Re: Newbie Here...Hip Replacement until PA Just Discovered...and CFS

[Guest guest]

>Hollie...so sorry about all you are going through. Yes...it can come

on fast. Seems odd, doesn't it? When mine hit and I could not walk

hardly at all from it, it was overnight. I'm only 45. I did get on

Enbrel this year and went from not being able to manage the supermarket

or mall without a wheelchair to selling cars and working 48 hours a

week. Have they tried any of the biologics on you? I welcome you to the

group but I'm sorry you have to be here. This group is a lifesaver. I

never thought I'd be a group person and now I can't manage my life

without these wonderful people. -Betz

[Guest guest]

>

> I haven't read any other posts about a situation like this, does it

> sound familiar to anyone? It just came on so fast!

>

> Thanks,

> Hollie

>

Dear Hollie,

I am sorry you are in so much pain. Yes, your condition should

have been caught sooner. It is the lament of many of us here. I

know I was treated like a hypochondriac for years (still am to some

degree) only to discover this past Spring that I will only be able to

walk for a few more years bevause of PA. (spinal fusing)

It was only after finding this board that I realised my

symptoms are NORMAL for PA. My Drs for the last 8 years have

dismissed my crippling fatigue. Written it off to depression (which

I am not) or low grade infection as my white count is always slightly

elevated, etc etc. But mostly they treat me as if I am lazy.

They don't believe me when I tell them about my memory

problems, that I wake up some days and EVERYTHING hurts (even opening

my eyes), that I can sleep around the clock and still not be able to

get out of bed some days. (And other days I feel pretty good, sharp

mind, energetic and relatively pain free.)

After being seen by a multitude of specialist (including

rheumetologists) it was my dermatologist that finally diagnosed me

with PA. And still, in spite of my Xrays, blood work, MRI's etc etc,

my rheumy doesn't agree with the diagnosis. He knows my spine is

fusing, but doesn't know why. (I am about to fire him.)

Anyway...sorry to get off on my own rant. Many of us here are

frustrated by our medical professionals and the hoops we have to jump

through in order to get medication. As for methotrexate, many

insurance companies require you to try metho first before going to

more invasive (and expensive) treatments. Many people get relief

from metho alone and some use it in combination with other drugs.

But it seems to be the starting point for trying to slow this disease.

I hope you find relief for your suffering. Know that here you

are among friends.

Sandi

[Guest guest]

>

> He knows my spine is

> fusing, but doesn't know why. (I am about to fire him.)

>

>

So Sandi Darlin....when ARE you going to fire the guy? He " doesn't know

why " .....??? He has the resources to FIND out why. So hows about

revising that to " He does not CARE why " ? I'm looking forward to the

day when I read on here that you finally found a Rheumy who cares

enough to do what he or she is being paid to do. Remember...it's YOU

who is paying the guy to do NOTHING. Do you have that kind of money or

generosity? Ok then Honey. Chop chop. lol. -Betz

[Guest guest]

I had two Orthopedic Surgeons tell me I was too young, one who took

the time to discover my PA, the other is head of the UC Med

Center Orthopedic Surgery department. There are other OS's who

would do it but I kind of think these guys are right.

Revisions are difficult if not impossible to do right, figure the

THR will probably last 20, 30 years at best.

I have discovered another procedure though, hip resurfacing, which a

lot of younger people are getting where they don't cut off the

femoral head and put the steel shank down the leg, so a total hip

replacement later is easy (they do put a metal on metal cap on the

head). They've been done in Britain and Europe for quite a while,

most orthopedic surgeons will tell you not to do them because there

aren't enough experienced docs in the US yet. There is a

group called SurfaceHippy that is full of people (young) thrilled

with this procedure and they have lists of docs that do this

extensively in the US and elsewhere.

Resurfacing allows for much more flexiblilty than total hip

replacement. After recovery people are back to high impact

activities that you just couldn't do with a THR.

I'm just wondering if any surgeon would work on me with the amount

of fluid I have on my hips and with my current labs which show a

high white cell count. I know they do some RA hips though.

Something I'm thinking about if meds for PA don't work to reduce

fluid (do they ever?).

