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sammers
08-07-2010, 03:35 PM
Also known by its fancy scientific name 'Hydroxychloroquine'.

I am just looking for stories that anyone is interested in sharing. I just started taking this because my WG hasn't progressed (yet) to a place where I NEED to be more aggressive with it. I have been told that there is a possibility that I could ween off prednisone while taking this, and that the hubby and I can look forward to adding another little one to our family too.

I have gotten the basic warnings from the doc about the digestion issues, but does anyone have anything else to share?

Jack
08-07-2010, 06:03 PM
Since this is not main stream treatment for Wegener's, I do hope you are under the care of a vasculitis specialist at one of the major centers. I would hate to think that someone was experimenting on you without having a great deal of experience with this disease.

Sangye
08-07-2010, 09:46 PM
Ditto to what Jack said. With every word of it underlined.

eileenv
08-08-2010, 03:10 AM
Hi Sammers, i take plaqunil and pred, but i'm still waiting for a conformation of wegs. I haven'y had any real issues with it, what were the side effests you were told off.

pberggren1
08-08-2010, 05:18 AM
I don't even know what Plaquenil is?

jola57
08-08-2010, 08:21 AM
Sammers, I took paquenil at the bery beginning before being diagnosed with wegs, as soon as I was diagnosed I was told to stop plaquenil as it did not have any significant effect on wegs unless there is new evidence I don't think it is going to be very helpful

JanW
08-08-2010, 09:52 AM
Ditto to what everyone else said. In mild to moderate cases of wegs, imuran, cellcept or methotrexate are standard of care in addition to a (shorter) course of pred. What you have been prescribed is mainly for tough cases of lupus & RA. The only other thing I know about it is that you need to have a special eye exam because of potential damage.

sammers
08-08-2010, 11:03 AM
Thanks everyone for the concern and the good wishes... here is the deal because I have such a (what has been called) mild case of WG we are opting for plaquenil at this time for one major reason, this tme next year my husband and I would like to be expecting our second child. Although my doc is not a WG 'specialist', as there are none in the PHX area, she has had a number of WG patients. I do not feel as though I am being experimented on; she has been quite clear with me about staying on top of this disease and her plans on getting agressive as soon as the need be. We are paying close attention to all of my organs, including my eyes, and doing blood work often. I cannot express enough how much I recognize that I am lucky to be a woman my age with WG diagnosed so soon. All the tests so far have shown that the disease has not moved into any pary of my body besides how it has manifested in my sinuses... and that seems to be under controll lately, as I have gone from sinus infection every 4-6 weeks to just one in the last five months.

The truth is, I spent 6 weeks thinking I was going to have to start cytoxan treatments and they were the hardest 6 weeks I have faced. The impact a treatment like that will have on my body, my family, my soul, and my job were just too much for me right now. I feel that I am in a place wher I can take the risk of putting this aggressive treatment off for the time being. The goal of me on plaquenil is simple: keeping the WGs 'at bay' as long as possible, so that I can be a great mom to my little one and maybe add another to our family before I turn 39. After that, I do expect to get agressive with treatment and I will be ready.

Sean48
08-08-2010, 11:12 AM
i took plaquenil a long time ago for my RA.I can't quite remember why...... I dont think its that much of an aggressive drug. I took it every day for a long time but didn't need to have blood tests to check my liver. Is it a drug for inflamation?

elephant
08-08-2010, 11:29 AM
Sammers that is great no sinus infection for 6 months, I still get them like you said 4-6 wks. Trying to get to the bottom of it. Do you have ear or eye involvement?

Lola
08-08-2010, 01:11 PM
Sammers,

At the risk of causing an outcry, I will say that I was prescribed Plaquenil for my undiagnosed autoimmune disorder in 1999. At the time I was fatigued and had extreme pain in my feet. I did not have any other signs/symptoms of Wegs, and the thought was that I had a connective tissue disorder of some kind, most likely lupus. In fact, it was Wegs. i remember having so much foot pain that I could barely stumble to my car after work. After 6 months of Plaquenil therapy, my foot pain disappeared and stayed gone until my latest flare in 09/09. I was effectively in remission, and stayed so until 2004 when the Plaquenil was no longer working, and I sought more answers. It was at that time that Wegs was diagnosed.

It was most likely a coinicidence, but it could be argued that I achieved remission of a very mild case of Wegs while taking Plaquenil. At any rate, I was in remission from 1999 to 2004.

jola57
08-08-2010, 02:14 PM
I was thought to have polymialgia rheumatica when I was prescribed Plaquenil, Lola, did you take any other medication?

sammers
08-08-2010, 02:45 PM
I cant say that i have ear or eye issues... once last year I did get an ear infection, but that was the first and the only one so far. I am really lucky in that my ENT trusts my judgment and all I have to do is give him a call when I feel like a sinus infection is coming on and he will send a perscription to my pharm. If i feel like I could use his assitance in 'cleaning out' my nose then I can usualy see him within a few days.

