General Information

[Guest guest]

The CR Support List continues to slowly gain members and is at an all time

high in membership.

Thank to everyone for adhering to list rules, trying to stay

on topic (most of the time) , and keeping the tone of the list polite and

civilized. Although we've been criticised by a very few in the past for

" monitoring and censoring " , this policy has helped the list maintain high

quality posts.

Incidentally any censoring or moderating of posts is used infrequently, as

explained on the home page, right hand margin.

Suggestions and recommendations for improving the CR Support List are always

welcome - send either on or off list.

[Guest guest]

Dear Joe- I would educate myself on the degeneration prednisone causes. If you take a small dose of estrogen, as well as something like actonel or fosamax and have bone density scans once a year I dont see why you cant stay on Prednisone. I am on 5 mg a day and am taking extra folic acid. The doctor should talk to you about biologic therapy or cyclosporine and something like MTX or imuran in conjunction. I would also make sure you have your thyroid function checked as well. You have to weight your pain versus your quality of life. Taking folic acid and supplemental vitamins will offset the prednisone. Careful monitoring is the key I think. Good Luck, Deborah

On 11/3/06, todamacs <todamacs@...> wrote:

Hi to all,I was diagnosed with A.K. about two years ago. myspecialist decided to put me on prednisone 10 ml per day and tramadol 50 ml three times a day. After a while the pain and stiffness began to

re-appear so he increased the prednisone dose to an extra 5 ml to betaken later in the day. this seemed to be working quite well but my wifeand other relatives were concerned about the length of time I had been

getting the prednisone. one other arthritis sufferere in my family saidhis Dr. would only give him steroids for a maximum of ten days. So,after being on this program for about 18 - 20 months I asked my Doc

about the prednisone, he said I had been on it for too long and we wouldmove to another medication. Six weeks ago I began taking Plaquenil aswell as my aforementioned dosage of tramadol and it has been a downward

spiral since. I now have the same level of pain and stiffness that sentme looking for a specialist in the first place. My questions are, isthis normal, can anyone direct me to better medication. I know you will

probably tell me to get a second opinion but that isn't easy for me. Mysituation is that Live on a smallish island and the doctor I see is theonly specialist in that field. My medical insurance will not pay for me

to travel abroad when they have someone locally. thanks for reading andany help will be appreciated. Joe

[Guest guest]

I am confused by the term A.K. and by drug

amounts given in ml when they are usually given in mg.

Prednisone is a drug that all of us would

like to avoid but we prefer to take it when needed so we can function as we

need to. I was on it for about 18 months before we added the correct

medications at the correct dosages to get the disease under control. In

my case that was first Arava for about three months without much success, a

switch to Methotrexate at 20 mg once a week, also for three months without much

success, and then adding Remicade at 3 mg/kg with a slow increase to 6

mg/kg. We were about ready to switch to something else when the drugs

started to work and I was able to get off the Prednisone. I know some

others who would dearly love to be off Prednisone but have been unable to find

anything else to permit them to function.

Your doctor is not being very aggressive

with your treatment and that was the way RA used to be treated. The

theory was that drugs had some bad long-term effects so wait for signs of

damage before giving RA medications. (Prednisone is not usually

considered an RA medication because it is good for the symptoms but not as

effective as other medications for slowing joint damage.) For about the

last 10 years the treatment philosophy has changed to using aggressive

treatment early to reduce the risk of joint damage and then once the disease is

controlled to back off medications.

Plaquenil is probably the mildest RA

medication and often takes about a year to become effective. Your

increased pain with the Plaquenil might be just a progression of your RA

because the medication has not become effective for you yet. I think most

rheumatoloists would add Methotrexate to your other medications in hopes that

either that or the Plaquenil will slow down the RA. Once it is under

control then you can try to get off medications one at a time, starting with

getting off Prednisone. By searching the web for rheumatoid early

aggressive I came up with many hits to support using aggressive treatment from

the start. I suggest you read some of these and copy something to discuss

with your rheumatologist.

http://arthritis.about.com/od/rheumatoidarthritis/f/earlytreatment.htm

If you can’t get more aggressive

treatment from your rheumatologist, I suggest seeing if your family doctor

would be willing to provide the treatment. Otherwise you will either need

to find some way to get to another rheumatologist or plan on having permanent

joint damage and becoming disabled. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of todamacs

Sent: Friday, November 03, 2006

2:46 PM

Rheumatoid Arthritis

Subject:

general information

Hi to all,

I was diagnosed with A.K. about two years ago. my

specialist decided to put me on prednisone 10 ml per day and tramadol

50 ml three times a day. After a while the pain and stiffness began to

re-appear so he increased the prednisone dose to an extra 5 ml to be

taken later in the day. this seemed to be working quite well but my wife

and other relatives were concerned about the length of time I had been

getting the prednisone. one other arthritis sufferere in my family said

his Dr. would only give him steroids for a maximum of ten days. So,

after being on this program for about 18 - 20 months I asked my Doc

about the prednisone, he said I had been on it for too long and we would

move to another medication. Six weeks ago I began taking Plaquenil as

well as my aforementioned dosage of tramadol and it has been a downward

spiral since. I now have the same level of pain and stiffness that sent

me looking for a specialist in the first place. My questions are, is

this normal, can anyone direct me to better medication. I know you will

probably tell me to get a second opinion but that isn't easy for me. My

situation is that Live on a smallish island and the doctor I see is the

only specialist in that field. My medical insurance will not pay for me

to travel abroad when they have someone locally. thanks for reading and

any help will be appreciated. Joe

[Guest guest]

Hi Joe You know what I did and it worked wonders, I peel garlic cloves about 10 of them, then put them in the blender with any kind of rum, tequila, what ever is in your liquor cabinet and blend them to a paste, take one spoon full every day, and then you will tell me if anything aches I add it to tomatoe juice since it has lycopine or whatever. If you need more natural remedies just shoot down an e-mail I am in good old Mexico Saludos Fred, 59 born in July 18

Want to start your own business? Learn how on Small Business.

