RE: Reducing Prednisone to Marla

[Guest guest]

I have Sarcoid in my lungs, skin,

joints and neuro as far as we know.  I did not gain weight with the plaquanil,

but I had already gained 50 lbs with the pred. and it has taken me 2 ½ years to

lose any of the weight, and it wasn’t until I had my healing that I lost

most of the weight, but still not all of it.  Plaquanil truly has not given me

any problems, I don’t know about the others on the list?

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Naa Koshie O.

Mills

Sent: Monday, May 22, 2006 5:30 PM

To: Neurosarcoidosis

Subject: RE: Reducing Prednisone to Marla

Thank you for answering my email. I've been a little

hesitant. One of my issues with prednisone is the weight gain. Have you had

those issues with plaquenil? I've gained 65 pounds while on the prednisone and

am trying to lose weight because I don't want the extra pounds to cause other

issues. It's taking everything in me to deal with the sarcoid by itself. I'm

not trying to be skinny again, just as healthy as I can be.

Where do you have sarcoid? I'm always curious about others.

I have it in my lungs, skin, and joints.

Naa Koshie

Marla Bramer

wrote:

I have been on Plaquanil for

almost 6 years now, no problems, can't remember

if I had any in the beginning, I don't think so, my eyes always check out

OK, you have to get your eyes checked every 6 months, I can't remember why,

but my doctor has me coming every year now, since I've had no problems, good

luck, it really helped my breathing a lot, I was put on because I broke out

with a terrible rash whole body, they thought lupus but in the end said it

was related to Sarcoid, and has helped keep the lesion down, but really

noticed a change in my breathing. So am still taking it, one at night,

and

2 in the am.

Good luck, and God bless,

Marla

Reducing Prednisone

My doctor has been reducing my prednisone dosage for the past few months.

Now that I am down to 10 mg he wants to add Plaquenil. I've done some

research on Plaquenil, but I'd like to know what others'

experience have been on the drug.

Please respond...

Naa Koshie

[Guest guest]

Connie...I took Plaqqinil over 5 year ago. It really effeted my

skin. I felt as if I had not washed in a week when I had just

showered two hours before. I tried to stay on it but it just becaue

too much for me. I then went on injectable Methotrexate and have

been on it for five year. Recently Pred was added and now the

Remicade

It appreas that some medications work for soem folks and some don't

I guess

Good Luck

>

> I have been on Plaquanil for almost 6 years now, no problems,

can't remember

> if I had any in the beginning, I don't think so, my eyes always

check out

> OK, you have to get your eyes checked every 6 months, I can't

remember why,

> but my doctor has me coming every year now, since I've had no

problems, good

> luck, it really helped my breathing a lot, I was put on because I

broke out

> with a terrible rash whole body, they thought lupus but in the end

said it

> was related to Sarcoid, and has helped keep the lesion down, but

really

> noticed a change in my breathing. So am still taking it, one at

night, and

> 2 in the am.

> Good luck, and God bless,

> Marla

>

> Reducing Prednisone

>

> My doctor has been reducing my prednisone dosage for the past few

months.

> Now that I am down to 10 mg he wants to add Plaquenil. I've done

some

> research on Plaquenil, but I'd like to know what others'

> experience have been on the drug.

>

> Please respond...

>

> Naa Koshie

>

>

>

>

>

>