I use a sinus rince at least twice a day sometmes.... often three times... morning, when I get home after school (Im a teacher) and before bed usualy during a shower at the end of the day. This and i use an oitment twice a day, some heavy duty antibiotic that helps with the dryness. Since I started this the infections have really tapered off.

sammers
08-08-2010, 02:47 PM
thanks Lola... keep your fingers crossed that I get to follow your pain free footsteps!!

sammers
08-08-2010, 02:52 PM
I cant say 'yes' that it is for inflamation, as non of tha paperwork descriptions say this... My doc hopes though that it will have a positive impact on me and help keep any inflamation to a minamal.

Jack
08-08-2010, 06:17 PM
Are you taking Bactrim (Co-Trimoxazole)? This will not only keep the sinus infections in check, but it has also been shown to help control Wegener's when it is not too active. It sounds like a drug you should consider, perhaps in addition to Plaquenil.

elephant
08-08-2010, 10:42 PM
Sammers ,what kind of ointment are you putting in your nose? I really need to let my ENT know this. I would love to try it!

jeriorleans
08-09-2010, 12:15 PM
A.J. was prescribed Plaquenil and told by his first doctor that he would be on it forever. When we got to Dr. Vogler in Atlanta the first thing he asked is "why is he on Plaquenil" and discontinued it immediatley. I did massive research on Plaquenil and Wegener's and could never find any research showing that it was the appropriate treatment. Needless to say... we don't see that doctor anymore.

jola57
08-09-2010, 01:27 PM
Exactly my point, glad that Dr. Vogler threw it out. We take enough meds without taking needless pills.

JanW
08-09-2010, 11:11 PM
What researchers seem to be proving now is that 'maintenance' medication may have less of an effective on remaining in remission, or warding off more serious complications in the future. So, that having been said, if your case of WG is indeed not very serious and you are trying to preserve your fertility, you may not need to be on anything at all (my doc has had a patient like this for going on 12 years), and your case may just bear watchful waiting until such time as it is bad enough to treat. However, what you're getting on now is simply not a proven WG therapy, whether or not it is helping with your symptoms, whether they go away is probably more likely to be random. I don't know enough about the drug to say whether or not it's benign, but assuming it isn't, I hope your doctor has explained why she thinks this medicine works for WG -- no matter how mild the case -- when there isn't research out there to support this.

For what it's worth, I didn't receive the standard of care at dx (which is pred + immunosuppressant; I only take an immunosuppressant) and my doctor explained to me thoroughly the reasoning behind not getting on the pred, as well as how quickly he thought the immunosuppressant would work). We went to bi-monthly monitoring to make sure that my bloods were trending in the right direction and it worked out for me. One of the things that the researchers stressed at the symposium is that if a doctor cannot explain, or isn't willing to explain to you, in minute detail, exactly what evidence he has that a treatment is effective, you should be concerned. And for the typical non-WG specialist the answer can't be "I've seen this work in my patients" because he won't have a good enough sample.

I wish you luck; my WG was undiagnosed for five years and it was at a sufficiently low level that I didn't suffer irreversible effects.

Sangye
08-09-2010, 11:36 PM
Ditto what JanW said-- very well put. :)

Sangye
08-09-2010, 11:40 PM
And also-- plaquenil and other anti-malarial drugs are quite hard on the liver. That's bad enough, but if your liver became stressed or damaged from it, you might become unable to use a Wegs drug like mtx or imuran if you need it someday. Don't take drugs like Tylenol if you're on plaquenil, since Tylenol is hepatotoxic (toxic to the liver).

JanW
08-09-2010, 11:45 PM
And the chances that your doctor may want to start you on a drug like mtx for your WG are not insignificant, after you've had your second child. It's very commonly used, for people who haven't needed to be on rtx or ctx.

mishb
10-17-2011, 08:47 PM
I had a rheumatology appointment today and got some surprising news.
As per a previous post, I have been diagnosed with WG and also MCTD (Mixed Connective Tissue Disease) and RA.
I haven't seen my rheumy for 3 months but still have had bloods done every 3 weeks ..... basically since day 1.

Well, we all know how many blood test we all have and as I said, got some surprising news.

Every single blood test I have had has had Positive ANCA, Negative ANA, high CRP, high ESR and very low Vitamin D.

Apparently the blood test I had last week shows Negative ANCA, Positive ANA, high CRP, high ESR and low Vitamin D.

The ANCA and ANA have switched around, and now they are at a loss as to which AI and vasculitis condition I really have.
Could the pathology have got the test wrong, apparently not, they did it 3 times.
My B cells that have been doing a lovely little dance for over a year, are now quiet and my T cells have started saying look at me, look at me, I can dance around too. :flapper:

My rheumy wants to start me on Plaquenil because according to research it can decrease joint pain nearly over night.
First I need to have an appointment with an Optometrist to check whether my eyes are okay because plaquenil can cause significant eye damage even blindness if your eyes are already compromised. This may put plaquenil out for me because I also have scleritis.

