[Salopsally]

You all talk on here about this drug. It seems common place in the treatment of Lupus for lots of you.
I want it. Im trying to get it.
My Rheumatologist has never mentioned it. My GP says she would never have thought of it if I hadnt told her and showed her some infomation on it.
She now thinks it sounds a good idea for me to try it but is trying to get some backing from the Rheumy and he just never replies to her letters e mails or phone calls.
She is hoping he will say she can prescribe it and we can see how it goes.
Im just wondering if ive not been prescribed it or it even mentioned and GP didnt even know about it is it that commonly prescribed for SLE?
I must admit I believe you lot more than I do them. I know lots of you see proper Lupus doctors so Im sure you all know best really.
Sal x

 

[LolaLola]

Sally, it really is the most basic, safe first choice of treatment. I would be very bothered if a Rheumy did not suggest it. Even the Paediatrician who used to treat my children for unrelated stuff knew about it!
x Lola

 

[Maia]

Ditto what Lola just said. It's really surprising you haven't been put on it already. It can be very effective, and has so many positive benefits and next to no bad side effects. It is the first DMARD people are put on when you get a lupus diagnosis.

 

[Katharine]

It is THE FIRST basic, lupus drug prescribed by any doctor who has an inkling of knowledge of lupus.

The only times a patient is not on plaquenil is if they are one of the rare people who is intolerant.

Katharine

 

[Clare.T]

Hello Sal

I want it

:rotfl:

Too darn right. Your GP's ignorance isn't all that surprising but as for the rheumy ........... No printable comment !
Anti malarials have been in regular use for over 50 years for both SLE and RA, but their good effects have been known for over a century. They are discovering ever more huge benefits all the time.
It's now being advocated as an' insurance' medicine that people should continue to take it even in full remission to help stop flare ups and potential more serious disease forms as well as things like benefits to lowering cholesterol, blood thinning, (cardio/atherosclerosis) reducing diabetes, helping against infections and by its disease dampening effects lots of other incidentals that lupus can cause that aren't spoken of so much, for example lupus itself can cause osteoporosis.

You are being denied the most basic essential treatment. ( Mind, it isn't an overnight miracle drug but it can make all the difference)

It has to be used with caution in some cases - it can worsen psoriasis and reduce seizure thresholds in epileptics; pre existing eye conditions might be a contraindication and there a group of people with an unusual enzyme deficiency who need to be careful with it. And if individuals can't tolerate it there's the alternative anti malarial Mepacrine (US Quinacrine)

You hang in there Sal with b. minded determination, and good luck

Clare

 

[BigSis]

Hi Sal,
Of course you should have it!!
They are discovering new benefits for lupies from this drug all the time.

I gave it a break for a while for medical reasons..............after six weeks my joint pain returned with a vengence ..............after two months the fatigue hit. I won't be parted from it again.

Get chatting to the people in the rhuemie clinic waiting room (I always do) and see if anyone is on Plaq. Perhaps this particular/perculia rheumie doesn't like it for some reason.

Best of luck

 

[Jesse88]

Clearly, you need a new rheumy doctor. To not suggest Plaquenil is bad enough, but he's not even giving your GP any assistance. Time to kick that doctor to the curb, no kidding!

 

[Joandublin]

Hi Sal

It was the first drug that was prescribed for me in 2005 by my rheumatologist even before she diagnosed me with Lupus and was still leaning towards UCTD.

I do find it incredible that your Rheumy wont even answer your doctors communications. Thats just so unprofessional, bad manners and bad for your health. Any chance of changing him?

Sorry you are being treated so badly :hugbetter:

Luv n stuff
Joan:rose:

 

[Shadow girl]

I don't have any "definate or defined" connective tissue syndrome but my Rheumy put me on Plaquenil anyway, and he told my GP she can prescribe it as I am discharged from his clinic until/if I have additional symptons. Its made a huge difference to me. I can sit on the floor with my daughter and get up again afterwards. Its fantastic. Do push for it - and encourage your GP she/he can prescribe it.

Good luck.

Wendy

 

[Salopsally]

Thanks everyone,
That sounds good Wendy. I know what you mean about sitting on the floor. I used to always do that but havnt been able to for years now and even low seats are a nightmare to get up from.

To the people that said I should change my Rheumy. Im not keen on the care he is giving me but it seems there are not many left in my area. He did very quickly diagnose me though with Lupus and Fybro. I already ditched the first one a couple of years ago because he caused me to have a major flare by taking me off all medication without tapering it slowly. After being diagnosed with RA for 10 years and under him when I flared he said he had no idea what was wrong with me and sent me home from hospital in agony. Im reluctant to make a fuss with this new one in case I get branded a troublemaker lol.

Hes still not replied and my GP has contacted his office again and again. She checks every day for a reply and said she will contact me as soon as.... Mmmm she laughed when I said have a nice christmas if I dont see you before.

In the meantime my joints are flaring more and more and the fatigue and weakness is increasing.

Thanks for all your advice I am taking notice of it and your positive reports and attitudes give me confidence to continue to push for better care and treatment.

The GP hopes he will say she can prescribe it and then we can see how it goes. If he doesnt say yes she thinks he needs to have a good reason why not.

Hope you are all doing as well as can be expected. I will let you know when I finally get a reply.

Cheers
Sal xx

 

[KarolH]

Sal,

Good luck and yes, please keep us posted. Plaquenil could very well turn out to be your best friend.:wink2::wink2::wink2: