new to group!

[Guest guest]

Jerry, I am currently on 6MP which in the literature states it is an oral

chemo used primarily for leukemia. Perhaps that is what she is referring

to......

debby

Re: [ ] New to group!

> Penny your post is confusing.... why is he on chemotherapy? Could it be

> that he has liver cancer? That's a whole other different colored horse

> than AIH. Chemo for the rest of his life? never heard of such a thing.

> Either he is confused or you have misunderstood him.

> As far as stage 3 cirrhosis goes it doesn't mean too much unless we know

> what scale he is being measured on ...there are a few. Most common is

> the Child-Pugh which has stages 1, 2a, 2b, and 3.

> If he were at stage 3 here he would be exhibiting complications as this

> is " end stage " cirrhosis....he probably would have

> bleeding in his esophagus,(varices) a huge belly and swollen ankles,

> (ascites and edema) and exhibit confusion or poor motor skills

> (encephalopathy) He may have other complications such as jaundice,loss

> of body hair, growing breasts, shrunken testes, itching, red spider

> veins on his face and body and other complications. You didn,t mention

> any of these so I know he isn't stage 3 Child=Pugh. There are a couple

> other scales that I would have to look up but none that I know that go

> beyond 4 stages.

> And stage 3 in any of them would be serious and he would have at least

> some of the complications have mentioned.

> Recently a new scale has been introduced thru the Mayo clinic called the

> MELD which is becoming popular for use. It uses 3 different liver

> indicators calculated into a numerical sliding scale which can more

> accurately predict the mortality chances of a patient in time intervals.

> here a no stages here...just numbers.

> Anyway it would seem as I said a confusion of terms. I'm sure there is

> no procedure in which a surgeon would go in and just cut out the

> cirrhosed parts.....it would be way too difficult scar tissue would be

> marbled all thru the liver and...... there is no need for it. If the

> liver is cirrhosing one would stop the reason it is cirrhosing...it's

> not cirrhosing because its cirrhosing if you understand what I mean in

> other words merely cutting out the scarred part does nothing to keep it

> from continuing to scar... you must stop the cause of the scarring.

> Sooooo.....let's assume instead he has liver cancer (which is what you

> seem to be describing)

> Now we can talk about removing only the damaged parts.....those parts

> which actually have tumors. This is a procedure that can and has been

> done to stop the spread of the tumors The remaining liver could then

> regenerate itself. Perhaps this is what he is talking about.

> If indeed he does have stage 3 cirrhosis

> then he should be evaluated for transplant and not te procedure he's

> talking about.

> I hope this lengthy response was helpful.

>

> jerry

>

>

>

[Guest guest]

Debby - hope you dont mind me joining in on this, but I wondered the same

thing. Here the drug goes under the name of Mercaptopurine and as you say is

used for leukaemia & listed as a chemo drug.

Regards Jan

Re: [ ] New to group!

>

>

> > Penny your post is confusing.... why is he on chemotherapy? Could it be

> > that he has liver cancer? That's a whole other different colored horse

> > than AIH. Chemo for the rest of his life? never heard of such a thing.

> > Either he is confused or you have misunderstood him.

> > As far as stage 3 cirrhosis goes it doesn't mean too much unless we know

> > what scale he is being measured on ...there are a few. Most common is

> > the Child-Pugh which has stages 1, 2a, 2b, and 3.

> > If he were at stage 3 here he would be exhibiting complications as this

> > is " end stage " cirrhosis....he probably would have

> > bleeding in his esophagus,(varices) a huge belly and swollen ankles,

> > (ascites and edema) and exhibit confusion or poor motor skills

> > (encephalopathy) He may have other complications such as jaundice,loss

> > of body hair, growing breasts, shrunken testes, itching, red spider

> > veins on his face and body and other complications. You didn,t mention

> > any of these so I know he isn't stage 3 Child=Pugh. There are a couple

> > other scales that I would have to look up but none that I know that go

> > beyond 4 stages.

> > And stage 3 in any of them would be serious and he would have at least

> > some of the complications have mentioned.

> > Recently a new scale has been introduced thru the Mayo clinic called the

> > MELD which is becoming popular for use. It uses 3 different liver

> > indicators calculated into a numerical sliding scale which can more

> > accurately predict the mortality chances of a patient in time intervals.

> > here a no stages here...just numbers.

> > Anyway it would seem as I said a confusion of terms. I'm sure there is

> > no procedure in which a surgeon would go in and just cut out the

> > cirrhosed parts.....it would be way too difficult scar tissue would be

> > marbled all thru the liver and...... there is no need for it. If the

> > liver is cirrhosing one would stop the reason it is cirrhosing...it's

> > not cirrhosing because its cirrhosing if you understand what I mean in

> > other words merely cutting out the scarred part does nothing to keep it

> > from continuing to scar... you must stop the cause of the scarring.

> > Sooooo.....let's assume instead he has liver cancer (which is what you

> > seem to be describing)

> > Now we can talk about removing only the damaged parts.....those parts

> > which actually have tumors. This is a procedure that can and has been

> > done to stop the spread of the tumors The remaining liver could then

> > regenerate itself. Perhaps this is what he is talking about.

