Re: Med Help

[Guest guest]

Sherri;

I use Ice and Heat alternating 15 minutes at a time when my joints were swollen,

or inflamed. I still do if I'm having problems.

Another drug your doctor might try would be Remicade. It is given by infusion

and the methotrexate I take is pretty small too. Just thoughts that might help,

I don't know. Melt

Med Help

My question is, does anyone have any suggestions on something else I can

take/w my pred to ease the pain and inflamation? My dr has no clue as to what to

give (he is pretty new to this as am I). His nurse has said she will take any

and all suggestions to the dr and see what might work for me. Now I have to tell

everyone that I have a very small throat opening so really big pills may be out.

[Guest guest]

Are you simply taking aspirin, no NSAID's (non-steroidal anti-inflammatories)

like ibuprofen? Or what about naproxen. There should be other things besides

plain aspirin. Hope you feel a little better. I always hate lowering my dose of

pred, I become aware of every single little ache and pain so much more. Good

luck!

In His strength,

Fight * 1 4:1-2

" He who is not

courageous enough

to take risks will

accomplish nothing. "

-Muhammad Ali

From: ipcjogger@...

Sent: Thu 3/2/2006 9:28 PM

To: stillsdisease

Subject: Med Help

Hi all. Hopefully you are having a better day than I am. I am taking pred. and

have asked the dr. to cut down the dosage again b/c I can't stand the side

effects anymore. I am currently taking 40mg and am waiting to hear from the

rheum tomorrow to find out if I can cut it down. My problem is is since the last

cut I have had pain in my knees and left arm 24/7, it won't go away. I wince and

wine but I refuse to up the dose again. The only thing is I only take pred and

aspirin. I am afraid that if we cut down again that I will have more pain. My

question is, does anyone have any suggestions on something else I can take/w my

pred to ease the pain and inflamation? My dr has no clue as to what to give (he

is pretty new to this as am I). His nurse has said she will take any and all

suggestions to the dr and see what might work for me. Now I have to tell

everyone that I have a very small throat opening so really big pills may be out.

I have had a problem swallowing my whole life so i

magine

how drs feel trying to give me meds. Pred is pretty small and easy for me to

take, so if you know of anything around that size that might work my legs would

appreciate it as would I.

Thanks Sherry in Toledo

Visit the Still's Disease Message Board

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The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

>TO ipcjogger.

Are you seeing a Rheumatologist or just a Family Practitioner or a

non speciality internist? Sounds like your doc should refer you to

someone else. Is it a problem with no specialists in the area?

What state are you in? Urban or rural area?

Remicade would require someplace willing to do infusions. Anyone

had any luck with Humarin or Embril and self injections?

To Melt:

Thanks for the hint about hot and cold. Still rcovering from a

flare last week. Yes, had to bump up pred. Going to work from home

today and hot/cold my joints. Thank God I have an understanding boss

and broadband/VPN/IP Phone. Just like being in the office without

the commute and all the conveniences of home.

> The materials and information contained in this message are not

intended to replace the services of a trained health professional or

to be a substitute for medical advice of physicians and/or other

health care professionals. The International Still's Disease

Foundation is not engaged in rendering medical or professional

medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation

makes no representations or warranties with respect to any

treatment, action, application, medication or preparation by any

person following the information offered or provided within this

support form.

>

> ion by any person following the information offered or provided

within this support form.

>

>

>

[Guest guest]

Sherry,

They need to try you on Methotrexate if they have not and you need something

stronger for pain. Many take ibuprofen or other nsaids, many of us are on

narcotic painkillers, I take morphine and percocet for pain. I also take

Methotrexate and Kineret. Other drugs that are used are the Kineret,

Enbrel, Remicade, Humira, etc. Kineret has had particularly good results

with stills I have read, but you have to have tried Methotrexate before you

move on to these.

Are you seeing a rhuematologist? If you are and he does not know what to do

I would personally be pretty concerned. These are all pretty standard

treatments for an inflammatory arthritis.

