Setback

[Guest guest]

-Misty,

Sorry to read is feeling yuck. How is he doing today???

hugs Helen and (8,systemic)

-- In , " misty_o_c " <misty_o_c@...> wrote:

>

> had been doing better. Tuesday, however, he came down with a

> stomach bug. Tossed his cookies in the middle of Blockbuster, though

at

> least he picked the small area of tile and missed the carpet! He

seemed

> ok then until after 1 am, when he spiked a fever. A cool shower and

> Tylenol brought it down and we took him to the pediatrician Wed.

Strep

> test came back neg, WBC was normal for the first time in months! We

did

> decide to put off his Enbrel shot that was due that night. So now,

his

> fever is spiking again, but we don't know if its still the bug or if

> its due to the lack of meds. He has kept the naproxyn down so far

> tonight, but he still has some fever and his rash is back.

>

[Guest guest]

Thank you for asking. He is still sick to his stomach and unwilling to

eat. He did not eat breakfast, so I made him some chicken noodle soup

to try and get him to eat lunch. We don't want to give him his meds on

an empty stomach, but when he won't eat at all, what can be done?

Misty & (7, systemic)

>

> -Misty,

>

> Sorry to read is feeling yuck. How is he doing today???

>

> hugs Helen and (8,systemic)

[Guest guest]

Mike,

Sorry to hear about the setback. I am much the same but with a shorter time

period. (It's only been 10 months sine my last surgery) As long as I do not

do much, I am resonably okay. But if I exercise too hard or work in the

yard or on a car too much, I am in quite a bit of pain.

Do you have problems doing simple things like walking on uneven surfaces?

Can you run or play sports?

I hope the OS visit works out okay.

Don

On 7/28/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> I was getting continually better over the last 2.5 years and was

> finally getting hopeful this spring that I was cured. The last few weeks I

> have had a drastic setback. I think it might be a combination of the fact I

> have been very physically active in my work, more so than in about three

> years, and the extreme heat. I tried not wearing my Tubigrips, but it was

> much worse in a matter of hours. I decided on a total RICE package. I made

> an appointment with my OS in a couple weeks, but I'm sure his answer will be

> either cortisone shots or drastic surgery and I am not ready for either yet.

> Just a little bummed.

>

> Mike

> MT

>

>

[Guest guest]

Mike,

I'm sorry to hear about your setback. Are you hurting

in a specific area with a specific activity, or just

" hurtin like h*ll " all over the knee(s)? Could you

have tweaked something that's going to need a little

TLC?

Have you tried, or thought about viscosupplementation

like Synvisc, or Supartz??

All the best.....ice is our friend.......uh huh!

nne

setback

I was getting continually better over the last 2.5

years and was finally getting hopeful this spring that

I was cured. The last few weeks I have had a drastic

setback. I think it might be a combination of the

fact I have been very physically active in my work,

more so than in about three years, and the extreme

heat. I tried not wearing my Tubigrips, but it was

much worse in a matter of hours. I decided on a total

RICE package. I made an appointment with my OS in a

couple weeks, but I'm sure his answer will be either

cortisone shots or drastic surgery and I am not ready

for either yet. Just a little bummed.

Mike

MT

[Guest guest]

Thanks for the concern Don and nne I haven't been able to run or play

sports for 5 or 6 years now, but I was content with that as long as I could walk

long distances reasonably comfortable.What is happening now is that when I walk

much distance, both knees start to throb and have a deep, sickening pain with

stinging around the kneecap. Then when I go to sit I get sharp stabbing pains.

It is not intolerable now, but I am frustrated what with anticipating the same

string of answers (or non-answers) I got before. I will try to manage the pain

better myself without depending so much on doctors----well maybe at first. I

might go into a different direction, maybe a pain specialist---or even

prolotherapy and make Mark happy . I might even try Synvisc or TLC sounds

even better. If I could just learn to manage the pain before it gets so bad

where I am bedridden again. It drives me nuts to lie around.

Mike

MT

Re: setback

Mike,

Sorry to hear about the setback. I am much the same but with a shorter time

period. (It's only been 10 months sine my last surgery) As long as I do not

do much, I am resonably okay. But if I exercise too hard or work in the

yard or on a car too much, I am in quite a bit of pain.

Do you have problems doing simple things like walking on uneven surfaces?

Can you run or play sports?

I hope the OS visit works out okay.