Hollie

>

> Hollie,

> I don't know who told you that you are too young for a total hip

replacement. I am getting one on December 28th and I am only 29. I

have no cartilidge left, and I'm in a ton of pain so I have to get

one. I also started methotrexate 4x a week. Good luck to you!

> ~

>

[Guest guest]

Betz, glad to hear a medication actually worked to get you out of a

wheelchair and well?

I don't know what biologics are so don't think they've tried

anything, in fact I'll be going to my first appointment after

diagnosis in about 2 weeks or less I hope.

I want to stop this stuff from eating up my cartilage. Is MTX able

to stop the process? Does Enbrel stop it?

Do the meds get rid of the fluid around my big joints?

I wonder if I should pay cash for Enbrel or Remicade to get the ball

rolling and just skip the MTX?

After reading about the side effects from these meds it's really

scarey to be taking them. I really wouldn't want Lymphoma later in

life or to develop pnemonia. How do you do it?

Thanks,

Hollie

>

> >Hollie...so sorry about all you are going through. Yes...it can

come

> on fast. Seems odd, doesn't it? When mine hit and I could not walk

> hardly at all from it, it was overnight. I'm only 45. I did get on

> Enbrel this year and went from not being able to manage the

supermarket

> or mall without a wheelchair to selling cars and working 48 hours

a

> week. Have they tried any of the biologics on you? I welcome you

to the

> group but I'm sorry you have to be here. This group is a

lifesaver. I

> never thought I'd be a group person and now I can't manage my life

> without these wonderful people. -Betz

>

[Guest guest]

Sandi, it's good to find others who are going through this too and

share info, thanks for yours.

So you had bad fatigue, low grade fever and memory problems? Those

are the key symptoms of chronic fatigue syndrome or FM, did anybody

diagnose you for that? Now I'm wondering if I've actually had the

CFS I've been living with for 14 years and if it wasn't PA.

I haven't had any joint or muscle aching, just the CFS type

symptoms. I would think people with any kind of arthritis would

have aching.

I'm really in nowhere land...I don't know why you weren't diagnosed

with CFS/FM and why I haven't had worse arthritis symptoms if I have

PA.

Bad news about the frustrations with the medical professions.

What are you using now and does it work? How in heck does one get

rid of this fluid on joints so it stops eating cartilage? Sounds

like MTX isn't going to be the answer?

Thanks,

Hollie

> Dear Hollie,

>

> I am sorry you are in so much pain. Yes, your condition

should

> have been caught sooner. It is the lament of many of us here. I

> know I was treated like a hypochondriac for years (still am to

some

> degree) only to discover this past Spring that I will only be able

to

> walk for a few more years bevause of PA. (spinal fusing)

>

> It was only after finding this board that I realised my

> symptoms are NORMAL for PA. My Drs for the last 8 years have

> dismissed my crippling fatigue. Written it off to depression

(which

> I am not) or low grade infection as my white count is always

slightly

> elevated, etc etc. But mostly they treat me as if I am lazy.

>

> They don't believe me when I tell them about my memory

> problems, that I wake up some days and EVERYTHING hurts (even

opening

> my eyes), that I can sleep around the clock and still not be able

to

> get out of bed some days. (And other days I feel pretty good,

sharp

> mind, energetic and relatively pain free.)

>

> After being seen by a multitude of specialist (including

> rheumetologists) it was my dermatologist that finally diagnosed me

> with PA. And still, in spite of my Xrays, blood work, MRI's etc

etc,

> my rheumy doesn't agree with the diagnosis. He knows my spine is

> fusing, but doesn't know why. (I am about to fire him.)

>

> Anyway...sorry to get off on my own rant. Many of us here

are

> frustrated by our medical professionals and the hoops we have to

jump

> through in order to get medication. As for methotrexate, many

> insurance companies require you to try metho first before going to

> more invasive (and expensive) treatments. Many people get relief

> from metho alone and some use it in combination with other drugs.

> But it seems to be the starting point for trying to slow this

disease.

>

> I hope you find relief for your suffering. Know that here

you

> are among friends.

