Re: Infections & Psoriatic Arthritis

[Guest guest]

In a message dated 4/3/03 9:32:21 PM Eastern Standard Time,

david@... writes:

> Sorry, but I don't think that's true at all. I've never read anything of

> the sort, and I've got an entire filing cabinet filled with material about

> rheumatic diseases.

>

>

Patient Information - AARDA

http://www.aarda.org/indexf.html

" Psoriasis is a common, chronic disease of the skin. The cause of psoriasis

is not known for certain, but a genetic factor is present. Although a

specific autoantibody has not been identified, autoimmunity is strongly

suspected as being an underlying factor in psoriasis. Other autoimmune

diseases are often seen in families where one member has psoriasis. Certain

conditions may trigger attacks--infection, some drugs, climate, and perhaps

hormonal factors and smoking. As many as four to five million Americans

suffer from psoriasis. In about 5 percent of patients, arthritis will

develop. In most of these cases, joint involvement will occur after the onset

of lesions. The arthritis is usually mild, affecting only a few joints, and

spontaneous remissions occur. For more information on psoriasis or other

autoimmune disorders, please click on the request information icon below. "

Just an FYI...Autoimmune disorder/disease is when your immune system does

work OT and starts to fight itself. RA is also an autoimmune disorder. Just

what I have been told by 2 very respect rheum's and what I have read. Not in

argument.

[Guest guest]

At 07:29 AM 4/4/2003 -0500, you wrote:

>Patient Information - AARDA

>http://www.aarda.org/indexf.html

[snip]

All true, but none of that says people with psoriasis (or psoriatic

arthritis) are more susceptible to colds, or get colds any more often than

the general public.

[Guest guest]

I doubt that those with PA would call it a " mild " arthritis...what is a " raging "

arthritis. Sometimes it's like a lamb, but others it definitely roars...there's

nothing " mild " about it. Sylvia

CND110370@... wrote:In a message dated 4/3/03 9:32:21 PM Eastern Standard

Time,

david@... writes:

> Sorry, but I don't think that's true at all. I've never read anything of

> the sort, and I've got an entire filing cabinet filled with material about

> rheumatic diseases.

>

>

Patient Information - AARDA

http://www.aarda.org/indexf.html

" Psoriasis is a common, chronic disease of the skin. The cause of psoriasis

is not known for certain, but a genetic factor is present. Although a

specific autoantibody has not been identified, autoimmunity is strongly

suspected as being an underlying factor in psoriasis. Other autoimmune

diseases are often seen in families where one member has psoriasis. Certain

conditions may trigger attacks--infection, some drugs, climate, and perhaps

hormonal factors and smoking. As many as four to five million Americans

suffer from psoriasis. In about 5 percent of patients, arthritis will

develop. In most of these cases, joint involvement will occur after the onset

of lesions. The arthritis is usually mild, affecting only a few joints, and

spontaneous remissions occur. For more information on psoriasis or other

autoimmune disorders, please click on the request information icon below. "

Just an FYI...Autoimmune disorder/disease is when your immune system does

work OT and starts to fight itself. RA is also an autoimmune disorder. Just

what I have been told by 2 very respect rheum's and what I have read. Not in

argument.

[Guest guest]

At 05:54 PM 4/4/03 -0800, Sylvia wrote:

>I doubt that those with PA would call it a " mild " arthritis...what is a

> " raging " arthritis. Sometimes it's like a lamb, but others it definitely

>roars...there's nothing " mild " about it.

I remember reading this very passage right after my diagnosis, and thinking

that I couldn't disagree more -- and it only got worse in the couple of

months following my diagnosis! So one time I asked my rheumatologist if he

agreed that PA is usually a milder form of arthritis, and he said

" Absolutely not! " Apparently that was the common belief for quite some

time, but as more and more cases of PA were properly documented and more

research was done, it became readily apparent that PA was definitely not a

milder form of arthritis. However, that old information still seems to be

floating around, online and elsewhere.

I was glad to hear that my RD disagreed about that, because for a while I

was thinking I must be *really* wimpy if *this* is considered " mild " . But

no, he said my PA is a fairly severe case, and PA itself runs the gamut

from mild to severe cases, just like other forms of arthritis do.