Don

On 7/28/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> I was getting continually better over the last 2.5 years and was

> finally getting hopeful this spring that I was cured. The last few weeks I

> have had a drastic setback. I think it might be a combination of the fact I

> have been very physically active in my work, more so than in about three

> years, and the extreme heat. I tried not wearing my Tubigrips, but it was

> much worse in a matter of hours. I decided on a total RICE package. I made

> an appointment with my OS in a couple weeks, but I'm sure his answer will be

> either cortisone shots or drastic surgery and I am not ready for either yet.

> Just a little bummed.

>

> Mike

> MT

>

>

[Guest guest]

Mike,

I don't know about others, but my OS said he has not had much luck with

synvisc. Right now I am hoping to be a Carticel candidate. I went to see

my PT yesterday and he also thought Carticel would be my best bet to get

back to doing what I want. (A little golf and tennis, maybe a ski trip ot

two).

I am 49 so I am towards the upper limit for carticel. I saw were they

recomment it up to age 55.

I knw there is risk, but I am in pain anyway.

Just my thoughts on where we are knee wise.

Don

On 7/29/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> Thanks for the concern Don and nne I haven't been able to run

> or play sports for 5 or 6 years now, but I was content with that as long as

> I could walk long distances reasonably comfortable.What is happening now

> is that when I walk much distance, both knees start to throb and have a

> deep, sickening pain with stinging around the kneecap. Then when I go to sit

> I get sharp stabbing pains. It is not intolerable now, but I am frustrated

> what with anticipating the same string of answers (or non-answers) I got

> before. I will try to manage the pain better myself without depending so

> much on doctors----well maybe at first. I might go into a different

> direction, maybe a pain specialist---or even prolotherapy and make Mark

> happy . I might even try Synvisc or TLC sounds even better. If I could

> just learn to manage the pain before it gets so bad where I am bedridden

> again. It drives me nuts to lie around.

>

> Mike

> MT

>

> Re: setback

>

> Mike,

>

> Sorry to hear about the setback. I am much the same but with a shorter

> time

> period. (It's only been 10 months sine my last surgery) As long as I do

> not

> do much, I am resonably okay. But if I exercise too hard or work in the

> yard or on a car too much, I am in quite a bit of pain.

>

> Do you have problems doing simple things like walking on uneven surfaces?

> Can you run or play sports?

>

> I hope the OS visit works out okay.

>

> Don

>

> On 7/28/06, Mike Bernhardt

<mlbernhardt@...<mlbernhardt%40cablemt.net>>

> wrote:

> >

> > I was getting continually better over the last 2.5 years and was

> > finally getting hopeful this spring that I was cured. The last few weeks

> I

> > have had a drastic setback. I think it might be a combination of the

> fact I

> > have been very physically active in my work, more so than in about three

> > years, and the extreme heat. I tried not wearing my Tubigrips, but it

> was

> > much worse in a matter of hours. I decided on a total RICE package. I

> made

> > an appointment with my OS in a couple weeks, but I'm sure his answer

> will be

> > either cortisone shots or drastic surgery and I am not ready for either

> yet.

> > Just a little bummed.

> >

> > Mike

> > MT

> >

> >

[Guest guest]

Mike -- I'm sorry to hear about your turn for the worse. I'm like you were --

could do my daily stuff, but not go on hikes or do anything repetitive like

treadmill w/o using knee tape. I know I asked you this before, but what was it

you had done that's made your knee(s) worse?

Thanks.

Ann

Re: setback

Mike,

Sorry to hear about the setback. I am much the same but with a shorter time

period. (It's only been 10 months sine my last surgery) As long as I do not

do much, I am resonably okay. But if I exercise too hard or work in the

yard or on a car too much, I am in quite a bit of pain.

Do you have problems doing simple things like walking on uneven surfaces?

Can you run or play sports?

I hope the OS visit works out okay.

Don

On 7/28/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> I was getting continually better over the last 2.5 years and was

> finally getting hopeful this spring that I was cured. The last few weeks I

> have had a drastic setback. I think it might be a combination of the fact I

> have been very physically active in my work, more so than in about three

> years, and the extreme heat. I tried not wearing my Tubigrips, but it was

> much worse in a matter of hours. I decided on a total RICE package. I made

> an appointment with my OS in a couple weeks, but I'm sure his answer will be

> either cortisone shots or drastic surgery and I am not ready for either yet.

> Just a little bummed.

>

> Mike

> MT

>

>

[Guest guest]

what was it you had done that's made your knee(s) worse?