>

> Sandi

>

[Guest guest]

I am only 48 (will be 49 in December) and had one hip so badly

destroyed by the psoriatic arthritis (80 % of the bone lost). The

Methotrexate slowed the progression of the disease there, but did

not stop it. By the time my second rheumatologist decided to try

Enbrel, the hip was too badly damaged. We're talking stabbing pains

in the groin area even just lying in bed at night and walking around

with a horrible limp, which aggravated the spondyloarthritis and

caused terrible sciatica with pain radiating down the buttock and

leg all the way to the knee. To even function MINIMALLY at work and

home each day, I had to take 1500 mg Naproxen, two Tramadols, three

to four Lidocaine patches plastered all over my hip and lower back,

and yet another 600-800 mg of Ibuprofen to top it all off. The first

orthopedic surgeon I saw told me that my hip was definitely damaged

to the point of needing repair, but that he wouldn't do it because

he only inserted metal implants and that wouldn't hold up long

enough due to my young age and being overweight. (I must confess to

losing my temper and snapping right back, " What, you want to wait

until I'm even fatter and older? GOOD plan, then I'll be even more

at risk for complications due to anesthesia and surgery and have an

even more prolonged recovery time. " ) He did refer me to another

orthopedic surgeon who specialized in CERAMIC replacements. These

are apparently more durable than metal ones and are used extensively

in younger and heavier patients. I had my hip replacement June 28th

and was back at work full-time with no restrictions by July 24th.

Young or not, overweight or not, the surgeon was willing to do it,

thank God fasting. I don't care if the prosthesis has to be replaced

20 or 30 years down the road. I need to be able to work and function

now, and I just can't express in words how RELIEVED I am to not be

in such bad pain anymore. It was the WORST pain I have ever

experienced in my life. Before the surgery, I had heard that the

second day postop was the worst because they remove your epidural

and switch you to oral pain meds and start you up walking in PT.

Well, all I can say is that they pulled the epidural and started me

on 20 mg Oxycontin twice a day. The nurses kept coming in to offer

me Norco in between ( " Aren't you in pain? Don't you want the

Norco? " ) and I kept telling them, " You guys, compared to the preop

pain, THIS surgical discomfort is just NOTHING. No, I don't need any

Norco. " That's how bad the pain was preop, worse than what even

second-day postop hip replacement pain is SUPPOSED to be. My

sacroiliac joint still aches as do my degenerated feet, and my hands

are starting to become somewhat more stiff and painful, but the

sciatica and limp and hip pain are GONE. I am now down to 800 mg of

Naproxen a day (and NO Tramadol or extra Ibuprofen or Lidocaine

patches)

I hope that your doctors are right and that medications will stop

the damage to your hip and the fluid will resolve. That would be

awesome. If it doesn't, though, and you begin to experience severe

pain like mine, I sincerely hope that they will be willing to

reconsider their thoughts on you being " too young " for a prosthesis.

Bright blessings to you.

Wanda

[Guest guest]

Hollie... MTX and

Enbrel can actually slow the progression of the disease. It won't

stop it. It won't cure it. As far as the fluid, I don't know about

that. Many folks on here are on MTX and a biologic like Enbrel or

Humira. My doctor wanted to start with Enbrel and add MTX if the

Enbrel did not do the job. Clearly it did so I'm glad she started

out simply. Then if the Enbrel loses power down the road, we have

something to try to jump start it. As far as Lymphoma or possible

side effects, the actual incidence of Lymphoma that occured during

testing of Enbrel was the same as the incidence of Lymphoma in

arthritis patients who were not taking Enbrel. People with arthritis

generally have a higher chance of getting Lymphomas. Kind of stinks

doesn't it? So don't worry that it's the Enbrel that will give you

Lymphoma and make the life you have now a comfortable, liveable one.

You have now. We don't know about tomorrow. And it's true that there

is a higher chance of getting pneumonia with Enbrel. I'm actually

off the Enbrel right now due to a UTI that won't go away after 4

rounds of antibiotics. But I'M WALKING. Let's see....UTI? or cane

and occasional wheel chair? Hmmmmmmm. lol. The thing is that you

have to be careful and if you have a cold and don't feel well, don't

be afraid to bug your doctor and get in there to make sure you are

ok...get bloodwork...whatever to make sure you are not getting sick

and if you are, get off the Enbrel. You can be sure I'll not be

messing around with it. This is why it's KEY to have a

Rheumatologist you trust as well as a Primary Care doctor who will

work with your Rheumy and understand that he or she will have to be

aggressive with your health care. Otherwise you'll be doing alot of

guessing and worrying. We constantly remind each other on here that

we pay our doctors. They work for us and if they don't do a good job

they can and should be fired. It's our health. It's our life. You

get tougher and braver after awhile. Live now Honey. We will help

you. -Betz

>

> Betz, glad to hear a medication actually worked to get you out of

a

> wheelchair and well?

