you can remove from your

life the better you will feel. Attitude, stretching and moderate

exercise are important. Overdoing exercise is not good.

Many of the things that are not good for diabetes have been found not to

be good for many with PA - refined grains, sugar, alcohol, lack of

exercise, anger/frustration/anxiety, improper sleep, etc. There is a

chance that if you have been on a regimen for your diabetes for some

time, it has helped stave off some of your PA. There is a chance that

if you are starting a regimen for diabetes, it will help your PA.

It is very important to find ways to stop the inflammation and the

antibody (macrophage) damage occurring in your joints. Much of the

damage can be irreversible. The inflammation is what causes the bulk of

the damage. The TNF inhibitors (biologics) have been found to do this

best because they block the antibodies from attacking. The side effects

can be horrific. Using biologics should be guided by a competent

rhuematologist.

Best wishes, Brent

[Guest guest]

Hi!

In reply to your query about how Humira works on PA...I used to use

Enbrel for close to three years and switched to Humira two years

ago. Biologics as the ones aforementioned, Stop the progressive pa

in its tracks...and pretty much will get rid of any areas of

psoriasis that you might have. I have had pa since I was 22 or 23

and am now 48. My son who is 28 is also on Humira and has been for a

year. It has Totally changed both our lives.

I can see why you might be leery of such drugs with your

diabetes...you mentioned that your dermatologist suggested this...I'

get online and find a rheumatologist at at university teaching school

close to your location. Shop around...docs aren't any different than

us, they just have more schooling. Don't be intimidated...as

everything is manageable.

And Humira will also greatly reduce the inflammation and pain

associated with pa.

I know that everyone has a different experience with certain drugs

but

time is marching on and so is the pa in your body.

Perhaps there are others out there with diabetes who are on Humira

that might have some input...best of luck to you!

kath

[Guest guest]

Brent,

THANK YOU for your response! I will go to the links to see if I can

further understand the issues better!

As I was reading your response, I realized I didn't have a grasp of

the antibody problem... I was hoping it was just a matter of the

inflammation causing the damage. I simply have not understood the

potential damage that can be caused by the antibodies.

Geeeee... I'm not a medical person and I have TONS to learn.

In the last couple weeks I started a natural regimen until I get a

better grasp of Humira, etc. This morning I woke up with very little

discomfort, whereas I have been waking up quite stiff and hurting in

my lower back, spine, neck, shoulders, hands, hips, knees and just a

bit in my feet. I felt sooooo good today. What a relief.

But I have also started four new supplements and don't know if it is

the combination or one or two or whatever. I began glucosamine

condroitin with sulfur, an online anti-inflammatory that I used

instead of NSIDs (cannot tolerate them) after knee surgery, a barley

grass and alkalinizing drops (in a 1.2 oz portable bottle) for my

coffee and water.

I wish I knew what was working. We are in the process of moving and

there is much stress associated with the move. As I read, I know the

stress of this move has caused this flare.

I'm going to keep on with the supplements until I do some more

research. Maybe I'll continue to improve... if so, I'll slowly wean

myself off one of the supplements at a time to see what happens.

I thank you for the information. I was aghast at the

potential side effects from Humira. But if there is an anti-body

problem maybe I will have to take it after all.

Best to you,

[Guest guest]

Kath,

THANK YOU. We are in the process of moving and I will definitely

take your advice and seek a rheumy in a university hospital. I would

not have thought to do that and your advice is quite timely.

Oh, wow... diabetes complicating this. My dermatologist didn't

mention that. Another thank you!

[Guest guest]

,

THANK YOU. We are moving and I have been stressed about it for a few

months. The move should be done with and over, except unpacking,

sometime in February. I do miss doing the things that I love... my

schedule, etc., has been interrupted.

Sensitive bodies we have!

>

> I have moderate PA . . .

> I think that stress reduction being mindful of what you eat and

> weight reduction for starters will help it go into remission. I have

had mine go into remission spontaneously. I think that if you *love*

what you do that may benefit you greatly with this disease.

>

>

[Guest guest]

Dear " Ok... "

I am certainly not an expert, but I'd wager my dollars to your

doughnuts that a " spontaneous " remission without the use of MTX,

Enbrel, Humira or some other drug is not possible. There are some

here that have tried some alternative methods such as restricted diets

or avoiding nightshades. Some may have experienced some success. AS I

understand it, remission with PA is usually a drug induced remission

and will re-occur when that drug is stopped.

That said, I would guess that some may have experienced some remission

without the use of drugs for periods of time.

The drugs we take do stop the inflammation, but more importantly they

go after the cause of PA, an over active or hyper active immune

system. These drugs all inhibit our immune system from going into

over drive. In turn, we have less or no inflammation.

If your joints are already damaged, the drugs will not reverse that.

PA can be managed, but not cured. Yes the drugs used to combat PA can

be scary. You should not make decisions lightly, but you do need to

make some choices, lest the PA continue to destroy your joints.

Many folks here have expressed the same fears about side effects. I

too was very concerned. Eventually, my concern waned as the pain grew

stronger. At one point I figured whatever side effect I might suffer

couldn't possibly be any worse than barely walking, and living every

day and night in pain.

