RE: Son's diagnosis confirmed.

[Guest guest]

If you have insurance, the biologics have co pay assistance, but you

must have some insurance. Mine dropped from 2000.00 a year to 5.00

month. Enbrel worked well, but did not clear the p areas, worked for

pain though. Humira totally cleared my p, keeps the pain at bay, I take

no other medications for pain whatsoever! Well worth it, since I am a

nurse and was beginning to not be able to even pull up medications from

a vial into a syringe. Biologics have been a life changing medication

for myself, I pray it continues for as long as it can.

Karrh, RN

[Guest guest]

Hi ,

I was on Humira for 6 months with no luck, now I'm on Enbrel and hoping

it will work, it has cleared up almost all of my P but not my pain. I have

to take Percocet, Diclofenac NA for swelling and pain, My Rheumy tried

Methadone I had a bad reaction now they want to try Arava (as long as my

liver panel is good) I can barely wash myself, I can no longer work I have

to inject myself monthly with Vit.B; it is quite a job. I am so happy when I

read that others like me have better results, it gives me hope that there is

something out there that will work for me I just have to hang in there.

Lori in AZ

[Guest guest]

I am glad to read that you have been able to get to a rheumatologist. Perhaps

your rheumatologist can help him find a treatment regimen that will keep

destruction and pain at bay. The biologics seem to offer the most hope at

present, but I am hopeful that even better treatments will be available within

the next decade.

Let go of the guilt if you can. Guilt will do neither you nor your son any

good. Yes, the heretibility factor is there, but he may have gotten it anyhow -

even if you didn't have it. Just love him and look for ways to help him

understand what he is dealing with - without overwhelming him. If he can learn

to meditate, and perform moderate exercise everyday, it can be very helpful. I

can't take biologics nor the more powerful NSAIDs so I meditate and exercise as

best I can.

If he can find other people that are his age to discuss his PA issues with, it

can also be helpful.

Best wishes to you and your son & Happy New Year to you both.

Take care, Brent

[Guest guest]

I first got PA when I was about 21. I had a bad case of strep and it triggered

the pa. Enbrel has worked great and a healthy lifestyle can't hurt. Hang in

there, and prayer definitely helps!

>

> Hello,

> I had written previously that my son possible developed P and PA all at once.

We saw the Rheumy and the diagnosis was confirmed. He is 19 and it hit like a

freight train. I developed P as a preschooler and PA in my early teens. My

symptoms progressed overtime and obviously his did not. He is NSAIDs,

Azulfedin, TB testing this week, and hopefully starting a biologic soon, if

insurance will cover it.

>

> *Yes, strep throat was probably the trigger, per the Rheumy.*

>

> It is tough watching my child suffer so much. What I wouldn't give to make

it all go away. I considered passing it on before having kids and seriously

thought they never would develop it. Feeling tremendous guilt.

>

> My other son has a swollen painful ankle, please pray for my family.

>

> Thank You for Listening,

> Eileen

>

[Guest guest]

Aron thank you for your response. We started him on Humira 2 weeks ago. The

day after his first injection he was feeling better, his personality started

coming back, and now he is SO much better. I felt guilty for " giving " him PA.

Now I choose to look at it as I am better able to understand what he is going

thru than others and can give him advice. (When he wants to hear it!)

>

> I first got PA when I was about 21. I had a bad case of strep and it triggered

the pa. Enbrel has worked great and a healthy lifestyle can't hurt. Hang in

there, and prayer definitely helps!

[Guest guest]

Excellent attitude. When I was diagnosed with PA, I asked my son, " Now aren

t you glad you're adopted? " He laughed and said, " Well, I've always liked

the idea. Now I'm ecstatic. " LOLOL

Keep in mind that this is one of many diagnoses. I have Dupytren's Disease

and Dupytren's Contracture, Asthma, Mitral Valve Prolapse, Osteo and PA,

eczema and psoriasis, Epstein-Barr, tinitus, enough? There is more but

now my carpal tunnel is acting up....

" Debra " <Merribuck@...>

[Guest guest]

Debra,

Which diagnoses came first? I was diagnosed in high school with Epstein-Barr,

fast forward 20 years, and I was recently diagnosed with PsA. I'm trying to

understand my new diagnosis, which isn't easy.  Now that I have an autoimmune

disease, am I more likely to develop more health problems?

Holly

--

[Guest guest]

Debra, Thanks for sharing, from a fellow " laundry lister! " -Eileen

[Guest guest]

In 2005 I began feeling very ill. My mouth was filled with blisters and

ulcers, even to my esophagus and tonsils. My joints were swollen and

painful, my skin a bright red, especially on my face, and the psoriasis

began to manifest. I went from doctor to doctor, but no one could tell me

what was wrong.

