Re: Mysterious Symptoms

[Guest guest]

--Sheila,

Take pictures. My son is systemic so we were dealing with the rashes

and high fevers in the begining prior to his DX. It was hard to

explain things like rashes etc so I started to take pictures.

These have been invaluable. Now I take pictures of anything " strange "

going on with him from hives, rashes, allergic reactions to bee

stings, swollen joints, excessive bruising, vasculitis ulcers etc.

These are great to show the docs in case things have calmed down once

you get into see them.

I figure it will also be something that Nick can look back on when

hes an adult when he understands better all that hes gone though

better.

I hope you get some answers soon and some releif for your daughter.

hugs Helen and (9,systemic)

- In , " Sheila " <mannas_mom@...>

wrote:

>

> Hi everyone and happy New Year! I am wondering if anyone here has

> seen the mysterious symptoms that my Miranda developed yesterday.

> While we were out shopping, she began to complain that her hands

were

> hurting. I checked her out, and she had a red rash over the

knuckles

> on both hands that looked similar to an allergic reaction, maybe to

> hand soap or something. I treated her with hydricortisone cream all

> afternoon and last night. This morning, the red rash is gone, but

> where it was the skin is discolored like it was tanned, all of her

> joints in her knuckles and first joints of all fingers are swollen,

> her wrists are swollen, and she is complaining of pain, too. Has

> anyone on this list seen symptoms like these in their children?

> Miranda was dx JRA last summer, but when we moved to PA the new

> rheumy categorized her as " arthralgias " until he sees symptoms. Of

> course he is out of the office for the holidays. She will see him

on

> Jan 9. I called the on call rheumy, and he doesn't want to treat

with

> prednisone yet, indicating that her regular rheumy will want to see

> the symptoms... Does he expect me to leave her hands in this

> condition until Jan 9, I wonder?!!? I have to call him again

tomorrow

> if the symptoms have not improved. I think perhaps rheumy thought

it

> may have been an allergic reaction to something... I am thinking

this

> is not the case, as my other daughter has allergic skin reactions

to

> stuff and has never had symptoms to this degree.

> Anyone have any suggestions for home remedies in the meantime?

> Thanks.

> Sheila, Miranda (11, JRA?/ arthralgias?)

>

[Guest guest]

Hi, Ken:

Have you been tested for the HLA B27 antigen? This sounds like AS or

Reiter's, especially with the knee involvement, cyclic nature, early morning

wake-up, etc etc. Strongly suggest that, especially if taking antibiotics, you

totally abstain from all starches and especially the four major poisons: Bread,

cake, pasta, and potatoes.

Been there...done that. Hope the respite keeps up,

Ken <maputo95@...> wrote:

Hi There All

I woke up this morning without the multi-joint pain that I have

arisen with for the previous 14 days. I had very bad joint pains on a

daily basis between 2 and 4 am and found even rolling over a

traumatic movement. Even my very sore left knee is much less painful

and swollen. Mysteriously, the carnival of pain quietly left between

last night and today. Rude disease.No 'goodbye'. I have done or taken

nothing extra to explain this. Is this the moving around the body and

in and out, aspects of the condition. Alas, like an unwanted relative

from Tennesee who comes and goes, this torturer may reappear at

anytime to put me back on the rack.Is there anything out there to

vanquish this fiendish illness.

Happy Christmas one and all.

Ken.

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

Never miss a thing. Make your homepage.

[Guest guest]

Hey Happy Christmas

it does sound like ReA yes, and as a fellow victim i Can relate, Im

symptom free from the arthritis now, took cipro 1 g per day, (plenty

of water) 6 week cycles, (2 weeks off) also biaxin at 250mg per day

(got it out of the back). Lamisl did the trick on post prostate pain,

and and fungilin (oral amp for about 6 months to clean up the

fungi from the colon (chronic constipation). Be vigilant after cipro,

any sign of campylobactor, and others as is a known risk and set me

back at least a few years.

