Re: Stem Cells and RA

[Guest guest]

I'm sorry for your pain right now , I think stem cells will do alot in the

future but I think we're years from making it mainstream. I'm not about to go

out of this country for treatment, just my 2 cents. Are you on any treatment

with a DMARD yet?

Good Luck, in PA

[ ] Stem Cells and RA

Has anyone out there done stem cells for their RA? There is a clinic in Costa

Rica that I have been to several times with my daughter(for other medical

reasons). And the moment I got diagnosed with RA I wanted to run there and get

(ADULT) stem cells in an attempt to halt the damage in its tracks, before it

gets bad. (www.cellmedicine.com)

I have only been diagnosed for 3 months. But it is very severe. Every week I

look at my fingers and toes they are changing. Two months ago I only had 2

deformed fingers on each hand. one month ago I had 3 on each, and as of this

week I now have deformeties in all fingers and thumbs. 4 months ago my hands and

feet were perfect and I never had any pain. It just came on so fast and

agressivly.

I am in constant pain from head to toe. Have zero energy, I wouldnt even have

the energy to get my ass out of a burning house. Some days I can not even sign

my own name. And walking has become unberable most days.

not to mention I am only 34, and taking care of two children under 6, by

myself. One of them is autistic.

Long story short......I am really seeking anyone who has done the stem cells

and looking to see what, if any, good news you might have.

thank you

-julie H

[Guest guest]

hey sorry to hear about you diagnosis. My father had severe RA and was

handicapped due to it for my whole life, I never knew my father healthy.I knew

him as an addict, and now that I have been diagnosed I dont blame him for one

bit of what I knew as a bad childhood. I was diagnose in june 2008 I was 39.

treatment started with different combo of vicodin/ prednisone/ voltaren and

methatrexate, then a switch to enbrel until my insurance stopped paying for it,

then back to mtx only now injections.

Each day is challenge. My mother lives with me because of her slowly failing

mental status, but she is still very able bodied, but needy.

I thank God for her when I am really sick, but then want to leave the first

chance I get when I feel okay.

Back to stem cells, I have never heard about its use in RA treatment, but I am

very excited to learn.

Hands are tired, stay well,

Darlene in chicago.

>

> Has anyone out there done stem cells for their RA? There is a clinic in Costa

Rica that I have been to several times with my daughter(for other medical

reasons). And the moment I got diagnosed with RA I wanted to run there and get

(ADULT) stem cells in an attempt to halt the damage in its tracks, before it

gets bad. (www.cellmedicine.com)

>

> I have only been diagnosed for 3 months. But it is very severe. Every week I

look at my fingers and toes they are changing. Two months ago I only had 2

deformed fingers on each hand. one month ago I had 3 on each, and as of this

week I now have deformeties in all fingers and thumbs. 4 months ago my hands

and feet were perfect and I never had any pain. It just came on so fast and

agressivly.

>

> I am in constant pain from head to toe. Have zero energy, I wouldnt even

have the energy to get my ass out of a burning house. Some days I can not even

sign my own name. And walking has become unberable most days.

>

> not to mention I am only 34, and taking care of two children under 6, by

myself. One of them is autistic.

>

> Long story short......I am really seeking anyone who has done the stem cells

and looking to see what, if any, good news you might have.

>

> thank you

> -julie H

>

[Guest guest]

,

What DMARDs are you on right now? Autologous stem cell transplantation

would usually not be tried before the biologic therapies.

Not an MD

On Mon, Jun 15, 2009 at 10:09 PM, autism.aware <autism.aware@...> wrote:

>

>

> Has anyone out there done stem cells for their RA? There is a clinic in Costa

Rica that I have been to several times with my daughter(for other medical

reasons). And the moment I got diagnosed with RA I wanted to run there and get

(ADULT) stem cells in an attempt to halt the damage in its tracks, before it

gets bad. (www.cellmedicine.com)

>

> I have only been diagnosed for 3 months. But it is very severe. Every week I

look at my fingers and toes they are changing. Two months ago I only had 2

deformed fingers on each hand. one month ago I had 3 on each, and as of this

week I now have deformeties in all fingers and thumbs. 4 months ago my hands and

feet were perfect and I never had any pain. It just came on so fast and

agressivly.

