Wellness

[Trinity11]

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@LilacTree wrote:

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@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

[LilacTree]

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@Trinity11 wrote:

---

@LilacTree wrote:

---

@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

---

Trinity11, how long has your friend had RA?

[Mama Mia]

Dear LilacTree. Happy Birthday to you!!!!! Only five months late, remember we are the same age and same birth month. 

Have you ever been to an interventional radiologist to see about having vertebroplasty on you vertobre? Not sure if you have to have them break first but wanted to mention it.

I don't think you are into drugs much, but my DH is on Fentenyl now for his back. So who care, it's an opiod, but at age 75, he doesn.t care because it helps his terrible pain.  At our ages, I think we need to use what works for us. I am on gabapentin (Neurontin) for neuropathy, ouch too, but it's what I have to do.

Just glad to see you on here, and I wish the best for you.

mm

[Trinity11]

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@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

---

Trinity11, how long has your friend had RA?

---

15 Years and she finally decided her life was no longer enjoyable to continue the way that she was. She is feeling so good that I felt I had to mention her. Very similar fear of the biologics.....

[LilacTree]

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@Trinity11 wrote:

---

@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

---

Trinity11, how long has your friend had RA?

---

15 Years and she finally decided her life was no longer enjoyable to continue the way that she was. She is feeling so good that I felt I had to mention her. Very similar fear of the biologics.....

---

Longer than me then.  I've had it for 11-12 years, maybe longer as I had weird symptoms that I blew off for a while.  My life is less than enjoyable, and I've been thinking about the pill form for a while (Xeljanz, I think it's called).

It wouldn't do anything for my back and spine issues though and that's the source of most of my pain.  It might prevent my hand/finger disfiguration from worsening.  I really need to talk to a good RA doc.  So far I haven't found one.  My first doc was at U of PA in Philly, and I was very fond of her.  Then she stopped her practice to go into research, which was a great loss for me.

Anyway, you have me thinking.

[LilacTree]

---

@Mama Mia wrote:

Dear LilacTree. Happy Birthday to you!!!!! Only five months late, remember we are the same age and same birth month. 

Have you ever been to an interventional radiologist to see about having vertebroplasty on you vertobre? Not sure if you have to have them break first but wanted to mention it.

I don't think you are into drugs much, but my DH is on Fentenyl now for his back. So who care, it's an opiod, but at age 75, he doesn.t care because it helps his terrible pain.  At our ages, I think we need to use what works for us. I am on gabapentin (Neurontin) for neuropathy, ouch too, but it's what I have to do.

Just glad to see you on here, and I wish the best for you.

mm

---

Hi Mama Mia.  I'm familiar with that surgery.  I did have kyphoplasty twice on two different vertebrae. I have ten affected vertebrae, eight or so of which eventually healed on their own.  They are all susceptible to fracturing again, and I have five which are already showing up on the x-ray.  They can only do so many, they can't do two right next to each other or they risk paralyzing that part of my spine.  It's cement and certainly not pliable in any way.

Anyway . . . Happy belated birthday to you too!!

[GingerPeach]

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@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

---

Trinity11, how long has your friend had RA?

---

15 Years and she finally decided her life was no longer enjoyable to continue the way that she was. She is feeling so good that I felt I had to mention her. Very similar fear of the biologics.....

---

Longer than me then.  I've had it for 11-12 years, maybe longer as I had weird symptoms that I blew off for a while.  My life is less than enjoyable, and I've been thinking about the pill form for a while (Xeljanz, I think it's called).

It wouldn't do anything for my back and spine issues though and that's the source of most of my pain.  It might prevent my hand/finger disfiguration from worsening.  I really need to talk to a good RA doc.  So far I haven't found one.  My first doc was at U of PA in Philly, and I was very fond of her.  Then she stopped her practice to go into research, which was a great loss for me.

Anyway, you have me thinking.

---

@LilacTree

Perhaps your first doctor who is now in research is aware of the studies done in Portugal and may know of updates, especially if she is in research.  Perhaps you could contact her and ask her if she could find out how the Portuguese research is going.  Who knows, she might appreciate finding out about it just in case she doesn't yet know.   At the very least, she surely has access to medical journals to check on updates.

Let your hope be dominant, not your doubts. 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

[LilacTree]

---

@GingerPeach wrote:

---

@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

---

Trinity11, how long has your friend had RA?

---

15 Years and she finally decided her life was no longer enjoyable to continue the way that she was. She is feeling so good that I felt I had to mention her. Very similar fear of the biologics.....

---

Longer than me then.  I've had it for 11-12 years, maybe longer as I had weird symptoms that I blew off for a while.  My life is less than enjoyable, and I've been thinking about the pill form for a while (Xeljanz, I think it's called).

It wouldn't do anything for my back and spine issues though and that's the source of most of my pain.  It might prevent my hand/finger disfiguration from worsening.  I really need to talk to a good RA doc.  So far I haven't found one.  My first doc was at U of PA in Philly, and I was very fond of her.  Then she stopped her practice to go into research, which was a great loss for me.

Anyway, you have me thinking.

