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Sjogrens Topics => Living With Sjogren's => Topic started by: lelole on May 13, 2009, 12:15:48 PM

Title: My plaquenil script is waiting for me, but I've had no info?
Post by: lelole on May 13, 2009, 12:15:48 PM
Hi all,

The receptionist of my GP surgery called today to tell me that my script of Hydroxychloroquine (I think it is Plaquenil) is waiting for me.  I am to pick it up tomorrow...

I asked her if the doc has said how to take it - and she said it just says 2 tablets a day...

Can some of you who are old hats at this give me some advice please?

Thanks

Leah xx
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: dbab on May 13, 2009, 12:32:52 PM
Hi Leah,

One pill is 200 mg so with two pills you are taking 400 mg.  You can take these two together or you can split it up in two doses.  I take mine in two (w/ breaky and w/ dinner) - taking with food is advised.  Since you are new to it, you may want to ask the nurse or doctor if you can just take one a day for a week or so to let your body learn to tolerate it, if you are prone to be sensitive to medicine.

I've been taking mine for a couple of years now and don't have any side effects anymore.  I did have some mild nausea and slight itching in the beginning but nothing terribly bothersome.
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: jonnell on May 13, 2009, 01:57:43 PM
Did your doctor tell u u need to see the opthomoligist every 6 month.  It is rare but it can cause eye problems.  My 4 year old is on 50 mg of plaquinil once a day for sjs and they want her eyes to be checked every 6 months.  I also know you have to limit your sun exposure while taking it, however if you have sjs you probably do any way.   Good Luck   Hugs and Kissess   Jonnell and Jenna
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: fatburningmachine on May 13, 2009, 02:03:04 PM
I was told to ease into the Plaq. Starting with 1/2 tablet and working up to the 2 tablets over time. I think I was on one tablet for at least a month before I worked into two. It was some time ago so I have forgotten the time thing, but I know I wasn't supposed to start with the whole 400 in the beginning.
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: Scottietottie on May 13, 2009, 04:33:22 PM
Hi  :)

I'm with fatburningmachine. Get up to full dose slowly - even if it takes 3 or 4 weeks. It takes weeks or even months to be fully effective anyway.
Always take with food and do not take antacids within 2 hours of taking Plaquenil.

I built up to 400 per day and had no side effects. I take both tablets with my breakfast. Others split the dose. Either way is fine.

Take care - Scottie  :)
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: irish on May 13, 2009, 10:42:59 PM
Leah, I have read articles and seems that it is good if you can have a baseline eye exam about the time you start the med. That way the doc has something to compare your 6 month eye exams to.

There have been many postings here reporting that many of the opthalmologists see very little eye problems with Plaquenil. The reason being is that the dose given to sjogrens patients is so much lower that what is used to treat other disease.

Hope you are able to take it with good response. Irish ;D
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: kindandcaring on May 14, 2009, 04:18:42 AM
Ive been started on plaquenil now for about a month..and I was put straight onto 400mcg a day (2 x 200mcg) eaten with food (brekky / dinner)

Didnt suffer any stomach issues ..however I know have a ringing in my ears pretty much most of the time..after diggin this is a possible side effect be it rare.

I was told by 2 specialists that if no improvement within 2 months then I should stop...thats a big contrast to what most people say..as most beleive it can take maybe 6 months to see positive effects.

Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: lelole on May 14, 2009, 11:31:35 AM
Hi all,

Thanks for the info, I picked up my script this morning, and had it dispensed, but haven't taken it as things have taken a bit of an odd turn...

I was looking on the internet last night at plaquenil to get an idea of what the official advice is, and I noticed that it said be careful with psoriasis.  Well I have been menaing to go to my GP for a while with a rash on my scalp which is extending down on to my face, and some nails coming away I have mentioned on here before, and wondered if it was psoriasis.

The Rheumy hadn't seen it, and I didn't mention as it flares up and down and it had never been present when I saw him, and I did not think it was relevant. Anyhow, I went in and spoke to the pharmacist and he looked at it, and said that it looked very much like Psoriasis, and he asked why I was being put Plaquenil, and when I told him it was Sjogren's secondary to an arthritis of unknown origin and showed him my finger joints, he said it could be Psoriatic arthritis.

Anyway to cut a long story short, he rang the GP, and the GP does not want me to start the Plaquenil until he has seen me next Tuesday...

So not taking it yet, but will deffo take the advice to start it slowly when I do...

