Re: Re: sufferer (neck PA) - new neck sufferer!

[Guest guest]

Hi -

I'm really curious about how the group will respond to

you.

Im 34 and have had the same problems w/ the docs.

I don't understand what they are waiting for...me come

in using a wheelchair before they get more

aggressive...

I am beside myself ...b/c like you I have the horrible

neck,wrist,ankle pain but, because I don't have

swelling they give me edolac (sp) or ibuprofen.

I would like to have aggressive and preventitive treatment.

__________________________________________________

[Guest guest]

,

I would not wait til you have further damage to your joints to get more

aggressive with your treatment...I take enbrel and it gives more quality to my

life...I think when you make such a decision you have to decide what is best for

you in your situation...I look at it this way...quality vs. quantity. If I have

50 years where I am able to spend time with my family and do the things I want

to do, go the places I want to go then that is better than 75 to 80 years of

very poor quality. This is just my opinion and you may look at things

differently than me. My doc closely monitors me and if any of my blood work

becomes abnormal then changes in my treatment may have to occur. I would not

deal with a doctor who does not take this disease serious and takes a

conservative approach. I dont know your financial situation and you may not be

able to go doctor shopping like some people can...I hope you find a doc that can

help you...

Remember it is your body!!! If you want to be on enbrel or remicade you have

that right and you also have the right to refuse it too...

When you get right down to it a person has the right to hurt or not to hurt...It

should be up to the individual with the disease not the docs...Too many doctors

think they have the right to let their pt.'s hurt and sit back and watch and see

what happens....

Sorry I got on my soap box...

Vickey

Smoot-Mercer <jlsmooty@...> wrote:

I was reading all of the responses and wanted to add my comments about neck

pain. I'm fairly new to the PA in the neck - my PA started in my wrist and

about 2 months ago moved to my neck. Up until that point, I had only been

taking Relafen 750 twice a day. The back of my head and neck have been giving

me terrible headaches, and my upper back/shoulder are experiencing pain too. My

doctor prescribed Skelakin, a muscle relaxer and that has helped but not

relieved the symptoms, but took about 2 weeks to start to work. I also have

been going for massage when I have the time/money, I feel almost normal when I

leave, but this only lasts for about 1 week. When I have a lot of tension or a

bad headache, I lay on a heating pad or take a hot bath. I also have one of

those wooden " knuckle " type massagers. If my neck isn't too sensitive, I can

use that to get some of the knots out of my neck.

I recently went to another doctor for a second opinion, because I'm not really

getting a great response from my current doctor. Both doctors didn't seem to

think I should do anything but continue with my current treatment because my

symptoms are fairly " mild " . The pain in my back and neck keep me from

concentrating at work, but it does seem that my symptoms are milder than some

described on this site. I'm just worried that I am going to have some permanent

damage to my neck and that no one is taking it very serious. I have knots

everywhere muscle connects to bone in my head and neck, plus these weird

" bubbles " on the back of my neck that come and go. Not knots, they feel more

like fluid.

My questions for the experienced PA sufferer:

Are the doctors waiting for some actual joint damage to start more aggressive

treatment.

What are the side effects of the more aggressive drugs - I was given some

pamplets on humira, enbrel, remicade at the 2nd option docs office, but he said

" because of my age (28) and mild symptoms " , he wouldn't recommend those

treatments at this time. It seems to me that the side effects wouldn't be worse

than the disease, but I'd love to get information from actual people taking the

drug instead of the drug company brochure.

Thanks for your help!

[Guest guest]

--- Smoot-Mercer <jlsmooty@...> wrote:

> Skelakin, a muscle relaxer and that has helped but

> not relieved the symptoms, ...

> I have knots

> everywhere muscle connects to bone in my head and

> neck, plus these weird " bubbles " on the back of my

> neck that come and go. Not knots, they feel more

> like fluid.

I get those " bubbles " too! My doc ordered an MRI after

I told him about the massage therapist being baffled

by them, but the results were " normal " . My head and

neck are almost too tender to touch, espec. at the

base of the skill and either side of the spine.

I'm taking Skelaxin during the day, and Zanaflex at

night, but I can't say it solves the problem. Yoga and

massage help. I'm also taking methotrexate 1/x week

and Remicade 1x/6weeks. I'm better than I was, but the

neck still is my weak spot.

At a minimum your doc should be giving you an DMARD

like methotrexate to slow potential damage. When

DMARDs stop working, or the PA becomes more

aggressive, then they'll turn to the biologics. Don't

let them wait too long. Pain is one thing, but losing

range of motion impairs your quality of life and your

safety -- I now have trouble looking over my left

shoulder when driving.

