What Next??

[Guest guest]

I have had PA for about 3 and a half years. They say in some of my

joints it is chronic. In this time it has moved around? It started

in my left knee, which was chronic, then went to my left ankle, for

awhile in both then knee became secondary. They fused the ankle and

scraped the knee, now I have hardly any pain in either. But now has

spread first to my right wrist and is also now in the left wrist.

I have been on MTX since diagnosed, but had to cut my dose into only

3 per week due to high liver counts. They have had me on and off of

predisone and also the shots. Caught TB in the ER and had to be

treated for 12 months of meds for that before starting on enbrel.

Have been on Enbrel a year and a half. It was a miricle at first and

I seemed to go into remission, now everytime I take it I get an

infection, either sinus, upper resperatory, or urinary tract.

They have also had me on a slew of different anti inflammitories,

none of which seem to help other than good old Ibiprophen

(sometimes).

Now they have me on Plaquinel also, which is leaving me with nausua

along with a few other unwanted side effects.

Rhumy says I'm a tough case and may want to try Humira? But aren't

all of those kind of the same?? When I get an infection I can just

stop the enbrel as it only stays a week (if that), where don't the

others stay longer???

I am now also having ALOT of back pain, can you have PA in your

back???

I'm so frustrated!!! Does anyone else have a case so complicated as

mine????

JenP

MA

[Editor's Note: No one knows if Humira will work for you, however, it is NOT

the same chemical formula as Enbrel. Some people have great results on both,

some on one but not the other and some on neither. The only way to know if it

will work for you is to try it. Humira is a wonder drug for some people who did

not have good results on Enbrel and vice versa. Kathy F.]

[Guest guest]

In a message dated 20/11/2006 00:03:54 GMT Standard Time,

peltierpainting@... writes:

I am now also having ALOT of back pain, can you have PA in your

back???

Hi JenP,

Not sure if you are new but if you are, welcome to the group. If not, Hi. lol

Yes, you can have PA affecting your back, usually at the base of the spine.

Ankylosing Spondylitis. I have it although Its not the worst case there ever

was. Still, it can cause real discomfort when its bad.

Take care,

[Guest guest]

>

> I am now also having ALOT of back pain, can you have PA in your

> back???

Dear Jen,

I have PA/AS in my spine. Mine is located in my thoratic spine.

(Upper back along the rib line) So far my lower back has been mostly

unaffected.

Tell your doctor about your back pain.

Sandi

[Guest guest]

Jen I also have PA that is located in my neck and my spine at least

that is what my doctor tells me I am now taking enbrel and it is

helping the backpain a lot take care and have a great day

>

>

>

[Guest guest]

Sandi you told Jen you had PA in your thoracic spine my Doctor tells

me I have PA in my neck and spine I have a lot of pain in my thoracic

spine and I was wondering did yours show up on X-rays. My DR didn't

X'ray my thoracic spine just my cervical and lumbar and found evidence

of PA there so she didn't bother doing any more. My thoracic spine is

where I have the most pain I have been taking Enbrel for about 6

months and it does help alot with the back pain. Take care and have a

happy and healthy Thanksgiving, LINDA

[Guest guest]

> > I am now also having ALOT of back pain, can you have PA in your

> > back???

In the site " Links " you will find:

/links/Anklosing_

Spondyliti_001018541263/

If you Google " psoriatic arthritis " you will find many hits that

describe our disease. The arthritis foundation, Wikipedia, and many

places will tell you a great deal about the spinal involvement of PA.

It is one of the least common forms. I have it and my spine is about

80% fused. Most of the people who have it in their spine also get it

in their hands and feet and their intercostal articulations. many

other tissues can be involved along with virtually every articulating

joint in your body. I suggest you do some searches to learn more.

Perhaps start with this site's links on the left (which you find when

you are at the web page rather than getting messages in your mail).

[Guest guest]

Dear ,

Pain is my thoratic spine is what began my journey

into PA. Out of the blue last May I started having

terrible pain in my upper back that would grip my

entire ribcage. It felt as if my back was broken.

The pain would drive me from bed.

I dealt with it for about 2 weeks (thinking I had

injured myself planting flowerbeds) before going to my

Dr. The pain puzzled me because it would be so intense

in the morning and night, yet after a few hours of

moving around it would subside. My Dr took X-rays and

it shows bony spurs on 4 of my t-vertebre.

I was referred to a rhuemy who took extensive

MRIs that confirmed partial fusing of my upper spine.

I was diagnosed with ankylosing spomdilitis, given

pain meds and NSAIDs and sent home.

It was my dermatologist, however, that diagnosed

me with PA because of my neg RA tests, my skin

psoriasis (of 23 years), changes in my nail beds and

my positive HLA-B27.

Because my sacro joints and lumbar spine show

little to no changes, my rhuemy to this day resists my

PA diagnosis. Despite this my derm put me on Enbrel

stating that " diseases don't always read the

textbook " . LOL

Anyway, my back pain is better these days unles I

overdo.

If you are having pain, tell your doctor you want

x-rays. If nothing else it will give you a picture of

your spine to compare to later possible changes.

Sandi

________________________________________________________________________________\

____

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[Guest guest]

Hi Ali

I think you have probably reached the point of no return, and you seriously have to decide for yourself whether you want to give another increase a go or to take matters into your own hands and start to look after your health yourself. I think that the majority of people who have got their own health back have done so through doing it themselves, or putting their health into the hands of a private doctor, like Dr Peatfield or Dr Skinner et al.

