joint pain

April 26, 2002

Hi,

Sorry I haven't been regularly reading the list, but things have been

overwhelming here. I do pop in time to time to see how everyone is

and to remind myself that I'm not alone.

It really saddens me to hear about all the kids with joint pains. It

would be horrible to be a young child in an achy body.

From a parent's point of view, it irritates me when Doctor's don't

try to alleviate some of the pain for these kids. A few things that

have helped other young children I know have been Kineret and Vioxx.

Kineret is an IL1ra inhibitor--basically blocking inflamation. I

don't know if it's been advertised, but there is a pediatric version

available. Also, I know of children taking 1/2 tabs of vioxx

prescribed by their doctors. It might not hurt to ask your

physicians to try a trial version of something to see if it helps

alleviate some of the discomfort.

Jamey has been sick with various things the past few weeks. Topped

everything off with a hefty dose of pneumonia. After months of

trying to get his weight up (we reached 135) we quickly dropped back

to 114lbs. At 6'3 " , he looks like a bag of bones. He just had a

central line put in today and we started total parenteral nutrition

this evening. It's never ending....

Sincerley,

Billings

April 27, 2002

Hi,

Wade had occassional mild joint pains of short duration in the past years,

however he began complainig fervently of his hands hurting & swelling last

summer. Shortly therafter his knees began aching & swelling & then it

progressed to his upper back (C spine area). After trying Advil & Alleve,

ice, hot packs, etc. the ped ordered a bone scan, primarily because of the

pain in his back. The scan was normal, so in August Wade was referred to a

pediatric rheumatologist. She did multiple tests & eventually diagnosed him

with JRA. He takes Vioxx once a day with no side effects that we are aware

of. The Vioxx keeps his joint pains & swelling either totally at bay or to a

dull roar, making it feasible for him to continue to do the activities that

he enjoys.

Wade is having a terrible time right now with his knees especially, but the

ped rheumatologist saw him while he was in the hospital & feels that this

flare was induced by the aseptic meningitis & will improve as that

resolves. Right now, they have d/c'd the Vioxx because he is on oral Toradol

but will resume it after the toradol is stopped next week.

The " puberty changes " is a subject that comes up alot in PID. I know people

whose kids have been " cured " at puberty or just after & I have also seen &

heard about those who see a progression of the disease with puberty.

Unfortunately, that is what we have seen with Wade. The last 8 - 10 months

have been really rough for him with break through infections, school

issues, " new " GI issues, the JRA & now this Aseptic Meningitis. Oh

wel....this too shall pass...right, Dale???

Sorry this got so long. Hope it helped a little. Hugs to all!

Beth, Mom to Wade, 15 (CVID,etc.)

>From: " mich2minn " <Mich2minn@...>

>Reply-

>

>Subject: Re: joint pain

>Date: Sat, 27 Apr 2002 04:33:01 -0000

>

>Hi,

>Sorry I haven't been regularly reading the list, but things have been

>overwhelming here. I do pop in time to time to see how everyone is

>and to remind myself that I'm not alone.

>

>It really saddens me to hear about all the kids with joint pains. It

>would be horrible to be a young child in an achy body.

>

>From a parent's point of view, it irritates me when Doctor's don't

>try to alleviate some of the pain for these kids. A few things that

>have helped other young children I know have been Kineret and Vioxx.

>Kineret is an IL1ra inhibitor--basically blocking inflamation. I

>don't know if it's been advertised, but there is a pediatric version

>available. Also, I know of children taking 1/2 tabs of vioxx

>prescribed by their doctors. It might not hurt to ask your

>physicians to try a trial version of something to see if it helps

>alleviate some of the discomfort.

>

>Jamey has been sick with various things the past few weeks. Topped

>everything off with a hefty dose of pneumonia. After months of

>trying to get his weight up (we reached 135) we quickly dropped back

>to 114lbs. At 6'3 " , he looks like a bag of bones. He just had a

>central line put in today and we started total parenteral nutrition

>this evening. It's never ending....

