Intro from

[Guest guest]

Welcome ,

I also went un-diagnosed for PA for many years. Part

of the reason I'm sure is that i had very little

psoriasis, just scalp and a small patch on my elbow.

Of course the mail reason was my aversion to doctors.

It is quite possible to have severe PA with little P.

=====

C McCullough

thelockhorns@...

[Guest guest]

Hi !

I think what your talking about is Eyrthema Nodosum. I have had it several

times in the past 15 years. It usually appears on the shins, very painful,

swollen red lumps, that turn brown, and they take ages to go away. When they

do leave they have left large dents in my legs. They can give iodine shots

into the spots and also give it orally. I am allergic to iodine so I've

never tried that treatment. Rest and Prednisone was my primary treatment. I

was best cared for by a Dermatologist who seemed to understand it and

identify it easiest. I did see others before I found him -- and internist who

thought I must be infected with sarcoidosis, a GP who was sure it was spider

bites, and so on. I do know it is thought to be caused by a reaction to

Sulfa drugs, follow a strep infection (which needs to be treated for at least

a year if it is the case), and be a complication of ulcerative colitis. My

Dermatologist never called it an infection he told me they really don't know

what causes it, there are many theories. If the lumps are biopsied they only

come up with inflammation in the tissues, imagine that! I had most of my

outbreaks before I was DX with PA, in my 30's like you. I am seriously

allergic to Sulfa and I think it may be a link, but we have never been able

to pinpoint anything. My sympathy! I hope it never comes back!

Ilene

[Guest guest]

Good Luck! You'll be lucky if you STILL have a pediatrician after next

week. I just went through all this. I got my exemption letter but had

a very difficult time finding a doc that would treat non vaxed kids. I

am telling you....just be prepared...it is an uphill battle!!!!

> Hi All-

>

> Just joined the group, so here's a quick hello. I have 2 sons: 2-

> 1/2 and 6 mos. My 2-1/2 year old had all the standard vaccinations

> through 18 mos, and my 6 mo old had them through 4 mos. I recently

> decided not to continue vaccinations for my kids.

>

> We have not experienced any adverse reactions that I can see, never

> really had even a fever or fussiness after shots. We've been lucky,

> but after becoming more aware of this issue recently, I've decided

> not to press our luck any further. My husband is fully on board in

> this. We have not told our families yet, expect a lot of negative

> reactions there. Also, my baby's 6 mo. checkup is next week, and I

> will be telling the pediatrician no shots. We'll see how that goes!

>

> I feel good about the decision. My oldest is almost never sick

> (except for a couple of mild colds in the winter), my youngest has

> not been sick at all yet. We have never had an ear infection;

> oldest was breastfed until 21 months, youngest still nursing. Not

> vaccinating I feel will only further boost their immune systems.

>

> I am looking forward to becoming more educated on this issue so I

> can fend off all the nay-sayers. We are in IL and I have already

> checked out the dept. of pub health website to see that we can get a

> religious/philosophical exemption for school.

>

> Thanks for reading, looking forward to future discussions-

>

> Hall

> La Grange, IL

[Guest guest]

Well, I'm prepared to lose the doc. I have found a couple of

homeopaths nearby and a good ped chiro who does not believe in

vaccines, so I'll have other resources IF my kids get sick.

Also have a friend whose ped still takes her kids even though she

refuses shots.

> > Hi All-

> >

> > Just joined the group, so here's a quick hello. I have 2 sons:

2-

> > 1/2 and 6 mos. My 2-1/2 year old had all the standard

vaccinations

> > through 18 mos, and my 6 mo old had them through 4 mos. I

recently

> > decided not to continue vaccinations for my kids.

> >

> > We have not experienced any adverse reactions that I can see,

never

> > really had even a fever or fussiness after shots. We've been

lucky,

> > but after becoming more aware of this issue recently, I've

decided

> > not to press our luck any further. My husband is fully on board

in

> > this. We have not told our families yet, expect a lot of

negative

> > reactions there. Also, my baby's 6 mo. checkup is next week,

and I

> > will be telling the pediatrician no shots. We'll see how that

goes!

> >

> > I feel good about the decision. My oldest is almost never sick

> > (except for a couple of mild colds in the winter), my youngest

has

> > not been sick at all yet. We have never had an ear infection;

> > oldest was breastfed until 21 months, youngest still nursing.