Probably overuse My last surgery was over a year ago and I was

doing well for some time afterward.

Mike

MT

[Guest guest]

Well, bummer.

I'm working on finding an OS who will just give me a damned TKR. My menisci are

falling apart -- they get more brittle with age, and I swear I did nothing to

warrant the recent tear in my left knee. Now I have two bum knees. Got the

meniscus " fixed " (lost 1/3 of it) but it still hurts at the lateral end. I've

done a lot of research on knee implants & am looking for someone who (a) uses

the DePuy rotating platform knee

(http://www.jointreplacement.com/xq/ASP.default/pg.list/list_id.40/mn.local/newF\

ont.1/joint_id.6/joint_nm.Knee/local_id.36/nav./qx/default.htm) (the knee

doesn't bend like a hinge, which all the other implants I've looked at assume,

but as a hinge one part of which slides along the other part -- the DePuy gives

a more normal bend and better ROM; ( understands that even though I have nice,

thick articular cartilage, some parts of it are worn away (the chondromalacia)

and I don't mind giving up the good part to resume my life after 6 years; ©

does minimally invasive surgery. I figure at 64 I should be the one to decide

what to do with my knee. (There was one doc who told me you couldn't remove

good art. cartilage -- why not? Just saw it off like you do arthritic

cartilage.) Have a couple of appts coming up w/different docs.

I was kind of amazed at how little my insurance got charged for the meniscus

operation. The surgeon charged a little over $1800, and the anesthesiologist

only a few hundred. Haven't gotten the statement from the surgery center yet.

I thought any operation was megathousands.

Anyway, sorry you had a relapse. I hope you find a way to deal with it.

Ann

Re: setback

what was it you had done that's made your knee(s) worse?

Probably overuse My last surgery was over a year ago and I was

doing well for some time afterward.

Mike

MT

[Guest guest]

You are at the age doctors seem to fall over themselves wanting to do TKRs. You

might just go to the doctor and act ignorant as to your options and beg him for

relief from your pain and see what he suggests. I have found out many if not

most doctors seem offended when you suggest a solution and seem to go out of

their way NOT to follow that suggestion.

From the experience I have had, especially when I had poor insurance and priced

the procedures beforehand, the doctors really were not overpaid, especially when

you consider their expertise and risk. IMO it was the hospitals that really

soak you.

Mike

MT

Re: setback

what was it you had done that's made your knee(s) worse?

Probably overuse My last surgery was over a year ago and I was

doing well for some time afterward.

Mike

MT

[Guest guest]

Sorry to hear you are worsening Mike, TLC is all I can use right now. I have

actually started walking on a treadmill 3 times a day, 10 minutes at a time, to

get an mile of walking in. Frustrating when before my accident I ran 2 miles a

day..... every day.... all at once. Research Synvic and Supartz before you agree

to them as I believe they have made my pain worse. I have noticed that doctors

push one or the other Synvic or supartz and wonder if I was part of a test

study....lol. I also plan on a pain specialist after this baby is born. Pain

specialist is my first stop!!! The pain around your kneecap when walking..... is

it as if your kneecap is receiving a rugburn under there?? Thats the feeling I

suffer with most from walking. Take care of yourself!

Best of luck to you!!!

Mike Bernhardt <mlbernhardt@...> wrote:

Thanks for the concern Don and nne I haven't been able to run

or play sports for 5 or 6 years now, but I was content with that as long as I

could walk long distances reasonably comfortable.What is happening now is that

when I walk much distance, both knees start to throb and have a deep, sickening

pain with stinging around the kneecap. Then when I go to sit I get sharp

stabbing pains. It is not intolerable now, but I am frustrated what with

anticipating the same string of answers (or non-answers) I got before. I will

try to manage the pain better myself without depending so much on

doctors----well maybe at first. I might go into a different direction, maybe a

pain specialist---or even prolotherapy and make Mark happy . I might even try

Synvisc or TLC sounds even better. If I could just learn to manage the pain

before it gets so bad where I am bedridden again. It drives me nuts to lie

around.

Mike

MT

Re: setback

Mike,

Sorry to hear about the setback. I am much the same but with a shorter time

period. (It's only been 10 months sine my last surgery) As long as I do not

do much, I am resonably okay. But if I exercise too hard or work in the

yard or on a car too much, I am in quite a bit of pain.

Do you have problems doing simple things like walking on uneven surfaces?

Can you run or play sports?

I hope the OS visit works out okay.