[Editor's Note:

Thankfully, I have run across but one (out of a total of maybe 12 docs I have

used over almost 40 years) who didn't know that PsA (psoriatic arthritis) can

be, and is, as often as is RA, a particularly nasty, virulent and refractory

arthritis. Thinking back to the worst flares I've experienced--good

grief..There's something worse than that? I hope not, for the sake of humanity.

D.]

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

Visit my personal web site at

http://members.shaw.ca/tljohnson/

[Guest guest]

In a message dated 4/3/2003 7:29:20 PM Eastern Standard Time, david@...

writes:

> Our immune systems are actually quite active -- even overactive -- against

> infections unless deadened by the blunt instrument of a

> drug like

> methotrexate, or more targeted biologics like Enbrel.

Hi Dave,

You seem to know alot about Enbrel and its effects. DO you think that taking

grapeseed extract will alter the effects of Enbrel? It is an herb which is

supposed to boost your immune system and I thought it would help me fight this

sinus problem I have had for a month.

Janet

Editor's Note:

In this forum, it is helpful to be able ask experiential questions of

members like Dave, who knows our subject well.

At the same time, medically definitive questions directly related to your

own personal health, such as the one above--as far as actually acting, based

upon the answer--are best asked of medical professionals. Answering definitively

could place a member in the uncomfortable position of rendering medical advice,

which should properly come from your doctor or pharmacist.

D.]

[Guest guest]

At 05:29 PM 4/5/2003 -0500, Janet wrote:

>Hi Dave,

>You seem to know alot about Enbrel and its effects. DO you think that

>taking grapeseed extract will alter the effects of Enbrel? It is an herb

>which is supposed to boost your immune system and I thought it would help

>me fight this sinus problem I have had for a month.

>[Editor's Note:

> In this forum, it is helpful to be able ask experiential questions

> of members like Dave, who knows our subject well.

>

> At the same time, medically definitive questions directly related

> to your own personal health, such as the one above--as far as actually

> acting, based upon the answer--are best asked of medical professionals.

> Answering definitively could place a member in the uncomfortable position

> of rendering medical advice, which should properly come from your doctor

> or pharmacist.

> D.]

Hi Janet,

is right, medical advice, especially regarding interactions of

supplements and drugs, would be best directed to a pharmacist or your

medical doctor.

That said, what I can tell you is that grape seed extract is a stronger

anti-oxidant than Vitamin C, I don't see it directly boosting the immune

system anyway. If you're already supplementing with Vitamins E & C, that

should be all the antioxidants you need.

Vitamin E, in addition to being anti-oxidant, does actually have some

immune-system boosting effects that you are seeking. I take Vitamin E

together with cod liver oil, as the oil can be oxidative. When you buy fish

oil capsules, they usually include Vitamin E in the capsule for the same

reason.

Incidentally, Vitamin E has also been shown to help with the pain from

rheumatoid arthritis, which is similar enough to psoriatic arthritis to

warrant giving it a try.

Supplementwatch.com has a lot of detailed and reliable information about

grape seed extract and other supplements here:

http://www.supplementwatch.com/supatoz/supplement.asp?supplementId=158

Information about Vitamin E is here:

http://www.supplementwatch.com/supatoz/supplement.asp?supplementId=105

Elfstrom

[Guest guest]

Hi Janet,

I have been told by my doctors not to take anything which would boost my

immune system, as that can trigger flares. Since our immune systems are so

active already, they probably don't need any help. I would check with your

doctor on this one...seems kind of silly to take Enbrel to suppress the

immune system, then take a supplement to boost it...

On a side note, I have been following the emails and know you are struggling

with Enbrel and infection...I can't remember if you have other autoimmune

issues, but my doctors won't give me Enbrel as they worry about chronic

infection due to the other autoimmune stuff I have going on. May be worth a

second opinion?

[Guest guest]

At 07:45 PM 4/7/2003 -0400, wrote:

>I have been told by my doctors not to take anything which would boost my

>immune system, as that can trigger flares. Since our immune systems are so

>active already, they probably don't need any help. I would check with your

>doctor on this one...seems kind of silly to take Enbrel to suppress the

>immune system, then take a supplement to boost it...