Not

> > vaccinating I feel will only further boost their immune systems.

> >

> > I am looking forward to becoming more educated on this issue so

I

> > can fend off all the nay-sayers. We are in IL and I have

already

> > checked out the dept. of pub health website to see that we can

get a

> > religious/philosophical exemption for school.

> >

> > Thanks for reading, looking forward to future discussions-

> >

> > Hall

> > La Grange, IL

[Guest guest]

cool....hope it goes well..i'm off to bed...talk to yu all later!!---

In Vaccinations , " " <jljhall@s...> wrote:

> Well, I'm prepared to lose the doc. I have found a couple of

> homeopaths nearby and a good ped chiro who does not believe in

> vaccines, so I'll have other resources IF my kids get sick.

>

> Also have a friend whose ped still takes her kids even though she

> refuses shots.

>

>

> > > Hi All-

> > >

> > > Just joined the group, so here's a quick hello. I have 2 sons:

> 2-

> > > 1/2 and 6 mos. My 2-1/2 year old had all the standard

> vaccinations

> > > through 18 mos, and my 6 mo old had them through 4 mos. I

> recently

> > > decided not to continue vaccinations for my kids.

> > >

> > > We have not experienced any adverse reactions that I can see,

> never

> > > really had even a fever or fussiness after shots. We've been

> lucky,

> > > but after becoming more aware of this issue recently, I've

> decided

> > > not to press our luck any further. My husband is fully on board

> in

> > > this. We have not told our families yet, expect a lot of

> negative

> > > reactions there. Also, my baby's 6 mo. checkup is next week,

> and I

> > > will be telling the pediatrician no shots. We'll see how that

> goes!

> > >

> > > I feel good about the decision. My oldest is almost never sick

> > > (except for a couple of mild colds in the winter), my youngest

> has

> > > not been sick at all yet. We have never had an ear infection;

> > > oldest was breastfed until 21 months, youngest still nursing.

> Not

> > > vaccinating I feel will only further boost their immune systems.

> > >

> > > I am looking forward to becoming more educated on this issue so

> I

> > > can fend off all the nay-sayers. We are in IL and I have

> already

> > > checked out the dept. of pub health website to see that we can

> get a

> > > religious/philosophical exemption for school.

> > >

> > > Thanks for reading, looking forward to future discussions-

> > >

> > > Hall

> > > La Grange, IL

[Guest guest]

Hi ,

I am so sorry to hear of your diagnosis, . I am HLA-B27 too. Welcome to our

group. The folks here are wonderful and offer a wealth of insight and support. I

do not have AS but I do have Reiter's (aka ReA)

I was diagnosed in April of 2004. For the past two years, I have been working

with a holistic MD and I have been helped by eating as much organic food as I

realistically can, taking enzymes before eating, using probiotics after

antibiotics, high doses of Vit. D (2,000) organic fish oils that are high in EPA

to fight inflammation, regular acupuncture, and Chinese herbs. 100 mg's oral

micronized bio-identical progestrone helps my inflammation, too. Exercise is

essential to maintain a good attitude and mobility so I walk and do gentle yoga

and swim in a warm pool when I can. The pool work is excellent for those of us

with tendon and joint problems. Just start easily and do not overdo it. I was so

excited to move without pain I over did it. I had to take a break to let my

tendons rest.

It really helps to keep a symptom journal as you make changes with your meds and

other practices. It is so important to have a good team of MDs who are good

listeners and know about your condition...we are rare.

My RH MD and my eye MD are fine with my using this approach instead of the

stronger meds, such as methotrexate. I take a half dose of mobic (7.5 mg) daily

and now use only NSAID eye drops twice daily to control my eye inflammation. In

2004, I had dreadful inflammation in my left eye and have finally gotten off the

steroid eye drops. Being off the steroid drops is a big step for me.

My holistic MD checks my blood quarterly to make sure I am not overdoing the

Vit. D. As the last two results have not been too high I may increase this dose

in the new year. Time magazine recently had an article on Vit. D and some MD's

are thinking 4,000 is not too much.

In the new year, I will be experimenting with a food plan that will start with a

few days of a juice/water fast followed by a food plan of eating only the foods

that I test very low reactivity to on my allergy test. I'll keep you posted on

the results of that grand experiment.