Don

On 7/28/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> I was getting continually better over the last 2.5 years and was

> finally getting hopeful this spring that I was cured. The last few weeks I

> have had a drastic setback. I think it might be a combination of the fact I

> have been very physically active in my work, more so than in about three

> years, and the extreme heat. I tried not wearing my Tubigrips, but it was

> much worse in a matter of hours. I decided on a total RICE package. I made

> an appointment with my OS in a couple weeks, but I'm sure his answer will be

> either cortisone shots or drastic surgery and I am not ready for either yet.

> Just a little bummed.

>

> Mike

> MT

>

>

[Guest guest]

The pain around your kneecap when walking..... is it as if your

kneecap is receiving a rugburn under there??

Yeah. I just remember the first time. It felt like a rugburn, then

like sand, then like gravel, then like glass. I can't bear the

glass again. Thanks for the tip about synvisc.

Thats the feeling I suffer with most from walking. Take care of

yourself!

>

> Best of luck to you!!!

Thank you very much. That is the thing I appreciate most about this

group. People who understand your pain.

Mike

MT

[Guest guest]

Hi ,

As someone who has been told that Supartz might give

me some relief, I'm interested to hear why you think

it made your pain worse? Was it the injections? The

swelling? Or did you get a specific pain afterwards??

I'm not questioning your comment by any means, if

anything, I'm trying to be forewarned and understand.

Were you diagnosed with CMP, early stage or late

stage?? I've got exposed bone (no cartilage left)in

the trochlear groove and wonder if the SUpartz would

do anything for that. I know it doesn't work well for

later stage arthritis, but wonder about CM....

Thanks,

marianne

Re: setback

Sorry to hear you are worsening Mike, TLC is all I can

use right now. I have actually started walking on a

treadmill 3 times a day, 10 minutes at a time, to get

an mile of walking in. Frustrating when before my

accident I ran 2 miles a day..... every day.... all at

once. Research Synvic and Supartz before you agree to

them as I believe they have made my pain worse. I have

noticed that doctors push one or the other Synvic or

supartz and wonder if I was part of a test

study....lol. I also plan on a pain specialist after

this baby is born. Pain specialist is my first stop!!!

The pain around your kneecap when walking..... is it

as if your kneecap is receiving a rugburn under

there?? Thats the feeling I suffer with most from

walking. Take care of yourself!

Best of luck to you!!!

Mike Bernhardt <mlbernhardt@...> wrote:

Thanks for the concern Don and nne I

haven't been able to run or play sports for 5 or 6

years now, but I was content with that as long as I

could walk long distances reasonably comfortable.What

is happening now is that when I walk much distance,

both knees start to throb and have a deep, sickening

pain with stinging around the kneecap. Then when I go

to sit I get sharp stabbing pains. It is not

intolerable now, but I am frustrated what with

anticipating the same string of answers (or

non-answers) I got before. I will try to manage the

pain better myself without depending so much on

doctors----well maybe at first. I might go into a

different direction, maybe a pain specialist---or even

prolotherapy and make Mark happy . I might even try

Synvisc or TLC sounds even better. If I could just

learn to manage the pain before it gets so bad where I

am bedridden again. It drives me nuts to lie around.

Mike

MT

Re: setback

Mike,

Sorry to hear about the setback. I am much the same

but with a shorter time

period. (It's only been 10 months sine my last

surgery) As long as I do not

do much, I am resonably okay. But if I exercise too

hard or work in the

yard or on a car too much, I am in quite a bit of

pain.

Do you have problems doing simple things like walking

on uneven surfaces?

Can you run or play sports?

I hope the OS visit works out okay.

Don

On 7/28/06, Mike Bernhardt <mlbernhardt@...>

wrote:

>

> I was getting continually better over the last 2.5

years and was

> finally getting hopeful this spring that I was

cured. The last few weeks I

> have had a drastic setback. I think it might be a

combination of the fact I

> have been very physically active in my work, more so

than in about three

> years, and the extreme heat. I tried not wearing my

Tubigrips, but it was

> much worse in a matter of hours. I decided on a

total RICE package. I made

> an appointment with my OS in a couple weeks, but I'm

sure his answer will be

> either cortisone shots or drastic surgery and I am

not ready for either yet.

> Just a little bummed.

>

> Mike

> MT

>

> [Non-text portions of this message have been

removed]

>

>

>

[Guest guest]

I understand your frustration. Although we have not been on the mtx and have

never had any inflamation in the eyes we struggle daily now.? I hope that

inflamation in your daughters eyes stays gone and the med does the work.?