>

> I don't know what biologics are so don't think they've tried

> anything, in fact I'll be going to my first appointment after

> diagnosis in about 2 weeks or less I hope.

>

> I want to stop this stuff from eating up my cartilage. Is MTX

able

> to stop the process? Does Enbrel stop it?

>

> Do the meds get rid of the fluid around my big joints?

>

> I wonder if I should pay cash for Enbrel or Remicade to get the

ball

> rolling and just skip the MTX?

>

> After reading about the side effects from these meds it's really

> scarey to be taking them. I really wouldn't want Lymphoma later

in

> life or to develop pnemonia. How do you do it?

>

> Thanks,

>

> Hollie

>

[Guest guest]

Dear Hollie,

Thanks for the info about CFS. I will definitely speak to my Dr

about it. In many ways the fatigue is worse than the pain.

I am really glad you don't have bone/joint pain.

As for the fluid around your hips, it is probably just a

reaction to the microscopic attack on your joints. If the attack can

be stopped the fluid might go away. I hope methotrexate does work for

you. It works for many people here on this site both alone and in

combination with other drugs.

PA is an auto-immune disorder; meaning the immune system is

overactive and is attacking (in your case) your hips in an effort

to " fix " them when in actuality there is no invader for them to

fight. Instead they start eating away at healthy tissue. The tissue

being attacked sends out an emergency 911 to the immune system

calling for help. This further stimulates the immune system to

attack.

It's a vicious cycle. The more damage the immune sys inflicts

the more the immune system is activated....and thus the more damage

it inflicts.

The only way to break the cycle is to suppress the immune

response. Methotrexate and like drugs inhibit your body's ability to

produce immune system agents. (white vlood cells, T cells, etc)

Biologics like Enbrel, Humira, (etc), inhibit the immune systems

ability to activate. (IE disconnect the 911 system)

Currently I am on Enbrel injections twice a week. I have only

had 4 doses so far and so really can't report anything about

effectiveness. But so far...no adverse reactions. Yippeeee! LOL

But between me, you and everyone else....I'd prefer to take 5 pills a

week and opposed to needles, so I'll cross my fingers that

methotrexate works for you.

Hope this helps

Sandi

[Guest guest]

Wanda, I hear you on the leg/groin pain...same here except the

cortisone shots have gotten me out of the walker. I don't have to

wait for this pain, it is here now.

Thanks for the info on MTX vs. Enbrel, I hope to get the next Rheumy

to start off with Enbrel.

I can't wait to have hip surgery, was so disappointed to hear I was

too young, but there are always surgeons who will do it and perhaps

technology will catch up before they are worn out.

My husband (86 years old) had a hip replacement and was like you,

excrutiating pain before and a happy camper during recovery.

Unfortunately he is in denial about my need for hip replacement

although three ortho surgeons have said I need it after viewing my

XRays. He keeps saying I will be OK now that I've gotten cortisone

shots and won't need surgery.

It's all so scarey, I'm in a constant state of high stress wondering

how I'm going to fend off my hereditary osteoporosis and high

cholesteral without being able to exercise. And I guess the real

fear is losing my legs. I was a dancer, skiier, always had strong

legs, I'm so fearful I'm losing them.