[Guest guest]

Sorry Harold, the disease is A.S, ankylosis spondulaitis and you are quite correct the meds are mg's not ml's. I have just been to see my rhuemy two days ago and he has decided to move me on to a new set of meds. This week I start on MTX at 10 mg's once a week and continue with plaquenil twice daily with a reintroduction of 5mg's of prednisone a day for four weeks also a folic acid sub. I am still taking the tramadol three times daily.My next visit on Jan 4th he will switch me to enbrel. The pain and stiffness is still lingering but I get a manageable few hours a day. What do you think about this, also I really appreciate your insight into the problem. Thanks again. Joe

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

Joe, now I agree with your doctor and I

hope the new regime gives you relief. I hope you can first get your AS

under control and then get off some of your medications or at least reduce

them. However, the first priority is to add medications as necessary till

your AS is controlled. I haven’t studied AS extensively but from

what I have seen it sounds like the only difference from RA is that AS usually

attacks the spine while RA does not. I think they are either the same

disease or at least very close relatives. God bless.

From:

Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]

On Behalf Of joseph macaulay

Sent: Saturday, November 11, 2006

12:36 PM

To:

Rheumatoid Arthritis

Subject: RE:

general information

Sorry

Harold, the disease is A.S, ankylosis spondulaitis and you are quite correct

the meds are mg's not ml's. I have just been to see my rhuemy two days ago and

he has decided to move me on to a new set of meds. This week I start on

MTX at 10 mg's once a week and continue with plaquenil twice daily with a

reintroduction of 5mg's of prednisone a day for four weeks also a folic acid

sub. I am still taking the tramadol three times daily.My next visit on

Jan 4th he will switch me to enbrel. The pain and stiffness is still lingering

but I get a manageable few hours a day. What do you think about

this, also I really appreciate your insight into the problem. Thanks

again. Joe

Cheap Talk? Check

out Messenger's low PC-to-Phone call rates.

[Guest guest]

Hello Harold.... you seem to know a lot about this disease. May I ask

you a couple questions that you may have answers to. Just want some

kind of opinion. I received a paper with my meds yesterday cautioning

users of NSADs that long time users have a greater risk of stroke or

heart attack. I have been taking Relafen for about 10 or more years

now. Did you ever hear of that? Also I have been itching on my arms

for about 2 years and now my head is also becoming itchy. They say it

may be a side effect of the drug. I have been to a dermatologist and

they blame dry skin but I changed soaps and use cream and still get

itchy. My doctor can't really answer me about that ....He just tells

me to go to a derm. What are your thoughts on these subjects?

Harold Van Tuyl wrote:

Joe, now I

agree with your doctor and I

hope the new regime gives you relief. I hope you can first get your AS

under control and then get off some of your medications or at least

reduce

them. However, the first priority is to add medications as necessary

till

your AS is controlled. I haven’t studied AS extensively but from

what I have seen it sounds like the only difference from RA is that AS

usually

attacks the spine while RA does not. I think they are either the same

disease or at least very close relatives. God bless.

From:

Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]

On Behalf Of joseph

macaulay

Sent: Saturday,

November 11, 2006

12:36 PM

To:

Rheumatoid Arthritis

Subject: RE:

general information

Sorry

Harold, the disease is A.S, ankylosis spondulaitis and you are quite

correct

the meds are mg's not ml's. I have just been to see my rhuemy two days

ago and

he has decided to move me on to a new set of meds. This week I start on

MTX at 10 mg's once a week and continue with plaquenil twice daily

with a

reintroduction of 5mg's of prednisone a day for four weeks also a folic

acid

sub. I am still taking the tramadol three times daily.My next visit on

Jan 4th he will switch me to enbrel. The pain and stiffness is still

lingering

but I get a manageable few hours a day. What do you think about

this, also I really appreciate your insight into the problem. Thanks

again. Joe

Cheap Talk? Check

out Messenger's low PC-to-Phone call rates.

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.409 / Virus Database: 268.14.2/528 - Release Date: 11/10/2006

[Guest guest]

" Also I have been itching on my arms

> for about 2 years and now my head is also becoming itchy. They say

it

> may be a side effect of the drug. I have been to a dermatologist and

> they blame dry skin but I changed soaps and use cream and still get

> itchy. "

While I know it's expensive as all get out, you might try a lotion from

Dermalogica. You can go to their website and see what products they

have. I swear by their stuff, it's the best I've ever found for skin

and body care. I usually try to find the things I need on Ebay because

of the cost, but you can use their search engine to find a shop near

you that sells the stuff, and ask for samples before you buy.

Another thing my Grandma used to do was to get Vit E in a bottle

(usually have to ask the pharmacist because it's behind the counter or

sometimes it's near the bandaids and wound care) and then get

hemmorhoid ointment, and some hydrocortisone cream. Use about 2

Tablespoons of the vit E, and then just a teaspoon or so each of the

other two. Use sparingly on the itchy parts. This is NOT a doctor

approved remedy, but when I had eczema, poison ivy, etc this is what

she'd whip up. I used it recently because an antibiotic I was on made

me itch on my arms and legs. I used the whole bottle of Vit E and still

just small amounts of the other creams and slathered it on my arms and

legs!

Best wishes!

Cloud Seery