> > If indeed he does have stage 3 cirrhosis

> > then he should be evaluated for transplant and not te procedure he's

> > talking about.

> > I hope this lengthy response was helpful.

> >

> > jerry

> >

> >

> >

[Guest guest]

Hello and welcome. I don't believe that there is a group which is

specific to babies/children with brachycephaly. This group includes

parents of babies with brachycephaly, plagiocephaly, Scaphycephaly

and also some babies with craniosynostosis.

If I'm understanding you correctly, your Daughter is 3 years old and

has Brachy. Unfortunately, at her age, the only way to reshape her

head would probably be surgery. As far as her head size, 47cms (18.3

inches) is probably about an average size for her age. By 3 years

old, I believe that all the sutures WOULD already be closed (someone

can correct me if I'm wrong on that).

My Daughter had a CT scan to rule out Craniosynostosis (premature

fusing of the sutures) at 6 months old because she had

plagiocephaly. Cranio was ruled out and she received a cranial

remoulding band to correct her mishappen head. These remoulding

bands are usually only used up until a baby is about 24 months old.

I'm so sorry that your Dr did not address your concerns about her

head shape. This happens all too often and it is very sad.

Good luck with the scan and please keep us updated.

Jen

(20 mo), tort resolved, Hanger Band Grad

(4 years)

>

> Hiya, Im mum to Molly 3 and Amy 9.

>

> Im not sure if this is the right group, ive looked for

Brachycephaly

> but cant find a group for that. Im also a member of the

Microcephaly

> group.

>

> Molly was born with a normal shaped head on the 50th line of her

> chart, since being a few weeks old its gone very flat at the back.

> She had x-rays at 9mth which said thay the sutures had not fused so

> the hosp pretty much left it there. Since then however her head

hasnt

> grown much and is now only 47 cms (shes 3yrs 8mth). Her nursery

have

> said she has some developmental delays and her speach is very poor

> but she starting speach therapy next week for that. Shes also been

> booked in for a brain scan because the dr thinks her brain may have

> stopped growing hence the small head. As you can understand, im

> worrying like mad. If the scan comes back that the sutures have

fused

> what can I do?? will she need an op??? is she now too old to have

the

> op and is the damage already done??? Further more, the hosp will

have

> one hell of a large law suit on its hands if the sutures have fused

> when they said they hadnt.

>

> I suppose I can only wait until the scan comes through and the

results

> are clear, but quite frankly its like being on 'death row' not

knowing

> whats happening with your child and feeling totally helpless and

> useless (

>

> I just need support from people who have an idea what im going

through

> i suppose. Sorry to waffle on.

>

> mum too Molly

>

[Guest guest]

Hi ,

Welcome to the group.

Type of suture/fontanelle Time to closure

Metopic suture Nine months to twoyears

(may persist into adulthood)

Coronal, sagittal,

lambdoid sutures 40 years

Anterior fontanelle Nine to 18 months

Posterior fontanelle Three to six months

Posterolateral fontanelle Two years

Adapted with permission from Aviv RI, Rodger E,

Hall CM. Craniosynostosis. Clin Radiol 2002;57:94.

Check this out:

www.aafp.org/afp/20040615/2863.pdf

When is the scan scheduled for? You and your family will be in my

prayers. Please let us know how you make out.

-- In Plagiocephaly , " andrea " <wayneandandrea@...> wrote:

>

> Hiya, Im mum to Molly 3 and Amy 9.

>

> Im not sure if this is the right group, ive looked for Brachycephaly

> but cant find a group for that. Im also a member of the Microcephaly

> group.

>

> Molly was born with a normal shaped head on the 50th line of her

> chart, since being a few weeks old its gone very flat at the back.

> She had x-rays at 9mth which said thay the sutures had not fused so

> the hosp pretty much left it there. Since then however her head hasnt

> grown much and is now only 47 cms (shes 3yrs 8mth). Her nursery have

> said she has some developmental delays and her speach is very poor

> but she starting speach therapy next week for that. Shes also been

> booked in for a brain scan because the dr thinks her brain may have

> stopped growing hence the small head. As you can understand, im

> worrying like mad. If the scan comes back that the sutures have fused

> what can I do?? will she need an op??? is she now too old to have the

> op and is the damage already done??? Further more, the hosp will have

> one hell of a large law suit on its hands if the sutures have fused

> when they said they hadnt.

>

> I suppose I can only wait until the scan comes through and the results

> are clear, but quite frankly its like being on 'death row' not knowing

> whats happening with your child and feeling totally helpless and

> useless (

>

> I just need support from people who have an idea what im going through

> i suppose. Sorry to waffle on.