One evening, a story came on the news about this doctor who was " rebooting "

his patient's immune systems by having them try a new diet. For three weeks

they ate absolutely no animal protein.

Week one was raw vegetables, week two was blended vegetables and fruits and

week three was cooked vegetables and fruits. I figured, " Why not give it a

try? "

The one thing I loved the most was the hardest to give up. I loved my ice

cold glass of milk every morning. I actually had a milk addiction, I think.

I would dream about chugging cold glasses and wake up in the early hours

only to go downstairs and chug down a glass. But, I needed to try something

Now my mouth was raw, so I had to skip the raw vegetables. I made myself a

large pot of vegetable broth so that I would know I was getting the

nutrients I needed. My only beverage was ice water.

My mouth began to heal within days. My joints began to go down and the pain

to recede. Week two found me eating baked sweet potatoes (no butter, of

course), roasted carrots and potatoes, asparagus. I continued to get better

By week four, I was a new woman. I celebrated in the only way I knew how.

I drank a 20 oz. glass of delicious, cold, frothy milk.

BAM!

Everything came back within 24 hours!

So, now I know that I'm allergic to dairy. Enter the allergist.

While testing me for other food allergies (I'm also allergic to sesame), she

discovered that I had Epstein-Barr. She believes that it is the EB that

kicked in the food allergies. My grandfather was a fifth generation dairy

farmer, for heaven's sake, and I'm the only member of about 500 relatives

with this allergy. Why me? But there it was.

Now, staying off dairy helped the blisters and ulcers to go away, but the

psoriasis became worse and worse to the point where it covers most of my

body. I bleed constantly from my clothing touching my skin...or I did until

I started the prednisone two weeks ago.

Okay, I know this is long. I hope it's helping you....anyway. My blood

pressure began to soar and we couldn't get it to go down even though I'm on

two meds for it. So I went to a specialist. He took one look at me and

told me that I have psoriatic arthritis and referred me to my new, wonderful

doctor - a rheumatologist. The tests came back positive for PA and I found

out, additionally, that I am a carrier of Hemochromotosis.

So that is my journey. My father, by the way, had very bad psoriasis and we

are assuming PA as well. I'm having my cousin go to my doctor, as I believe

that she also has PA and was misdiagnosed with Ostler. I also believe that

she may have active Hemochromotosis, as every time she has to have surgery

(she has/had Crohn's) they have to postpone because her iron levels are off

the charts. That's what Hemochromotosis does to you - it deposits iron into

your liver and heart and is fatal if not treated.

There it is.....at least I'm not bored.

[Guest guest]

LOL Yeah, the list is getting too long and the tale boring.

-- [ ] Re: Son's diagnosis confirmed.

Debra, Thanks for sharing, from a fellow " laundry lister! " -Eileen

[Guest guest]

I really appreciate the time you took to explain everything.  I don't understand

how you can drink milk then suddenly develop an allergy to it. I too LOVE my

milk, so I'm hoping I won't have to give that up, but I guess you'll do what

needs to be done to feel better. I have had some form of pain or discomfort

since Oct. and a middle finger that will not go down. I asked my rheumy about

changing my diet, but he didn't seem too convinced. I was glad to get the

diagnosis and I think he really knows what he's doing, however, I expected more

suggestions for things to do or change that will help.  That I found

disappointing. I still am really confused about PsA. I read other people's story

and they all seem to have a long list of other health problems.  They don't

usually say how long they've had the disease either. It doesn't seem like their

is a consistent path the disease takes. I will keep reading/learning and

hopefully soon will have a

clear understanding of what I need to do to feel better.

Holly

[Guest guest]

Hi, I was also misdiagnosed twice by two different doctors before receiving the

PsA diagnosis in 2009. In April 2002 I was told I had Osteoarthritis, in May

2005 I was diagnosed with Fibromyalgia. So the PsA has had many years to run

wild and do all sorts of irreversible damage. Lori in AZ

[Guest guest]

Hi Holly,

As you have an over-active auto-immune system, you will not be more likely to

develop colds and the like. I have found the converse to be true. If you take

some drugs (like biologics) there is an increased chance of infection/disease

because those drugs knock your auto-immune system down. Other drugs (like

methotrexate) can be hard on your liver. prednisone can lead to osteo-arthritis,

weight gain and PB issues. NSAIDs are hard on many people's heart, BP and

circulatory system.

Quality of life and risks associated with the various treatments are what you

and your rheumatologist will weigh when considering those treatments. Keep your

eyes wide open for what is befalling you and keep your spirits up. It is much

better (the suffering is much less) for people oat this time than it was for

psoriatic arthritics but a decade ago.

