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Hi Jan,

Pain can be debilitating to live with every day, and I'm really sorry

you're hurting.

LDN can decrease pain, but it takes time, persistence, and optimism for a

long-term future less dependent upon ever stronger drugs.

Pain from inflammation can also be decreased by increasing Omega oil

intake, but it's a slow process and must be under the care of a health

professional due to unknown contraindications with medications,

supplements, and certain health conditions (omega oils have potential to

thin the blood - so there's benefits and risks).

Kind regards,

Cris

PS All stories have value. If you'd like to record your story in detail as

a case study for sharing, in the hope it will add to the collective

knowledge and may benefit others, I'd be happy to help.

6.1. Re: Pain

Posted by: " Jan Goodale " jmn@... fibrofan

Date: Sun Apr 26, 2009 10:12 am ((PDT))

Hi Bren and everybody,

I am wishing everyone good luck and farewell - I am off the LDN and back on

the FMS protocol. when the 5th nite came and I took LDN, and it finally

gave me some relief - 2 hours - I decided this is not for me. But I am

glad for those of you who are using this successfully for FMS.

i HAVE tried before, and was hopeful this time it would work for me, but

can't handle it any longer and will be back on my old FMS stuff. drugs for

pain and sleep.

Jan Goodalee

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Hi

Ive completed about 3 weeks now at 1.5. MY

pain levels are still way higher thsn before with significantly greater

tightening and pain in legs and arms. Also in recent days I have been so groggy

and tired and I seem to need the loo so much more. I am determined tokeep gpong

for 3 month if I can manage it. If I could just get a nights sleep that didn’t

involve completely seized legs and accompanying pain and toilet trips.

I spoke with Dr Lawrence – lovely guy

– and have started on selenium,vit D copper zinc MSM omqga 3 and from before

diclofenac and occasional paracetemol for pain.

I tried 5htp one night and felt drugged

all the next day. Am considering other sl;eep stuff but worry about the impact

..e.g. epam.

Someone suggested DPhen. For the pain but

I cant get here in Ireland/UK.

Keep going Carolyn and good luck you Jan.

Nuala RA 4 years

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of sundaycarolyn

Sent: 26 April 2009 18:46

low dose naltrexone

Subject: [low dose naltrexone] Re:

Pain

Hi Jan,

I am on my 6th night too, and I am going to push through it for a full month

(fibromyalgia and transverse myelitis).

I had a little bit better sleep tonight, so I am hoping that I am about to turn

the corner. The pain is awful, but I am hoping that is an initial reaction to

it.

The last time you tried, how long did you give it?

Also, I am only on 1.5mg, and i noticed you were on the full dose. Did you try

ramping up before?

Carolyn

> >

> > I am taking LDN 4.5 at 10 pm and started 4 nites ago. nite before

last it worked great, last nite I didnt get to sleep at all and was terrible

pain - which has continued through this day. I dont have any opiate drugs I am

taking, so i am wondering what could be going on.

> >

> > I AM taking a supplement called 5HTP, which raises serotonin levels,

like an antidepressant does. I take 400 mg. divided into 100 mg. 4 times/day. Is

it possible this could be doing something that would cause this reaction?

> >

> > Would appreciate any comments re: this problem.

> >

> > Jan Goodale

> > jmn@

> >-----------

>

> My pain increases significantly during certain weather patterns. Did your

area have rain coming in, high humidity?

>

>

>

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Guest guest

My bladder function seemed to improve only after about 6 weeks, but what a

bonus! Don't give up. Lucretia

>I seem to need the

> loo so much more. I am determined tokeep gpong for 3 month if I can manage

> it. If I could just get a nights sleep that didn't involve completely seized

> legs and accompanying pain and toilet trips.

>

> I spoke with Dr Lawrence - lovely guy - and have started on selenium,vit D

> copper zinc MSM omqga 3 and from before diclofenac and occasional

> paracetemol for pain.

>

> I tried 5htp one night and felt drugged all the next day. Am considering

> other sl;eep stuff but worry about the impact .e.g. epam.

>

> Someone suggested DPhen. For the pain but I cant get here in Ireland/UK.

>

> Keep going Carolyn and good luck you Jan.