Veri & Jaye 15 poly

setback

My dd2 was diagnosed with JIA at 16 months. After a hellish year of flares every

2 months and steroid injections she was put on methotrexate and the drug that i

agonised over giving her gave us a year of 'health' and joy. The drs then

reduced her dose from 7.5 mg to 5mg for 3 months with a view to taking her off

the medication if all remained well. All seemed well and we went for the check

up expecting her to be taken off the drugs(the joints were looking great) when a

routine eye exam found inflammation in both eyes. Ater 3 weeks of 2 sets of

drops 3 times a day the inflammation has gone but we are back on 7.5mg

methotrexate for at least another year. I know I should be grateful that the

uveitis was caught and treated before any permanent damage was done and that

being back on the methotrexate will control the disease and allow her to lead a

normal life but I cant help but feel devastated and sad that after 13 months and

so much hope we're back to square one again. The unpredicatability of this

disease is unbearable, just when you think you're getting somewhere it comes

back to bite you. Sorry just needed to vent, sometimes this is just too hard.

[Guest guest]

Hi,

Try not to think of it as a setback but of a way to preserve your little ones

eye sight.I know how frustraiting it is because we have been there and done

that.Being systemic we don't have the eye issues but for you it's like dealing

with two differant chronic diseases.The arthritis is well controlled but the

Uveitis is not.You have EVERY right to be upset but you have to keep fighting.

  My son has been takeing MTX for 8+ yrs and Enbrel for 7+ yrs and we do not

taper,even though he is in his second medicted remission that is about 3yrs.We

just let him keep growing out of just the starting doses.Hang in there and keep

doing what you must do.

Hugs,

  Beck and 11 systemic

________________________________

From: rade_milena <rade_milena@...>

Sent: Monday, September 14, 2009 6:21:52 PM

Subject: setback

 

My dd2 was diagnosed with JIA at 16 months. After a hellish year of flares every

2 months and steroid injections she was put on methotrexate and the drug that i

agonised over giving her gave us a year of 'health' and joy. The drs then

reduced her dose from 7.5 mg to 5mg for 3 months with a view to taking her off

the medication if all remained well. All seemed well and we went for the check

up expecting her to be taken off the drugs(the joints were looking great) when a

routine eye exam found inflammation in both eyes. Ater 3 weeks of 2 sets of

drops 3 times a day the inflammation has gone but we are back on 7.5mg

methotrexate for at least another year. I know I should be grateful that the

uveitis was caught and treated before any permanent damage was done and that

being back on the methotrexate will control the disease and allow her to lead a

normal life but I cant help but feel devastated and sad that after 13 months and

so much hope we're back to

square one again. The unpredicatability of this disease is unbearable, just

when you think you're getting somewhere it comes back to bite you. Sorry just

needed to vent, sometimes this is just too hard.

[Guest guest]

Hi, Bee:

To reiterate, my main problems before this have been:

-Type II diabetes mellitus (had avoided electrolyte drink because of sugars in

limes/lemons)

-Diabetic neuropathy in the legs

-Possible IBS, tending toward diarrhea

-Daytime sleepiness

-Incontinence problems, more so at night, made worse by frequent urination due

to diabetes

-At least one kidney stone, plus kidney infection in late 2008

-Fairly severely overweight

I was recently in the hospital for 4-1/2 days due to another kidney infection.

I did not get the back pain like I did before; rather I just got sick and

lethargic. I was told I had a kidney abscess. I had 4-1/2 days of IV

antibiotics and IV fluids. My significant other called an ambulance to take me

to the ER. I had what is known as " altered level of consciousness. "

By the time I realized I was sick enough to go to the ER, I was no longer safe

to drive myself there. I was in the hospital August 24 through 28. I have been

home about two weeks now.

I retained a *lot* of water. I was really " blown up " by the time they turned me

loose. Also, the IV fluids seem to have worsened my diabetic neuropathy in my

legs. I had numb/sometimes painful feet before, but the neuropathy was to my

knees when I entered. When I left, I had some numbness all the way up to my

buttocks.

When I got home, I ended up urinating a lot. I took some taurine for its

diuretic effects. I also took some alpha-lipoic acid, chromium picolinate, and

vanadyl sulfate for their effects on blood sugar. In the hospital they put me

on some injected insulin. They sent me home with a prescription for clonidine,

but it made me feel weird, so I weaned myself off it.