>

>Sincerley,

> Billings

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

April 27, 2002

Hello;

Thank you all for your help with my son Zachary. I know it was my first

time on the list, but we received a terrible virus to our computer.

Only area I can see it in is this list. I have to unsubscribe to save my

marriage - only half joking!!!!

Thanks again - Metz *Zachary 10 1/2 PID

Re: joint pain

> >Date: Sat, 27 Apr 2002 04:33:01 -0000

> >

> >Hi,

> >Sorry I haven't been regularly reading the list, but things have been

> >overwhelming here. I do pop in time to time to see how everyone is

> >and to remind myself that I'm not alone.

> >

> >It really saddens me to hear about all the kids with joint pains. It

> >would be horrible to be a young child in an achy body.

> >

> >From a parent's point of view, it irritates me when Doctor's don't

> >try to alleviate some of the pain for these kids. A few things that

> >have helped other young children I know have been Kineret and Vioxx.

> >Kineret is an IL1ra inhibitor--basically blocking inflamation. I

> >don't know if it's been advertised, but there is a pediatric version

> >available. Also, I know of children taking 1/2 tabs of vioxx

> >prescribed by their doctors. It might not hurt to ask your

> >physicians to try a trial version of something to see if it helps

> >alleviate some of the discomfort.

> >

> >Jamey has been sick with various things the past few weeks. Topped

> >everything off with a hefty dose of pneumonia. After months of

> >trying to get his weight up (we reached 135) we quickly dropped back

> >to 114lbs. At 6'3 " , he looks like a bag of bones. He just had a

> >central line put in today and we started total parenteral nutrition

> >this evening. It's never ending....

> >

> >Sincerley,

> > Billings

> >

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

June 26, 2005

In a message dated 6/26/2005 2:25:31 AM Pacific Standard Time,

dietdoc@... writes:

Any thoughts? Could sub-Q help?

,

Is Dani the pumpkin who had the knee pain before?? If not, is she on any

antibiotics at this time?? Is it the front or back of her knees?

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

June 27, 2005

Hi -

It may have been me that mentioned that joint pain may be related to immune

dysregulation. I just did some snooping on the net and learned that it may also

be related to Complement deficiencies (which can lead to autoimmune problems

such as lupus). She has never been checked for this...ugh...

Thanks so much for your thoughts. It seems that you have had to deal with

similar issues with Blake. I hope that IV fosomax does the trick.

(mom to la, low everything, dumb T-cells, chronic constipation,

and thriving).

momtoboywholoveshisgoats <momtoboywholoveshisgoats@...> wrote:

Hi!! , Mom to Blake, here

I was reading about the different posts about joint pain. Someone

mentioned that the Dr. thought it was related to the immunodificiency?

I personally have not heard this. But if it is pretty close(24-48

hrs.) after the infusion, it could be related to the speed, brand of

IVIG.

In Blake's case, he constantly has complained about not being able to

walk, his legs get heavy & a few other comments he makes. He really

has a lot of back pain. It usually is in the upper center. sometimes

he tells us it is on the sides in the upper portion. His Pulmo. &

Immuno. both agree that where he complains in the back area is form

Atelelectasis(collasp of small air ways). he is then given a 5-7 day

course of steroids & we go from there. When he has this pain, his

PFT's are usually bottomed out.

As for the joint pain, due to the steroids, Blake has been put at a

greater risk for Osteoporosis. Blake actually has " steroid induced "

Osteoporosis. He currently takes Actonel, 5 mg. daily to see if he

can get some kind of reversal. He has been on it for 3 yrs. But his

body has a hard time with this med. so we are looking in to the IV

form of Fosomax. There has been significant change in teens on this

form of Osteo med.

We found out inm 2002 that his Osteoporosis was Severe. Blaek was

9.He is now 13 & he still complains of joint pain. We were told that

when the joints start hurting, & it is close after his IVIG(15grams

every 2 weeks)it means that because he is sooooo depleated of IgG the

first palce it travels to is the joingts(we have been told this

several times) especially if it is ran at a rate tath is extremely

TOO fast for his body to process the IgG. Blaek has a set rate of

60cc. hrly. we can tell if they have " bumped " it higher, not just by

the pump, but by his complaints of not being able to walk or his legs

are just too heavy!!