Thanks,

Hollie

> I am only 48 (will be 49 in December) and had one hip so badly

> destroyed by the psoriatic arthritis (80 % of the bone lost). The

> Methotrexate slowed the progression of the disease there, but did

> not stop it. By the time my second rheumatologist decided to try

> Enbrel, the hip was too badly damaged. We're talking stabbing

pains

> in the groin area even just lying in bed at night and walking

around

> with a horrible limp, which aggravated the spondyloarthritis and

> caused terrible sciatica with pain radiating down the buttock and

> leg all the way to the knee. To even function MINIMALLY at work

and

> home each day, I had to take 1500 mg Naproxen, two Tramadols,

three

> to four Lidocaine patches plastered all over my hip and lower

back,

> and yet another 600-800 mg of Ibuprofen to top it all off. The

first

> orthopedic surgeon I saw told me that my hip was definitely

damaged

> to the point of needing repair, but that he wouldn't do it because

> he only inserted metal implants and that wouldn't hold up long

> enough due to my young age and being overweight. (I must confess

to

> losing my temper and snapping right back, " What, you want to wait

> until I'm even fatter and older? GOOD plan, then I'll be even more

> at risk for complications due to anesthesia and surgery and have

an

> even more prolonged recovery time. " ) He did refer me to another

> orthopedic surgeon who specialized in CERAMIC replacements. These

> are apparently more durable than metal ones and are used

extensively

> in younger and heavier patients. I had my hip replacement June

28th

> and was back at work full-time with no restrictions by July 24th.

>

> Young or not, overweight or not, the surgeon was willing to do it,

> thank God fasting. I don't care if the prosthesis has to be

replaced

> 20 or 30 years down the road. I need to be able to work and

function

> now, and I just can't express in words how RELIEVED I am to not be

> in such bad pain anymore. It was the WORST pain I have ever

> experienced in my life. Before the surgery, I had heard that the

> second day postop was the worst because they remove your epidural

> and switch you to oral pain meds and start you up walking in PT.

> Well, all I can say is that they pulled the epidural and started

me

> on 20 mg Oxycontin twice a day. The nurses kept coming in to offer

> me Norco in between ( " Aren't you in pain? Don't you want the

> Norco? " ) and I kept telling them, " You guys, compared to the preop

> pain, THIS surgical discomfort is just NOTHING. No, I don't need

any

> Norco. " That's how bad the pain was preop, worse than what even

> second-day postop hip replacement pain is SUPPOSED to be. My

> sacroiliac joint still aches as do my degenerated feet, and my

hands

> are starting to become somewhat more stiff and painful, but the

> sciatica and limp and hip pain are GONE. I am now down to 800 mg

of

> Naproxen a day (and NO Tramadol or extra Ibuprofen or Lidocaine

> patches)

>

> I hope that your doctors are right and that medications will stop

> the damage to your hip and the fluid will resolve. That would be

> awesome. If it doesn't, though, and you begin to experience severe

> pain like mine, I sincerely hope that they will be willing to

> reconsider their thoughts on you being " too young " for a

prosthesis.

>

> Bright blessings to you.

>

> Wanda

>

[Guest guest]

Thanks Betz, I know I have to get out of this mindset of fear so I

can enjoy what life I have. I thought I'd already learned this

lesson when I " caught " CFS and spent two years in bed with nobody to

help me...contemplating suicide, but guess I'll have to go through

it again.

I hope I'm able to get a good Rheumy who can immediately start

Enbrel. Thanks for the info on how to cope with the side effects.

My original Rheumy just called to tell me they'd detected hospital

staph in my lab work, just what I need, another scare! Went down

there and they couldn't get any fluid out to recheck but he said he

didn't think I had staph or my knee would be more swollen by now,

sure hope he's right. I just had a good friend die of hospital

staph from a biopsy.

Now I'm not only scared of losing my legs but losing my life!

Thanks,

Hollie

Hollie... MTX and

> Enbrel can actually slow the progression of the disease. It won't

> stop it. It won't cure it. As far as the fluid, I don't know about

> that. Many folks on here are on MTX and a biologic like Enbrel or

> Humira. My doctor wanted to start with Enbrel and add MTX if the

> Enbrel did not do the job. Clearly it did so I'm glad she started

> out simply. Then if the Enbrel loses power down the road, we have

> something to try to jump start it. As far as Lymphoma or possible

> side effects, the actual incidence of Lymphoma that occured during

> testing of Enbrel was the same as the incidence of Lymphoma in

> arthritis patients who were not taking Enbrel. People with

arthritis

> generally have a higher chance of getting Lymphomas. Kind of stinks

> doesn't it? So don't worry that it's the Enbrel that will give you

> Lymphoma and make the life you have now a comfortable, liveable

one.