>

> I am in constant pain from head to toe. Have zero energy, I wouldnt even have

the energy to get my ass out of a burning house. Some days I can not even sign

my own name. And walking has become unberable most days.

>

> not to mention I am only 34, and taking care of two children under 6, by

myself. One of them is autistic.

>

> Long story short......I am really seeking anyone who has done the stem cells

and looking to see what, if any, good news you might have.

>

> thank you

> -julie H

[Guest guest]

Hi ,

 

Please keep us all informed about this stem cell therapy since I dont see it

approved as of yet with US and Canadian physicians. Morever, if you get your own

body cells as they say the chances are you will still have rheumatoid arthritis

since your body cells are already compromised. You need fresh cells without any

autoimmune disease as it happened in the case of a European lady who had RA for

several years. She got fresh cells from her identical twin sister who did not

have RA and thus she is now completely cured. Do you have an identical twin?

 

<<The treatments described on cellmedicine.com are not approved by the US FDA

and are not considered to be standard of care for any condition or disease

Adult stem cells can be harvested from many areas of the body, including the

bone marrow, fat and peripheral blood. Once the cells have been harvested, they

are sent to the lab where they are purified and assessed for quality before

being reintroduced back in the patient. Since the stem cells come from the

patient there is no possibility for rejection>>>.

Arshad

[Guest guest]

, I am soooo sorry to hear about your diagnosis and about your rapid

progression!!! What medicines has your Doctor have you on? You definitely need

to be on a TNF/ BRM (such as Remicade, rituxan etc...) as soon as possible as

well as Methotrexate. I, too, was 34 when I was diagnosed and it's so hard but

there is hope! I wish you all the luck!! P.S. I have a Grandson with Autism

and my daughter also has RA If you need to talk just let me know! MicheleBB

>

> Has anyone out there done stem cells for their RA? There is a clinic in Costa

Rica that I have been to several times with my daughter(for other medical

reasons). And the moment I got diagnosed with RA I wanted to run there and get

(ADULT) stem cells in an attempt to halt the damage in its tracks, before it

gets bad. (www.cellmedicine.com)

>

> I have only been diagnosed for 3 months. But it is very severe. Every week I

look at my fingers and toes they are changing. Two months ago I only had 2

deformed fingers on each hand. one month ago I had 3 on each, and as of this

week I now have deformeties in all fingers and thumbs. 4 months ago my hands

and feet were perfect and I never had any pain. It just came on so fast and

agressivly.

>

> I am in constant pain from head to toe. Have zero energy, I wouldnt even

have the energy to get my ass out of a burning house. Some days I can not even

sign my own name. And walking has become unberable most days.

>

> not to mention I am only 34, and taking care of two children under 6, by

myself. One of them is autistic.

>

> Long story short......I am really seeking anyone who has done the stem cells

and looking to see what, if any, good news you might have.

>

> thank you

> -julie H

>

[Guest guest]

Its all very fascinating!!! MicheleBB

>

>

> Hi ,

>  

> Please keep us all informed about this stem cell therapy since I dont see it

approved as of yet with US and Canadian physicians. Morever, if you get your own

body cells as they say the chances are you will still have rheumatoid arthritis

since your body cells are already compromised. You need fresh cells without any

autoimmune disease as it happened in the case of a European lady who had RA for

several years. She got fresh cells from her identical twin sister who did not

have RA and thus she is now completely cured. Do you have an identical twin?

>  

> <<The treatments described on cellmedicine.com are not approved by the US FDA

and are not considered to be standard of care for any condition or disease

> Adult stem cells can be harvested from many areas of the body, including the

bone marrow, fat and peripheral blood. Once the cells have been harvested, they

are sent to the lab where they are purified and assessed for quality before

being reintroduced back in the patient. Since the stem cells come from the

patient there is no possibility for rejection>>>.