I hope this helps some.

(mom to Blake, 13!!! CVID with Complete T-Cell

Dysfunction...15grams IVIG every 2 weeks, Severe Asthma,GERD,

Asperger's Syndrome(Autism),ADHD.............So many other things

going on.............Loves to read(obcession) & hates

Math..........in full BLOWN puberty mode right now......Watch out

world!!!! He even dislikes himself at the moment!!!!)

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

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

June 27, 2005

Kathleen --

Thanks for your note. It is so frustrating not having answers. I hate just

dosing her with pain meds and I know that you share the same frustrations with

your dear one. The joint pain is so weird and what concerns me now is that she

had a rash the same day the pain started. It is the type of rash that typically

shows up on her face when she is exposed to UV. She is so terribly

photosensitive -- even if she is wearing 40 SPF, she will get react. So, now I

am wondering if these things might go together -- as they do with autoimmune

problems. I will ask her immuno about this tomorrow.

Just when I think that we are managing her immune " irregularities " something

else comes up. I know you can relate and we are praying that you get some

answers with Conan soon. 8 months is a lot time to wait for answers but I just

read that it takes 8 years, on average, for a person to be properly diagnosed

with an immune disorder. Can you imagine that?

Thinking of you guys. Hugs,

Jess

trowlake <kkrt1@...> wrote:

Hi , we suffer here as well, with crippling leg and arm pains.

I started tracking it, and I can pinpoint it to like you said the week

of infusion 3rd week, and 2 days post IVIG... but also noticed it

after excercise( playing a long time).. We are in the midst of finding

out what is the story, muscle biopsy, to see if it may be mito, or

metabolic.... hopefully not, but we have been dealing with this for at

the very least 8 months now.. It is awful, when a child has this pain.

Conan cannot even put weight on his legs when this happens, and it is

not always at night,,,, Ironically after a wonderful day at my

friends, he was also up at 3.30 asking for medicine, and crying that

his ankle and legs hurt..... I am not sure of the correlation if it is

immune related, or something else, but I can understand your pain and

frustration... we have been doing Motrin, but like I told the doctors,

for how long,( hate to medicate) as soon as it is in his system, he

falls asleep... I also did really warm baths, and massage.. But

honestly nothing works bettter than the motrin. ( he cannot take

tylenol) liver problems.... I hope la will be o.k. not sure If

this helps.... but thinking of you...Kathleen

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

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

June 29, 2005

In a message dated 6/27/2005 8:34:49 PM Pacific Standard Time,

dietdoc@... writes:

She is so terribly photosensitive -- even if she is wearing 40 SPF, she

will get react. So, now I am wondering if these things might go together -- as

they do with autoimmune problems. I will ask her immuno about this tomorrow.

Hi Jess,

I just thought I'd tell you that I experience this same issue--mine is

because of Sjogren's Syndrome and Lupus. I have noticed many similarities

between

PID patients and autoimmune patients. But it's good to rule out autoimmune

disease if your child is having symptoms, just to make sure.

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

June 30, 2005

Our son had terrible joint pain while on IVIG, he hasn't complined of it in

over a year since we changed to daily sub Q

Amy J

November 30, 2006

Hi Pat,

Yes that is a similar product to the ImmuCell that has been discussed

here. The fascinating thing about this type of product is that it is a

natural pain reliever, while it is helping the body to repair the

joint. I found that it worked for me for plantar faciitis.

ImmuCell is definitely much less expensive at $24.

Many people don't know that HA (hyaluronic acid) is anti aging. It is

what makes our skin moist. It is also integral to collagen production,

which is integral to pretty much all body structures. It is great stuff.