Happily, today almost 6 years after starting Methotrexate (a drug with

many possible scary side effects), I am still virtually pain free,

have little to no joint damage and lead a normal life. I also suffered

ZERO side effects. I know I am fortunate, as many have experienced

side effects. You need to weigh for yourself the risks and benefits.

Read, as your rheumatologist questions. But do not let fear rule your

decisions.

Stay Well,

[Guest guest]

,

Thanks so much for your reply. You are in such a great position to

have a med that has brought you such relief. I appreciate hearing

your success story. Very much so. I don't know why, but my doc

didn't suggest I take MTX... maybe because I cannot take NSAIDs.

I wonder why our immune systems are so overactive as opposed to most

folk. It is a hard pill to swallow (gee, what a bad 'pun').

I appreciate your admonition not to make any decision in fear. I

decided today to find a doc at a teaching university hospital. In the

meantime I will be reading and thinking and making my list of questions.

[Guest guest]

Theresa, welcome. We all understand your fear of the side effects of

the drugs. However, have you considered the side effects of NOT

taking them? Without DMARDs (disease-modifying anti-rheumatic drugs)

you will definitely (not just possibly) eventually have irreversible

damage to your joints. You already are showing some bone damage, so

I really wouldn't waste a lot of time if I were you. Once damage is

done, the drugs can't reverse it. What they can do is stop it from

getting worse.

You need to see a rheumatologist as soon as possible. Ask the derm to

make an appointment for you with a rheumy. A dermatologist is not

qualified to treat PA. Discuss the medications with the rheumy. The

ones you should ask about include methotrexate, Humira, Enbrel, and

Remicade. All of these are DMARDs. They usually like to try you on

methotrexate first. It has been used (and studied) for many years.

We take it in much lower doses than they give it for chemo cancer

treatment. The side effects are usually minimal and can be minimized

pretty simply. If it begins to affect your liver, they will take you

off and the liver should recover very quickly.

Remission can be spontaneous but not usually. It is usually drug-

induced and maintained by continuing on the drugs. However, I myself

had several spontaneous remissions lasing many years each time - all

happened before I was actually diagnosed. I would think that by the

time you start to have bone damage, as you do, spontaneous remission

would be most unlikely.

There is no harm in trying supplements. I myself have tried food

eliminations diets, fasting, and almost every supplement that has any

clinical evidence of possibly helping psoriasis or arthritis. None

of this has actually helped me in the long term. Because PA

naturally waxes and wanes (flares and then calms) sometimes something

may seem to help but it is really just the natural ebb and flow of

the disease. The only thing to seriously help me has been

methotrexate, which I had to stop because of liver problems, and now

Humira. The only harm in trying all this stuff is if it delays you

starting DMARDs until after even more bone damage is done. You could

be playing with fire. best regards, sherry z

>

> Hello. I have just been diagnosed with a moderate case of PA.

[Guest guest]

In reading your post I don't think I have understood or accepted or

realized (not sure) the side effects of NOT taking them. We're

moving from one city that has a university teaching hospital to

another one that has one also. I'm calling on Monday to see what

it'll take to get in to see a good rheumy.

I'm wondering if you know if PA is the same as rheumatoid rrthritis

insofar as damage done to the body?

Thanks so much.

[Guest guest]

Hi,

I agree with a lot of your e-mail except for:

Just food for thought -- I took methotrexate for approx 6 years then

all of a sudden I started having side effects from it.

Don't think because you take a drug for a while that it can't become

toxic to your body.

Also, I think I was doing too much because my hands use to flair up

for days then it was gone as fast as it started.

I don't believe drugs had anything to do with it for me, I think my

hands needed rest.

Happy holiday everyone.

SD

>

> Dear " Ok... "

> I am certainly not an expert, but I'd wager my dollars to your

> doughnuts that a " spontaneous " remission without the use of MTX,

> Enbrel, Humira or some other drug is not possible. There are some

> here that have tried some alternative methods such as restricted

diets

> or avoiding nightshades. Some may have experienced some success.

AS I

> understand it, remission with PA is usually a drug induced remission

> and will re-occur when that drug is stopped.

> That said, I would guess that some may have experienced some

remission

> without the use of drugs for periods of time.

> The drugs we take do stop the inflammation, but more importantly

they

> go after the cause of PA, an over active or hyper active immune

> system. These drugs all inhibit our immune system from going into

> over drive. In turn, we have less or no inflammation.

> If your joints are already damaged, the drugs will not reverse that.

> PA can be managed, but not cured. Yes the drugs used to combat PA

can

> be scary. You should not make decisions lightly, but you do need to

> make some choices, lest the PA continue to destroy your joints.

> Many folks here have expressed the same fears about side effects. I

> too was very concerned. Eventually, my concern waned as the pain

grew

> stronger. At one point I figured whatever side effect I might

suffer

> couldn't possibly be any worse than barely walking, and living every

> day and night in pain.

