A quiz to challenge your arthritis expertise (also graded on wittiness)

> I've has RA since '98 in my late twenty's. Male, no family history.
> Tried and failed MTX, enbrel, remicade, kineret, humira, and arava.
[quoted text clipped - 30 lines]
> Thanks for playing. I would appreciate knowing what an experienced
> group like this thinks.

You might have a problem with Hidden Food Allergies. Hidden Food
Allergies can trigger asthma, eczema, psoriasis, migraines, hayfever,
ADD, joint pain, chronic fatigue, and other health problems. These food
reactions can occur up to 72 hours after a food is eaten. Many people
don't recognize this because ther problem food is "hidden" in other
food. For example, I am sensitive to corn. Corn additives are in most
processed foods, in the form of High Fructose Corn Syrup, Corn Starch,
distilled vinegar, MSG, etc. Since I had a delayed reaction, i could
not connect my health problems to food. I also had a sensitivity to
dairy products. You may be sensitive to several foods. Medical testing
for Immediate food sensitivities are pretty good, but testing for
delayed food sensitivities are very unreliable. You may need to do some
detective work to find your problem foods. The foods thast you crave
the most may be your problem foods.

You may be able to find some books about this at the library. Try
"Dr. Braly's Food Allergy and Nutrition Revolution" or "Food Allergies
and Food intolerance" by Dr. Jonathan Brostoff. You can also find an
alternative doctor at www.acam.org and talk to them on the phone for a
few minutes. This is not a cure. It doesn't work for everybody, but it
works for most people.

bosco62a

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chuck - 03 Aug 2006 05:14 GMT

Thanks for playing! I do appreciate the comments and suggestions.

NOW! -- the grades . . .

Nann: B :for timely response, helpful suggestions and empathy.

Rose: B :for two great suggestions (cyclosporine and rituxan), but
cyclosporine's immunological effects scare the hell out of me
considering my problems with Kineret and Humira; and rituxan just seems
too new to take a chance on (I'm a chicken).

Johnie: B+ :for being to the point and honest. Laughing at the cruelty,
ain't it the truth.

Jean: A :because you articulate an understanding the "shoulder thing".

Harv: B :for realism, but not as witty as Johnie.

Bosco: you were DQ'd for a double posting.

Again, thanks for your ideas and encouragement. It is hard to expect
the wife to understand this torture we are hit with and always be
understanding . . . so, you've all made me feel better. I hope my
report card made you laugh.

Thanks

Don't know that I'll be a regular here, but I'll try and stop by.

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> I've has RA since '98 in my late twenty's. Male, no family history.
> Tried and failed MTX, enbrel, remicade, kineret, humira, and arava.
[quoted text clipped - 30 lines]
> Thanks for playing. I would appreciate knowing what an experienced
> group like this thinks.

You might have a problem with Hidden Food Allergies. Hidden Food
Allergies can trigger asthma, eczema, psoriasis, migraines, hayfever,
ADD, joint pain, chronic fatigue, and other health problems. These food
reactions can occur up to 72 hours after a food is eaten. Many people
don't recognize this because ther problem food is "hidden" in other
food. For example, I am sensitive to corn. Corn additives are in most
processed foods, in the form of High Fructose Corn Syrup, Corn Starch,
distilled vinegar, MSG, etc. Since I had a delayed reaction, i could
not connect my health problems to food. I also had a sensitivity to
dairy products. You may be sensitive to several foods. Medical testing
for Immediate food sensitivities are pretty good, but testing for
delayed food sensitivities are very unreliable. You may need to do some
detective work to find your problem foods. The foods thast you crave
the most may be your problem foods.

You may be able to find some books about this at the library. Try
"Dr. Braly's Food Allergy and Nutrition Revolution" or "Food Allergies
and Food intolerance" by Dr. Jonathan Brostoff. You can also find an
alternative doctor at www.acam.org and talk to them on the phone for a
few minutes. This is not a cure. It doesn't work for everybody, but it
works for most people.

bosco62a

Reply to this Message

> I've has RA since '98 in my late twenty's. Male, no family history.
> Tried and failed MTX, enbrel, remicade, kineret, humira, and arava.
[quoted text clipped - 30 lines]
> Thanks for playing. I would appreciate knowing what an experienced
> group like this thinks.

You might have a problem with Hidden Food Allergies. Hidden Food
Allergies can trigger asthma, eczema, psoriasis, migraines, hayfever,
ADD, joint pain, chronic fatigue, and other health problems. These food
reactions can occur up to 72 hours after a food is eaten. Many people
don't recognize this because ther problem food is "hidden" in other
food. For example, I am sensitive to corn. Corn additives are in most
processed foods, in the form of High Fructose Corn Syrup, Corn Starch,
distilled vinegar, MSG, etc. Since I had a delayed reaction, i could
not connect my health problems to food. I also had a sensitivity to
dairy products. You may be sensitive to several foods. Medical testing
for Immediate food sensitivities are pretty good, but testing for
delayed food sensitivities are very unreliable. You may need to do some
detective work to find your problem foods. The foods thast you crave
the most may be your problem foods.

You may be able to find some books about this at the library. Try
"Dr. Braly's Food Allergy and Nutrition Revolution" or "Food Allergies
and Food intolerance" by Dr. Jonathan Brostoff. You can also find an
alternative doctor at www.acam.org and talk to them on the phone for a
few minutes. This is not a cure. It doesn't work for everybody, but it
works for most people.

bosco62a

Reply to this Message

> I've has RA since '98 in my late twenty's. Male, no family history.
> Tried and failed MTX, enbrel, remicade, kineret, humira, and arava.
[quoted text clipped - 30 lines]
> Thanks for playing. I would appreciate knowing what an experienced
> group like this thinks.