Hang in there.

-

=====================================================

Stein

http://www.noblefusion.com/astein

http://www.livejournal.com/users/astein142/

http://darkart42.deviantart.com/

-----------------------------------------------------

" Do or do not. There is no try. " - Yoda

-----------------------------------------------------

" If you're tired of fighting battles with yourself

If you want to be somebody else, change your mind... "

-- Sister Hazel

=====================================================

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

There is NO reason to wait for permanent, life-time debilitating damage

before being put on medications that can stop the progression of the disease.

I'll bet not one of the doctors would wait until they damaged an organ or joint

or a nerve beyond repair before taking medication that could truly make a

difference. I'd would have a serious conversation with your doctor and if

he/she isn't willing to help you, find a doctor that is.

Kathy F.

[Guest guest]

I too have alot of neck pain. The pain goes down the right side of my neck,

into my upper back and shoulder, then to my elbow and right down to the tips of

my fingers. I also get bubbles around my neck area at times which feel like

fluid. My neck area swells. The doctor did a CT scan and all they could find

was small areas of inflammation. We already knew I was having a problem with

inflammation because my sed rates have been consistently on the high side. I am

on Prednisone which does seem to help some. The bubbles haven't been appearing

as often and the swelling hasn't been as much as before. Even though I am only

on 2 mg of Pred a day, it is helping some. On my last visit the CRNP was asking

about increasing my Pred but I told her I don't want to do that at this point.

Prednisone makes me crazy!! I find that I lose my temper very easily when I am

on it and I feel jumpy. I am very sensitive to Pred and anything that

stimulates my body (I have gone off of caffeine because

of this). Since I have a very stressful job, the Pred only increases the

amount of stress I feel. I have a great message therapist but, like you said,

that only last for a week or so but it sure feels good while it lasts. Debbie

Smoot-Mercer <jlsmooty@...> wrote:

I was reading all of the responses and wanted to add my comments about neck

pain. I'm fairly new to the PA in the neck - my PA started in my wrist and

about 2 months ago moved to my neck. Up until that point, I had only been

taking Relafen 750 twice a day. The back of my head and neck have been giving

me terrible headaches, and my upper back/shoulder are experiencing pain too. My

doctor prescribed Skelakin, a muscle relaxer and that has helped but not

relieved the symptoms, but took about 2 weeks to start to work. I also have

been going for massage when I have the time/money, I feel almost normal when I

leave, but this only lasts for about 1 week. When I have a lot of tension or a

bad headache, I lay on a heating pad or take a hot bath. I also have one of

those wooden " knuckle " type massagers. If my neck isn't too sensitive, I can

use that to get some of the knots out of my neck.

I recently went to another doctor for a second opinion, because I'm not really

getting a great response from my current doctor. Both doctors didn't seem to

think I should do anything but continue with my current treatment because my

symptoms are fairly " mild " . The pain in my back and neck keep me from

concentrating at work, but it does seem that my symptoms are milder than some

described on this site. I'm just worried that I am going to have some permanent

damage to my neck and that no one is taking it very serious. I have knots

everywhere muscle connects to bone in my head and neck, plus these weird

" bubbles " on the back of my neck that come and go. Not knots, they feel more

like fluid.

My questions for the experienced PA sufferer:

Are the doctors waiting for some actual joint damage to start more aggressive

treatment.

What are the side effects of the more aggressive drugs - I was given some

pamplets on humira, enbrel, remicade at the 2nd option docs office, but he said

" because of my age (28) and mild symptoms " , he wouldn't recommend those

treatments at this time. It seems to me that the side effects wouldn't be worse

than the disease, but I'd love to get information from actual people taking the

drug instead of the drug company brochure.

Thanks for your help!

[Guest guest]

As I read your stories on how you suffer from the neck it sounded just

like me speaking about my pain. Why is it that with PA it also affects the

muscles too.? My neck can hurt so bad and I think that the bubbles you spoke of

is on both sides of the lower head at the top of your neck. Mine becomes so

swollen and painful at times. Really stayes that way all the time but sometimes

much worse. Also, I have not heard any of you mention this but if I work too

long at the computer or anything my neck becomes so stiff and my eyes even hurt.

It is like the muscles around my eyes are affected too.

The Arthritis drug Iam on is called Arthro tec 75 mg. works pretty good to

get the pain down some and a muscle relaxer called Soma which works good for me

.. I have heard tho Soma is very addictive so limit how long I will use it. For

pain I I take Ultacet. All this just keeps my pain to where I can move or live.

I am on Enbrel and went from 85% of psoriasis to about 1 % so sIning its

praises, but it has done nothing for my PA. In,fact, the PA has grown even

worse on me.