>

>

>

> Nuala RA 4 years

>

> _____

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of sundaycarolyn

> Sent: 26 April 2009 18:46

> low dose naltrexone

> Subject: [low dose naltrexone] Re: Pain

>

>

>

>

>

>

>

>

> Hi Jan,

> I am on my 6th night too, and I am going to push through it for a full month

> (fibromyalgia and transverse myelitis).

> I had a little bit better sleep tonight, so I am hoping that I am about to

> turn the corner. The pain is awful, but I am hoping that is an initial

> reaction to it.

> The last time you tried, how long did you give it?

> Also, I am only on 1.5mg, and i noticed you were on the full dose. Did you

> try ramping up before?

> Carolyn

>

>

> > >

> > > I am taking LDN 4.5 at 10 pm and started 4 nites ago. nite before last

> it worked great, last nite I didnt get to sleep at all and was terrible pain

> - which has continued through this day. I dont have any opiate drugs I am

> taking, so i am wondering what could be going on.

> > >

> > > I AM taking a supplement called 5HTP, which raises serotonin levels,

> like an antidepressant does. I take 400 mg. divided into 100 mg. 4

> times/day. Is it possible this could be doing something that would cause

> this reaction?

> > >

> > > Would appreciate any comments re: this problem.

> > >

> > > Jan Goodale

> > > jmn@

> > >-----------

> >

> > My pain increases significantly during certain weather patterns. Did your

> area have rain coming in, high humidity?

> >

> >

> >

>

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Guest guest

Thanks . I think I am becoming aware that

the thing I fear is that the LDN might be making my condition worse and that

this worsening may never correct. However in for as penny in for a pound and

somehow I will keep goin for 3 month and see what might change.

Am wondering about how to get a Lyme test

in Ireland.

My rheumatologist laughed when I suggested the possibility. When I was electro

dermally screened a few years ago the homeopath did not find Lyme and he is

used to curing it using homeopathic nosodes.

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of lucretia1419

Sent: 29 April 2009 21:51

low dose naltrexone

Subject: [low dose naltrexone] Re:

Pain

My bladder function seemed to improve only after about

6 weeks, but what a bonus! Don't give up. Lucretia

>

>

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  • 2 months later...
Guest guest

When I'm at work I take Tramadol and when I'm at home I take percocet. I'm not

allowed to take narcotics at work since I may have to drive and I work with

developmental disabilities. You never know when they will go off or have a bad

day.

[ ] pain

Just curious of what you all are taking for pain

Thanks so much

Kathy

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  • 4 weeks later...
Guest guest

Can you describe the pain, do you feel it constantly or is there anything that aggravates the pain, like is it a change in position, change in temperature / season, change in diet?Have you already consulted a doctor about the pain, more so, the doctor that did the implantation?From: patdavis63 <kiadavis@...>Subject: PAIN Date: Saturday, July 25, 2009, 10:17 AM

 

Hi:

Is there anyone out there who has severe breast pain. I had silicone for 10 years with no problems till they found them leaking. They then put saline implants under the chest wall unlike silicone on top of chest wall. Immediately after saline was put in I had pain. It got worse and worse till I could only get relief by lying down. Narcotics was the only thing that helped. I am off that now but don't have a clue what to do about the debilitating pain. Has anyone been through this and WHAT did you do? Thank you. Any ideas what is causing the pain and where to go to get help. I have lost my life to a couch!

THANK YOU.

PAT

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Hi Pat,

Is your pain strictly in the breast area? Or do you have pain all over

your body?

There are many, many women on this group who have suffered from

debilitating pain. I've known women who have been nearly addicted to

the pain pills, and I've known personally a woman who died from pain

medication overdose. So I am really glad to hear you are off the pain

meds.

I also know of a woman who got off her pain meds and is pain free now.

I will see if I can find her step by step in the archives. Her name was

and it was a number of years ago.

Moving is the best thing you can do to keep the pain from becoming

horrendous and chronic. As much as it hurts to move, you must keep your

body and muscles limber. Deep tissue massage is painful but good for

this, and if you can get on a regular massage schedule, you will be able

to keep those muscle tissues from becoming even stiffer.