On the surface it seems logical not to take immune-boosting supplements

while taking an immunosuppressant drug, but there are many parts to the

immune system, and sometimes opposites balance each other out in a positive

way.

For example, the primary mechanism of methotrexate relies upon interfering

with the activation of folic acid, yet we then take folic acid to reduce

toxic effects of methotrexate, with no apparent loss of antirheumatic

effect. It seems counterintuitive, but it works!

Likewise, taking Vitamin E can help boost the immune system in a positive

way, while Enbrel targets another part of the immune system. We know that

antioxidants can help prevent colds, perhaps in the future doctors will

recommend taking an antioxidant supplement while taking Enbrel.

In my situation right now I'm working at a hospital in Toronto under tight

control for SARS. (I'm a systems administrator, not a doctor or nurse).

There hasn't been transmission between patients and staff yet, but I

wouldn't want to be taking Enbrel right now!!

Elfstrom

=====================================================

Ed. Note: As Orin pointed out awhile back, although it's true that in cancer

treatment methotrexate works by blocking activation of folic acid in order to

prevent cell reproduction, the same is NOT true for it's use as a treatment for

RA and PA. Here are a couple of quotes from:

http://www.hollandandbarrett.com/Drug/Methotrexate.htm

" In cancer treatment, methotrexate works by blocking activation of folic acid. "

" Until recently, it was believed that methotrexate helped people with rheumatoid

arthritis also by interfering with folic acid metabolism. However, recent

research has shown that this is not so. In fact, it now appears that people with

rheumatoid arthritis taking methotrexate should supplement large amounts of

folic acid. "

" In separate double-blind studies, 5,000 mcg per day of folic acid and 2.5 - 5

mg per day of folinic acid (an activated form of folic acid) have substantially

reduced side effects of methotrexate without interfering with the therapeutic

action in rheumatoid patients. Folic or folinic acid were taken at a different

time from methotrexate and sometimes only five days per week. Similarly, recent

evidence suggests that people who are prescribed methotrexate to treat severe

psoriasis experience fewer side effects if they also supplement high amounts (5

mg per day) of folic acid. As is the case with methotrexate and rheumatoid

arthritis, supplementing folic acid did not interfere with the activity of

methotrexate. Such high levels of folic acid should not be taken without

clinical supervision. "

-- Ron

[Guest guest]

In a message dated 4/7/2003 6:45:37 PM Eastern Standard Time, rachelviognier

writes:

> .I can't remember if you have other autoimmune

> issues, but my doctors won't give me Enbrel as they worry about chronic

> infection due to the other autoimmune stuff I have going

> on. May be worth a

> second opinion?

>

>

Hi ,

Do you mind if I ask what other autoimmune stuff you have. I have an autoimmune

thyroid disorder as well as the P and PA. I a getting so discouraged with the

ENbrel. I went off for almost two weeks and my sinus infection improved. Now I

took two injections this week and I feel like I am sick again. My ear feel as

if I am under water and I am short of breath. I never had asthma except for

when my allergies got very bad. I am wondering if there definitely is a

relation to shortness of breath and the Enbrel.

Janet

[Guest guest]

Hi Janet...other than PA, I have hypothyroid, hypopituitary (low growth

hormone) and pernicious anemia. I am actually at Mayo in ville, FL

right now and the rheumatologist here agreed with the one at home that I am

not a good candidate for Enbrel given the multitude of autoimmune stuff and

the potential for Enbrel to induce lupus and/or MS-like symptoms.

Have to see the rest of the specialists tomorrow, then Monday they will make

a recommendation as to what they think I should do. I am just in this

constant cycle of having my growth hormone and iron levels crash, which

causes the PA to flare, and no one can tell me how to get everything under

control. Sigh.

[Guest guest]

What do you think of the mayo clinc. Is it worth

making a cross country trip? I have thought about it

but have not done it. I have had PA for about 1 year.

I am taking Methotraxate and Cellobrex.