Blessings

Donna

http://www.excellentthings.com

http://www.fountain-of-life-healing-school.com

Free E Book Download

AllieMax@... wrote:

>

> This is what I used,and still do, for terrible Hip & Groin Pain,I could

> hardly walk,and this is what worked for me.I don't buy it from the link

> below,I found it is much cheaper elsewhere.Pat

>

> *CellRenew

> Collagen Type II - Arthritis Support with Hyaluronic Acid ... Antiaging

> supplement for osteoarthritis, rheumatoid arthritis, liver cleanse,

> immune system health ... Do you experience stiff, sore joints in the

> morning ? Do you avoid doing today what you know you'll pay for tomorrow

> ... http://www.appliedhealth.com/retro_cellrenew.html

> <http://www.appliedhealth.com/retro_cellrenew.html>

>

> Pat, PA. USA

> http://www.AllieMax.homestead.com <http://www.AllieMax.homestead.com>

>

> <http://www.dogsadversereactions.com/nsaid/memorial15.html#angel>

>

> .

>

December 1, 2006

Vit C protects the integrity of the collagen, that's why it is also

'anti-aging'.

As far as joint problems are concerned : Boron - about 8 grams per day - seems

to be very effective curing them. Apparently Boron even cures Lupus

Erythematosis.

DCH

Re: JOINT PAIN

Hi Pat,

Yes that is a similar product to the ImmuCell that has been discussed

here. The fascinating thing about this type of product is that it is a

natural pain reliever, while it is helping the body to repair the

joint. I found that it worked for me for plantar faciitis.

ImmuCell is definitely much less expensive at $24.

Many people don't know that HA (hyaluronic acid) is anti aging. It is

what makes our skin moist. It is also integral to collagen production,

which is integral to pretty much all body structures. It is great stuff.

Blessings

Donna

http://www.excellentthings.com

http://www.fountain-of-life-healing-school.com

Free E Book Download

AllieMax@... wrote:

>

> This is what I used,and still do, for terrible Hip & Groin Pain,I could

> hardly walk,and this is what worked for me.I don't buy it from the link

> below,I found it is much cheaper elsewhere.Pat

>

> *CellRenew

> Collagen Type II - Arthritis Support with Hyaluronic Acid ... Antiaging

> supplement for osteoarthritis, rheumatoid arthritis, liver cleanse,

> immune system health ... Do you experience stiff, sore joints in the

> morning ? Do you avoid doing today what you know you'll pay for tomorrow

> ... http://www.appliedhealth.com/retro_cellrenew.html

> <http://www.appliedhealth.com/retro_cellrenew.html>

>

> Pat, PA. USA

> http://www.AllieMax.homestead.com <http://www.AllieMax.homestead.com>

>

> <http://www.dogsadversereactions.com/nsaid/memorial15.html#angel>

>

> .

>

January 9, 2007

{only when im out} i think its the weather mines bad as the day goes on. neck is real bad.and right shoulder.went to doc today. all was fine till i saw the white glove and ky jelly, then those words you just hate to hear.bend over i need to check your prostate.nooooooooooooo. ruined my whole day. lol.but warm baths and a massage works great,and not to promote anything thats not legal. but try the herb store. it helps me.Checkers2001 <simplicity53@...> wrote: Any suggestions for dealing with joint

pain? I'm prone to some chronic pains in that area - especially my neck and upper back - but it has been a little worse the last couple of weeks and I'm wondering what others have experience and done about it. Thanks in advance, karenTim Parsons knoxville,tn 37931 865-588-2465 x107 work

www.knoxville1.com __________________________________________________

January 9, 2007

, I am having flair ups of pain since I started treatment. Previously I did have chronic pain issues, mostly musculoskeletal issues. My shoulders hurt bad. Hard to move them. I am using Ultram for pain. Usually just once a day. I find I am alot stiffer when I wake up. I get up take the Ultram and drink some water and try to get things moving! Other than that, all I can say is I HEAR YA! It is painful. MelCheckers2001 <simplicity53@...> wrote: Any suggestions for dealing

with joint pain? I'm prone to some chronic pains in that area - especially my neck and upper back - but it has been a little worse the last couple of weeks and I'm wondering what others have experience and done about it. Thanks in advance, karen __________________________________________________