Thats it in a nut shell that cured my incurable disease (which now at

least the consensus is starting to change some recognizing it is

treatable, just don't go to RISG as they have no clue and never had.

was one of the first to get me on the right road, Thanks to him

Im still alive!!

Happy xmas all

steve

On 23 Dec 2007, at 19:13, Merchant wrote:

> Hi, Ken:

>

> Have you been tested for the HLA B27 antigen? This sounds like AS

> or Reiter's, especially with the knee involvement, cyclic nature,

> early morning wake-up, etc etc. Strongly suggest that, especially

> if taking antibiotics, you totally abstain from all starches and

> especially the four major poisons: Bread, cake, pasta, and potatoes.

>

> Been there...done that. Hope the respite keeps up,

>

>

> Ken <maputo95@...> wrote:

> Hi There All

>

> I woke up this morning without the multi-joint pain that I have

> arisen with for the previous 14 days. I had very bad joint pains on a

> daily basis between 2 and 4 am and found even rolling over a

> traumatic movement. Even my very sore left knee is much less painful

> and swollen. Mysteriously, the carnival of pain quietly left between

> last night and today. Rude disease.No 'goodbye'. I have done or taken

> nothing extra to explain this. Is this the moving around the body and

> in and out, aspects of the condition. Alas, like an unwanted relative

> from Tennesee who comes and goes, this torturer may reappear at

> anytime to put me back on the rack.Is there anything out there to

> vanquish this fiendish illness.

>

> Happy Christmas one and all.

>

> Ken.

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

Hi Ken,

I’m glad you’re getting some

much-needed relief and I hope it stays around for a while. This disease is

strange and seems to affect all of us differently and sometimes does just come

and go like you are experiencing. Unfortunately, there is no single treatment

that is good for everyone but there are so many treatments that most people are

able to find one that works well for them. Most of them take quite awhile to

become effective so it takes time and patience to find the right one for you. Most

people do get fairly rapid temporary relief from symptoms by taking Prednisone

but it has bad enough side effects and does little enough to slow damage that

most people try to get off it again as soon as they can manage without it. I

hope the monster is gone from you for good. God bless.

Harold

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Ken

Sent: Sunday, December 23, 2007

1:05 AM

Rheumatoid Arthritis

Subject:

[sPAM] Mysterious Symptoms

Hi There All

I woke up this morning without the multi-joint pain that I have

arisen with for the previous 14 days. I had very bad joint pains on a

daily basis between 2 and 4 am and found even rolling over a

traumatic movement. Even my very sore left knee is much less painful

and swollen. Mysteriously, the carnival of pain quietly left between

last night and today. Rude disease.No 'goodbye'. I have done or taken

nothing extra to explain this. Is this the moving around the body and

in and out, aspects of the condition. Alas, like an unwanted relative

from Tennesee who comes and goes, this torturer may reappear at

anytime to put me back on the rack.Is there anything out there to

vanquish this fiendish illness?

Happy Christmas one and all.

Ken.

[Guest guest]

Dear Ken- You are having the Palandromic (moving, migrating) pain. It stops and then finds new places to lay in for a seige. When I first became ill I was tired all the time. The pain moved for one knee to another, one week on one off. Dr thought I sprained it. Ice Ace Back to work. Then after then went, my ankle swelled, first the left then the right a week on or so and then off again. This drove me nuts. Then after a month or so, It moved to my wrists and fingers. I was going to the Dr. every week this happened and blood tests showed an abnormal sed rate and ana titre but no RA factor. This started in March 94. By July I was bedridden and I was pumped full of indocin and couldnt walk at all. This is way before Biologics came on the scene. Get to talk to your dr about that biologic. Hope your new year is better than this one. Its quality of life we fight for, not a quantity of it leaving us in years of pain. Deborah

On Dec 23, 2007 5:04 AM, Ken <maputo95@...> wrote:

Hi There AllI woke up this morning without the multi-joint pain that I havearisen with for the previous 14 days. I had very bad joint pains on adaily basis between 2 and 4 am and found even rolling over a

traumatic movement. Even my very sore left knee is much less painfuland swollen. Mysteriously, the carnival of pain quietly left betweenlast night and today. Rude disease.No 'goodbye'. I have done or taken

nothing extra to explain this. Is this the moving around the body andin and out, aspects of the condition. Alas, like an unwanted relativefrom Tennesee who comes and goes, this torturer may reappear atanytime to put me back on the rack.Is there anything out there tovanquish this fiendish illness?Happy Christmas one and all.Ken.