>

> Arshad

>

>

>

>

>

[Guest guest]

There is a study going on right now at northwestern university in Chicago. It is

stem cell transplants for patients with RA. Here is the contact information for

anyone interested:

a Gozdziak, RN, BSN

Clinical Research Coordinato

Northwestern University

Division of Immunotherapy

750 Lakeshore Drive, suite 649

Chicago, IL 60611 Phone: 312-503-1435 Fax:312-908-0064 pgozdzia@...

she will email you all the information about the study and its requirements.

with this study they use your own fat to get the stem cells. and you need to be

there for 3 months. i do not meet their requirements because i have not been

diagnosed long enough, or failed on enough meds.

however, i do not want to wait until I have severe permanent damage before

getting the treatment. I think it would be better to get the treatment asap

before damage is crippling, and before I will require multiple treatments.

As for myself, I have decided that I am getting the stem cells. and I will be

going to Costa Rica. they use your own fat too, (but i am going to ask them

about the donor cells. it makes more sense). and I only need to be there for

two weeks. i wanted to go in august, but i have to be off all meds for 3 weeks

prior, the two weeks I am there, and two weeks afterwards. a total of 8 weeks

without meds. which my GP does not advise at this time. He said i would need a

large amount of narcotics for the pain i will be in. he wants to get me in a

near remission before taking me off the meds. so hopefully by christmas or next

summer i will be able to go.

I have gone to this clinic 3 times, with my daughter to treat her autism. she

was receiving stem cells from donor umbilical chord blood. We have had some

AMAZING results and are returning again in august. I have personally talked to

the doctors on staff, and contacted them before i even got the official RA

diagnosis. And they agree it would be best to get the treatment soon than

later. as they recomend this will all patients, regardless of their dissability

or medical issues. (better to get one treatment now and have it be successful,

than to wait until I am in a wheelchair and require multiple treatments)

as for it being an undeveloped country, I have personally had multiple visits

to this country. Costa Rica is one of the top 5 cleanest countries in the

world. Their hospitals are very clean, they would put any north american

hosptial to shame. Their labratories and surgical facilities and medical

equipment are on the leading edge of technology. All doctors are highly skilled

and educated. I would put my entire faith into the docotors at ICM (institute

of cellular medicine)

They have only treated about 12 paitents with RA (they mostly treat MS and

spinal injuries). all of those paitents have had success. but due to paitent

confidentially I am unable to contact them and see the true ammount of success.

They do not know if the effects are long term or if additional treatments in the

future will be required. I am sure that each person will react differently, and

most of them are far older than myself and have gone out of desperation from

other failed medical intervetions.

I am attempting to be proactive and stop my RA before it progresses any farther.

some day canada and the US will be doing stem cells as treatments. but is it

going to take many years of research first.

however, on a positive note...The US is already using it to treat arthritis in

dogs! seriously. go on youtube.com and search " stem cell arthritis " . you will

get alot of hits with dogs who are cured. So if it is good enough for Fido,

then it is good enough for me! haha.

I will definately keep everyone updated on my stem cell journey, hopefully it

works and gives alot of you out there some hope. but It is going to be at least

6 months or more before my GP gives me the go ahead to take me off my meds.

-julie

>

>

> Hi ,

>  

> Please keep us all informed about this stem cell therapy since I dont see it

approved as of yet with US and Canadian physicians. Morever, if you get your own

body cells as they say the chances are you will still have rheumatoid arthritis

since your body cells are already compromised. You need fresh cells without any

autoimmune disease as it happened in the case of a European lady who had RA for

several years. She got fresh cells from her identical twin sister who did not

have RA and thus she is now completely cured. Do you have an identical twin?

>  

> <<The treatments described on cellmedicine.com are not approved by the US FDA

and are not considered to be standard of care for any condition or disease

> Adult stem cells can be harvested from many areas of the body, including the

bone marrow, fat and peripheral blood. Once the cells have been harvested, they

are sent to the lab where they are purified and assessed for quality before

being reintroduced back in the patient. Since the stem cells come from the

patient there is no possibility for rejection>>>.

>

> Arshad

>

>

>

>

>

[Guest guest]

i spoke with a clinic in CR and panama and using my own cells are fine.

this is the same place where the woman i know went. it's expensive.

about $10,000 before travel and accom. costs. this is the info i got

from ICM in CR and Panama.