Leah xx



Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: beverley on May 14, 2009, 12:38:11 PM
Leah,
The advice to start slowly is probably very good, although I started 3 years ago straight away on a split 400mg dose, morning and evening with food.  I have had no side effects at all - already had tinnitus so cannot comment on this.  It really took about 4 - 6 months to feel the benefits but it has proved a godsend for me as it has meant I can keep working.  My eyes are checked annually and my optician sends a report to my GP each time so he can monitor any changes but so far so good.

Sorry to hear about your psoriasis.  I hope they find an effective medication for you soon.

Beverley
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: lelole on May 15, 2009, 01:33:43 AM
Hi Beverley,

Thanks hon, I am hoping they will let me take it anyway, it's good to hear it is helping you to stay at work, as I have been worrying about that!  It does seem that on balance most people are happy with it and experience few if any side effects so that bodes well...

Leah xx

Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: beverley on May 26, 2009, 06:18:35 AM
Any update on your plaquenil situation Lelole - and how is the psoriasis?  Are you in a place where hayfever is in full blow because I know they are sometimes linked and one can make the other worse.

Beverley
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: lelole on May 26, 2009, 01:45:33 PM
Hi Beverley,

Well I got the go ahead to start taking the plaquenil last Wednesday, so I decided to take one tablet per day at first which I did for the first 5 days, and then the last couple of days I have taken the full 400mg, and I have to say apart from some nausea which may be due the horrid cough bug I have had for the last 2 weeks, it has been goign well so far...

The psoriasis - I still don't know if it is or not! The stuff on my scalp had died down, and because I have been having overlays on my nails, the doc was unsure whether they were psoriasis nails either... I think I am quite near you (if you are the lady in Callington) I am the one in Plymouth...but i don't think I have had too many problems with hayfever this year - just a few sneezles... thinking about it though, the last time it flared up was last summer!!

Hope you are well, take care

Leah x
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: seren on May 26, 2009, 03:53:05 PM
Aw bless you Leah, this illness seems to take all kinds of twists and turns, I am glad your not starting the plaquenil straight away, its obvious your GP wants to check some things with you...

Take Care - let us know what happens next week.

Paula X
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: watoozie on May 26, 2009, 06:16:15 PM
I started out with 200mg with breakfast and 200mg with supper.  It took a good 4 months to reap the benefits, but boy did it ever help me, wouldn't want to have to go off it.
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: beverley on June 11, 2009, 01:04:05 PM
Leah, you are right, we are neighbours.  How are you getting on with the plaq. now?  I reckon if you haven't had any major side effects you're probably on the home straight.  It will take a few months for you to feel the real benefit - I think mine was about six months.

Beverley
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: kathyl on June 11, 2009, 02:34:10 PM
You need to tell your Rheumatologist if you might have psoriasis and arthritis.  My brother has psoriatic arthritis and it can get unpleasant.  He takes Remicade infusions every six weeks and the highest allowable dose of methotrexate. Take a picture of the rash to show your doctor in case you do not have it when you see him next.  Good luck and I hope you do not have psoriatic arthritis.  As for the plaquenil, 400 mg gave me an irregular heartbeat so I started out on 200 mg  and did so well I stayed on that dose.  It just took longer to work.
KL
KL
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: lelole on June 13, 2009, 09:06:17 AM
Hi,

I am doing quite well on the plaq. now I think.  I did have some scary moments with it a couple of weeks ago with some mystery bruising and an all over rash, but it has all settled down now.  I did have a lot of nausea at first, but now I am pretty much OK, although I do feel a bit queasy about an hour or two after taking it.  I am hoping that the benefits, when they appear, will be worth a touch of nausea!

KL - I have to admit that it is looking mre and more like Psoriatic arthritis, I have been having quite a lot of stiffness and pain in my lower back and hiops, which is apparently classic for PA.  I really hope it isn't either as it can be a bit like RA in it's effects it seems...  Sorry to hear your brother has it, it must be pretty hard for him, is he able to lead a relatively normal life with the MTX and remicade?
Take care,

Leah x
Title: Re: My plaquenil script is waiting for me, but I've had no info?
Post by: lynnmarie219 on June 13, 2009, 07:45:41 PM
Hi Leah!

So glad to hear that the plaquenil seems to be working well for you and that your body is adjusting fairly well to the med. I hope you feel the full benefits of plaquenil soon. I have taken it for almost 5 years now with no problems or bad side effects....i feel that it has truly helped me!

Continued good luck to you!