I wish you luck and will keep you and all my " spondy " friends in my prayers.

Regards,

in CA

[Guest guest]

Hi

Welcome! It's hard being diagnosed with something like this, so be nice to

yourself as you come to terms with it

With the various forms of inflammatory arthritis, including Rheumatoid (RA),

research suggests that early and fairly 'aggressive' treatment often

achieves the best outcome, but you need do the research and decide for

yourself.

Sulphasalazine is the standard drug a Rheumatologist tries first, but is

actually fairly mild and won't often/always be effective by itself. Many

people, like myself, then go onto methotrexate as well. If that combo

doesn't work, there are some heavy duty new drugs that have been acheiving

spectacular results. (This is quite a good time to get one of these diseases

(lol) as effective treatments are increasing.

I suggest you visit some reputable rheumatology patient sites ( Hopkins

etc), search under AS and get a feel for standard treatments. And talk to

your rheumatologist about your medication worries too. There are some lovely

AS people on this site

(Currently in remission - yay! and on sulphasalazine and methotrexate)

[Guest guest]

Hi ,

Glad you managed to get with us again.

If your blood test was quite recent, do ask your doctor for a copy of the results together with the laboratory's range. e.g. your number might be 3 and the labs range 1 - 4. You are entitled to this information but if it is more than a certain time since you had it done they can charge.

However, if it is a while since you had it done, I suggest you ask for it to be done again and also ask for your T4 to be tested at the same time, and also tested for antibodies. After that test you will be able to get a copy of the results (and let us know what these are).

Lilian

[Guest guest]

Hi

Good to have you back with us, and yes, it is also good to have our

forum back up and running. It is a very busy right now, so

obviously, many of our members missed it.

> My story is fairly straight forward. I am knocking on 40's door and I

do

> seem to have the usual symptoms of hypothyroidism, but so far have not

had a

> diagnosis. I have had blood tests, 3 so far, and all have come back

> negative.

, did your GP test to see whether you have low ferritin (stored

iron). Many get symptoms that are very similar to hypothyroidism and

having a low ferritin, if left untreated, can actually cause

hypothyroidism. Do get this done if you haven't had it done before.

Also, go to our Home Page and oln the left panel, click on FILES and

read everything about adrenals (also do the Adrenal Questionnaire0 and

read everything there about Candida. If you suffer with one or both of

these, you MUST get them treated.

What doctors don't realise is that many sufferers of hypothyroidism get

many of the symptoms long, long before the blood results go outside the

normal reference ranges, and doctors are missing this - it is quite

appalling that they don't seem to realise that this disease has been

diagnosed and treated successfully for over a hundred years and without

the help of any blood tests.

Can you let me know whether you would be willing to see a private

specialiust ion thyroid disease and if so, can you let me know what part

of the oUK you live and I will try to find somebody in your area. Would

you also be willing to travel outside your area. To many of ous sadly,

this is our only option and believe me, at the end of the day, the trip

and money paid out for a private consultation could pay dividends in

getting you back to normal health. You do need good health to be

bringing up a young family.

Have a look at the symptoms and signs of hypothyroidism in our FILES

and cross off how many you suffer and let us know.

Do get back to us as soon as you can and let us know what you think.

Luv - Sheila

>

> Please excuse me if I dont write often. I dont have a computer but we

do go

> to my stepsons house a couple of times a week and he lets me use his

> computer. I like to leave him and his dad alone for a couple of hours,

> especially when the football is on (yawn!)

>

> Thank you, and good to see you back. I thought I had lost you forever!

>

>

>

[Guest guest]

I'm 52 and I've known I had RA since I was 18. I got gold shots and

took aspirin back then. Over the years I collected diagnosis after

diagnosis. Lupus, myasthenia gravis, mixed connective tissue disease

and a whole bunch more.

The diseases take turns being dominant. Right now it's the RA. I saw

this in the group description and quick joined ;-p

" It is OK to whine - we expect and tolerate it. "

Ohhhhhh...I feel like whining. Perhaps a hug and gentle pat on the

back would be nice ;-)

My life has been more stressful than usual lately. I figure that's one

reason the RA is flaring so bad. The other reason is that I'm in

between insurances at the moment. I was getting IVIg for the MG and it

made my RA better. Same story with years of prednisone and a few

months on cellcept. Now all I have in my arsenal is 800 mg Motrins. I

am sooooooooooo sore!

