[MelanieBlue]

I am highly allergic to sulfa drugs. I break out in the most beautiful and fantastic body rash ever witnessed by my GP.

My rheumy is running my labs again, to see if any come back positive again (after all magically turned negative last time). My symptoms have not gotten better and three other docs can't find anything to explain my pain.

Sooo....he mentioned plaquenil again. Then, he asked about my allergies. I mentioned my fabulous allergy to sulfa, levaquin and vicodin. He then said that he couldn't give me plaquenil due to the sulfa allergy. He would need to give me quinine instead - and it would be incredibly difficult to find.

No, aren't lots of lupus patients allergic to sulfa? Don't most take Plquenil? I am most perplexed by this. Has anyone heard of this?

This may lead me to a new rheumy......

thanks!

 

[Clare.T]

Hello Melanie

Plaquenil isn't a 'sulfa' drug which means a certain sort of antibiotic, the sulfonamides. Plenty of people who are allergic to those sulfa drugs take Plaquenil without any problem.
This sounds all very odd to me! Quinine? I never heard of anybody taking Quinine for lupus. One option to Plaquenil is Chloroquine and another is called Mepacrine in the UK & Quinacrine in the USA which is an alternative to the first two. Perhaps that what he meant?
It is available from compounding pharmacies in the USA and from hospital pharmacies in the UK or from Boots if you can get your GP to prescribe it. Does this rheumy treat lots of lupus patients? Hope some help

Cheers
Clare

 

[MelanieBlue]

Truthfully, I don't know how many lupus patients he treats. I have gotten two recs from other lupus patients - one from here and another "in real life". He very clearly said quinine - no doubt. He made a big deal about how hard it would be to find a pharmacy that still carried it. It seems odd to me too. It just seems the most odd because lots of lupus patients are allergic to sulfa and most lupus patients take plaquenil. I don't know??

Before I take it, if it comes to that, I will definitely see another doctor - if he indeed meant exactly what he said. I may see another one anyway, if I can't get to the bottom of what's happening here soon....

thanks for your response!

 

[Clare.T]

Hello again Melanie
I would definitely be looking for another opinion. I couldn't find any mention of quinine being used these days for lupus, not for 60 years. It's used mainly for leg cramps that I can see so what's the difficulty obtaining it.
I noticed that a couple of chemical names for quinine were quinine sulfate and quinine bi- or was it di- sulfate. I can't explain the chemistry of these medicines because I don't understand the explanations :lol:

Even those medicines like celebrex which warn that they shouldn't be taken by people with lupus because they have a little bit in them, in fact are generally well tolerated even by those who can't take the sulfonamide antibiotics. The same goes for some of the diuretic medicines. Cross sensitivity seems to be unusual.

It's all very odd. I doubt if this doctor knows something about Plaquenil that none of the lupus experts knows. Surely we would have heard all about it if it was true !

Good Luck
Clare

 

[Clare.T]

I just remembered that tonic water, which has quinine in it, is supposed to help with the leg cramps and one time the question came up of drinking tonic water to get enough quinine to treat lupus. You would have to drink so much tonic water that lupus would be the least of your problems !:hehe:

Clare

 

[cjmclaughlin]

I just wanted to let you know that I am highly allergic to sulfa drugs and have been on plaquenil for almost 8 years with no problems at all. I did accidentally take a sulfa drug about 5 years ago and still had the horrible reaction so know I'm still allergic even while being on plaquenil. I also take meloxicam which is in the same family as celebrex and have no problem. I would definitely look for another opinion as plaquenil was a lifesave when I first was diagnosed and it has relatively low side effects.

 

[onetay]

Melanie,
I would put a call into the gp and the pharmacy to see what they say also. Checking with other professionals is advised when you have questions about what one has told you. If you find what you were told was not totally true talk to the doctor that told you this and let them know what you found out. There maybe other reasons than what they told you. Let us know what you find out if you decide to go this way.

 

[nicky00]

Im going to make a guess he meant Quinacrine but perhaps said quinine.

The reason why I say this is because I have been on Quinacrine (Mepacrine) and a chemist had to normally order it in as they dont stock it. Thats why he might have meant its hard to get hold of it. Ive also heard other say they could only get it from a hospital pharmacy , latter not my experience though.

Everytime I go to the pharmacy I have to wait a while.

Either way I hope the mystery unfolds soon.

Nicky