Hi guy,,,,, I am sorry to say,,,, C. I can truthfully say that my only
experience with RA this bad is reading every now and then about a person
that nothing really works for.
I got RA in my late 30's and am now 67 and do pretty well. There are new
DMARDs and I would try everyone of them unless I got a reaction to them like
the one you had with Enbrel. I do want to welcome you to ASA and ask you
to take part here where people have a good idea what your day is like.
Harv

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Chuck,

I don't have a crystal ball so I don't know what your life will be like in
the next 5 - 10 years, but I have a feeling whatever it is, you'll still
have your sense of humor. Laughing at this crap we deal with is SO
important. Oh, we all have our 'oh poor me' days and other days when
crying/bitching/stomping feet is the only thing that works, but most of us
carry on by keeping that humor intact.

I can identify with the shoulder issue. Me too. Not much has helped yet
but I'm only a few years into the shoulder problems so am still working my
way through the myriad of meds.

I'm sure others will be along shortly to give you more insight than I can.
Keep smiling!!

Jean

> I've has RA since '98 in my late twenty's. Male, no family history.
> Tried and failed MTX, enbrel, remicade, kineret, humira, and arava.
[quoted text clipped - 30 lines]
> Thanks for playing. I would appreciate knowing what an experienced
> group like this thinks.

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chuck, welcome aboard. And the answer is E. will spend the next ten
years wondering if gold might have been the ticket...>g< keep laughing
at the cruelty of the world chuck cause there really is a lot of beauty
left no matter how deep the hole is your peering out of.

johnie

> I've has RA since '98 in my late twenty's. Male, no family history.
> Tried and failed MTX, enbrel, remicade, kineret, humira, and arava.
[quoted text clipped - 30 lines]
> Thanks for playing. I would appreciate knowing what an experienced
> group like this thinks.

Reply to this Message

MY choice is also E) None of the above.

There are always new meds coming down the pipeline and so there is
always hope that the next one will be your miracle drug. Even now you
still have some choices. I notice that you do not mention taking
cyclosporine, an antibiotic that is sometimes tried for RA. That may
be one avenue to explore. Another may be rituxan.

In RA as in everything else attitude is everything, and I think you
have a good one. Basically my advice is keep thinking positively,
spend your days with meaningful people, share meaningful experiences,
and get the most out of life despite the pain.

I spent the first 15 years of my JRA with unrelenting pain, and it was
not until I tried gold, that I achieved a (partial) remission.By that
time, I had had three major joint replacements, and significant joint
damage elsewhere. Although that lasted two years, it was the beginning
of my trying other drugs that worked even more effectively.
Penicillamine was one of the best ones, and I took that for several
years. Then came the biologics, and the two that I tried worked well.
My point is that you never know what is ahead because at this point
there are many new drugs in clinical trial.

Keep your positive attitude, your sense of humour, and your joi de
vivre. Then whatever else comes, you will be prepared to handle it.
Rose @}>->--
Being educated means that rather than fearing the unknown, one seeks to understand it. RB

Please remove "Ima" to reply.

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Nann Bell - 03 Aug 2006 04:59 GMT

> There are always new meds coming down the pipeline and so there is
> always hope that the next one will be your miracle drug. Even now you
> still have some choices. I notice that you do not mention taking
> cyclosporine, an antibiotic that is sometimes tried for RA. That may
> be one avenue to explore. Another may be rituxan.

wise words, but I
ll point out that cyclosporin is an immuno-suppressant. In fact it was the
breakthrough in immuno-suppressant therapy that made today's high number of
transplants feasible.

There is also an antibiotic out there that has helped some people, but I'm
blocking on the name right now. You can learn more at www.roadback.org
Never did anything for my PA, unfortunately.

> Keep your positive attitude, your sense of humour, and your joi de
> vivre. Then whatever else comes, you will be prepared to handle it.

And Rose has shown us that as well as anyone ever can. :)

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Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

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RoseB - 03 Aug 2006 07:09 GMT

>ll point out that cyclosporin is an immuno-suppressant. In fact it was the
>breakthrough in immuno-suppressant therapy that made today's high number of
>transplants feasible.

Ok that is not the one I meant, but rather the one you referred to
later in your post, the abx protocol advocated by the Roadback
foundation. Is it minocycline? Like you, I was not certain of the
name.I should have looked it up.

Sorry for giving wrong information.
I guess that puts me down a mark. :(
Rose @}>->--
Being educated means that rather than fearing the unknown, one seeks to understand it. RB

Please remove "Ima" to reply.

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E. Don't give up hope yet. Even now there are options you haven't tried - In
DMARDs there are Orencia and Rituxan (sp?).

You seriously need to be taking milk thistle extract to help out your liver -
it's available in the vitamins/supplements section of just about any store.
I buy mine at WalMart.

And what has your doctor put you on for the gastritis? Many folks here have
to take stomach meds in order to tolerate their other meds.

Meanwhile, have you been evaluated for possible fibromyalgia and/or any sleep
issues? Your fatigue could be from just the RA, but it is also possible that
one or both of the above has entered the picture and is contributing to the
fatigue. It'd be worth checking out - anything that helps some is a step in
the right direction.

BTW, my dad was on gold shots in the late 60s/early 70s. They didn't make
him all well, but they did help some and he had no side effects from them.
IIRC, we have someone here on the group who found gold worked better for her
than any of the newer DMARDs, so give it a shot.

I feel for you and know you are going through hell. My first horrendous PA
flare was in the days before aggressive early treatment. I'm still amazed
that I made it through that first year, it was that horrible. Hang in there
- your miracle is out there.

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Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

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