January 9, 2007

hot tub works for me,, or you can buy "bed buddies" that are sacks filled with grain that you can put in your micro and they stay hot for almost an hour,, they feel really good on the achy parts and you can take them with you anywhere,, even work, if you have a micro at work!Checkers2001 <simplicity53@...> wrote: Any suggestions for dealing with joint pain? I'm prone to some chronic pains in that area - especially my neck and upper back - but it has been a little worse the last couple of weeks and I'm wondering

what others have experience and done about it. Thanks in advance, karenJackie

January 9, 2007

hot tub works for me,, or you can buy "bed buddies" that are sacks filled with grain that you can put in your micro and they stay hot for almost an hour,, they feel really good on the achy parts and you can take them with you anywhere,, even work, if you have a micro at work!Checkers2001 <simplicity53@...> wrote: Any suggestions for dealing with joint pain? I'm prone to some chronic pains in that area - especially my neck and upper back - but it has been a little worse the last couple of weeks and I'm wondering

what others have experience and done about it. Thanks in advance, karenJackie

January 11, 2007

The best treatment for joints is movement without irritation. For

periferal joint health, hydrotherapy is the gold standard. If you

can find a facility that caters to arthritic or geriatric clients

they should have the pool temperature tolerable. Using an " aqua-

jogger " vest allows freedom of movement with little effort to remain

bouyant and no weigh-bearing. The head and neck are in a nuetral

position so it should not aggravate. The joints of the neck and

upper back are usually influenced by tension and stress so anything

that reduces stress will help- aerobic exercise, stretching,

massage, lifestyle modifications, and bedroom sports (oops!).

Hope this helps... LW

>

> Any suggestions for dealing with joint pain? I'm prone to some

chronic pains in that area -

> especially my neck and upper back - but it has been a little worse

the last couple of weeks

> and I'm wondering what others have experience and done about it.

Thanks in advance, karen

>

January 11, 2007

Oh Nikki, I had forgotten about this,, its an amazing thought! Im struggling with inflammation 'somewhere' in my body,, I have to read back through this,, Nikki Cowan <nikkicowan@...> wrote: I have almost

completely been freed from my arthritis, which was pretty considerable, by urine therapy. urinetherapy.com Nikki >>>> Any suggestions for dealing with joint pain? I'm prone to some chronic pains in that area - > especially my neck and upper back - but it has been a little worse the last couple of weeks > and I'm wondering what others have experience and done about it. Thanks in advance, karen> Jackie

February 16, 2007

Sally,

It seems that many of our children have this problem in common and more work

needs to be done. It would be helpful to bring this to your clinician's

attention -- and let us know if you learn anything new.

Also, please know that our board is private and none of the notes are to be

shared with anyone that was not approved by Ursula. This includes doctors and

nurses.

Still, I think that you can make an a good argument that your child is not

alone with the pain and that, perhaps, dosing with pain meds is not always the

best long-term solution...if there are answers out there.

Thank you!

mom to CVIDer

Sally <sally29445@...> wrote:

Hello my name is Sally and I have a son that is 9 years old. He has

CVID and was dig. when he was 2 years old. He receives IVIG every 4

weeks and is doing well on it. He also had joint pain and has

always had joint pain since he was about 3 years old when he could

tell me that he was hurting. We took him to a joint Dr when he was

4 and they did all kinds of test on him and said that at this pint

he does not have JRA. So his immune dr. told us to give him advil or

tylonal for the pain. As he has gotten older it has gotten worse. He

can not ride a bike nor walk in mall or store with out his legs and

feet hurting. His wrist and hands hurt him to write and he is in

pain all the time! Last year he broke his leg for the 2nd time and

broke his arm for the 2nd time. The doc said that he needed to be

tested or ostoprosis. Well he had a bone denisty test done and it

showed that he does have ostioprosis. So now he is on Fosamax and

Vit D and Calicum. I told the doc that he is in pain all the time

with his joints and he said that it could be some of the ostoprosis

and part could be arthritis. So we are going back to the arthritis

doc on Tuesday. I have not seen this doc since Wesley was 3 years

old. So I hope that he can help us this time. And get Wesley some

relief. He should not be in pain all the time, some days he can not

even get out of bed. He wants to do the things other kids are

doing. Im glad that I now know that this is part of his CVID, Im

printing out all of these other post from all of you that also have

this problem in your children, and Im taking it with me to the Doc

on Tuesday to show him!