I use to think as a child if I only did not have psoriasis life would be

great. Life is still great but I could do with out the pain. As a child

growing up it was hard enough to cope with the psoriasis covering my whole body.

I never knew in a fews years later pain would also be thru my body. We all must

keep going tho because as a child, teenager, and even adult, I kept wishing for

a body free of psoriasis. I never thought that day would come but it did now.

wishing for the pain free days of Pa. Zoella

---------------------------------

Start your day with - make it your home page

[Guest guest]

Thank you fellow bubble-necks! Thanks so much to everyone that responded on the

neck pain. It's good to know I'm not alone. I had pretty much decided to ask

my doctor " what are you waiting for? " , but it's good to hear support from

others. I have an appointment Monday, so we will see what happens. I was a

little concerned because I went for a second opinion (Dr. Lichtenstein -

recommended by Deborah Burchman - thanks!), and he said he wouldn't try

aggressive treatment either. I've done yoga for years and am still very

flexible (though not nearly as flexible as before my first flare last november),

so I think this throws them off a bit. At this point, I just want to make sure

I'm not going to cause damage to my spine by doing things like headstands,

shoulderstands, weight lifting, etc. - but I don't want to have to stop doing

these things because Yoga has been such a big part of my life for so long.

My current doc had ordered an MRI of my hand as well, but I started having the

neck pain after that appt, so I am waiting to make sure he doesn't want to do

both - no need to go through that twice if I don't have to!

I have a 2 year old already (my wife delivered her) and I'm going to try to get

pregnant within the next few months, so I'm not looking to start anything too

agressive immediately. I've read that symptoms lessen/dissapear during

pregnancy, which makes sense to me since you are immune supressed, but that

typically you have a flare in the weeks following delivery (i'm assuming from

the stress!) Has anyone been through a pregnancy with PA? Nursed? I'm worried

that I may have difficulty breast feeding if the neck symptoms return after the

pregnancy. My OB said prednisone is safe during pregnancy, but I haven't talked

w/ my Rheumatologist yet.

zoella bernard <purplezody@...> wrote:

As I read your stories on how you suffer from the neck it sounded just

like me speaking about my pain. Why is it that with PA it also affects the

muscles too.? My neck can hurt so bad and I think that the bubbles you spoke of

is on both sides of the lower head at the top of your neck. Mine becomes so

swollen and painful at times. Really stayes that way all the time but sometimes

much worse. Also, I have not heard any of you mention this but if I work too

long at the computer or anything my neck becomes so stiff and my eyes even hurt.

It is like the muscles around my eyes are affected too.

The Arthritis drug Iam on is called Arthro tec 75 mg. works pretty good to

get the pain down some and a muscle relaxer called Soma which works good for me

.. I have heard tho Soma is very addictive so limit how long I will use it. For

pain I I take Ultacet. All this just keeps my pain to where I can move or live.

I am on Enbrel and went from 85% of psoriasis to about 1 % so sIning its

praises, but it has done nothing for my PA. In,fact, the PA has grown even

worse on me.

I use to think as a child if I only did not have psoriasis life would be

great. Life is still great but I could do with out the pain. As a child

growing up it was hard enough to cope with the psoriasis covering my whole body.

I never knew in a fews years later pain would also be thru my body. We all must

keep going tho because as a child, teenager, and even adult, I kept wishing for

a body free of psoriasis. I never thought that day would come but it did now.

wishing for the pain free days of Pa. Zoella

[Guest guest]

yes,

i have been through two pregnancies and breastfeeding each child for a year with

both pregnancies. the first one i was not yet diagnosed but had bad neck and

feet symptoms. the feet began right after delivery. my neck was okay with

nursing. teh second baby i had much much worse symptoms after delivery.

weakness in wrists and arms, thought i would drop teh baby it was so bad. it is

still in my writst but arms are doing better. i was unable to take anything

other than tylenol arthritis the whole preg and nursing ordeal. they would nto

approve anything else.

sorry...

well my neck still hurst but i get chiriopractic adjustements here and there

that help a lot.

hope this helps

keri chinnici

Re: [ ] Re: sufferer (neck PA) - new neck sufferer!

Thank you fellow bubble-necks! Thanks so much to everyone that responded on

the neck pain. It's good to know I'm not alone. I had pretty much decided to

ask my doctor " what are you waiting for? " , but it's good to hear support from

others. I have an appointment Monday, so we will see what happens. I was a

little concerned because I went for a second opinion (Dr. Lichtenstein -

recommended by Deborah Burchman - thanks!), and he said he wouldn't try

aggressive treatment either. I've done yoga for years and am still very

flexible (though not nearly as flexible as before my first flare last november),

so I think this throws them off a bit. At this point, I just want to make sure

I'm not going to cause damage to my spine by doing things like headstands,

shoulderstands, weight lifting, etc. - but I don't want to have to stop doing

these things because Yoga has been such a big part of my life for so long.