I believe Rogene has written in the past about her massage experiences,

and how the therapist could actually feel a difference in her muscle

tissues over time with consistent massage. She described it as her

muscles going from being " crunchy " to more supple and smooth. This

might help give a good image in the mind of what you are dealing with!

Rogene had to take a pain pill before massage to get through it. But,

she was able to recover well and even traveled across country doing

square dancing! So, keep moving, even if it hurts!

One more aspect of your healing that can help is in the idea of

alkalizing your body.

There is even a book called, " Alkalize or Die! " Our bodies naturally

progress toward a more acidic state as we get older.

This will result in arthritic bones and muscles. If you eat 80% raw

foods and only 20% cooked foods, this will help alkalize your

body....you can find lists of alkaline and acidic foods on the net to

help guide your choices, and we also have a list in our files.

Hope this helps!

Patty

>

> Hi:

> Is there anyone out there who has severe breast pain. I had silicone

for 10 years with no problems till they found them leaking. They then

put saline implants under the chest wall unlike silicone on top of chest

wall. Immediately after saline was put in I had pain. It got worse and

worse till I could only get relief by lying down. Narcotics was the

only thing that helped. I am off that now but don't have a clue what to

do about the debilitating pain. Has anyone been through this and WHAT

did you do? Thank you. Any ideas what is causing the pain and where to

go to get help. I have lost my life to a couch!

> THANK YOU.

> PAT

>

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Guest guest

> >

> > Hi:

> > Is there anyone out there who has severe breast pain. I had silicone

> for 10 years with no problems till they found them leaking. They then

> put saline implants under the chest wall unlike silicone on top of chest

> wall. Immediately after saline was put in I had pain. It got worse and

> worse till I could only get relief by lying down. Narcotics was the

> only thing that helped. I am off that now but don't have a clue what to

> do about the debilitating pain. Has anyone been through this and WHAT

> did you do? Thank you. Any ideas what is causing the pain and where to

> go to get help. I have lost my life to a couch!

> > THANK YOU.

> > PAT

> >

>

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Guest guest

Excellent info Jeanne! Thank you so much! Castor oil is definitely a cheap

therapy worth investigating.

Keep in mind that castor oil stains....use it very carefully around your sheets

and bedding.

Patty

> > >

> > > Hi:

> > > Is there anyone out there who has severe breast pain. I had silicone

> > for 10 years with no problems till they found them leaking. They then

> > put saline implants under the chest wall unlike silicone on top of chest

> > wall. Immediately after saline was put in I had pain. It got worse and

> > worse till I could only get relief by lying down. Narcotics was the

> > only thing that helped. I am off that now but don't have a clue what to

> > do about the debilitating pain. Has anyone been through this and WHAT

> > did you do? Thank you. Any ideas what is causing the pain and where to

> > go to get help. I have lost my life to a couch!

> > > THANK YOU.

> > > PAT

> > >

> >

>

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  • 1 month later...

,

May I know where do you have physical pain and since when? Thank God I don't

experience any pain (except from one of my ankles that have been twisted

multiple times) but, numbness. I was wondering if you have been always in pain

or when did it start?. I have CMT and also, my two boys. I got it from my

father.

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Betania,

I do not have pain from CMT either. The bottom of my feet burn at random and I

have easy solutions for that. I've had this burning since childhood so early on

I accepted it and found what works for me. Several years ago, one night while

reading, I felt this electric type jolt run up and down my left arm. This

happened sporadically, unpredictably for 6 weeks or so, and upon consultation

with my doctor, I took Neurontin for about a year which knocked that pain out

cold. It hasn't returned.

Gretchen

>

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Hi Betania,

 

I have many types of pain, nerve, joint, back, skin, etc.  I've joked before

that the only part of me that doesn't hurt is my shoulders.

 

I've always been weak.  Joint issues/pain began when I was about 10 years

old.  In the earlier years, it was mostly ankle/knee pain.  I started on

anti-inflammatories when I was about 25 years old.

 

My hips are degenerating.  Hip pain started when I was in my mid-20's.  Had one

hip replaced when I was 38, when pain reached intolerable level.  Doc said

cartilage was nearly gone and hip was 'bone on bone' about the size of a

quarter.  Hip replacement was wonderful and made the hip painfree for many

years, but in the last two years severe hip pain has returned.  The other hip is

degenerating and painful.