>

> mum too Molly

>

[Guest guest]

The Coronal, Lambdoid and the Sagittal don't fuse until well into adulthood.

www.aafp.org/afp/20040615/2863.pdf

> >> > Hiya, Im mum to Molly 3 and Amy 9.> > > > Im not sure if this is the right group, ive looked for > Brachycephaly > > but cant find a group for that. Im also a member of the > Microcephaly > > group.> > > > Molly was born with a normal shaped head on the 50th line of her > > chart, since being a few weeks old its gone very flat at the back. > > She had x-rays at 9mth which said thay the sutures had not fused so > > the hosp pretty much left it there. Since then however her head > hasnt > > grown much and is now only 47 cms (shes 3yrs 8mth). Her nursery > have > > said she has some developmental delays and her speach is very poor > > but she starting speach therapy next week for that. Shes also been > > booked in for a brain scan because the dr thinks her brain may have > > stopped growing hence the small head. As you can understand, im > > worrying like mad. If the scan comes back that the sutures have > fused > > what can I do?? will she need an op??? is she now too old to have > the > > op and is the damage already done??? Further more, the hosp will > have > > one hell of a large law suit on its hands if the sutures have fused > > when they said they hadnt.> > > > I suppose I can only wait until the scan comes through and the > results > > are clear, but quite frankly its like being on 'death row' not > knowing > > whats happening with your child and feeling totally helpless and > > useless (> > > > I just need support from people who have an idea what im going > through > > i suppose. Sorry to waffle on.> > > > mum too Molly> >>

[Guest guest]

You can also check out the kapps kids webiste. I beleive they talk

about craniosynostosis alot on that site. There is also a

group for children 2 or older with plagiocephaly and they may also

be able to support you there. Many of them are also experiencing

speech delays as well as developmental delays with their plagio

children. Try not to feel so bad. This is not your fault. I hope

they can figure this out right away for you guys. Welcome to the

group and please let us know how things go. Here's a big hug to you

and your family ((((( ))))).

>

> Hiya, Im mum to Molly 3 and Amy 9.

>

> Im not sure if this is the right group, ive looked for

Brachycephaly

> but cant find a group for that. Im also a member of the

Microcephaly

> group.

>

> Molly was born with a normal shaped head on the 50th line of her

> chart, since being a few weeks old its gone very flat at the

back.

> She had x-rays at 9mth which said thay the sutures had not fused

so

> the hosp pretty much left it there. Since then however her head

hasnt

> grown much and is now only 47 cms (shes 3yrs 8mth). Her nursery

have

> said she has some developmental delays and her speach is very

poor

> but she starting speach therapy next week for that. Shes also been

> booked in for a brain scan because the dr thinks her brain may

have

> stopped growing hence the small head. As you can understand, im

> worrying like mad. If the scan comes back that the sutures have

fused

> what can I do?? will she need an op??? is she now too old to have

the

> op and is the damage already done??? Further more, the hosp will

have

> one hell of a large law suit on its hands if the sutures have

fused

> when they said they hadnt.

>

> I suppose I can only wait until the scan comes through and the

results

> are clear, but quite frankly its like being on 'death row' not

knowing

> whats happening with your child and feeling totally helpless and

> useless (

>

> I just need support from people who have an idea what im going

through

> i suppose. Sorry to waffle on.

>

> mum too Molly

>

[Guest guest]

Hello I am and I am a 32 year old mother of 4 in MO. I have a 6 year old

with LD and ADD, a 5 year old with Aspergers, ADHD, and Mood Disorder, a NT 3

year old and a 2 and a half old PDD. We are looking for a better state to live

in. Is WI pretty decent? My 5 year old has been hospitalized 4 times here and

all they want to do is drug him up. He starts kindergarten in the fall and we

would like him somewhere with more services. any info would be helpful. Thanks!

katushac <katushac@...> wrote: Hi all! I'm Katusha- a 30 yr. old mom of

3 in WI. I have a NT 12 yr.

old, an almost 9 yr old with Aspergers and ADD, and a NT 3 yr old.

I'm looking foreward to getting to know the group!

[Guest guest]

WI has it's good and bad. We have this waiver system to help finance therapies,

but it draws people in from out of state so there's now a two year waiting list.

There are plenty of places here that also want to keep kids drugged and

hospitalized, but we've got some really great alternative places also. A couple

in our support group are opening up a DAN clinic near to me which will focus on

biomedical treatments.

Swent <angelbaby_girl1974@...> wrote: Hello I am and I am a 32

year old mother of 4 in MO. I have a 6 year old with LD and ADD, a 5 year old

with Aspergers, ADHD, and Mood Disorder, a NT 3 year old and a 2 and a half old

PDD. We are looking for a better state to live in. Is WI pretty decent? My 5

year old has been hospitalized 4 times here and all they want to do is drug him

up. He starts kindergarten in the fall and we would like him somewhere with

more services. any info would be helpful. Thanks!

katushac <katushac@...> wrote: Hi all! I'm Katusha- a 30 yr. old mom of

3 in WI. I have a NT 12 yr.

old, an almost 9 yr old with Aspergers and ADD, and a NT 3 yr old.

I'm looking foreward to getting to know the group!

[Guest guest]

Welcome, !

Sorry that you are experiencing so much pain. Have you told your physician

about the pain? Your chest pain? If not, I would call ASAP. If your

physician already knows about it, then I would get a second opinion.

How much MTX are you taking?

a's site has a lot of good information:

http://arthritissupport.info/

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group!

