Re: I suspect Psoriatic Arthritis

[Guest guest]

Though none of us (even if we were doctors) could diagnose you for psoriatic

arthritis, I believe that I can speak for just about everyone here by saying our

thoughts and hopes are with you. Whatever pain and loss of mobility that is

befalling you, know that others here understand your situation. All of the very

best to you and your rheumatologist in finding a course of treatment that works

for you. In the near term, the next 2 weeks, if you are not already meditating,

perhaps you can see if meditation can help. It helps me get through the

roughest times.

Take care, Brent

-

[Guest guest]

Good lord, she's giving you tylenol for the pain???? I don't think I'd

bother taking it as tylenol probably won't do a thing for you. It's

good she's got you on diclofenac, which is at least a decent

anti-inflammatory, though I suspect newer ones may be more powerful.

I am surprised your inflammation tests came back negative, honestly,

although I don't think it's unheard of. But in the meantime, you need

to get through the next two weeks. I went through about 6-7 months of

pain before getting to a rheumatologist and getting diagnosed properly.

I'd had a lot of neck/shoulder and hip pain for some time, and then my

foot blew up to the point where I could no longer get shoes on - it was

my achilles tendon that was most troublesome, though I also had trouble

with a couple of toes and yes, the outside of my foot.

Nothing that you can get over the counter will take the pain away

completely. However, you may find some or all of the following helpful;

certainly I did:

* Ice the achilles tendon three times a day

* Topical creams (e.g. " icy hot " , or ones containing capsaicin) on

the most painful spots

* Find a massage therapist

* Find an arthritis water therapy group (check your local YMCA)

* Consider finding a physical therapist to give you specific

exercises to keep as much range of motion and function as you can

* Take ginger capsules - double the recommended dose

* Take turmeric/pepper capsules - double the recommended dose (you

need the pepper for the body to absorb the helpful compounds in the

turmeric)

* Take 6000 mg of fish oil every day - try to take ones that have

been processed to remove any impurities

* Try cutting out any or all of the following:

* All dairy

* All animal protein (including dairy - I've done this and blog about

it at www.roadwarriorvegan.wordpress.com)

* All gluten (i.e. wheat - I didn't do this, but I've heard reports

that some find it useful)

* Most vegetable oils (use olive or canola oil instead - check Dr.

Weil's website for information on the inflammatory impact of omega 6

fats which are found in large quantities in most vegetable oils)

* Move as much as you are able - even just gentle stretching. Take a

hot bath beforehand to help relax the muscles

More than anything, know that many people with PsA do pretty well once

they're on the right medication. I was put on Celebrex, which reduced

the pain and meant I could do things like get out of bed a little

quicker (it was taking me 10 minutes because of the pain). My

rheumatologist added methotrexate (8 pills/week) which has a frightening

list of side effects, none of which I've experienced. Remember to take

your folic acid if you are prescribed MTX - it will definitely reduce

the side effects. MTX allowed me to do most day-to-day activities with

not a huge amount of pain, though I was still fatigued.

But the life-changing medication for me has been Humira. Before going

on Humira, I figured I would be disabled within about 10 years, even

with the celebrex and MTX. After Humira, I feel 95% normal. Before

Humira, I didn't think I could even work part-time. After Humira, I'm

working full-time and then some. The listed side effects and

complications for Humira are terrifying, but frankly I've been just fine

on it. I tend to get colds a little more often and I get very fatigued

if I'm fighting something (e.g. this week I've been battling a cold and

I need 9-10 hours of sleep a night). But other than that - nothing.

Many people on this list that post are those with the most challenging

and most unresponsive forms of PsA; perhaps with other complicating

conditions also. But please know that there are many on this list (and

not on this list) who are out there and who are doing just fine.

Sorry this was so long! I feel for you - living with the pain is just

awful, especially when there's no hope in sight. You may not be able to

get onto Humira or another biologic for some time - most insurance

companies just won't pay for it until you've tried MTX for 6 months or

so. Even without a biologic, there are medications that will help you

feel better, if not completely like your old self. Certainly Celebrex

and MTX gave me about 70% of my " old self " back, but it was Humira that

gave me my life back.

Good luck and let us know how it goes!

Debbie

[Guest guest]

There is hope - I used to be in horrible pain all of the time (and many sausage

digits on my right foot, in addition to many other joints being affected) and

exhausted. I can now do low impact workouts and the fatigue is managed. You

probably won't go to 100% of your former self (based on my experience), but you

can hopefully get close. I am on Enbrel and Naproxen, but you'll find the drug

combination best for you with your doctor. We all respond differently, and I

wish you well the next couple of weeks - get plenty of rest, try to stretch

some, take the anti-inflammatory, and know better days will be here soon...

[Guest guest]

With the right meds., do you think I'll regain use of my finger and no longer

have swelling?

[Guest guest]

Thank you for your kind words.

From: skrewtz <brentherman@...>

Date: Tuesday, January 11, 2011, 9:43 AM

Though none of us (even if we were doctors) could diagnose you for psoriatic

arthritis, I believe that I can speak for just about everyone here by saying our

thoughts and hopes are with you. Whatever pain and loss of mobility that is

befalling you, know that others here understand your situation. All of the very

best to you and your rheumatologist in finding a course of treatment that works

for you. In the near term, the next 2 weeks, if you are not already meditating,

perhaps you can see if meditation can help. It helps me get through the roughest

times.

Take care, Brent

[Guest guest]

Debbie,

Thank you for all of the great information.  I'm trying to learn as much as

possible about PsA before going to the rheumatologist. From what I've read,

there aren't any labs that show PsA.