> You have now. We don't know about tomorrow. And it's true that

there

> is a higher chance of getting pneumonia with Enbrel. I'm actually

> off the Enbrel right now due to a UTI that won't go away after 4

> rounds of antibiotics. But I'M WALKING. Let's see....UTI? or cane

> and occasional wheel chair? Hmmmmmmm. lol. The thing is that you

> have to be careful and if you have a cold and don't feel well,

don't

> be afraid to bug your doctor and get in there to make sure you are

> ok...get bloodwork...whatever to make sure you are not getting sick

> and if you are, get off the Enbrel. You can be sure I'll not be

> messing around with it. This is why it's KEY to have a

> Rheumatologist you trust as well as a Primary Care doctor who will

> work with your Rheumy and understand that he or she will have to be

> aggressive with your health care. Otherwise you'll be doing alot of

> guessing and worrying. We constantly remind each other on here that

> we pay our doctors. They work for us and if they don't do a good

job

> they can and should be fired. It's our health. It's our life. You

> get tougher and braver after awhile. Live now Honey. We will help

> you. -Betz --- In , " Hollie "

[Guest guest]

Sandi, thanks for all the info about meds and the process of PA, no

Rheummy has said it so well.

This symptom crossover with CFS and PA is shocking me, they sound so

similar. Are these symptoms of PA: brain fog, super fatigue

(bedridden at times), exhaustion after fairly simple exercise,

neurological/cognitive symptoms (temporary memory loss), sensitivity

to light and/or sound, flare ups of unknown cause, low grade fever.

Fatigue to the point that it takes awhile to recover from taking a

shower, so you can go somewhere. Some good days, some bad days.

I feel like my current flared, fluid condition is an attack I've

never experienced, my labs have never looked like this. I believe

it could be connected with the very bad reaction I got after taking

Crestor, a cholesteral med, which made me feel like I was 100+ years

old...every thing in my body hurt. After that I started getting

groin pain from bad hip, the timing was such that it seems one cause

the other. Could this be?

CFS is debated to be either an auto-immune or virally caused illness

with most research weight leaning to viral. I suppose any arthritus

could be really viral too, couldn't the immune system be revved up

because it's trying to fight an as yet unknown virus?

I do have lots of damage in my hips, eaten cartilage, so I sure hope

to soon get on Enbrel or something that will stop the carnage.

Don't know if I can wait for that MTX, don't know if there will be

much left of me then. Glad to hear the Enbrel is working for you.

Thanks so much,

Hollie

> Dear Hollie,

>

> Thanks for the info about CFS. I will definitely speak to my

Dr

> about it. In many ways the fatigue is worse than the pain.

>

> I am really glad you don't have bone/joint pain.

>

> As for the fluid around your hips, it is probably just a

> reaction to the microscopic attack on your joints. If the attack

can

> be stopped the fluid might go away. I hope methotrexate does work

for

> you. It works for many people here on this site both alone and in

> combination with other drugs.

>

> PA is an auto-immune disorder; meaning the immune system is

> overactive and is attacking (in your case) your hips in an effort

> to " fix " them when in actuality there is no invader for them to

> fight. Instead they start eating away at healthy tissue. The

tissue

> being attacked sends out an emergency 911 to the immune system

> calling for help. This further stimulates the immune system to

> attack.

>

> It's a vicious cycle. The more damage the immune sys inflicts

> the more the immune system is activated....and thus the more

damage

> it inflicts.

>

> The only way to break the cycle is to suppress the immune

> response. Methotrexate and like drugs inhibit your body's ability

to

> produce immune system agents. (white vlood cells, T cells, etc)

> Biologics like Enbrel, Humira, (etc), inhibit the immune systems

> ability to activate. (IE disconnect the 911 system)

>

> Currently I am on Enbrel injections twice a week. I have only

> had 4 doses so far and so really can't report anything about

> effectiveness. But so far...no adverse reactions. Yippeeee!

LOL

> But between me, you and everyone else....I'd prefer to take 5

pills a

> week and opposed to needles, so I'll cross my fingers that

> methotrexate works for you.

>

> Hope this helps

>

> Sandi

>