[Guest guest]

I am relatively new to the way RA affects the body. I have been going through the changing around of pain to one side to another. I even thought this pain in my back was new disc problems but I now know it is just same old joker. I hope everyone has a nice Christmas and a good new year I tell my children that the most important thing is for us to be together and healthy. God Bless dearhunter(jo)Deborah Bargad <dbargad@...> wrote: Dear Ken- You are having

the Palandromic (moving, migrating) pain. It stops and then finds new places to lay in for a seige. When I first became ill I was tired all the time. The pain moved for one knee to another, one week on one off. Dr thought I sprained it. Ice Ace Back to work. Then after then went, my ankle swelled, first the left then the right a week on or so and then off again. This drove me nuts. Then after a month or so, It moved to my wrists and fingers. I was going to the Dr. every week this happened and blood tests showed an abnormal sed rate and ana titre but no RA factor. This started in March 94. By July I was bedridden and I was pumped full of indocin and couldnt walk at all. This is way before Biologics came on the scene. Get to talk to your dr about that biologic. Hope your new year is better than this one. Its quality of life we fight for, not a quantity of it leaving us in years of

pain. Deborah On Dec 23, 2007 5:04 AM, Ken <maputo95 > wrote: Hi There AllI woke up this morning without the multi-joint pain that I havearisen with for the previous 14 days. I had very bad joint pains on adaily basis between 2 and 4 am and found even rolling over a traumatic movement. Even my very sore left knee is much less painfuland swollen. Mysteriously, the carnival of pain quietly left betweenlast night and today. Rude disease.No 'goodbye'. I have done or taken nothing extra to explain this. Is this the moving around the body andin and out, aspects of the condition. Alas, like an unwanted relativefrom Tennesee who comes and goes, this torturer may reappear atanytime to put me back on the

rack.Is there anything out there tovanquish this fiendish illness?Happy Christmas one and all.Ken.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Dear Deborah Thank you so much for your share. Which biologic should I request from my rheumy?Deborah Bargad <dbargad@...> wrote: Dear Ken- You are having the Palandromic (moving, migrating) pain. It stops and then finds new places to lay in for a seige. When I first became ill I was tired all the time. The pain moved for one knee to another, one week on one off. Dr thought I sprained it. Ice Ace Back to work. Then after then went, my ankle swelled, first the left then

the right a week on or so and then off again. This drove me nuts. Then after a month or so, It moved to my wrists and fingers. I was going to the Dr. every week this happened and blood tests showed an abnormal sed rate and ana titre but no RA factor. This started in March 94. By July I was bedridden and I was pumped full of indocin and couldnt walk at all. This is way before Biologics came on the scene. Get to talk to your dr about that biologic. Hope your new year is better than this one. Its quality of life we fight for, not a quantity of it leaving us in years of pain. Deborah On Dec 23, 2007 5:04 AM, Ken <maputo95 > wrote: Hi There AllI woke up this morning without the

multi-joint pain that I havearisen with for the previous 14 days. I had very bad joint pains on adaily basis between 2 and 4 am and found even rolling over a traumatic movement. Even my very sore left knee is much less painfuland swollen. Mysteriously, the carnival of pain quietly left betweenlast night and today. Rude disease.No 'goodbye'. I have done or taken nothing extra to explain this. Is this the moving around the body andin and out, aspects of the condition. Alas, like an unwanted relativefrom Tennesee who comes and goes, this torturer may reappear atanytime to put me back on the rack.Is there anything out there tovanquish this fiendish illness?Happy Christmas one and all.Ken.