Hi! My name is and I was recently diagnosed with RA. I have

been on meds for about two months now - methotrexate once weekly and

diflunisal twice daily. It doesn't seem to be helping. Actually the

reason that I am here now is because at this very moment I feel like

crying because my legs are hurting so bad. The pain seems to start in

my upper thighs and radiates all the way down my legs. Is this

radiating pain common with RA? Also, does anyone else have chest

pains with RA? This is one symptom that is very scary. Any info

about this terrible disease and any suggestions for question that I

need to ask my doc would be great. Thanks in advance.

[Guest guest]

Hi :

Welcome to the group - we have a great bunch of people

here, very caring and supportive, and lots of

information. I would definately be calling my doctor

if I had any chest pain - could be that you are

beginning to have some costochondritis which is pretty

common with RA and does have chest pain as a symptom.

But it is very important that you call your doctor and

let him know of your chest pain.

As far as pain radiating down the legs, I have that as

well. Now, I also have fibromyalgia, so I could also

have the type of pain you are describing from that -

it gets difficult at times to tell if it is the fibro

or the RA, all I know is that I am in pain. Is it

more muscular or in the joints? I don't know what the

medication you are on is, diflunisal? but from the

doseage I would assume it might be an

anti-inflammatory? How much Mtx are you on - after

two months, depending on the dose, you should be

feeling some benefit. However, your doctor might also

want to consider increasing the Mtx dose or adding to

it. Sometimes a combination of medications works best

for some people. I take Enbrel, Mtx, Mobic and Ultram

for pain and these meds are helping with my RA. I

take others for the fibro. I was dx with RA 8 years

ago, and am 51 (52 next month), and have been on other

medications too, so if there are any you want to ask

about, please feel free, and if I don't have the

answers, then someone else here will.

RA is a very difficult disease to cope with because

you never know what day will be good, and that day may

start out okay, and end up bad or vice versa. It can

be very frustrating to deal with in that regard. The

pain can also cause problems with sleep, and if you

don't get enough rest or sleep, the pain will increase

simply because you don't have the energy to deal with

it. Make sure that you get the sleep issue dealt with

too, if that is a problem.

Anyway, please do call your doctor to report the chest

pain - I hope it is nothing serious, and I hope your

leg pain gets better - take care and let us know -

Kathe in CA

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Jeff,

Welcome. Happy New Year. Contact Igenex Labs in Palo Alto Calif

(www.igenex.com) they helped me find a lyme doctor after my ENT doctor insisted

I see a lyme doc.

I'm new to the group too. I was just recently diagnosed with lyme. Been sick

for almost 4 years now.

Take Care,

Chelsea

Jeff <jeepcj_6@...> wrote:

Hello everyone,

New to the group. Joined to help find some assistance and support.

I was seeing a PA here in Colorado who believed that I am suffering

from Lyme disease. Unfortunately she has left the office that she

was working at. The office will not provide information on where

she is now practicing at. Terribly frustrating since nobody else in

the office " specializes " in Lyme.

I have had symptoms for more than 4 years now, but the symptoms

became debilitating in January 2007 and I had to leave my job.

Starting in December 2003 I had muscle pains in my legs. It then

gradually got worse and moved to my arms. I also began to be very

tired even though I sleep 10-12 hours per night. In January 2007,

my arms hurt terribly. I began to have cognitive problems and my

speech was stuttered. I still have muscle problems, speech

stuttering, and thought process problems.

SO... Does anyone else have similar symptoms (the speech is the

real kicker). Anyone able to provide a " referenc " for a Dr in

Colorado who can help? Thanks in advance!

-Jeff

Chelsea

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

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Jeff,

Your symptoms sound all too familiar. I remember the first time I was at

the real Lyme specialist doctor's office and started speaking to other

patients, who sounded just like me, the stuttery speach, like your brain short

circuits and you just have to try so hard to even get the words out. Even

though I

felt really bad for these other guys, I no longer felt alone with the

disease, I felt normal (at least normal for Lyme patients) amongst the other

patients. I no longer stutter much I did have two rounds of IV therapy in the

last two years), but I still have a lot of the other neurological problems. I

hope they treat your illnell early enough so you can make a full recovery.

Dagmar

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Welcome, ! Although MTX worked pretty well for me,

eventually I had to move on to one of the biologicals. Like you, I

had a bruising problem, particularly on my inner arms. In my case,

though, it appears that my anti-inflammatory was the culprit.

Getting off MTX didn't stop the brusing or the low platelets, but

switching from Naproxen to Celebrex seems to have stopped both.

Increasing the dose of MTX does cause some increased fatigue for most

people, but for many of us it evens out over time. I always got

knocked flat with fatigue on each increase, but after a week or two

at that dose my body adjusted.

Also like you, my disease moved very quickly. It's great that you

got diagnosed so quickly. You will likely be able to get on top of

this soon. It takes a lot of tweaking of meds. And even when you

get the meds right, eventually they will have to be changed so we

have to get used to that scenario. Yes, you will likely still have

some flares even when you get on a med regimen that works pretty well.

Ask your rheumy about trying one of the newer biological drugs. They

can be taken alone or preferably in combination with a lower dose of

MTX. I'm currently taking Humira. Today I feel like my old self.