 

The CMT nerve pain (burning/irritation/bug bite feeling) started in my legs in

my late 30's, spread to arms in early 40's.  Joint pain in wrists

and fingers started in early 40's. 

 

I have scoliosis and degenerative disc disease in lower back and neck.  The

lower back pain that radiates down my leg is the most challenging physical issue

I've faced.  It started in July 2007, age 43.  The pain is severe and

significantly limits what I can do.  It's an L4/L5 issue.

 

When I try to be active, I get total body skin soreness (like having the flu),

nerve irritation, and joint pain throughout my body with severe pain in

knees/hips/back.  I usually have to stay in bed for 2-3 days or more after an

outing or attempting an exercise.  When I move my legs to reposition, pain in

knees, hips and back is bad.  I just try not to move as much as possible.

 

My pain doctor says my sensory nerve degeneration cause me to feel pain much

more than other people.  Since my mid-20's there has not been a time when I

don't have some type of pain.

 

I learned to block pain many years ago, but it wears on the emotions and when it

reaches a certain level, no amount of mental control helps.  Steroids, opiods,

and my pain management doctor have all become my best friends.

 

Interestingly, my father and uncle have no pain at all and they are still very

active, at the ages of 65 and 69.  But their mom (my grandmother) suffered pain

her entire life.  Like me, she was fragile and had her hips replaced when she

was 38 years old.

 

It's very odd how this disease affects people so differently, even within the

same family.

 

From what I've heard from my doctors, the degree of pain I experience is highly

unusual among CMT patients.

 

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,

I too have lots of pain. I always feel fluish. The only thing that doesn't hurt

are my ears and sometimes fingernails. Other members in my family don't have the

pain but they do have the wasting away of the muscle. I think I would rather

have that. I am so afraid of becoming addicted to pain meds!

Tamara

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Hi Tamara,

 

I was afraid of taking pain medication too.  I would wait for the pain to be

really bad before taking anything and then take the minimum.  My pain doctor

would get very frustrated with me for doing this.  It took a couple of lectures

from him before I got what he was trying to say.

 

In order to have the best chance of getting the pain under control, I needed to

take all my maintenance medication exactly as prescribed, no skipping.  Then, at

the first sign of breakthrough pain, I needed to take the stronger medication to

knock it down.  The reason for this 'nip it in the bud' approach is that the

longer the nerves are irritated, the worse the pain may get and the harder it is

to get it controlled.  It's easier to stop it at the beginning of a flare-up. 

In addition, they have discovered that pain signals can continue and worsen even

after the initial source of the pain has been removed, so calming them is

essential for relief.

 

He also helped me appreciate that there's a big difference between being

addicted to medication and being dependent upon it.  If I'm taking medications

regularly for pain control, I may become dependent on it, but that is not the

same as an addiction.  Diabetics may need to take insulin to control the

disease, if so they are dependent on the insulin not addicted.  It's similiar

with medication for chronic pain relief.

 

That's not to say addiction can't happen.  It can.  People may become addicted

to medications by taking amounts higher than what is prescribed and/or by

continuing to take it after the pain has stopped.  If a person has a history of

addiction or propensity toward addiction, personally or in the family, then the

risk is greater and there is need to exercise extreme caution.

 

For me, this is a quality of life issue.  If I had a choice, I would prefer not

to take anything, but if I did, life would not be worth living.

 

For others in similiar circumstance, I would suggest finding a pain management

doctor you can trust and follow instructions closely.  Don't take more than

prescribed.  Stop the medication, as directed, when you feel relief.  If a

medication doesn't work, stop taking it and tell the doctor rather than

increasing the dosage on your own.  Take the smallest effective dose.  Get

enough sleep each night, since irregular sleep patterns can increase pain.  Try

to reduce stress, since stress can increase pain levels.  Use ice and

other non-medication methods in conjunction with the medication regiment to calm

nerves down.  Research side effects and contraindications before taking

anything. 

Get a second opinion and/or a new doctor, if you aren't completely comfortable

with the information you are being given.  Ask lots of questions and trust your

instincts.