 

I must admit that I don't have good comfortable shoes, so I bought a pair of

Easy Spirits (after trying 5 different brands) and today feel 85% better at the

end of the day. I am sore, but it is tolerable. I was beginning to wonder if I'd

be on disability before summer but after wear good shoes along with the meds.

I'm on, I do have some hope now.  Can't wait until my appointment though. 

 

Thanks again for taking the time to reply to my email.  I really do appreciate

it.

Holly 

[Guest guest]

I have psoriasis since about 8 years and about 5 years ago psoriatic arthritis

started. In the beginning it was just couple of toes. My rheumatologist wanted

to start methotraxate but because i scared the side effects and my toes weren't

so bed i didn't start. Btw I am a GP. Instead i stopped

meat,chicken,coffee,smoking,alcohol,all gased softdrinks and started to eat as

much as healthy and naturally.I had quite bad nails because of psoriasis than

but in three months after i started my diet i had beautifull nails!! Even as a

medical doctor the results were shocking for me ! And without using any

medicine!

After 3 months i started alcohol(99% i drink wine) and coffee again but the rest

never again. I haven't drink coke or eaten chicken at all since 5 years.

After i started alcohol and coffee and also the rest of diet was little bit

loosened (more dairy products and nightshade vegies) i got back again lesions to

my nails. But mostly I could live normally my life.Problem was i was drinking

lots of wine(average 1 bottle almost every day wahen i was drinking) and

coffee(5 to 20 cups a day with lots of sugar in it).

Than I had achilles tendon pain and it was so bad that i had difficulties to

walk. I again visited my rheumatologist and again got methotraxate and again i

didn't use it.

Instead i bought a juice blender and had a juice fast for 6 days at home.Again a

miracle! So painful achilles tendon was without any pain after 6 days of just

juice and water fast! Last two years I had three times the same thing. I

loosened my diet and drunk lot of alcohol and coffee and my nails and achilles

startéd and than i started a juice fasting and all gone in 6-7 days.First one i

did at home by myself but next to juice fastings i did in a detox center where

they make also colema, massages, sauna, yoga and etc.

About one month ago i was travelling and suddenly i got a very painfull TM jaw

joint. It was so bad (and still bad) that o couldnt bite anything and couldnt

even open my mouth properly. I visited another GP in new zealand and he said he

is sure it is psoriatic arthritis and gave me voltaren.We couldnt find any

available rheumatologist because it was before christmas. I came back home and

started again a juice fast at home.Today is my sixth day.Yaterday I met my

rheumatologist and he said it is not PsA but some dental problem.It was really

good news for me because I was almost ready to start medication. This time even

he didn't recommend medication because evrything was under control!

I sign everything what Debbie recommends about lifestyle and diet. Additionally

I recommend self made detox cures or just go to one of these detox centers if

you are more lasy,have money or just need right environment for it. My personal

experience is if you make your freshly squized juices at home and drink enough

water and vitamins it is almost same result.Might be bowel cleansing also helps

the effect faster...

My experience is if you can change your lifestyle and diet, get rid of any

medication and artificial food, lessen stress you can cope not only with

psoriasis but also with many other diseases. My weakness is wine but when I

consider the side effects of all drugs i prefer a diet to medication.And don't

forget to get enough vitamins, especially B12 and D vitamin and other natural

supplements.At least you might gain years of better quality without

medication...

[Guest guest]

I am a bit late chiming in here but had to as I remember the days you are going

through. I would suggest tart cherry extract. It is amazing how it helps with

the pain. You can get it at the health food store. Also, try an elimination

diet to identify foods that make your inflammation worse. If I eat bread I will

have pain in my feet the following day. Chocolate is also a no-no for me.

Moderate coffee is ok. Sugar in very small amounts seems ok. Every one is

different but it has been worth it to me to modify my diet. MD's will usually

say diet doesn't help but they are wrong in some cases.

Exercise has proved to be essential for me. I do it everyday. It helps with

the pain, increases my energy level, improves my mood and keeps my weight where

it needs to be. I know it seems impossible to find the time (I have 5 kids and

we homeschool) but it is just as important as taking my meds. I want to be

around for my grandkids and able to be active with them.

Also, I would look into antibiotic therapy. My MD would not do it on me because

I was diagnosed a couple of years after onset of symptoms. Some believe that

antibiotics will help if taken early. If you google it you will find a lot of

info. There have even been medical studies which you can show your MD if it is

something you want to try.

To give you hope. There were days when I didn't know if I could go on with the

pain (a new joint every other day), fatigue, weakness, brain fog, swelling etc.

It can get better. I am doing very well on meds, diet and exercise. Keep in

touch with the group. We are here for you. God bless, Patty

[Guest guest]

Hi, I'm adding my 2 cents about diet and exercise as well. I have along with

the PsA, Irritable Bowel Syndrome. I imagine many of us have lots of

inflammation issues that are part of the PsA. Anyway, I too have to watch

everything I eat (I do go off my healthy eating at times) I feel the pain

shooting through my entire abdominal area the same day and the day after I

stray.

Regarding exercise, I have just purchased The Resistance Chair ( it is a

seen on tv item). I have been looking at buying this chair for about a year

and I have been watching customer comments to see if there is any problems

or bad reviews. I have not seen a bad review for this chair yet and not only

is it geared for seniors but it is also recommended for people with chronic

pain and arthritis. I love the chair as much as anyone who isn't crazy about

exercise can. I just started using it about 2 weeks ago and I've lost 2

pounds. Something to keep in mind when you need a way to exercise

low-impact.

Lori in AZ

[Guest guest]

Thank you, Lori, for the information. My first appointment is just days away. 

There were days I thought I'd go in a wheelchair, but I have tolerable days and

just plain bad days. The Achilles tendon and foot pain sometimes make it

extremely difficult to walk. Hopefully, better days are on the way.

Holly