My hand joints are hot and red and my fingers are deforming again. My

joints all hurt, but especially hands, knees, shoulders, neck and one

elbow.

I was offered Humira or Enbrel by my last rheumy, but I took cellcept

instead. Now I'm ready to choose a biologic. I hope to learn more here

about the pros and cons of different treatments.

Waaaaaa! I am soooooooo sore!

the Wanderer

On the road in an ancient RV and also living in a (GASP) apartment in

Florida

http://wendyusuallywanders.wordpress.com/

You give but little when you give of your possessions.

It is when you give of yourself that you truly give.

[Guest guest]

Hi and welcome. Let us know how you do with a biologic. The group is

probably sick of me saying it, but I'm a HUGE fan of Enbrel, it's made a world

of difference for me. Cheers and hugs, Kate F

[ ] Intro from

I'm 52 and I've known I had RA since I was 18. I got gold shots and

took aspirin back then. Over the years I collected diagnosis after

diagnosis. Lupus, myasthenia gravis, mixed connective tissue disease

and a whole bunch more.

The diseases take turns being dominant. Right now it's the RA. I saw

this in the group description and quick joined ;-p

" It is OK to whine - we expect and tolerate it. "

Ohhhhhh...I feel like whining. Perhaps a hug and gentle pat on the

back would be nice ;-)

My life has been more stressful than usual lately. I figure that's one

reason the RA is flaring so bad. The other reason is that I'm in

between insurances at the moment. I was getting IVIg for the MG and it

made my RA better. Same story with years of prednisone and a few

months on cellcept. Now all I have in my arsenal is 800 mg Motrins. I

am sooooooooooo sore!

My hand joints are hot and red and my fingers are deforming again. My

joints all hurt, but especially hands, knees, shoulders, neck and one

elbow.

I was offered Humira or Enbrel by my last rheumy, but I took cellcept

instead. Now I'm ready to choose a biologic. I hope to learn more here

about the pros and cons of different treatments.

Waaaaaa! I am soooooooo sore!

the Wanderer

On the road in an ancient RV and also living in a (GASP) apartment in

Florida

http://wendyusually wanders.wordpres s.com/

You give but little when you give of your possessions.

It is when you give of yourself that you truly give.

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[Guest guest]

please feel free to e-mail anytime about anything. talking to someone who truly

understands can help take care God bless

<wsm311@...> wrote: I'm 52 and I've known I had RA since I

was 18. I got gold shots and

took aspirin back then. Over the years I collected diagnosis after

diagnosis. Lupus, myasthenia gravis, mixed connective tissue disease

and a whole bunch more.

The diseases take turns being dominant. Right now it's the RA. I saw

this in the group description and quick joined ;-p

" It is OK to whine - we expect and tolerate it. "

Ohhhhhh...I feel like whining. Perhaps a hug and gentle pat on the

back would be nice ;-)

My life has been more stressful than usual lately. I figure that's one

reason the RA is flaring so bad. The other reason is that I'm in

between insurances at the moment. I was getting IVIg for the MG and it

made my RA better. Same story with years of prednisone and a few

months on cellcept. Now all I have in my arsenal is 800 mg Motrins. I

am sooooooooooo sore!

My hand joints are hot and red and my fingers are deforming again. My

joints all hurt, but especially hands, knees, shoulders, neck and one

elbow.

I was offered Humira or Enbrel by my last rheumy, but I took cellcept

instead. Now I'm ready to choose a biologic. I hope to learn more here

about the pros and cons of different treatments.

Waaaaaa! I am soooooooo sore!

the Wanderer

On the road in an ancient RV and also living in a (GASP) apartment in

Florida

http://wendyusuallywanders.wordpress.com/

You give but little when you give of your possessions.

It is when you give of yourself that you truly give.

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

Never miss a thing. Make your homepage.

[Guest guest]

I am also a HUGE fan of Enbrel. When I count my blessings, Enbrel is

always somewhere near the top of the list.

Sue

On Saturday, January 26, 2008, at 04:42 PM, Fair wrote:

> Hi and welcome. Let us know how you do with a biologic. The

> group is probably sick of me saying it, but I'm a HUGE fan of Enbrel,

> it's made a world of difference for me. Cheers and hugs, Kate F