We have treated 8 patients with RA so far. 2 responded for several

months but after that period the disease activity returned.

4 improved but still are symtomatic needing medications but with

significant improvement 6-8 months after treatment.

2 are totally in remission 8 months after treatment on no meds.

We have found that the amount of cells obtained from the fat, play a

significant factor, so the protocol has changed and we are giving

larger quantitites of stem cells in the IV injections.

We don't promote that we can cure the disease but we feel very confident

that there is a high probability of significant improvement in your disease.

monique

Please keep us all informed about this stem cell therapy since I dont

see it approved as of yet with US and Canadian physicians. Morever, if

you get your own body cells as they say the chances are you will still

have rheumatoid arthritis since your body cells are already compromised.

You need fresh cells without any autoimmune disease as it happened in

the case of a European lady who had RA for several years. She got fresh

cells from her identical twin sister who did not have RA and thus she is

now completely cured. Do you have an identical twin?

[Guest guest]

I'm confused about the stem cell treatments, but I might just be a few posts

behind. So these short-term stem cell infusions in CR and Panama aren't really

transplants? Do they just give people stem cells without shutting down or

rebooting the immune system? I've heard that stem cell transplants for cancer

are terrible. You have to be shut away from all sources of infection for some

period of time and the transplant itself sometimes kills people. Also the " high

dose chemotherapy " idea prior to a traditional transplant doesn't sound like a

walk in the park. My sis is going thru chemo for Hodgkin's and it's terrible

stuff, and that's a traditional, 4-drug protocol, every-other week. I'd hate to

go thru something harder core than that. And with any kind of chemo or stem

cell transplant, I'd worry about a higher rate of malingnancy later on. For

those who haven't yet tried biologics, you might really be surprised by your

response to them. Kate F

________________________________

From: Sauve <moniquesauve@...>

Sent: Tuesday, June 16, 2009 1:37:55 PM

Subject: [ ] Re: Stem Cells and RA

i spoke with a clinic in CR and panama and using my own cells are fine.

this is the same place where the woman i know went. it's expensive.

about $10,000 before travel and accom. costs. this is the info i got

from ICM in CR and Panama.

We have treated 8 patients with RA so far. 2 responded for several

months but after that period the disease activity returned.

4 improved but still are symtomatic needing medications but with

significant improvement 6-8 months after treatment.

2 are totally in remission 8 months after treatment on no meds.

We have found that the amount of cells obtained from the fat, play a

significant factor, so the protocol has changed and we are giving

larger quantitites of stem cells in the IV injections.

We don't promote that we can cure the disease but we feel very confident

that there is a high probability of significant improvement in your disease.

monique

Please keep us all informed about this stem cell therapy since I dont

see it approved as of yet with US and Canadian physicians. Morever, if

you get your own body cells as they say the chances are you will still

have rheumatoid arthritis since your body cells are already compromised.

You need fresh cells without any autoimmune disease as it happened in

the case of a European lady who had RA for several years. She got fresh

cells from her identical twin sister who did not have RA and thus she is

now completely cured. Do you have an identical twin?

[Guest guest]

Kate,

It doesn't sound as if the Costa Rica clinic does the immune ablation. It's

not stem cell transplantation. I thought that's what was talking about

at first.

And, yes, autologous stem cell transplantation is a very serious procedure.

Not an MD

On Tue, Jun 16, 2009 at 9:27 PM, Fair <kalfoley@...> wrote:

> I'm confused about the stem cell treatments, but I might just be a few

> posts behind. So these short-term stem cell infusions in CR and Panama

> aren't really transplants? Do they just give people stem cells without

> shutting down or rebooting the immune system? I've heard that stem cell

> transplants for cancer are terrible. You have to be shut away from all

> sources of infection for some period of time and the transplant itself

> sometimes kills people. Also the " high dose chemotherapy " idea prior to a

> traditional transplant doesn't sound like a walk in the park. My sis is

> going thru chemo for Hodgkin's and it's terrible stuff, and that's a

> traditional, 4-drug protocol, every-other week. I'd hate to go thru

> something harder core than that. And with any kind of chemo or stem cell

> transplant, I'd worry about a higher rate of malingnancy later on. For

> those who haven't yet tried biologics, you might really be surprised by your

> response to them. Kate F

>

[Guest guest]

,

Unless the Costa Rica clinic is also performing immune ablation (and I don't

see it mentioned at their site), Northwestern's trial is not identical to

the Costa Rica procedure.