> Happily, today almost 6 years after starting Methotrexate (a drug

with

> many possible scary side effects), I am still virtually pain free,

> have little to no joint damage and lead a normal life. I also

suffered

> ZERO side effects. I know I am fortunate, as many have experienced

> side effects. You need to weigh for yourself the risks and benefits.

> Read, as your rheumatologist questions. But do not let fear rule

your

> decisions.

> Stay Well,

>

>

[Guest guest]

Joanna, thanks for your reply and warning / caution.

Is there any study that you know of online that has some statistics

about the percentage of patients who do not use one of the three

recommended courses of treatment and the kinds of irreversible losses

they sustained as a result? That would be helpful to me if there is

that kind of information available.

Thanks.

[Guest guest]

Hi ,

As long as there is swelling and/or antibodies attacking your body,

there will always be tissue damage. If the disease is mild, your body

may (painfully) continually re-heal itself without intervention.

However, The DMARDs/biologics are the only drugs that work to prevent

damage. If the disease is moderate or severe, it is only a matter of

time before damage will occur. It is a question of when, not if.

I think some google searches of psoriatic arthritis and associated

symptoms might be very helpful for you in the short term to get a

handle on the disease you have. If you are at this group's web-site

(verses the email version), you will notice some links on the left to

polls etc. Those links can also lead you to more answers and more

specific questions. You could, thereby, get to many of the answers you

seek without having to wait the 2 days of turn-around time for your

next answer that may just invariably lead to your next question.

Hope this was helpful.

Brent

/polls

[Guest guest]

Hi,

If you live in Ottawa you may want to check with the arthritis assoc.

at Billings Bridge.*

They would be able to help you.

SD

*See:

http://ottawa.cioc.ca/details.asp?UseCICVw=13 & RSN=156

or

http://ottawa.cioc.ca/details.asp?RSN=156

[Guest guest]

- it could be that your doctor wanted to skip straight to the

biologicals, which are generally considered to be most effective

although also most expensive, because of the fact that you are already

showing changes to the bone. It's my understanding that if bone

changes are already occurring, your case is considered more advanced and

insurance companies are more likely to approve biologicals more

quickly. best regards, sherry z

[Guest guest]

- the nature of the damage is typically different. For example,

the type of damage done to the last bone of fingers and toes in PA is

often of a type known as " pencil in cup " deformity, which is different

from what happens with RA. Rheumys can usually tell by looking at x-

rays which type of arthritis is causing the damage. However, the

damage done by PA can be as crippling as that done by RA. Luckily, for

most of us, PA damage occurs more slowly and hopefully can be prevented

by biological drugs before it even begins. There are cases, though,

where damage happens quickly and progresses very quickly. Some people

on this support group have this type. best regards, sherry z

> I'm wondering if you know if PA is the same as rheumatoid rrthritis

> insofar as damage done to the body?

[Guest guest]

, I agree with Brent that you should get as much info as

possible from your own research. In addition to googling " psoriatic

arthritis " you should also seach on " psoriatic arthropathy "

and " spondyloarthropathy " . Searching on " psoriasis joint pain " may

also yield some additional results. You might also google the names

of some of the drugs we've mentioned.

Since you are interested in trying some supplements you should find

the document at the National Psoriasis Foundation's web site that

lists supplements purported to help psoriasis and shows which have

undergone clinical trials and what the results have been. That list

led me to try 6 different supplements that had at least some

documentation of some efficacy in controlled clinical trials.

Unfortunately, none of them did anything for me, but it was worth a

try. That list also gives good info on the possible side effects of

each of the supplements and warnings about possibilities of

toxicities from food or drug combinations when taking them. (Yes,

natural supplements can have harmful side effects and can interact

badly with food or other substances! Natural doesn't equate

to " safe. " Thankfully, now that some of them are being tested

properly in controlled clinical trials, we not only have more

reliable info about their efficacy but also about side effects and

interactions.) best regards, sherry z

[Guest guest]

You are right about getting the Humira approved. I didn't have to

wait even a day. I haven't picked up the prescription yet, though.

--- In , " S. Zorzi "

<<It's my understanding that if bone changes are already occurring, your case is

considered more advanced and insurance companies are more likely to approve

biologicals more quickly. best regards, sherry z>>

[Guest guest]

Joanna, Thank you so much for your reply. I know I will be

re-reading this and the other replies as well as the testimonies of

others for a quite a while. It's hard to digest it all in one

sitting.

[Guest guest]

Brent,

Your reply was very helpful. Thanks so much!

[Guest guest]

Sherry, thanks for that explanation. Wow. Sobering.

--- In , " S. Zorzi "

<< - the nature of the damage is typically different. For example, the

type of damage done to the last bone of fingers and toes in PA is often of a

type known as " pencil in cup " deformity, which is different from what happens

with RA. Rheumys can usually tell by looking at x-rays which type of arthritis

is causing the damage. However, the damage done by PA can be as crippling as

that done by RA. Luckily, for most of us, PA damage occurs more slowly and

hopefully can be prevented by biological drugs before it even begins. There are

cases, though, where damage happens quickly and progresses very quickly. Some

people on this support group have this type. best regards, sherry z>>