But a few days ago I was aching enough at night to disturb my sleep

and a couple of months ago I had a pretty bad flare in spite of the

meds. It's an up and down thing for most of us. But compared to a

year ago, my life is great!

Don't forget that you must pace yourself and get plenty of rest. If

you overdo, you will pay no matter what drugs you take and how well

they work for you. This is the hardest part for me - to slow down

and get used to a slower lifestyle and pace.

best regards,

sherry z

--- In , " "

>

> My name is and I live in NC. I was diagnosed with

> Psoriatic Arthritis last fall.

[Guest guest]

Hi

I would be more suspicious of the Prednisone for the water retention.As for your

other symptoms, remember that methotrexate takes time to work. It is an

anti-inflamatory drug and not a pain killer.

Perhaps your Rhuemy can give you a pain killer to get you through the adjustment

period. Good luck and God Bless

Walt

---- In , " "

>

> My name is and I live in NC. I was diagnosed with

> Psoriatic Arthritis last fall.

[Guest guest]

Hi ,

I never thought to ask that question (about the rapid way in which the

symptoms presented themselves), but I would like to hear some responses

on that also. My PA started very much like you described...within just a

couple of months I went form being just fine, to " what the heck is

going on " ????

Thanks

--- In , " " <jldwalston@...>

> I'm also concerned about the rapid way in which my

> symptoms presented themselves and progressed, in a relatively short

> period of time, and what, if anything, that means as to the severity

> of this disease.

[Guest guest]

Hi - Welcome to the group! I hope you find the answers you

are looking for here. Unfortunatly I cannot help you now. My son

will be starting Methotrexate by injection next week because taking

it orally has not helped. I wasn't aware that it may cause fatigue

and am surely hoping it doesn't do that for Grant. Everything I

have heard about Methotrexate has been positive!

Best Wishes & Grant/10, PsA/Uveitis

, " "

>

> My name is and I live in NC. I was diagnosed with

> Psoriatic Arthritis last fall.

[Guest guest]

Thanks to everyone who has replied to my post! Although I'd never wish PA on

anyone, it is at least, a little comforting to know I am not alone.

It is my impression that my rheumy began me on the " gold standard " course of

Methotrexate to begin with. We didn't want to start straight off with the

biologics, although that was a plan initially when there was the thought of more

spinal involvement (although spinal involvement is present, it is still minor,

and the majority of my lower back pain appears to be originating from a torn

disk). When I had the bruising, I had been on Lodine, 200 mg, 3x a day. I found

that keeping it in my system religiously was the only way to minimize pain. My

rheumy said that either the Lodine or the Methotrexate could be the culprit of

the bruising (although my platelet tests came back okay during the bruising

episode) and I've eased off of the Lodine, as well as reduced the predisone

dosage for the water weight gain. I literally lost 15 pounds of water weight in

a matter of about 2 days, after gaining it just as quickly a week before. Prior

to that I had to go out and buy new shoes, as there was nothing I could get my

feet into. Soft tissue swelling of my hands was immediately visible on the

X-rays that were taken initially, and I've had to purchase new wedding rings 2

sizes larger than I've worn for 13 years, and some days I cannot even get those

off. I have one finger (a pinky) that is already becoming deformed and turning.

Reducing the Lodine I suspect has contributed to the resurgence of pain.Funny

though - pain is actually worse now than before I was on anything. I'm hobbling

around like I am far older than my 42 years, I lost control of a knife the other

day and sliced a finger while cooking, and I'm often unable to do simple things,

like control a pair of scissors, or even open a ziplock bag. This is very new to

me still, and to be honest, it is a bit frightening.

I have to say that I have not yet wrapped my mind around everything, and need

real-world advice. Researching online just gave me the basics on the disease,

and although it was a great resource going into months of testing to be

informed, I am seeking additional information now. I would very much like to

hear everyone's experiences and advice, such as:

1) Explain to me about flares. You would think successful treatment would bring

PA under control, yet flare ups, sometimes severe, are apparently still a

reality. What happens during your flares? Are they a minor increase in pain and

stiffness, or can they be so severe that other things happen in conjunction with

them? What do you feel initiates a flare up? How long do your flares tend to

last for you? What helps you through them? Does your skin flare along with your

joints? (My P is almost entirely localized to my scalp, and prior to the

emergence of PA, I had not had an episode in over 10 years)

Have you found any dietary changes to be effective in helping you manage your

PA?

How about supplements?

Alternative therapies?

Any suggestions for countering the fatigue (sometimes extreme) that goes along

with PA or the Methotrexate?

Someone mentioned pain relivers in another post. What pain relivers have you

found most helpful? (I have GERD, so NSAIDs are out - although I took Lodine, it

greatly aggravated the GERD).

Any tips for waking up in the night due to pain?

Have you been able to continue your accustomed lifestyle, both work and leisure?

Sorry to bomb you guys with questions, but thank you guys so much!!!