[Guest guest]

,

I was on the path to do the same thing, but after speaking to several people, I

realized it might not be the wisest thing to spend money on. Most people have

told me that they found out nothing new at the Mayo clinic... that's a lot of

money to spend for nothing new. Do you have any real good research universities

in your area? How about trying there first?

> What do you think of the mayo clinc. Is it worth

> making a cross country trip? I have thought about it

> but have not done it. I have had PA for about 1 year.

> I am taking Methotraxate and Cellobrex.

[Guest guest]

,

PLEASE let us know if Mayo is worth it, and if they give you any different ideas

on how to deal with your PA?!!! Like I just told Tim, I have been thinking about

going there, but no one has been able to make me feel that it would change my

regimine or be worth it for any new information.

Please let us know what they say about the PA, and if you learn anything new...

P.S. I am also anemic, and always have been. Nothing seems to bring me over the

anemia hump... It's not bad. I think I am one point below the normal level, but

it would be nice to be " normal " .

In a message dated 4/10/2003 11:06:18 PM Eastern Standard Time, rachelviognier

writes:

> Hi Janet...other than PA, I have hypothyroid, hypopituitary (low growth

> hormone) and pernicious anemia. I am actually at Mayo in ville, FL

> right now and the rheumatologist here agreed with the one at home that I am

> not a good candidate for Enbrel given the multitude of autoimmune stuff and

> the potential for Enbrel to induce lupus and/or MS-like symptoms.

>

> Have to see the rest of the specialists tomorrow, then Monday they will make

> a recommendation as to what they think I should do. I am just in this

> constant cycle of having my growth hormone and iron levels crash, which

> causes the PA to flare, and no one can tell me how to get

> everything under

> control. Sigh.

>

>

[Guest guest]

,

What does having a low growth hormone do to you? Does a stardard thyroid test

catch all of this stuff? Now you have me wondering if I should be tested for a

ton of other stuff.

[Guest guest]

In a message dated 4/10/2003 11:06:18 PM Eastern Standard Time, rachelviognier

writes:

> I am just in this

> constant cycle of having my growth hormone and iron levels crash, which

> causes the PA to flare, and no one can tell me how to get

> everything under

> control. Sigh

,

I hope they get everything under control for you at the Mayo clinic. I will be

thinking of you. Let us know what treatment they decided would be best for you

for the PA.

Hugs,

Janet

[Guest guest]

<<What do you think of the mayo clinc. Is it worth

making a cross country trip? >>

Hi Tim,

So far, so good at Mayo...I didn't just go because of PA, I have a bunch of

other autoimmune stuff that I can't seem to get under control. Mayo in

ville is only 2 hours away from my home in Orlando, so it seemed to

make sense to go there, where I could get second opinions from a bunch of

specialists all in a few days, instead of running around here trying to get

appointments. I was there 3 days last week, and need to go back on Monday

for my last appt with the rheumatologist. I do think its helpful...the

hematologist and endocrinologist that I saw both gave me alternative

treatment options than what I had heard here at home. Seems like they are

more decisive and potentially more aggressive, maybe they need to be because

patients are only there for a short time. Anyway, I think it probably is an

individual decision. When I was researching, I noticed there is also one in

AZ in addition to the FL and Minnesota locations.

[Guest guest]

,

Low growth hormone means your pituitary is not functioning properly (called

hypopituitary)...growth hormone is something used to help rebuild muscle

tissue. Its not something they would look for unless they suspected it might

be a problem. For me, I have hypothyroid and pernicious anemia and PA...this

combination is called polyglandular autoimmune syndrome, and they monitor me

for the other associated diseases, which are hypopituitary, type 1 diabetes,

and premature ovarian failure. I don't think you would need to get tested

for this unless you have other endocrine stuff going on...

[Guest guest]

,

Haven't heard anything about the PA yet, that will come Monday...I will let

you all know. For the anemia, this hematologist helped a lot. I have both

pernicious anemia, which is an autoimmune issue with B-12, but also have iron

deficiency anemia resulting from an inability to absorb iron from

food...previous doctors had told me to go on and off hemocyte (prescription

iron), but every time I go off I get anemic again. So this guy said to stay

on it, permanently, and gave me all of the levels to monitor.