Never miss a thing. Make your homepage.

[Guest guest]

Dear Ken- You can start on one of four different things. Choices are good in your case. If you dont mind taking a few pills, you can try Cyclosporine first. Give it a few months and see if you can see changes. I did right away. This is the least invasive method of disease modification. It works by binding TNF and keeps your body from rejecting you. I can get more specific if you need it. The only side effect I found myself was its nephrotoxicity which means it can affect your kidneys but thats in rare cases and aot of Ibuprofen enhances its effects. I upped that for pain when it began to wear off five years after I began taking it. You will be getting urine and blood tests while on it so they can keep track of you. Next are the biologics. There are now even more options. One Drug called Rituxan is a B cell blocker which seems effective and is an alterative for me to use should I become totally immune to my current regimen which is not yet the case. Next is Remicade which is given via an IV infusion that lasts 2-4 hours. You have less side effects when given this slowly over a period of 3-4 hours. You will be asked to take tylenol or it will be given to you and benadryl or claritin should be used. This drug is a TNF blocker and works most of the time. You may feel sleepy or a little " high " but most people tolerate it extremely well. You can choose an injectible biologic such as Enbrel or Humira. There are common injection site reactions and the hassle of giving yourself an injection but they teach you how, as well as disposal of all that but many choose this method because it affords in home do it yourself benefits. If there is anything else I can tell you please let me know. I can get more technical about all the medications. Be your own advocate. Go to www.google.com and read up on the new drugs via the internet or go to www.arthritisfoundation.org where you can get their magazine (its great) and find support groups with people in your area. Happy Holidays. Im always here if you need me. Hugs, Deborah

On Dec 24, 2007 6:12 AM, Ken Pearson <maputo95@...> wrote:

Dear Deborah

Thank you so much for your share. Which biologic should I request from my rheumy?Deborah Bargad <dbargad@...> wrote:

Dear Ken- You are having the Palandromic (moving, migrating) pain. It stops and then finds new places to lay in for a seige. When I first became ill I was tired all the time. The pain moved for one knee to another, one week on one off. Dr thought I sprained it. Ice Ace Back to work. Then after then went, my ankle swelled, first the left then the right a week on or so and then off again. This drove me nuts. Then after a month or so, It moved to my wrists and fingers. I was going to the Dr. every week this happened and blood tests showed an abnormal sed rate and ana titre but no RA factor. This started in March 94. By July I was bedridden and I was pumped full of indocin and couldnt walk at all. This is way before Biologics came on the scene. Get to talk to your dr about that biologic. Hope your new year is better than this one. Its quality of life we fight for, not a quantity of it leaving us in years of pain. Deborah

On Dec 23, 2007 5:04 AM, Ken <maputo95@...> wrote:

Hi There AllI woke up this morning without the multi-joint pain that I havearisen with for the previous 14 days. I had very bad joint pains on adaily basis between 2 and 4 am and found even rolling over a traumatic movement. Even my very sore left knee is much less painfuland swollen. Mysteriously, the carnival of pain quietly left betweenlast night and today. Rude disease.No 'goodbye'. I have done or taken nothing extra to explain this. Is this the moving around the body andin and out, aspects of the condition. Alas, like an unwanted relativefrom Tennesee who comes and goes, this torturer may reappear atanytime to put me back on the rack.Is there anything out there tovanquish this fiendish illness?Happy Christmas one and all.Ken.

Never miss a thing. Make your homepage.