[Guest guest]

My name is Regi and I live in Georgia. I am married with a grown

daughter and son (although we treat Micky our dog like a child

sometimes). I was diagnosed with PA a few months ago after an

accident in 2001 where I slipped and broke my back. (Not as bad as

it sounds, I recovered from that with the help of a brace for a

time). I have no rash, although I did have a possible outbreak when

I was in my 20's, it was treated and went away. After a few years of

increasing pain and loss of mobility my new doctor sent me to a to my

rheumatologist. They had tested my twice for RA and wrote it off to

aging. (I am only 49). Then my nails started to change.

I take 15 MG of Methotrexate a week (skipped a week last week so I

could take antibiotics), 1-3 MG of Folic acid a day and Tramadol. I

did have mouth sores, but they went away. I'm in the " hanging in

there " stage also. I am sure it will get better. I have seen some

positive change (my nails are not changing anymore!!! Yea). I do not

like taking Methotrexate, but out of my choices... I'm happy. I do

see slight positive change and have positive thoughts about the

future.

But, saying that, I am so tired of being tired, I have so much to

do. I was a massage therapist, now I have a few lighter clients and

focus on the skincare half of my business.

I'm tired and I hurt and I HATE whining. (Laughing because I hate to

use the hate word!).

I'm going to kick this. I know it, but I can't make up my mind if I'm

going to be tough or just whine about it. It just felt good to get

that off my chest, thanks for letting me blow some steam. I keep it

positive with my husband and though a rant would get some of it off

my chest.

Off to the doctor again tomorrow.

Smile,

Regi

[Guest guest]

>

> 1) Explain to me about flares. You would think successful treatment

would bring PA under control, yet flare ups, sometimes severe, are

apparently still a reality. What happens during your flares? Are

they a minor increase in pain and stiffness, or can they be so severe

that other things happen in conjunction with them? What do you feel

initiates a flare up? How long do your flares tend to last for you?

What helps you through them? Does your skin flare along with your

joints? (My P is almost entirely localized to my scalp, and prior to

the emergence of PA, I had not had an episode in over 10 years)

Some people go into complete remission - either spontaneously or drug-

induced. But for most of us, we never quite go into complete

remission and do have flares from time to time.

My flares vary from just a slight increase in stiffness and pain all

the way to really incapacitating pain that confines me to a chair for

several days, and swelling of joints and redness and fever in the

joint. Thankfully, the severity of my flares seems to be mostly

subsiding over time - I guess as the meds are getting better overall

control of the disease. However, just a couple of months ago, I had

a major flare that lasted about 3 weeks.

Flares are initiated by infection or even minor illness like the

sniffles or an attack of nasal allergies. Also by overdoing and

getting too fatigued. By using my hands and/or my feet too much. If

I stand or walk too long I tend to flare at least slightly. Or if I

drive or ride in a car for more than about an hour. Emotional upset

can cause a flare. That last major flare I had starte 24 hours after

I got my flu shot. I'm convinced that triggered it. After all, the

whole point of an immunization is to stimulate your immune system to

develp antibodies against that disease. Our problem is that our

immune systems don't know when to STOP!

My flares last from a few hours to several months and everything in

between.

If a flare is bad enough, I go back on my Tramadol painkiller

temporarily. Also, I'm down to taking my anti-inflammatory just once

a day now but I increase it to twice during a flare. Ice and/or heat

really helps sometimes - mostly ice for me. Sleep is the best

medicine, if you CAN sleep. This is where the painkillers really

come into play - if I can mostly sleep through the pain eventually it

gets better.

The skin doesn't always flare at the same time as the joints.

Sometimes it's skin, sometimes it's joints, and sometimes (yuck!)

it's both at the same time. For me, the skin flares are the worst

because it's mostly on my soles and I can't walk.

>

> Have you found any dietary changes to be effective in helping you

manage your PA?

I did a careful and strict elimination diet when I was first

diagnosed and found no food triggers for me. Some people do, but I

did not. If you are overweight, however, any weight loss will help

reduce stress on joints and thus help the arthritis.

>

> How about supplements?

Folic acid when I was taking MTX. Calcium with D3 as directed by my

rheumy. Also, I recently added 6 supplements shown by controlled

clinical trials to " possibly " be helpful for PA. This list came from

the National Psoriasis Foundation website. I posted a link here a

couple of weeks ago about this. Let me know if you can't find it in

the archives and I'll repost it. The ones I'm taking are dong quai

and fish oil so far. I will add (one per week) shark cartilege and

turmeric and cayenne. I'm also using aloe vera gel on my lesions.

All 6 of these " may " help, so I'm trying them.

>

> Alternative therapies?

No. I'm waiting for controlled clinical trials that demonstrate any

effectivness for any of these.

>

> Any suggestions for countering the fatigue (sometimes extreme) that

goes along with PA or the Methotrexate?

Sleep!!!! As much as possible. Let as much work go as you can and

get as much sleep as you can! You can catch up later when you are

feeling better. Forget watching TV - just sleep. Forget cleaning

your house. Ask for help from friends and family. For months, I did

not do my own grocery shopping. Your friends all have to get

groceries every week anyway - they won't mind getting yours while

they're at it. I divided my list up among about 4 or 5 friends so it

wasn't so much for any one person. It's amazing what a relief it is

not to have to get groceries - you can spend that time sleeping! If

you have young children ask your friends to help out by watching them

so you can get some extra rest.