Good luck

Lynn

-- Med Help

Hi all. Hopefully you are having a better day than I am. I am taking pred.

and have asked the dr. to cut down the dosage again b/c I can't stand the

side effects anymore. I am currently taking 40mg and am waiting to hear from

the rheum tomorrow to find out if I can cut it down. My problem is is since

the last cut I have had pain in my knees and left arm 24/7, it won't go away

I wince and wine but I refuse to up the dose again. The only thing is I

only take pred and aspirin. I am afraid that if we cut down again that I

will have more pain. My question is, does anyone have any suggestions on

something else I can take/w my pred to ease the pain and inflamation? My dr

has no clue as to what to give (he is pretty new to this as am I). His nurse

has said she will take any and all suggestions to the dr and see what might

work for me. Now I have to tell everyone that I have a very small throat

opening so really big pills may be out. I have had a problem swallowing my

whole life so imagine

how drs feel trying to give me meds. Pred is pretty small and easy for me

to take, so if you know of anything around that size that might work my legs

would appreciate it as would I.

Thanks Sherry in Toledo

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Sherry,

Most of the drugs I mentioned can be injected also, no need to swallow. I

inject both Methotrexate and Kineret.

Lynn

-- Med Help

Hi all. Hopefully you are having a better day than I am. I am taking pred.

and have asked the dr. to cut down the dosage again b/c I can't stand the

side effects anymore. I am currently taking 40mg and am waiting to hear from

the rheum tomorrow to find out if I can cut it down. My problem is is since

the last cut I have had pain in my knees and left arm 24/7, it won't go away

I wince and wine but I refuse to up the dose again. The only thing is I

only take pred and aspirin. I am afraid that if we cut down again that I

will have more pain. My question is, does anyone have any suggestions on

something else I can take/w my pred to ease the pain and inflamation? My dr

has no clue as to what to give (he is pretty new to this as am I). His nurse

has said she will take any and all suggestions to the dr and see what might

work for me. Now I have to tell everyone that I have a very small throat

opening so really big pills may be out. I have had a problem swallowing my

whole life so imagine

how drs feel trying to give me meds. Pred is pretty small and easy for me

to take, so if you know of anything around that size that might work my legs

would appreciate it as would I.

Thanks Sherry in Toledo

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Sherry,

I would ask your RD about taking kineret. I have been on it for a little over a

month now and I have decreased my dose of pred. from 40mg to 20mg. As far as

pain management ask your RD about using Fentanyl transdermal patch. It is a very

powerful narcotic so you need to take another opiate for a week or so before you

can use the Fentanyl patch other wise you can overdose. Hope you can get the

help that you need.

Brett

Med Help

Hi all. Hopefully you are having a better day than I am. I am taking pred. and

have asked the dr. to cut down the dosage again b/c I can't stand the side

effects anymore. I am currently taking 40mg and am waiting to hear from the

rheum tomorrow to find out if I can cut it down. My problem is is since the last

cut I have had pain in my knees and left arm 24/7, it won't go away. I wince and

wine but I refuse to up the dose again. The only thing is I only take pred and

aspirin. I am afraid that if we cut down again that I will have more pain. My

question is, does anyone have any suggestions on something else I can take/w my

pred to ease the pain and inflamation? My dr has no clue as to what to give (he

is pretty new to this as am I). His nurse has said she will take any and all

suggestions to the dr and see what might work for me. Now I have to tell

everyone that I have a very small throat opening so really big pills may be out.

I have had a problem swallowing my whole life so imagine

how drs feel trying to give me meds. Pred is pretty small and easy for me to

take, so if you know of anything around that size that might work my legs would

appreciate it as would I.

Thanks Sherry in Toledo

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

I want to thank everyone for the info. I am going to call the dr in a few

minutes and let him know. Yes I do see a rheum with whom wants me to get a

second opinion on my diagnosis. I think he is more unsure about this disease

than I am. I will find another rheum and see what they say. My PCP is very

caring and understanding. With this being arthritic I think she wants to leave

the med dispense to the rheum. I will also be calling her to see if she will

talk to him and help find something that will work for me. Thanks again for the

help. My arm is hurting enough to make me cry, so I need to go. I will keep you

all posted when I find something. Sherry

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Thoughts are with you. Good Luck

>

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not

intended to

> replace the services of a trained health professional or to be a

substitute

> for medical advice of physicians and/or other health care

professionals. The

> International Still's Disease Foundation is not engaged in

rendering medical

> or professional medical services. You should consult your

physician on

> specific medical questions, particularly in matters requiring

diagnosis or

> medical attention. The International Still's Disease Foundation

makes no

> representations or warranties with respect to any treatment,

action,

> application, medication or preparation by any person following the

> information offered or provided within this support form.

>

> ion by any person following the information offered or provided

within this

> support form.

