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If you go to pubmed and put in " CVID " the most current article (2008 done at

Walter ) concludes that infection and/or *autoimmune* disease are signs of

CVID. They are looking at CD27. So, it's starting to make sense to me why so

many of our children are vulnerable to joint pain. (There are many other

reasons for joint pain...but, according to the authors, its part of the CVID

package for some patients).

Re: joint pain

Hello Sally,

I have a 3 yr old with a combine immune deficiency that also has what

they are calling JRA (juvenile rheumatological arthritis). He gets IVIG

(gamunex)every 3 weeks. In his case the IVIG helps his arthritis. He

actually complains more prior to his IVIG infusion. Afterwards, no

complains for awhile. Not sure if it is from the IVIG itself or the IV

steroids he gets with it or the combination of the two. But, I remember

his rheumatologist saying that some people with arthritis the IVIG may

make it worse. Not sure if this helps or not. Feel free to email if you

have more questions. Good luck!

Proud Mom of 4:

3yr old : PID~combine immune deficiency and etc.....

8yr old Hannah: asthma, allergies, urinary reflux, T & A

6yr old Noah: asthma, ADD

5yr old : allergies, chronic sinusitis, one enlarge tonsil

www.caringbridge. org/visit/ matthewfranson

>

> Hello, my son who is 10 years old has been on Gammunex for 5 years

now

> and with no side affects. But recently he has complained more that

his

> back, legs and ankles hurt after his treatments. He just got his

> treatment today and about 2 hours after his treatment he started

> yelling at the top of his lungs that his ankles were in extreme pain!

> Do you think that this could be a side affect of the IVIG or that

> something else could be going on? Does anyone else have a child that

> has joint pain?

>

> Any help would be appreciated.

> Thanks

> Sally Mom to Wesley, 10 years old with CVID, Asthma, Allergies, GI

> problems,

>

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Wow . I have not seen that article. Thank you so much for pasing it along

as you know Charlie suffers from this and just last week Dr M. Said also

has it in his knee and ankle.

Dayna

Sent via BlackBerry from T-Mobile

Re: Re: joint pain

If you go to pubmed and put in " CVID " the most current article (2008 done at

Walter ) concludes that infection and/or *autoimmune* disease are signs of

CVID. They are looking at CD27. So, it's starting to make sense to me why so

many of our children are vulnerable to joint pain. (There are many other reasons

for joint pain...but, according to the authors, its part of the CVID package for

some patients).

Re: joint pain

Hello Sally,

I have a 3 yr old with a combine immune deficiency that also has what

they are calling JRA (juvenile rheumatological arthritis). He gets IVIG

(gamunex)every 3 weeks. In his case the IVIG helps his arthritis. He

actually complains more prior to his IVIG infusion. Afterwards, no

complains for awhile. Not sure if it is from the IVIG itself or the IV

steroids he gets with it or the combination of the two. But, I remember

his rheumatologist saying that some people with arthritis the IVIG may

make it worse. Not sure if this helps or not. Feel free to email if you

have more questions. Good luck!

Proud Mom of 4:

3yr old : PID~combine immune deficiency and etc.....

8yr old Hannah: asthma, allergies, urinary reflux, T & A

6yr old Noah: asthma, ADD

5yr old : allergies, chronic sinusitis, one enlarge tonsil

www.caringbridge. org/visit/ matthewfranson

>

> Hello, my son who is 10 years old has been on Gammunex for 5 years

now

> and with no side affects. But recently he has complained more that

his

> back, legs and ankles hurt after his treatments. He just got his

> treatment today and about 2 hours after his treatment he started

> yelling at the top of his lungs that his ankles were in extreme pain!

> Do you think that this could be a side affect of the IVIG or that

> something else could be going on? Does anyone else have a child that

> has joint pain?

>

> Any help would be appreciated.

> Thanks

> Sally Mom to Wesley, 10 years old with CVID, Asthma, Allergies, GI

> problems,

>

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  • 7 months later...

I have all over joint pain. I have to take my want to be pain meds (tramadal..it works some, I take 3 at a time) at least 1 1/2 hours before I can even get out of bed in the morning. Wish I knew what is the best pain relief...someone has got to have ideas or some opinions PLEASE Newton in Nevada'Be kinder than necessary because everyone you meet is fighting some kind of battle. From: shelly <nurselamb@...>Subject: joint painHepatitis CSupportGroupForDummies Date: Tuesday, October 7, 2008, 1:16 PM

Does anyone else get terrible joint pain? As of this summer both my

knee joints are so unbelievably pain full I can barely walk. At night

when I'm sleeping I sometimes can't turn over in bed, as well am

totally soaked with sweat. The joint pain is always in my knee's and

now is traveling around my body inflicting pain in all the joints.

So I went to the Doc, my lab values have actually improved and my

numbers are down. He gave me time release morpine for the pain, but

sometimes is does nothing. I have lost a fair amount of wieght this

summer, not that I didn't need to. What if aything is the best pain

reliever Thanks

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  • 2 years later...
  • 8 months later...
Guest guest

Just a thought - do you eat a lot of wheat on your version of DASH? I have

celiac disease which means I can't eat wheat; before my adrenalectomy when I

looked into DASH it seemed near-impossible to me to do wheat-free. Even in

non-celiacs, the gluten in wheat has been linked to inflammation, particularly

in those with arthritis or RA. So, if DASH has by any chance caused you to eat

more wheat (or other grains that contain gluten), you may try eliminating it for

a while to see if that helps the pain.

There is also a lot of anecdotal evidence among the celiac/gluten-intolerant

community of depression, mood swings, and anxiety subsiding when

gluten-containing foods were discontinued. Not sure if this pertains to the

general population or not.

-msmith1928

Successful left laparoscopic adrenalectomy 10/13/12

> >>>>>

> >>>>> 

> >>>>>>I got a spot urine test yesterday, to see how well I've been Dashing,

but now I've forgotten what the ratio of K to Na is supposed to be and I'm not

sure what this 4 to 1 ratio means. Is it too low?  Since I got the test after

seeing my N! ephrologist I couldn't ask him during the appointment.

> >>>>>>

> >>>>>>

> >>>>>>My results were K = 100.5 (12.0 - 129.0)

> >>>>>>                        Na = 24  (no norm given)

> >>>>>>

> >>>>>>

> >>>>>>The rest of my results were pretty much unchanged from last year, but

they did do an Albumin/Creatinine ratio. It had started out at 300.1 (0.0 -

29.9) when I was first diagnosed with PA in July 2010 and before any treatment.

Now it's at 5.1, which my Nephrologist says is very good.

> >>>>>>

> >>>>>>!

> >>>>>>Dianne F-69, bi-lateral adenomas, undiagnosed PA for over 25 years, CKD,

75mg Spiro, 37.5mg Atenolol, Dashing.

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>> 

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>

> >>>

> >=

>

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