Re: Marti - Plaquenil

[Guest guest]

Christi,

I don't know what Plaquenil is, but I do know what it is being used for in me

and the side effects, which are less than the drug that was my other choice -

Methotrexate. I have Sarcoidosis in many places in my body, but one of the main

places is my eyes. I've talked about this severe problem before. Sarcoid has

caused me to have Glaucoma, severe inflammation of the uvea, including the iris,

and retina. It has caused my pupils to change sizes and the lens to reflect

light differently. I can't go in the sun unless I have on very strong sun

glasses, even in the winter in CT when the sun is very low. For a year I

couldn't drive because of my eyes, but after many shots in my eyes, I can now

see again. I struggle still with glare and print, such as the size on this

site. I have to magnify every ting to 150% to read it. The doctor has been

able to get rid of the glaucoma to a great extent and to restore my distance

vision. Since coming down on the Prednisone those

symptoms are some of the ones that are coming back. So I have extensive eye

exams by an Eye Disease Specialist every four weeks. This doctor is in close

contact with my Pulmonologist, my primary sarcoid doctor, in deciding what might

be the best course of treatment for me.

Plaquenil is used on-label in Sarcoidosis for removing calcium from the

body.(In addition of course to Malaria). That's not why he is using it on me

right now though. It is to just try to stall the Sarcoidosis without raising

the Prednisone again. They keep me quite up to date on the side effects and I

have to have " standing order " blood tests, which makes it easier for me since I

can just go to a lab near me without any instructions or doctors' orders.

There are many things that I am being monitored for, additionally because of

the bone cancer that I am in chemotherapy for three days a week. Tomorrow will

start the third week.

Thanks for your concern,

Marti

Christi Randall wrote:

Marti

Plaquanil is used to treat malaria primarily. They have found other uses for it

also. I have used it to treat severe pains (thought they were arthritis), but

decided the potential side effects and cost were not for me. If your doctor did

not tell you, make sure you get a special eye exam 2x a year as one of the side

effects is blindness. Now before you panic, this has been found in those who

were treated with extremely high doses for malaria, but due to that they now

want everyone to take the precaution of getting the eye exams. IF you start to

get black spots in your vision, stop the medication and they should go away. Did

not want to scare you, but since I have taken it and it worked very well, but

the cost really did get to be a bit much for me and I stopped it, I thought you

might want to know about the medication. Good luck and I hope it works for you.

What dose are you on?

Christi Randall

www.singingwomenoftexas.com

Re: End of second week of chemo - Thanks to all

Hi Debra,

Thanks for keeping up with me. I appreciate it.

I hope I can go back on Prednisone, as much as I hate the side effects too. The

doctor has put me on Plaquanil, which I have no idea what is, but he said it

should help the Sarcoid.

[Guest guest]

Marti,

Sorry to hear of all you are going through, but I am glad to hear that you are

under such good care and quite frequent too. I had no problems with the

plaquenil when I was taking it, I just wanted to make sure you were aware of

that side effect and took the proper percautions. Sounds like you are. I hope

it works well for you in what you need it to do.

Christi Randall

www.singingwomenoftexas.com

Re: End of second week of chemo - Thanks to all

Hi Debra,

Thanks for keeping up with me. I appreciate it.

I hope I can go back on Prednisone, as much as I hate the side effects too. The

doctor has put me on Plaquanil, which I have no idea what is, but he said it

should help the Sarcoid.