---

@LilacTree

Perhaps your first doctor who is now in research is aware of the studies done in Portugal and may know of updates, especially if she is in research.  Perhaps you could contact her and ask her if she could find out how the Portuguese research is going.  Who knows, she might appreciate finding out about it just in case she doesn't yet know.   At the very least, she surely has access to medical journals to check on updates.

Let your hope be dominant, not your doubts. 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

---

Good idea.  I remember her first name, Marianthi, but I can't remember her last name, it was strange also.  I have records but they are all boxed up and in storage.  Maybe I can google with just the first name because it is so strange.  I will let you know!

[GingerPeach]

Is this her, @LilacTree

Dr. Marianthi Kiriakidou

I searched on Google using her first name, physician, and Pennsylvania.

If you click on images, you may even see her picture.

[LilacTree]

---

@LilacTree wrote:

---

@GingerPeach wrote:

---

@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@Trinity11 wrote:

---

@LilacTree wrote:

---

@GingerPeach wrote:

@LilacTree

I found a promising article about what may be a cure for RA (of course right now it's not on the market).  I have asked my rheumatologist to see whether there are updates since I have no access to online medical journals: 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

Here is an excerpt:

"The new treatment by Joana Duarte, Luis Graca and colleagues from the Instituto de Medicina Molecular (IMM) in Lisbon is remarkable because it specifically stops the abnormal immunological response behind RA without touching the rest of the immune system, and a short treatment has long lasting effects suggesting that it might even cure the disease. In contrast, all therapies available for RA (or any other autoimmune disease) work by shutting down large parts of the immune system - compromising the patients’ capacity to fight other diseases - and have to be administered for life, meaning that they control the symptoms but not the underlying causes of the disease contrary to the therapy now published. The research has just been published in the journal PLoS (1)."

It would be great if any RA or other auto-immune sufferers could present this article to their own doctors and, with any luck, report back.  My own doctor has been very slow to respond.

In the meantime, have you tried an exercise bike?  I find that walking doesn't work for me since even too much walking can cause more joint damage, but so far riding my exercise bike has not caused any joint damage.

---

It would be wonderful if new treatment becomes feasible.  I don't know how they can shut down "parts" of the immune system which, of course, they haven't been able to do.  As to the biologics (which are pushed at me constantly) . . . if one would rather have infections or other horrible diseases than RA, then one should take them.  I have chosen to deal with the enemy I already know.  (I don't say I'm right and never did.)

As to the exercise bike, that would severely jeopardize my back issues.  Last visit to the orthopedist, an x-ray showed four or five vertebrae that could fracture at any time.  Just the "exercise" of putting away groceries put me in bed for two days.  Carrying a slightly heavy bag or carrying a pitcher of water to water my plants has to be done very carefully with two hands and several trips back and forth to the sink exhausts me.  I could go on.

However, I'm stopping now . . . I'm even boring myself.

---

Lilac, every drug has side effects. What a person has to do is weigh out the side effects vs the disease itself. The worst possible scenarios are given for all drugs with any kind of potency....even aspirin has side effects. I have a friend on the biologics and she has had no side effects except to be able to live her life once again, get out of the house and walk. Before that she could nothing but lay in bed all day.

---

Trinity11, how long has your friend had RA?

---

15 Years and she finally decided her life was no longer enjoyable to continue the way that she was. She is feeling so good that I felt I had to mention her. Very similar fear of the biologics.....

---

Longer than me then.  I've had it for 11-12 years, maybe longer as I had weird symptoms that I blew off for a while.  My life is less than enjoyable, and I've been thinking about the pill form for a while (Xeljanz, I think it's called).

It wouldn't do anything for my back and spine issues though and that's the source of most of my pain.  It might prevent my hand/finger disfiguration from worsening.  I really need to talk to a good RA doc.  So far I haven't found one.  My first doc was at U of PA in Philly, and I was very fond of her.  Then she stopped her practice to go into research, which was a great loss for me.

Anyway, you have me thinking.

---

@LilacTree

Perhaps your first doctor who is now in research is aware of the studies done in Portugal and may know of updates, especially if she is in research.  Perhaps you could contact her and ask her if she could find out how the Portuguese research is going.  Who knows, she might appreciate finding out about it just in case she doesn't yet know.   At the very least, she surely has access to medical journals to check on updates.

Let your hope be dominant, not your doubts. 

http://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cure

---

Good idea.  I remember her first name, Marianthi, but I can't remember her last name, it was strange also.  I have records but they are all boxed up and in storage.  Maybe I can google with just the first name because it is so strange.  I will let you know!

---

OMG!!  I found it immediately!  Her last name is Kiriakadou (I remember it always sounded like a bird's name to me).  She's still at Jefferson (I was wrong about U of Pa, but I did go to another RA doc there at the beginning too).  It has all of her contact information and I am going to try to contact her tomorrow!  I am so excited.  It shows photos of her as well.  If you google her name "Marianthi" it comes right up.  But you can google her full name also "Marianthi Kiriakadou."

Thank you homegirl, what a great suggestion!!  I will keep you updated on this.

What a great idea,