The Lupus Forum banner
1 - 15 of 15 Posts

·
Registered
Joined
·
4,369 Posts
Discussion Starter · #1 ·
This topic may have been covered in the past but I can't find any info!

Can anyone tell me what would be the normal doseage to start with when first diagnosed with SLE - 'is there a normal starting doseage'?

Apologies, I seem to always be asking questions!

Lesley
 

·
Registered
Joined
·
4,369 Posts
Discussion Starter · #3 ·
Forgot to mention I'm only on 200mg a day!

Only diagnosed early Dec 2007 by phone - have not seen specialist (Immunologist) since Sept 2007 so have not received any advice or explanation of SLE - apart from that given from everyone on this site.

Lesley
 

·
Registered
Joined
·
7,800 Posts
Hi there,

200mg a day is a pretty low dose. Sometimes people are started on that especially if they have problems adjusting to plaquenil (stomach etc.) but are usually on 400mg. However, it does actually depend on your weight. Maybe you are very light? Another reason for a lower dose might be if someone was in a medicated remission or doing well and the docs feel that dose is sufficient.

Here's a post that discusses the normal dosage of plaquenil (see Clare T's post)

http://www.thelupussite.com/forum/showthread.php?t=66902&highlight=plaquenil+weight+dose

hope that helps,
Katharine
 

·
Registered
Joined
·
4,369 Posts
Discussion Starter · #5 ·
Hi,

Kartherine you may have given me the answer for now!

Before diagnoses I weighed 8st 4lbs, and had gastro problems.
Now after Pred 'coated' (now stopped), Plaquenil, NSAID and 40mg Omeprazole. I get bad acid reflux with NSAID's. Ihave stopped NSAID's for a while to see how I cope with pain and now have less acid reflux. So it looks like Plaquenil is okay on low dose with regards to acid reflux. After Pred and Christmas I now weigh 9st 5lb. Never new they can cause weight gain, Christmas is not a good time to take them with the extra food around!!

I also do have probs. with eyes 'map-dot dystrophy syndrome' and 'pigment dispersion', along with dry eyes (not good on spellings of medical names). Never been diagnosed/tested for Sjorgens Disease (that's another question!!)

My Immunologist must be opting for cautious dose!

Thanks!

Lesley
 

·
Registered
Joined
·
7,800 Posts
Hi again Lesley,

Yes, he may well be being cautious if you already have eye problems. That seems logical to me. Of course, I'm not a doctor and don't know that much about it :)

I'm sure you'll see with time and whoever is following you up can explain further - Just remember to ask.

bye for now,
Katharine
 

·
rockstar!
Joined
·
837 Posts
My rheumy similarly went with a cautious approach due to my low weight and gastro problems at diagnosis. I was (...am still :( ) about 105 pounds, but very tall. The max I can be on is 300 mg and so maybe I will move toward that someday, but I think they just keep me on the 200 mg for now because I haven't had problems with it and because I still have been unable to gain back the weight that I lost.
 

·
Registered
Joined
·
3,471 Posts
my Rheumy started me on 400mg for 6 months then i went down to 200mg have been on the 200 since that was a few yrs back now...
 

·
Registered
Joined
·
4,369 Posts
Discussion Starter · #9 ·
Thanks all!

My weight at present is over for height 5ft 3, weight before starting Pred was just fine!

Lesley
 

·
Registered
Joined
·
15,684 Posts
Hi lesley,

My Immunologist started me on 200mg for 3 months, partly to see my response and how I tolerated it. After that time he put it up to 400mg and I've stayed on that ever since. My eye health was fine and remains fine.

I weighed just over 8 stone and I'm 5' 5 1/2" but that was because of how ill I had become. These days I hover around 9 if really well and it drops to 8 and a half or lower when I get sick. That can happen in a couple of days, it's just the way Lupus attacks me!

love
Lily
 

·
Registered
Joined
·
1,003 Posts
hi lesley

thanks for posting,I am now wondering why I am only on 200mg of plaquenil as I was originally on 400mg,although maybe it's because of being on the azathioprine now...mmm must remember to ask at my next rheumy visit :rolleyes:

I would think that at your next appointment they would higher the dose if you are tolerating the 200mg.

leslie don't worry about asking questions there is so much to learn & it's all quite complicating!& remember knowledge is power,& we certainly need plenty of that :)

take care..karen x
 

·
Registered
Joined
·
8,577 Posts
Karen,

Some doctors lower the plaquenil dose after their patients get stable on the treatment regimen. It never seems to make sense to me. However my doctor has talked in the past about lowering my dose to 200mg of Plaquenil per day but I always flare and the subject gets dropped. My rheumy is considered a lupologist so I will definitely ask why the next time he brings it up.

Take care,
karen
 

·
Registered
Joined
·
1,003 Posts
hi karen

Thank you for the information :) I do agree with you it doesn't make much sense at all.I would be curious to know what your rheumy thinks.

I was taken off the plaquenil to be put on immuran,but after being on it for 4 months & still not as good as I should be my rheumy instructed me to add the plaquenil too..he was a little baffled as to why I had stopped it originally ,even though it was under his instructions!

however that was a few months ago so I'm wondering whether it would be wise to higher the dose now as although I am a lot better & more mobile to what I was I am still having problems with my joints..my hubby is concerned that I am still not as good as I have been in the past but I'm just grateful that I am not in constant pain now.

just a pity I didn't think of this last week when I had an appointment with my rheumy :rolleyes:

I hope you are well karen & you have recovered from your recent flare.
take good care & thanks again
karen x
p.s oops sorry to ramble on!
 

·
Registered
Joined
·
15,684 Posts
Hi Karen,

When is your next appt? Maybe you could ring and ask about going up to the 400mg Plaq now? I'm on Imuran also, but he just kept me on Plaq then added the Imuran.

love
Lily
 

·
Registered
Joined
·
1,003 Posts
hi lily

my next appointment isn't until april now.I could ring the rheumatology nurse to inquire about it,although will feel a little stupid explaining why I never mentioned it last week :rolleyes:
I just hadn't gave it a thought about the plaquenil dose until reading this post but to be honest he was quite dismissive about the breathing problems i've been experiencing & my sensitivity to fluorescent lights :worried: so I just ended the appointment quite quickly

oops sorry i'm rambling on again
thanks so much for your advice lily
take care..karen x
 
1 - 15 of 15 Posts
Top