I am gradually getting myself back onto your program, Bee. The hospital food

was so bad, and so inappropriate for a diabetic, that for a few days afterwards,

I ate fast-food burgers because I was hungry but did not feel like cooking. At

any rate, fast-food burgers were several steps up from the garbage the dietitian

thought appropriate to feed a diabetic.

I am a little afraid to use a lot of salt (even sea salt) now, for fear of

" blowing up " again with a lot of retained water. I am not doing the electrolyte

drink on a regular basis. I am back to eating broth and eggs for my first meal

of the day. Otherwise, I am mostly eating roasted meats (chicken, pork, and

beef) plus non-starchy vegetables with butter.

For the neuropathy, for a while I tried the oil of oregano diluted with olive

oil (found a bottle of diluted stuff at the health food store), and it did help.

I am also trying, right now, some lotion with capsaicin in it. I am back to

work, but the discomfort in my upper legs makes it harder to sit in my office

chair and work for extended periods of time.

Bee, my main questions are these:

1. Any suggestions for things to do to avoid the hospital again? I'm really

scared about the possibility of going back, which I don't want to do if I can

avoid it.

2. Should I be drinking lots and lots of water?

3. What about salt intake? Should it be less than 1-1/2 tsp per day?

4. Any more suggestions to ease my neuropathic leg pain?

I am hoping that the hospital will forgive the bill as part of their charity

program, as I have no way of paying it; but I still need to be able to work so

that we can eat.

I know this is kind of long, but I feel the need to give a fairly complete story

here. I will try to get the $$ together to get a private consultation with you

next month, but right now I need to make sure that I can sit down and work so as

to pay bills.

Thank you in advance.

Pam Maltzman

[Guest guest]

Hi,

 

The good news is that if she can get quiet on MTX.  She might of had it sooner,

but the methotrexate covered it, and quieted it.  That is what I am hoping for. 

It does take a higher does of MTX for the eyes than it does for the body.  At

uveitis.org (or the support area uosg.org)  there is a lot of reading available,

but one of the most important things is that one needs to be quiet off all

steroid (including drops) for 2 years before tapering starts.  The fact that she

was able to start a DMARD right away is simply amazing. 

 

My daughter started meds late, and then it became very difficult to find the

right med that works.  To find the right doseage on a growing child can be

frustrating as all get out.   Never settle for a Dr. that thinks eye drops are a

staple, or that inflammation above 1+ is not worth fighting.  At the uosg.org

site there is also a handbook that you can download for your daughters teachers,

principal and whoever else. 

 

Thinking of you,

' & a 13 yr jia/uveitis...asthma, allergies, vitamin D def....All of

which are quiet or in remission

From: rade_milena <rade_milena@...>

Subject: setback

Date: Monday, September 14, 2009, 4:21 PM

 

My dd2 was diagnosed with JIA at 16 months. After a hellish year of flares every

2 months and steroid injections she was put on methotrexate and the drug that i

agonised over giving her gave us a year of 'health' and joy. The drs then

reduced her dose from 7.5 mg to 5mg for 3 months with a view to taking her off

the medication if all remained well. All seemed well and we went for the check

up expecting her to be taken off the drugs(the joints were looking great) when a

routine eye exam found inflammation in both eyes. Ater 3 weeks of 2 sets of

drops 3 times a day the inflammation has gone but we are back on 7.5mg

methotrexate for at least another year. I know I should be grateful that the

uveitis was caught and treated before any permanent damage was done and that

being back on the methotrexate will control the disease and allow her to lead a

normal life but I cant help but feel devastated and sad that after 13 months and

so much hope we're back to

square one again. The unpredicatability of this disease is unbearable, just

when you think you're getting somewhere it comes back to bite you. Sorry just

needed to vent, sometimes this is just too hard.

[Guest guest]

Oh - I completely know how you are feeling. I think that the uveitis has been

by far the most frustrating part of all of this. Mostly because we have no idea

how things are until the opth takes a look into the eyes. It took us about a

year and a half to finally find the right thing to take away all of Grants

inflammation. He has been free of all inflammation in his eyes for 1 year now

and we just went from 10 mg down to 7.5 mg of mtx. Being inflammation free is

wonderful news! We just have to be patient with the medication part because I

know that I definately don't want to start all this over again just because we

tapered too soon!

Hang in there!