>

> Someone mentioned pain relivers in another post. What pain relivers

have you found most helpful? (I have GERD, so NSAIDs are out -

although I took Lodine, it greatly aggravated the GERD).

Do you find that MTX aggravates your GERD? If you are not already

taking meds for the reflux, ask your rheumy about it. I took over-

the-counter Zantac and it helped a lot.

I took Tramadol. I took it every 4 hours at first, day and night -

that's a lot. I was pretty drugged out then, back when the pain was

excruciating. As things improved I reduced the dose. I was really

happy when I got down to one in the morning and one at night. Then

just one at night. Now I only take it if I have a really big flare,

and once or twice a day even then.

>

> Any tips for waking up in the night due to pain?

Tramadol. And ice packs. I used to have to get up every night and

apply ice packs for anywhere from 30 minutes to 2 hours. I found hot

drinks to be soothing, too - herbal teas and such.

>

> Have you been able to continue your accustomed lifestyle, both work

and leisure?

I'm sorry to say, not really. My P on hands and feet, plus the bad

arthritis especially in feet, plus the plantar fasciitis caused me to

have to close my business and go on SS disability. I was completely

bedridden for several months. Then I was kind of chair-ridden for

another couple of months. Then I gradually worked up to where I

could do routine household chores (not heavy) and cooking as long as

I worked for 15 minutes then rested off my feet for 15 minutes. So

for a long time I was at about half pace. Now I'm working up from

there, carefully so as not to cause a flare. Still not able to

return to work as I can't drive far or walk far or stand for long or

use my hands for long. However, for many people it has not been so

drastic - every person's experience is different.

, I know what you mean about not being able to wrap your mind

around all this. And about being fearful. I was where you are not

that long ago. But my life has improved so much once I started

getting treatment. I'm very thankful and not nearly so despairing as

I was even a year ago. I am fully expecting to be back to my normal

activity level or close to it some day. I feel like I'm making

progress.

[Guest guest]

Hello ,

I haven't posted in a long time, but I felt compelled to comment on how you said

you had a rapid onset of PA. I thought that also when I was diagnose, but you

know the old saying, hind sight is 20-20. I remembered back

to a time when my feet hurt so bad I could hardly walk, then it turned into

horrible heel pain. I went to an ortho

that told me I had bone spurs, but they weren't what was causing the pain. He

finally said he didn't know and

told me it would just have to run it's course. Which it did in about 3 months

using heel cups in my shoes. I

blamed it on walking on cement floors all day at work. Another time my knee

swelled up and was painfull.

I remembered bumping it on the ladder while I was putting merchandise on an

overhead. It took another 2

to 3 months for that to go away. Another time my son gave me a big bear hug and

I swear he broke my rib

cage. Time after time I could remember unexplained pain that I always related

to something else because

most doctors cannot diagnose PA. When it seemed that I got PA all of a sudden,

my rheumy held up my

crooked pinky finger and informed me that that was also PA. I always blamed

that pain and deformity on ortho.

So, I believe that PA sneaks up on a person a little at a time, sometimes

insignificantly to the point that we

hardly notice a pattern because we are all too busy. Then one day BOOM, it

won't be ignored any longer.

I've been on disability for 4 years now, and I don't like it any better now than

I did then. I had raised all my

children and was ready to spend the rest of my time doing what I wanted to do.

Life is what it is. We always

find a way to cope. God never gives us more than we can handle. When you think

you can't handle it, that is

the time to ask Him to take over for a while. This disease makes one very tired

and the brain foggy at times.

God Bless,

Janet in Ca

[Guest guest]

Hi Janet,

My symptoms started EXACTLY the way you described...with the heel

pain. I thought they were heel spurs too, but then I started hurting

EVERYWHERE, but this was all within a couple of months.

The only thing that I can think of that may have been a symptom

earlier would be just sore spots here and there for no appparent

reason. Like what you said about your son hugging you and it hurting.

I can recall alot of times when my now ex-husband would touch/rub my

back or arm, and I would tell him that it hurt, or was tender. He

would always say " that should not hurt " . Do you think that was part

of the PA??

> Hello ,

> I haven't posted in a long time, but I felt compelled to comment on

how you said you had a rapid onset of PA.

[Guest guest]

You might find it advantageous to take a medication that evens out your moods

for the sake of your loved ones. I know I had to.The steady pain can cause your

nerves to jangle sometimes and you will find that this can help. There is as you

know no known cure or cause fro this disease, but it is quite debilitating at

times.Luckily it comes in flare ups and does not debilitate all the time.I wish

you well and welcome to the group

Walt?

[ ] Re: New to Group!

I was diagnosed with PA a few months ago after an accident in 2001 where I

slipped and broke my back. (Not as bad as it sounds, I recovered from that with

the help of a brace for a time).

[Guest guest]

Hi ,

I have found that anything is possible with this disease, but I would mention

any and all such symptoms to your doctor for his opinion. I also have

fibromyalgia, so I have a hard time discerning which is causing what pain. I

take 12.5 mg of MTX a week rain or shine.