But I have to say, so far I'm pretty impressed with Mayo and the people

there. And its a much more efficient way to get second opinions...but again,

its not that far from home for me, and I used my Marriott points to stay at

the hotel next door for free while I was there, so it was pretty low

risk/investment for me!

[Guest guest]

I don't know about the Mayo Clinic, but I travel with my daughter four times

a year to Dr. Tom Lehman at the Hospital of Special Surgery in New York City.

HSS is ranked second behind Mayo. It is well worth the trip from Texas. We

are in Austin and my husband's doctor knows nothing compared to Dr. Lehman.

Both my husband and daughter have PA.

Hope this helps.

[Guest guest]

Hi ,

What tests show the pernicious anemia? Would a normal full blood panel show

this? I have anemia (slightly). How severe is your iron deficient anemia? It

is not something I actively treat.

[Guest guest]

Well ,

That is certainly possible. I have had strange endocrine stuff going on since

I was a teen, which my Rheumy knows about... but he has never tried to make a

connection with my PA or my anemia or anything for that matter. So, now you

have me wondering. I have had my thyroid tested several times over the last

few years by my OBGYN. It is always normal. However, thyroid issues do run in

the family, so I know to watch for issues with that. I have not had it

retested in over 2 years. I guess I just never connected that possibly one

problem would effect another. I have never been " diagnosed " with anything as

far as endocrine problems go, but I do believe I have a mild case of PCOS.

Birth control has kept that in hiding for a few years, but now that I am off

of birth control it will be interesting to see if I finally get diagnosed.

Thanks for the info. I have a habit of forgetting that I have other things

wrong with me other than PA and P. The other " female " stuff doesn't effect my

daily life right now, so I many times forget that the symptoms even

exist...since most of them are not painful. I don't feel that the anemia

effects me either on a daily basis, so I forget it until I look at my blood

results. I probably need to continue getting my thyroid tested too.

Thanks for the info.

[Guest guest]

In a message dated 4/13/03 2:11:37 PM Eastern Daylight Time,

rachelviognier@... writes:

> I do think its helpful...the

> hematologist and endocrinologist that I saw both gave me alternative

> treatment options than what I had heard here at home.

What are all of the options they have given you on the other stuff? I think

everyone here is on pins and needles, wanting to know what the Mayo clinics

" preferred " treatment options are for PA! Alternative and medical.

Thanks for all of your info.

[Guest guest]

In a message dated 4/13/2003 12:22:53 PM Eastern Standard Time,

BRENDA0404@... writes:

> We

> are in Austin and my husband's doctor knows nothing

> compared to Dr. Lehman.

> Both my husband and daughter have PA.

>

> Hope this helps.

HI ,

This really helps me since I live on Long Island, NY and Manhattan is about 1/2

hour by railroad. Can you tell me something about this Dr. Is it worth it to

go to get a second opinion with him? My present Rheumy seems ok. He put me on

Enbrel but when I tell him about some of the side effects that I am

experiencing, he does not seem too informed.

Janet

[Guest guest]

Hi ,

To diagnose pernicious anemia, they have to run a test for the parietal cell

antibody. Symptoms are iron deficiency that gets progressively worse, sore

tongue, pale skin and memory problems. If it goes untreated, in addition to

the iron deficiency part, you start to have neurological damage. In this

type of autoimmune disease, the antibodies attack the lining of the stomach

and prevent it from producing something called Intrinsic Factor. Intrinsic

factor is needed to absorb B-12 from food, and B-12 is needed to absorb iron.

So treatment is pretty easy...lifelong intramuscular B-12 injections.

[Guest guest]

Hi everyone,

Nothing exciting or different from the rheumatologist at Mayo. He

recommended starting with MTX or plaquenil and the biologics only as a last

resort. The only thing he said that I hadn't heard before was that swelling

and inflammation is what causes the joint damage, not the achy kind of pain

that also comes with PA. So he said if there is pain without the

inflammation, there is no need to worry about joint damage. Since the Bextra

seems to control inflammation for me, I think I am going to hold off a while

longer before I start with any other meds...