& Grant (12, psoriatic/uveitis)

>

>

> From: rade_milena <rade_milena@...>

> Subject: setback

>

> Date: Monday, September 14, 2009, 4:21 PM

>

>

>  

>

>

>

> My dd2 was diagnosed with JIA at 16 months. After a hellish year of flares

every 2 months and steroid injections she was put on methotrexate and the drug

that i agonised over giving her gave us a year of 'health' and joy. The drs then

reduced her dose from 7.5 mg to 5mg for 3 months with a view to taking her off

the medication if all remained well. All seemed well and we went for the check

up expecting her to be taken off the drugs(the joints were looking great) when a

routine eye exam found inflammation in both eyes. Ater 3 weeks of 2 sets of

drops 3 times a day the inflammation has gone but we are back on 7.5mg

methotrexate for at least another year. I know I should be grateful that the

uveitis was caught and treated before any permanent damage was done and that

being back on the methotrexate will control the disease and allow her to lead a

normal life but I cant help but feel devastated and sad that after 13 months and

so much hope we're back to

> square one again. The unpredicatability of this disease is unbearable, just

when you think you're getting somewhere it comes back to bite you. Sorry just

needed to vent, sometimes this is just too hard.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Great news on the absence of inflamation in the eye's I can relate to enduring

through uveitis! I was not yet 13 when I had my journeys beging into the world

of uvitis and my Full blown attak of JRA on my 13th birthday. At that time

though the hardest hitting drug they were using was Steroids, Cortisone to be

exact.

I do believe that diet does play a major role in controlling our JRA, despite

what some

doctors might believe. And subsequintly what ever irratates and makees the jra

flare,

will add to th problems of the other secondary conditions as welll. As an OLD

soilder in the ranks, of the jra war, to all the kid's and their parent's.

Keep them active and don't hold back from, which from the posts here is

what yall are doing. Yoll are their best alies in the second line of defense,

against

this enemy, call Arth-er-ritis!

Good Luck and good well to you all...

Morse aka Rusty O''Limbs

sytemic since 13 )during the rein of the diosaurs!)

____________________________________________________________

Best Weight Loss Program - Click Here!

http://thirdpartyoffers.juno.com/TGL2141/fc/BLSrjpTFoYebx3VYU7XsRVAitj8TMd6zU7AI\

A3qDHSkybH93Xs2FGFeBcJq/

[Guest guest]

Dear Pam,

Would you please break up your long message/questions into smaller messages so

it is easier for me to deal with it? This group is extremely busy, which now

has more than 60 messages per day, so any help you can give me is very

appreciated.

Thank you in advance.

Bee

>

> Hi, Bee:

> To reiterate, my main problems before this have been:

> -Type II diabetes mellitus (had avoided electrolyte drink because of sugars in

limes/lemons)

> -Diabetic neuropathy in the legs

> -Possible IBS, tending toward diarrhea

> -Daytime sleepiness

> -Incontinence problems, more so at night, made worse by frequent urination due

to diabetes

> -At least one kidney stone, plus kidney infection in late 2008

> -Fairly severely overweight

<snip>

[Guest guest]

Bee, I know that you prefer shorter messages... however, I thought it would be

kind of important to give a synopsis--because I know that with so many members

in this group, you might not remember everything about my major problems when

answering.

For instance: I seem to recall there was one time when you had told me to keep

doing the electrolyte drink, in a message just after I had stated I had stopped

doing the electrolyte drink because of concerns about blood sugar.

I am back on the diet and supplements. I need to work on getting my level of

good fats up to where it should be.

My main questions are these:

1. Any suggestions for things to do to avoid the hospital again? I want to

avoid having to go there again. I need to know more about how to take care of

myself in order to avoid this.

2. Should I be drinking lots and lots of water?

3. What about salt intake? Should it be less than 1-1/2 tsp per day?

4. Any more suggestions to ease my neuropathic leg pain?

Pam Maltzman

[Guest guest]

The sadness in you email is felt throughout this list. However, it is all to

common. Just when we think we have the meds worked out, they grow and gain 3

lbs. Even small # of lbs make a diffrence! My DD age, 9 3/4, (that is what she

would tell you) has had uveitis and it comes and goes. I was told at U of M

(MICHIGAN) that is what you want to see in uveitis. You do not want the constant

inflmation of the cells. I know it is an emotional coaster for me every 3

months! like you, we have been dealing with this problem for 8 1/2 years.