 

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,

Wow! All my respect to you. All that sounds like a lot. I can sense you are a

strong woman. Keep on. Never give up. This last two years I see my CMT is

advancing real fast, that's why I asked. But, whatever comes or happen I am

ready for it.........I try to work out and do as much as possible to set an

example for my boys. They are 18 and 15 years old. It is tough for

teenagers.....I think as a teenager girl it was easier for me.

Betania

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>

> Hi Tamara,

>  

> I was afraid of taking pain medication too.  I would wait for the pain to be

really bad before taking anything and then take the minimum.  My pain doctor

would get very frustrated with me for doing this.  It took a couple of lectures

from him before I got what he was trying to say.

>  

> In order to have the best chance of getting the pain under control, I needed

to take all my maintenance medication exactly as prescribed, no skipping. 

Then, at the first sign of breakthrough pain, I needed to take the stronger

medication to knock it down.  The reason for this 'nip it in the bud'

approach is that the longer the nerves are irritated, the worse the pain may get

and the harder it is to get it controlled.  It's easier to stop it at the

beginning of a flare-up. 

>

> In addition, they have discovered that pain signals can continue and worsen

even after the initial source of the pain has been removed, so calming them is

essential for relief.

>  

> He also helped me appreciate that there's a big difference between being

addicted to medication and being dependent upon it.  If I'm taking medications

regularly for pain control, I may become dependent on it, but that is not the

same as an addiction.  Diabetics may need to take insulin to control the

disease, if so they are dependent on the insulin not addicted.  It's similiar

with medication for chronic pain relief.

>  

> That's not to say addiction can't happen.  It can.  People may become addicted

to medications by taking amounts higher than what is prescribed and/or by

continuing to take it after the pain has stopped.  If a person has a history of

addiction or propensity toward addiction, personally or in the family, then the

risk is greater and there is need to exercise extreme caution.

>  

> For me, this is a quality of life issue.  If I had a choice, I would prefer

not to take anything, but if I did, life would not be worth living.

>  

> For others in similiar circumstance, I would suggest finding a pain management

doctor you can trust and follow instructions closely.  Don't take more than

prescribed.  Stop the medication, as directed, when you feel relief.  If a

medication doesn't work, stop taking it and tell the doctor rather than

increasing the dosage on your own.  Take the smallest effective dose.  Get

enough sleep each night, since irregular sleep patterns can increase pain.  Try

to reduce stress, since stress can increase pain levels.  Use ice and

other non-medication methods in conjunction with the medication regiment to calm

nerves down.  Research side effects and contraindications before taking

anything. 

>

> Get a second opinion and/or a new doctor, if you aren't completely comfortable

with the information you are being given.  Ask lots of questions and trust your

instincts.

>  

>

>

>

>

>

>

>

>

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  • 4 months later...

I was on the Fentanyl patches for awhile. But after awhile, they

started to take longer to kick in

and wear wearing off sooner than they should have. I couldn't seem to

keep a sustained level

to be effective for me.

I finally got with a pain management doctor who has helped me immensely.

Currently I am on Opana ER 10mg, which I take every 7-8 hours.

I will tell you that he tried me on a new drug NUCYNTA, which was a

miracle for me.

I took it every 4 hours and it not only relieved my pain, but gave me

energy.

It was a miracle - I felt almost normal!

However, because I am a thyroid cancer survivor and take high levels

of thyroid hormone,

because I have no gland, I am very sensitive to medications that might

slightly increase

my heart rate. This is very rare for this drug - just a wierd

situation. So, I am going to

back down on my thyroid medication a bit over the next 2-3 months, so

I can go back

on the NUCYNTA.

As far as the Opana ER goes, the first month it made me groggy, but it

doesn't now.

He also prescribed Provigil for me every morning, which helps with the

grogginess,

as well as the fatigue from the disease.

Sometimes, I take Lunesta for sleep.

I highly recommend the NUCYNTA, IF your doctor is familiar.

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  • 7 months later...

I have lost 2 toenails...they just fall off. I also have huge ridges in my

fingernails and my nails split down the middle. I think my blood work is closer

to normal now, but that is with MTX, Humira, and NSAIDs. I still have a lot of

pain and stiffness.  Stiffness is one of the things my rheumy monitors each

visit. I do believe I am somewhat better. Hang in there...as my doctor told

me...this disease is for the long haul. It isn't something you " get over! " It

is a lifelong disease that you hope to control symptoms of....there is no cure!