[Guest guest]

Dear GOD!! Ken!! Dont loose hope MAN!! HUMIRA IS MY MIRACLE!! 3 years down Two months on it I FEEL 20 AgainJo <dearhunterbebe@...> wrote: I am relatively new to the way RA affects the body. I have been going through the changing around of pain to one side to another. I even thought this pain in my back was new disc problems but I now know it is just same old joker. I hope everyone has a nice Christmas and a good new year I tell my children that the most important thing is for us to be

together and healthy. God Bless dearhunter(jo)Deborah Bargad <dbargadgmail> wrote: Dear Ken- You are having the Palandromic (moving, migrating) pain. It stops and then finds new places to lay in for a seige. When I first became ill I was tired all the time. The pain moved for one knee to another, one week on one off. Dr thought I sprained it. Ice Ace Back to work. Then after then went, my ankle swelled, first the left then the right a week on or so and then off again. This drove me nuts. Then after a month or so, It moved to my wrists and fingers. I was going to the Dr. every week this happened and blood tests showed an abnormal sed rate and ana titre but no RA factor. This started in March 94. By July I was bedridden and I was

pumped full of indocin and couldnt walk at all. This is way before Biologics came on the scene. Get to talk to your dr about that biologic. Hope your new year is better than this one. Its quality of life we fight for, not a quantity of it leaving us in years of pain. Deborah On Dec 23, 2007 5:04 AM, Ken <maputo95 > wrote: Hi There AllI woke up this morning without the multi-joint pain that I havearisen with for the previous 14 days. I had very bad joint pains on adaily basis between 2 and 4 am and found even rolling over a traumatic movement. Even my very sore left knee is much less painfuland swollen. Mysteriously, the carnival of pain quietly left betweenlast night and today. Rude

disease.No 'goodbye'. I have done or taken nothing extra to explain this. Is this the moving around the body andin and out, aspects of the condition. Alas, like an unwanted relativefrom Tennesee who comes and goes, this torturer may reappear atanytime to put me back on the rack.Is there anything out there tovanquish this fiendish illness?Happy Christmas one and all.Ken. Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Ken, That is the best word picture I have ever seen to describe ra!!! I love the parelles... And if you find a way to make things different than the roaming ranging ever changing pains and aches please let me know! I have battled this monster for 25 plus yrs and it is still the same. Hope you are continuing with the great attitude!KERRY ROOT <rootkerry@...> wrote: Dear GOD!! Ken!! Dont loose hope MAN!! HUMIRA IS MY MIRACLE!! 3 years down Two months on it I FEEL 20 AgainJo <dearhunterbebe > wrote: I am relatively new to the way RA affects the body. I have been going through the changing around of pain to one side to another. I even thought this pain in my back was new disc problems but I now know it is just same old joker. I hope everyone has a nice Christmas and a good new year I tell my children that the most important thing is for us to be together and healthy. God Bless dearhunter(jo)Deborah Bargad <dbargadgmail> wrote: Dear Ken- You are having

the Palandromic (moving, migrating) pain. It stops and then finds new places to lay in for a seige. When I first became ill I was tired all the time. The pain moved for one knee to another, one week on one off. Dr thought I sprained it. Ice Ace Back to work. Then after then went, my ankle swelled, first the left then the right a week on or so and then off again. This drove me nuts. Then after a month or so, It moved to my wrists and fingers. I was going to the Dr. every week this happened and blood tests showed an abnormal sed rate and ana titre but no RA factor. This started in March 94. By July I was bedridden and I was pumped full of indocin and couldnt walk at all. This is way before Biologics came on the scene. Get to talk to your dr about that biologic. Hope your new year is better than this one. Its quality of life we fight for, not a quantity of it leaving us in years of

pain. Deborah On Dec 23, 2007 5:04 AM, Ken <maputo95 > wrote: Hi There AllI woke up this morning without the multi-joint pain that I havearisen with for the previous 14 days. I had very bad joint pains on adaily basis between 2 and 4 am and found even rolling over a traumatic movement. Even my very sore left knee is much less painfuland swollen. Mysteriously, the carnival of pain quietly left betweenlast night and today. Rude disease.No 'goodbye'. I have done or taken nothing extra to explain this. Is this the moving around the body andin and out, aspects of the condition. Alas, like an unwanted relativefrom Tennesee who comes and goes, this torturer may reappear atanytime to put me back on the

rack.Is there anything out there tovanquish this fiendish illness?Happy Christmas one and all.Ken. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.