The one thing you must do (if you are going down this road) is to check you do not have low adrenal reserve (and I bet you will have) or that you have Candida Albicans. You should also check if your ferritin is low, because any of these three problems will stop your thyroid hormone from working. You really would benefit by getting the results of a Free T4 and Free T3 test to see where these lie in the reference range. Even though they might be within the reference range, we need to know at what end of the reference range they are. It sound to me as though you may have a conversion problem, and you are not converting the inactive hormone T4 into the active hormone T3 and it is the t3 your body needs to make it function.

Do the questionnaires on Adrenals and Candida that are in our FILES. You can access these from the Home Page of our Forum, or from the bottom of this message if you are receiving individual emails - and then, if necessary, get the salivary tests done. Ask your GP to test your ferritin, and if very low, get some ferrous sulphate. If you are well prepared and your body has been boosted in all the right quarters, you will probably do very well on Armour.

As a matter of interest, have you asked your GP for a trial of synthetic T4/T3 combination?

Luv - Sheila

Hi allI am currently taking 150 thyroxine. I was initially ok on this dose but it was short lived and now all symptoms are returning. I am exhausted after the school run and can barely manage the stairs to my office. I also have aching, feet mainly, but if i hold any position for long it aches.I have hip bursitis which is worse, my breathlessness is also returning and i have a lumpy throat and dense brain fog. After wrangling with my doc over which specialist to see i got to go to the thyroid clinic. I don't know what the results were of all the tests, but after phoning to chase. i am told she has written telling me and my gp that they were "normal",(she'll love that). But she has recommended a small increase in thyroxine. I am not convinced this will do any good,and am disappointed as the dr told me she would ring me, so i had ready a list of questions i will not now be able to ask until May 14th. I bought some armour a few weeks ago, but held off for the test results. not sure wether i should give the increase a chance or go it alone. I will post results if or when get i them. I am also having an ultrasound next week for the lumpy throat. I really don't want to waste more time going backwards and forwards begging and pleading with dr's, feeling that they are sneering at me and thinking i am a nutcase.Any thought appreciated.AliX

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[Guest guest]

Hi Penny,

150mcgs was the amount I was taking when I suddenly starting showing all the symptoms of hypo again. Went to doc, had a blood test, dropped dose back to 125 mcgs, still felt rotten. Got a referral to endo and she dropped thyroxine down to 50 mcgs and added 20 mcgs T3. Nine days into this regime and went completely hyper. Terrible palpitaitons, missing beats, pulse 45 bpm, felt dizzy, spaced out and thought at one time I might go unconscious. Phoned endo who told me this feeling couldn't possibly be caused by the T3, told me to phone my GP as it was obviously something else that was wrong with me. That was when I decided to seek help outside the NHS. It was found I was not converting T4 into the active T3 and given a prescriptiopn for Armour. I have never looked back since that day.

You really don't have to stay on a medication that is doing you no good whatsoever Penny. Ask for a referral to an endocrinologist because you obviously need the opinion of an expert. Try to find one though who DOES know about thyroid disease.

luv - Sheila

Ali,For what it's worth I'm in pretty much the place as you (150mcg and getting nowhere)and I'm not a nutcase either! Let us know what you decide and good luck!Penny

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[Guest guest]

Thanks Sheila

I pretty much agree with you. I think the only way for me to get a

T4/T3 trial is to go along with the doc at the clinic (my GP won't go

above her)and try the increase til May then if its still not working

ask for the trial. It may mean feeling rotten for a couple more

months though! I have some NAE and get up to 2 per day i feel my

adrenals are compromised but not severely. My problem is that i

forget to take them! But i will start again. I stopped recently

because i didn't know what tests the doc would do and i didn't want

to influence them. I tried the test for Candida and i think i am

clear. I asked for the test results so will post when i get them and

make a decision from there.

thanks

Ali

X

>

> Hi Ali

>

> I think you have probably reached the point of no return, and you

seriously have to decide for yourself whether you want to give

another increase a go or to take matters into your own hands and

start to look after your health yourself. I think that the majority

of people who have got their own health back have done so through

doing it themselves, or putting their health into the hands of a

private doctor, like Dr Peatfield or Dr Skinner et al.

>

> The one thing you must do (if you are going down this road) is to

check you do not have low adrenal reserve (and I bet you will have)

or that you have Candida Albicans. You should also check if your

ferritin is low, because any of these three problems will stop your

thyroid hormone from working. You really would benefit by getting the

results of a Free T4 and Free T3 test to see where these lie in the

reference range. Even though they might be within the reference

range, we need to know at what end of the reference range they are.

It sound to me as though you may have a conversion problem, and you

are not converting the inactive hormone T4 into the active hormone T3

and it is the t3 your body needs to make it function.

>

> Do the questionnaires on Adrenals and Candida that are in our

FILES. You can access these from the Home Page of our Forum, or from

the bottom of this message if you are receiving individual emails -

and then, if necessary, get the salivary tests done. Ask your GP to

test your ferritin, and if very low, get some ferrous sulphate. If

you are well prepared and your body has been boosted in all the right

quarters, you will probably do very well on Armour.

>

> As a matter of interest, have you asked your GP for a trial of

synthetic T4/T3 combination?

>

> Luv - Sheila

>

>

>