Not an MD

On Tue, Jun 16, 2009 at 1:23 PM, autism.aware <autism.aware@...> wrote:

> There is a study going on right now at northwestern university in Chicago.

> It is stem cell transplants for patients with RA. Here is the contact

> information for anyone interested:

>

> a Gozdziak, RN, BSN

> Clinical Research Coordinato

> Northwestern University

> Division of Immunotherapy

> 750 Lakeshore Drive, suite 649

> Chicago, IL 60611 Phone: 312-503-1435 Fax:312-908-0064 pgozdzia@...

>

> she will email you all the information about the study and its

> requirements. with this study they use your own fat to get the stem cells.

> and you need to be there for 3 months. i do not meet their requirements

> because i have not been diagnosed long enough, or failed on enough meds.

>

> however, i do not want to wait until I have severe permanent damage before

> getting the treatment. I think it would be better to get the treatment asap

> before damage is crippling, and before I will require multiple treatments.

>

> As for myself, I have decided that I am getting the stem cells. and I will

> be going to Costa Rica. they use your own fat too, (but i am going to ask

> them about the donor cells. it makes more sense). and I only need to be

> there for two weeks. i wanted to go in august, but i have to be off all

> meds for 3 weeks prior, the two weeks I am there, and two weeks afterwards.

> a total of 8 weeks without meds. which my GP does not advise at this time.

> He said i would need a large amount of narcotics for the pain i will be in.

> he wants to get me in a near remission before taking me off the meds. so

> hopefully by christmas or next summer i will be able to go.

>

> I have gone to this clinic 3 times, with my daughter to treat her autism.

> she was receiving stem cells from donor umbilical chord blood. We have had

> some AMAZING results and are returning again in august. I have personally

> talked to the doctors on staff, and contacted them before i even got the

> official RA diagnosis. And they agree it would be best to get the treatment

> soon than later. as they recomend this will all patients, regardless of

> their dissability or medical issues. (better to get one treatment now and

> have it be successful, than to wait until I am in a wheelchair and require

> multiple treatments)

>

> as for it being an undeveloped country, I have personally had multiple

> visits to this country. Costa Rica is one of the top 5 cleanest countries

> in the world. Their hospitals are very clean, they would put any north

> american hosptial to shame. Their labratories and surgical facilities and

> medical equipment are on the leading edge of technology. All doctors are

> highly skilled and educated. I would put my entire faith into the docotors

> at ICM (institute of cellular medicine)

>

> They have only treated about 12 paitents with RA (they mostly treat MS and

> spinal injuries). all of those paitents have had success. but due to

> paitent confidentially I am unable to contact them and see the true ammount

> of success. They do not know if the effects are long term or if additional

> treatments in the future will be required. I am sure that each person will

> react differently, and most of them are far older than myself and have gone

> out of desperation from other failed medical intervetions.

>

> I am attempting to be proactive and stop my RA before it progresses any

> farther.

>

> some day canada and the US will be doing stem cells as treatments. but is

> it going to take many years of research first.

>

> however, on a positive note...The US is already using it to treat arthritis

> in dogs! seriously. go on youtube.com and search " stem cell arthritis " .

> you will get alot of hits with dogs who are cured. So if it is good enough

> for Fido, then it is good enough for me! haha.

>

> I will definately keep everyone updated on my stem cell journey, hopefully

> it works and gives alot of you out there some hope. but It is going to be

> at least 6 months or more before my GP gives me the go ahead to take me off

> my meds.

>

> -julie

>

[Guest guest]

, that really sounds good to hear. I am sure the cost is prohibitive for

many of us to get stem cell treatment for this disease. I would love to find out

more information on it. Please keep us all posted.

Arshad