>

>

>

[Guest guest]

I am on 20 mg of predisone and 400 mg of plaquenil ( a common arthritis

medication). I have some mild achiness that comes and goes, occaisionally

I'll take Ibuprufin if I'm feeling more sore than usual, and that usually

does the trick. Everyone is different, but good luck.

a

Med Help

> Hi all. Hopefully you are having a better day than I am. I am taking pred.

> and have asked the dr. to cut down the dosage again b/c I can't stand the

> side effects anymore. I am currently taking 40mg and am waiting to hear

> from the rheum tomorrow to find out if I can cut it down. My problem is is

> since the last cut I have had pain in my knees and left arm 24/7, it won't

> go away. I wince and wine but I refuse to up the dose again. The only

> thing is I only take pred and aspirin. I am afraid that if we cut down

> again that I will have more pain. My question is, does anyone have any

> suggestions on something else I can take/w my pred to ease the pain and

> inflamation? My dr has no clue as to what to give (he is pretty new to

> this as am I). His nurse has said she will take any and all suggestions to

> the dr and see what might work for me. Now I have to tell everyone that I

> have a very small throat opening so really big pills may be out. I have

> had a problem swallowing my whole life so imagine

> how drs feel trying to give me meds. Pred is pretty small and easy for me

> to take, so if you know of anything around that size that might work my

> legs would appreciate it as would I.

>

> Thanks Sherry in Toledo

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

> to replace the services of a trained health professional or to be a

> substitute for medical advice of physicians and/or other health care

> professionals. The International Still's Disease Foundation is not engaged

> in rendering medical or professional medical services. You should consult

> your physician on specific medical questions, particularly in matters

> requiring diagnosis or medical attention. The International Still's

> Disease Foundation makes no representations or warranties with respect to

> any treatment, action, application, medication or preparation by any

> person following the information offered or provided within this support

> form.

>

> ion by any person following the information offered or provided within

> this support form.

>

>

>

[Guest guest]

Dear Sherry;

How sad to hear what a rough time you are having. Doctors usually begin with

NSAIDS. These include: Celebrex (I still take this, but it is a controversial

choice, your doctor can explain), Lodine, Ansaid, Motrin, Ibuprofen, Oruvail,

Toradol, Indocin, Mobic, Naprosyn, Relafen, Daypro, Feldene, and others I'm

surely forgetting.

It is important to be able to decrease the amount of prednisone you are

taking, but it is very important that you only do this under the supervision of

your physician. Never try to reduce the amount of prednisone on your own or

forget a dose. The next drug a Rheumatologist usually tries is methotrexate.

Methotrexate needs to be taken with Folic Acid to reduce the risk of

drug-related liver damage. Some people do fine on the pill form of

methotrexate. For those who have trouble with the side effects of oral

methotrexate (mtx), it is available by injection. If you don't respond well to

that, your Rheumatologist may want to try a DMARD (Disease Modifying Anti

Rheumatic Drug), all of the drugs can be read about on our site. Your

Rheumatologist can be given our web site address, or you can give her one of our

brochures. On the front of our website, your physician can read more on

" Treatments for Stills. "

If I were your physician, I'd seek out a colleague with more experience in

treating patients with Stills Disease. Dr. Cush is a Rheumatologist with

extensive experience with Stills Disease. He has an article on our site worthy

of reading. I believe he's been happy to consult with other physicians via

telephone. And, I think he's been available to see patients who are able to

travel for a consultation (correct me if wrong, anyone!).

As for pain control, every physician has his or her limit. My Rheumatologist

is a very well known and knowledgeable man, but he's not very good with pain

control. He doesn't like the use of narcotics, but I have far too many

additional problems that affect my disease. So, I go to a Pain Management and

Rehabilitation Physician. We've tried many things Physical Therapy, various

narcotic medications in addition to Neurontin for pain due to neuropathy. I've

had joint injections as well as injections in multiple areas of my spine.

Nothing has worked well for me with the exception of MS Contin (morphine

sulfate). That isn't a good place to start (MS Contin), but if you are

experiencing pain out of control, it isn't necessary. I don't hide taking MS

Contin from my Rheumatologist. And, he doesn't like it. But, I insist each of

my specialists stick to their specialty. It is said in a polite, but firm

manner.

Please remember you have to become your own advocate. Find a Rheumatologist

with more experience, or ask your Rheumatologist to please consult with a

physician who has experience treating Stills Disease. Please keep us updated on

how you are doing!

In Peace,

Barbara Gardner

Ventura, CA