Sally Blumenburg

IDF Peer Volunteer for SC

Mom to Wesley 9 year old

CVID, Asthma, GI problems, ostoprosis, joint pain,

February 17, 2007

Hi Sally!!

My Blaek also has Osteoporosis. It has caused him lots of joing pain. He too

has a hard time with Walking & getttin up & down. Blake is 15. He has always

told us of his pain since being abel to talk!!! He will not ride a bik. He

rather " walk " one than ride it. He says it makes his hips hurt when getting off

it!!

Blake has CVID with Complete T-Cell Dysfunction & several other issues. He

was DX'ed at age 3 with Hypogam & the Official DX came atage 6 & this is when

IVIG was started.

We were made aware of the possibility of Osteo. when Blake was 8yrs. We went

to an Endocrinologist just as soon as his scans came back with Severe Osteo.

The Endo. put him on Calciferol (vit. A & D) drops. as well as 600mg. of Calcium +

Vit D 2X's a day. He was also placed on Actonel once a week. When we could not

get the Endo to find another way to help Blake.....we were referred to another

Endo(they were partners at one time but the one we see now really helped to

understand all of Blake's bone issues & how we arrived at the Osteo stat & how

it became so severe in him). We saw NO change using the Actonel. They did a

bone scan every yr. & each yr. there was no change in the density of his bones.

The New Endo. did several test to determine why Blake was give the meds. he

was given. He disagreed with the use of Actonel right off the bat!!! it is not

for any pediatric patient under the age of 21. He found Blake to have severe

Vit. Deficiency even while on the Vit. drops & extra Vit. with Calcium. We were

not made aware by the other Dr. that Blake had this deficiency but he had it all

along!!!!

After much testing, we found that Blake was not absorbing the cacium nor vit.

drops normally. He was also NOT laying new bone(tested through N-Telopeptide

tests in Urine). he dose not have the ability to do so.

It was in the best interest of our child that we all agrred to give the IV

Aredia a chance in Blake. He has handled the infusions quite well. He gets them

for 8hrs/3 days every 12 weeks. he is premedicated with 1500 grams of Tylenol

before starting each day & given more if necessary.

If you don't mind can I as where in SC you live? We also reside in SC. We

live in Greenwood. Our Immuno is in Columbia as well as the ENT, Pulmonary Dr &

Hem/Onc Drs. Blake has a rare genetic (5 different types) of Blood Clotting

Disorder. His body does not make Heparin. He is currently on 34. mg of

Lovenox(sub q 2 x's daily) as well as 9mg. of Coumadin a day. he has blood work

done each week to keep a chek on his PT & INR(all clot related).

He has been to DUKE. This is where he was officially DX'ed with the immune

problems & started immediately on IVIG. He is currently on 20 grams every 2

weeks(rain, shine, sleet, or snow, just like clock work. If he goes over by any

length in time we can bet he will be sick & on antibiotics just as sure as the

world goes 'round!!!!)

I would love to get to know you more. I see that you are the IDF for SC.

Good luck with the Dr. appt on Tuesday!!!!

Gotta run but you can e-mail me off list if you wish to do so

momtoboywholoveshisgoats@...

, mom to Blake 15(CVID with Complete T-Cell Dysfunction, Asthma, GERD,

Asperger's Syndrome,CAPD/HDHD/ODD/OCD, Sensory Intergrated Motor Skills

Delays...........Loves to read, he is definely a Flea Market Junky!!!!! Hates

math but can get it done when he really thinks & wants to buy a book!!!!

http://www3.caringbridge.org/sc/blakester

The Greatest Adventure of MY Lifetime!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~