Historically, this next visit we will get back on eye drops, and maybe more MTX>

& Isabel Poly JIA, Uveitis, +++

>

> My dd2 was diagnosed with JIA at 16 months. After a hellish year of flares

every 2 months and steroid injections she was put on methotrexate and the drug

that i agonised over giving her gave us a year of 'health' and joy. The drs then

reduced her dose from 7.5 mg to 5mg for 3 months with a view to taking her off

the medication if all remained well. All seemed well and we went for the check

up expecting her to be taken off the drugs(the joints were looking great) when a

routine eye exam found inflammation in both eyes. Ater 3 weeks of 2 sets of

drops 3 times a day the inflammation has gone but we are back on 7.5mg

methotrexate for at least another year. I know I should be grateful that the

uveitis was caught and treated before any permanent damage was done and that

being back on the methotrexate will control the disease and allow her to lead a

normal life but I cant help but feel devastated and sad that after 13 months and

so much hope we're back to square one again. The unpredicatability of this

disease is unbearable, just when you think you're getting somewhere it comes

back to bite you. Sorry just needed to vent, sometimes this is just too hard.

>

[Guest guest]

I feel really bad for you about this.  Deeply.  Thank you for taking the

time to share it.  It will help so many.  I would guess it may be easy to

think " everything's over " when the right cocktail of drugs is found....

and drop one's guard.  You've let us all know that that isn't necessarily

true.  " Be optimistic but stay on guard " is what I got from your post.

 

Thank you.

~osh

 I know I should be grateful that the uveitis was caught and treated before any

permanent damage was done and that being back on the methotrexate will control

the disease and allow her to lead a normal life but I cant help but feel

devastated and sad that after 13 months and so much hope we're back to square

one again.

[Guest guest]

Rusty - Thanks for your words of experience! I had no idea there was someone in

this group that has had uveitis since they were a kid!There are a million

questions going through my head! I'll just bombard you with 2 though. Do you

still have flare ups of uveitis? Also has there been any damage to your eyes

because of the uveitis?

& Grant (12, psoriatic/uveitis)

>

> ,

> Great news on the absence of inflamation in the eye's I can relate to enduring

> through uveitis! I was not yet 13 when I had my journeys beging into the world

> of uvitis and my Full blown attak of JRA on my 13th birthday. At that time

> though the hardest hitting drug they were using was Steroids, Cortisone to be

exact.

> I do believe that diet does play a major role in controlling our JRA, despite

what some

> doctors might believe. And subsequintly what ever irratates and makees the jra

flare,

> will add to th problems of the other secondary conditions as welll. As an OLD

> soilder in the ranks, of the jra war, to all the kid's and their parent's.

> Keep them active and don't hold back from, which from the posts here is

> what yall are doing. Yoll are their best alies in the second line of defense,

against

> this enemy, call Arth-er-ritis!

> Good Luck and good well to you all...

> Morse aka Rusty O''Limbs

> sytemic since 13 )during the rein of the diosaurs!)

>

> ____________________________________________________________

> Best Weight Loss Program - Click Here!

>

http://thirdpartyoffers.juno.com/TGL2141/fc/BLSrjpTFoYebx3VYU7XsRVAitj8TMd6zU7AI\

A3qDHSkybH93Xs2FGFeBcJq/

>

>

[Guest guest]

Hi Pam,

Your leg pain is caused by toxins, even if your body isn't capable of

detoxifying it.

Bee

>

> Bee, one more thing:

>

> I am not sure if I made this clear to you, but before I went into the

hospital, the neuropathy in my legs was at a low level (both in intensity and

level in the legs). It got *worse* during the hospital stay (I suspect the IV

saline and antibiotics made it worse), and after I got out of the hospital, it

was pretty bad, to the point where it woke me up at night and made it difficult

to sit down in my office chair and work for extended periods of time.

>

> In the hospital, of course, I did not have access to the anti-candida diet and

supplements; and a lot of what they did give me (for " food " ) was not appropriate

for a diabetic, so I did not eat much of it. I was in the hospital from August

24-28.

>

> I have since gotten back on the diet and supplements (not fully on,

though--still building up my intake of fats other than coconut oil), but (due to

the timing of events) I sincerely doubt (with no disrespect meant) that the few

days I've been back on the diet and supplements has detoxed me to the point

where I can say that my leg pain is " retracing. "

>

> Right now I have capsaicin lotion on my legs, from the feet all the way up to

the buttocks, in an effort to make myself comfortable enough to earn a living.

Because, no matter what else happens, I need to be able to work.

>

>

>

> Pam Maltzman

>