Generally, health problems directly associated with the PsA are those that come

from fatigue and being less mobile. PsA can affect virtually any joint,

skin-like structure and/or connective tissue. The list of possible body parts

that could be affected is very long, but it is a very individual disease in the

way it works. Most people do lead a modified but fairly normal life. For many,

the biologics are truly a gift that allows them to lead a normal life. Be good

to yourself and your body. Eat healthily - lots of vegetables - and fish

(especially cold water fish like salmon and trout) are best for me. Avoid coffee

and alcohol. Some people have PsA go into remission - never to return.

All the best,

Brent

[Guest guest]

Hi Holly,

I had Epstein-Barr - got it in college. Epstein-Barr Virus is the most common

cause of infectious mononucleosis. It is so common that by age 50 pretty much

EVERYONE in the population will test positive for it. If it develops later in

life (>18yo) then it can be a significant illness. Some studies have linked it

to Chronic Fatigue Syndrome. I got it several years AFTER my PsA developed.

Understanding/accepting a PsA diagnosis takes time, don't rush it. Write down

your questions and ask this group and your doctor. Don't hesitate to make an

extra MD appointment just to ask those questions.

People with autoimmune disorders like PsA sometimes to seem to develop other

autoimmune disorders. My " laundry list " is asthma and endometriosis. I have NO

food allergies. However some do not!

Also remember, your age, previous health, and family history matters. I will

most likely develop heart disease but it is probably unlikely to PsA (and

everything to with family history of stroke before age 40). I had a family

history of asthma and endometriosis too - so it is pretty hard to point to the

PsA as the culprit (or maybe I can just blame it all on the asthma?).

Your own immune system is hyperactive and it is attacking joints (and most

likely skin since it is psoriatic). That is why many treatments involve calming

down the immune system. Some people do report a slight increase in infection

when on some of the medications but since the goal is to get your immune system

to a more " normal " level, it isn't as problematic (say compared to cancer).

Trying new diets may help you - several people have found success (I have not).

Many of the changes you make will give you the control the disease pulls away.

Keep a log of your daily activities, food, and pain levels. It can be very

enlightening and help you figure out what things you can add/subtract to make

your life more enjoyable!

[Guest guest]

My doctor thinks that it all started with the Epstein-Barr. I don't

understand the milk allergy either, especially since I am primarily of

Northern European decent, although I am 1/8 Cheyenne and 1/32 Seneca...maybe

great grandma did this to me. LOL

I agree with about diet. Since my food allergies surfaced, I have

been very, very strict about not eating any processed foods. Since I love

to cook, this is no hardship, and in fact, my son and I are now writing a

cookbook where we convert classics, like Fettucini Alfredo to dairy free or

at least free of cow dairy. I can eat goat and sheep-milk based products.

I eat lots of vegetables and fruits, fish and chicken and very, very seldom

eat any form of red meat. I have not been in a Mc's, for instance, in

over ten years.

I walk every day, except in weather where it will aggravate my asthma. Then

I use the treadmill....boring!

[Guest guest]

,

What a great reply to Holly.  I'd like to add my 2 cents on one thing. " People

with autoimmune disorders like PsA sometimes  seem to develop other autoimmune

disorders. "  Autoimmune disorders are classified by body part affected because

immunology is a very recent field of study. The problem is in our immune system

so it is common for our hyperactive immune systems to simply go after another

body part / system as well as our joints. I agree " That is why many treatments

involve calming down the immune system. " That is the mindset I use when in a

flare...think about calming your whole body down...stress hurts us.

Janette in Indiana

[Guest guest]

Hi, I think a cookbook is a great idea. I watch what I eat for the most part, I

do cheat more than I like and when I overdo it I feel it by getting horrible

stomach pain for a few days and I nogice an increase in joint pain

[Guest guest]

Hi Debra, I think a cookbook is a great idea. I would like to say that I have my

choice of foods under control but I find I crave the food that is bad for me to

much. I eat the " bad " food way more than I should and when I overdo it I get bad

stomach pain for a week or so along with increased joint & back pain. I wonder

if anyone else has the same problem? The docs can't find any reason for my

random stomach pain & they don't think my diet & PsA are related, I know they

are wrong. Anyone have any tips on getting past the " bad " food cravings?

Lori in AZ

[Guest guest]

Hiya,

Thanks for the reply. I am well aware about the stress component- I am working

to get my stress levels down because I'm in the middle of the worst flare I've

had since being diagnosed.

<<The problem is in our immune system so it is common for our hyperactive immune

systems to simply go after another body part / system as well as our joints. I

agree " That is why many treatments involve calming down the immune system. " That

is the mindset I use when in a flare...think about calming your whole body

down...stress hurts us.

>>