If I have a little pain, I take a Tylenol XS, if it is a lot of pain, I take a

Norco. If you have very many of the tender spots you mentioned, be sure to have

one of your doctors check your 16 tender spots for fibromyalgia. Not that they

can give you anything for it, but you would

at least have the knowledge of something else going on in your body.

I read somewhere about the guy who said that when he woke up in pain every

morning he at least knew he was still alive. So my best advice is, get up,

stretch, go put the coffee on, and live it to the best of your ability.

God Bless,

Janet in Ca

[Guest guest]

I just saw my rheumy today and have a new plan of attack, since I've been waking

at night stiff and in pain, and have been experiencing more pain in the last 3

weeks, where before it had come under control. She has me resuming the Lodine,

but 400 mg 2x a day, since the Lodine was working well for me. We may try to

extended release as well. Since I had scaled back on the Lodine, there has been

no more bruising; if bruising returns, then we'll know for sure what the culprit

is. Additionally, I'm moving from Prilosec OTC over to Nexium again to control

the additional GERD from the Lodine. She is also increasing my dose of

Methotrexate from 15 mg/week to 17.5 mg/week for 2 weeks, and then to 20 mg/week

for 2 weeks. I still have some swelling of the lower legs that I didn't think

was bad, but when she pushed her thumb into my shins the indentions stayed (is

this called pitting or something?) I'm holding on the current dose of

prednisone, but looking forward to a day when I can get off of it completely, as

I've gained 7 pounds in a month. Too bad there is not something that will

counter effect the prednisone munchies. I don't get hungry really, but when I'm

having a meal, sometimes it tastes so good that I have a larger portion than I

need. I have adopted more of a Mediterranean diet with healthy oils, that may

help. My rheumy does feel that once we find the mix that is right for me, I

won't have as much problem with what I call my wierd, disassociated, " puppet

hands " that I can't control. I currently work part time in merchandising and one

of my jobs is merchandising the costume jewelry for one of the major stores, and

all the jewelry on the little cards comes in either a tiny cellophane bag, or a

tiny baggie. On a regular day, I find myself fumbling, simply trying to open the

little packages, and if I have a lot of jewelry to put out I literally can

hardly move my hands the next day. I was getting excited that my nails had

finally almost grown out enough that there is no pitting, until I looked closer

and saw new pitting emerging at the cuticle. Oh well, I guess something had to

remain messed up... lol

Question for those of you who use or have used Methotrexate: I've done real well

on the dosage of 15 mg/week so far, with only a couple every light episodes of

nausea the day after dosing. As I increase the dose, do I increase the

likelihood of being able to tolerate the drug? I've been told to call in if I

have a problem with nausea - but where do you draw the line and call in?

Also for those of you who have experienced fatigue after your Methotrexate

dosage increases - how long did it last, and did you find the fatigue lasted

longer the more you increased the dose? I'm fatigued after the dosing for a

couple days (which is why I take it on a Saturday, so I can stay in my pajamas

all weekend if I need to), and have noticed that I am getting smaller hits of

fatigue after dosing, instead of constant, since I had been on the 15 mg/week

for over a month.

I asked my rheumy about supplements - I hear so much about glucosamine and stuff

like that - and she said that they usually don't have a benefit in PA, but said

that fish oil might be worth a try. Has anyone done fish oil supplements?

Thanks again everyone! I look forward to the postings daily, and am working my

way through the archives.

jennifer

[Guest guest]

Answering 's questions:

I had less nausea the longer I stayed on MTX. The Nexium might also

help you with the nausea, by the way. I took the anti-reflux med

ranitidine the day before, the day of, and the day after my dose.

That took care of my nausea completely. If it doesn't, ask her if

you could take some Benadryl. That helps many people overcome the

nausea.

Just like the nausea, my fatigue got less and less the longer I took

MTX. Mostly I just had to take a little nap on the afternoon after

my dose.

It's my understanding that glucosamine and condroitin help OA but

don't do a thing for RA or PA - totally different disease mechanisms

at work in OA from the inflammatory arthritis. I just started taking

fish oil 2 weeks ago. I can't say I notice any improvement at all.

The results of clinical trials on fish oil for RA and PA are

contradictory, with some showing efficacy and some showing no

measureable effect.

The National Psoriasis Foundation has an interesting article at

http://www.psoriasis.org/publications/advance/200506_herbchart.php

which gives the references for some clinical trials of natural

substances used to treat psoriasis and/or PA. If you look on the

chart, in the column marked " scientific evidence, " the initials " CCT "

indicate a controlled clinical trial was conducted. The footnotes will

give you the names of the researchers and actual journal references.

The substances demonstrating efficacy include aloe, cayenne, dong

quai,

fish oil (contradictory results), shark cartilage, and turmeric.

I found this to be a handy summary of what has been studied clinically

by reputable researchers.

I'm slowly adding each of the promising ones to my regimen. So far

I'm taking dong quai, turmeric, and fish oil, and I'm using aloe

gel. I can't say I see any positive effect at all so far.

glad to have you aboard, !

sherry z