One of the things that help me deal with pain is splashes of some type of

frangrance.  I use body sprays because the scent dissipates very quickly.

Something about the different smells helps me with the pain.  Can't really

explain it...but worth the try!

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Hi J, My bloodwork has always been normal. I was diagnosed with PsA december 09

after years of being told it was fibromyalgia. My pain is mostly in my back,

hands, knees, ankles and feet. I do have PsA in my wrists and elbows also, i

inject humira every week, i take etodolac for inflamation now 3 times a day and

percocet for pain. I saw my rheumy yesterday and their is nothing she can do. I

start seeing a pain management doc next month to get shots in my back for the

pain. My rheumy seems to think that i'm going to make a full recovery using the

humira and will be able to have a normal life. I cant work, i had to file for

disability and am waiting for a decision, i have alot of trounle sleeping and am

constantly fatigued. I have alot of concentration and memory problems. I think

that these docs just dont get it, they just dont care. U tell them how u feel, u

show them signs of illness and because the labs or tests show nothing it must b

in our minds. I

am sorry, maybe u could get a second opinion? I hope u have a pain free day.

Lori in az

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Hi,

Current information states that an MRI is a reliable test for our

disease as well as others. I did have a bone scan to check out my bones

and it did show that I had arthritis in my foot.

However it did not show anywhere else . I was told that it is not

indicated for arthritis.

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so true my rheumy thinks the Humira and Etodolac are going to work so well that

i will be able to led a normal life work, etc... I have been out of work since

may i have bone spurs on the knuckles of some of my fingers, i have alot of pain

in my fingers and back. I can c the painful fingers deforming rite before my

eyes and can do nothing about it. I have had a bone scan and an MRI. The bone

scan shows almost every joint in my body is affected by this, idk y my rheumy

thinks after a few years i will b able to lead a normal, disease free life. M i

crazy? Lori in az

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I'm having the same issue. Pain in my left hand and right shoulder. My back is

KILLING me! My rheumatologist tells me it has nothing to do with my PsA. So,

I'm going to the orthopaedic doctor, who was the one who sent me for an MRI when

I had severe pain in my right hand (same as I now have it the left). I was

taking Enbrel but the rheumatologist said I really don't need to take it

anymore. Go figure!!

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The Humira pooped out on me after 6 months. Then my rheumy went to Remicade

which worked much better. Then I had a flare up after 6 years and he upped my

dosage to 6 vials every 6 weeks. I was pain free and had really good energy

level. Sometimes I'd forget I even had this thing. At that time they thought

it was RA but this past spring I developed the psoriasis. My rheumy sent me to

a dermatologist and he diagnosed PA. So the option was to increase the Remicade

even further or switch to Enbrel. The dermy recommended trying the Enbrel. So

now I'm a month into Enbrel. My psoriasis is a little bit better but, I'm

getting some pain back in my joints. Just mild pain so far. The dermy said it

would take 3 months for the Enbrel to have the full effect. In the mean time I

just accepted a job after being on unemployment for 2 years. I'm really excited

to get back to work so I hope this new diagnosis and treatment plan isn't going

to effect my ability to work.

Sometimes I think that the docs are not aggressive enough with the biologics.

My rheumy is in Chicago and he does clinical trial research at Rush and

Northwestern. He's very confident and aggressive about eliminating pain. If

something isn't working and you're that disabled, I think you owe it to yourself

to get another opinion. Maybe consider Mayo Clinic type of place? I've been

told not to go to any of the rheumys in the suburbs of Chicago! You'd think a

major metropolitan area would have more to offer but, they don't. I'll drive

downtown if I have to in order to get the relief. I'm not afraid of the

biologics either. They're safer than the DMARDs which are actually quite toxic.

Joan

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Joan, hi I'm from oswego IL & nbsp;what dr. Do you see sounds like you have one

you like I'm inteested in a secound opinion & nbsp;I've beed diagnotice with pa

for like 5 yrs & nbsp;pain as not stoped. Congrates on the new job. & nbsp; & nbsp;

Angie

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