My current doc had ordered an MRI of my hand as well, but I started having the

neck pain after that appt, so I am waiting to make sure he doesn't want to do

both - no need to go through that twice if I don't have to!

I have a 2 year old already (my wife delivered her) and I'm going to try to

get pregnant within the next few months, so I'm not looking to start anything

too agressive immediately. I've read that symptoms lessen/dissapear during

pregnancy, which makes sense to me since you are immune supressed, but that

typically you have a flare in the weeks following delivery (i'm assuming from

the stress!) Has anyone been through a pregnancy with PA? Nursed? I'm worried

that I may have difficulty breast feeding if the neck symptoms return after the

pregnancy. My OB said prednisone is safe during pregnancy, but I haven't talked

w/ my Rheumatologist yet.

[Guest guest]

-

I was fine until I got pregnant this last time.

I have always had a VERY mild case of P. In fact it

remained in a small part of the back of my scalp never

detected.

The pregnancy w/ my second child thru my body into

such a stress that I haven't been the same since.

It was weird. This pregnancy was the first time in my

life I was P free- but, after he delivered within a

week I started to get it. Now I have it worse than

anytime in my whole life. It covers the back of my

scalp. In my ear canals. Spots all over my arms and a

few on my legs. It even tried to flare up on my

breasts. (I do know P gets much worse in others- it

was just the worse I had ever had it...)

That being said I had my baby in Sept. by March I

started to experience PA.

I breastfeed.

Still do...In fact I am trying to start weening as we

speak b/c I want to begin treatment on my P and PA.

If you want my two cents (which isn't much) regarding

pregnancy,breastfeeding etc.....Personally I wouldn't

take any kind of medicine being pregnant or BF.

I say this b/c If anything were to ever be wrong with

one of my kids I don't want to go thru life thinking

it was something that I did.

I know after I had my baby and my P flared so bad I

went to a dermatologist. He put me on all this stuff-

tar shampoo and topical steriods. He said my baby

would be fine even though he breastfed. I then talked

to my pediatrician and she also " thought " it would be

fine too.

My problem was for one thing I knew that steroids of

any kind tend to collect in fat. Knowing this I also

knew that breast milk is incredibly high in fat and it

would have at the very least traces of steroids.

I also didn't want to potentially expose him to any

chemical (coal tar, salycic acid) via my milk. Even if

he would be totally fine I wanted a clean conscience.

Now he is 11 months and physically (not mentally) I am

ready to ween him only b/c I hurt so much I need to

start taking care of me. Like you...I still have the

flexibility, the range-of-motion, and I don't have

noticible swelling. The few appendages that were

swollen aren't nearly so now. I just hurt in my

neck,ankles,hands and wrists. I also would love to

know just what damage the docs want to occur before

they get a bit more aggressive with therapy.

One thing before I close. I was sitting with a doc on

the plane last night and asked her about this.

She told me that probably the reason they weren't more

aggressive was because they want to leave some options

open for us in case we get really bad one day. I guess

if we pull out the big guns now...what bag of tricks

will we have when every joint is so swollen that we

loose all flexibility. She also said to give a

somewhat normal healthy person drugs like

remicade,embrel should be a last resort thing (in her

opinion) because it kills off your really healthy

fighting cells. Then you are susceptible to many

illness. She talked about how people gets really sick

and never even know it. They won't run temps-don't

feel pain and the next thing you know....they are

dead. They never had any idea to get help b/c they

never felt bad. She said that is probably why docs are

so cautious.

Ironic thing about my position is back in the early

90's I was a nurse for a thriving Rheumatology clinic

in Birmingham, Al.

In passing one day I asked a doc about having P and my

chances of getting PA. He said a small percent so I

shrugged the whole thing off thinking it will NEVER

happen to me.

Now I wish I had learned a little more while I was

there. It was just business as usual at the time.

But I can say this.... The medicines out here today 10

years ago didn't exsist...it is amazing how far the

field has gone.

A post not too long ago was someone worried about

their childrens chances of getting P and PA.

My thoughts were....if it has come this far in 10

yrs...by the time my children get it I won't need to

worry. I don't think they will suffer like so mnay

people these days do.

Anyway, I look forward to hearing more from you. You

are definetly in my boat down to having children close

to the same age.

Good luck.

tricia

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