We have up'd the MTX again and I remain on 5mg of pred. Joint pain came back when I got down to 5mg but not as bad as before diagnosis. This is the reasonfor the plaquenil.

So here I go again, ENT is still saying WG because of the nose bleeds and the crusting that still continues, Rhuemy is now saying Lupus, RA or some other AI disease.
She actually said, if I had one more symptom they could definately put a name to it (but wouldn't tell me what symptom) but since I don't, she is going to keep me on the outside of the little labelled box of symptoms and class me as an individual......Yep, I don't mind that one.

An AFL footballer in Melbourne once sang a song ..... I'm an individual, you can't fool me. I'm a genuine original, you can't fool me :thumbsup:

Yes, my friends, that is going to be me .... a genuine original

(sorry this has been so long, I'm at a loss as to what my body is doing now) :unsure:

pberggren1
10-18-2011, 12:27 AM
This must be so confusing and frustrating and scary Michelle not knowing what is really going on.

Sangye
10-18-2011, 04:08 AM
I had to laugh a little at your doctors asking for just one more symptom. For Pete's sake, they already have a boatload!

I do hope they figure it out soon, Michelle. Or at least that some treatment relieves your symptoms.

Al
10-18-2011, 06:04 AM
So here I go again, ENT is still saying WG because of the nose bleeds and the crusting that still continues, Rhuemy is now saying Lupus, RA or some other AI disease.
She actually said, if I had one more symptom they could definately put a name to it (but wouldn't tell me what symptom) but since I don't, she is going to keep me on the outside of the little labelled box of symptoms and class me as an individual......Yep, I don't mind that one.

An AFL footballer in Melbourne once sang a song ..... I'm an individual, you can't fool me. I'm a genuine original, you can't fool me :thumbsup:

Yes, my friends, that is going to be me .... a genuine original.


This is another knee-slapper, Michelle--thanks for lightening up my day: "Please, just one more symptom...?"

Well, you've gotta be you, don't you know. But here's the thing about diganoses. No two people have exactly the same disease, regardless of the commonality of words. Not even two viral infections are identical, and immune systems are as unique as brains, or more so. And even this leaves out context, which is, of course, vastly different for everyone. So why do we want a diagnosis? Merely because categorizing something allows it to be associated with a treatment protocol. But therapeutic regiments are, at best, guesses for general classes of disease, and cannot, in any scientific sense, be tailored to the individual. That is more of an art, and doctors tend to favor science (and statistics) over art and individuality. (In the general case of autoimmune diseases, the best treatment plan we know of amounts to triage, since no one knows how to effect a "cure".) On the other hand, you can make a case for just being yourself, with all that entails, being very high art indeed!

Al

KimH
10-18-2011, 06:46 AM
Plaquenil was a med that my daughter took for her Lupus.

elephant
10-18-2011, 11:02 AM
Hope Plaquenil work for you and you will be painfree tomorrow! Good luck on the diangosis mystery!

mishb
10-18-2011, 12:13 PM
Thanks Guys and Ladies

I will always just be me :wink1:

Unfortunately they have to put me into a little box that has the correct tag on it because in Australia we have what is called the PBS (Pharmaceutical Benefits Scheme) not sure if any of you have this.
The PBS is a Scheme whereby the Government funds (or subsidizes for a better word) the costs of thousands of different types of prescription drugs and thus we the consumer/purchaser don't have to pay a fortune for them.
In order for me to get the subsidized medication they need to put a tag on me. So therefore, they are still going with Wegener's but they are certain that there is more to it.
As my Rheumy said, it doesn't really matter what tag they give it as long as the hospital records show all of the other possibilities as well.

I have been reading on this wonderful site since August/Sept 2010 and as far as I'm concerned all symptoms still point to WG. I wish she would have told me what the other symptom was that she was looking for, but I do understand that they can't do that incase we make it up or start feeling like we have that symptom and we really don't.

Don't get me wrong, as soon as I started taking the pred in April of this year, my symptoms became very manageable to the point where I just feel like I have the flu (the body aches and the nose is blocked) so I'm not complaining and I cry for those of you on here that have had it way harder for so much longer, or for that matter in such a short time.

As far as the Plaquenil is concerned, I still need to make an appointment with the Optometrist and then go back to see Rheumatology in December. I see ENT and Oncology next week and the week after so I will see what their thoughts are ......again.

Anyway, I'm here to stay with WG, RA, SLE and whatever else they want to throw at me ......your all not getting rid of me that easy :tongue1: ......bring it on (only teasing)

Until then, I will always ....

Trudy
10-19-2011, 02:25 PM
My rheumy wants to start me on Plaquenil because according to research it can decrease joint pain nearly over night.

We have up'd the MTX again and I remain on 5mg of pred. Joint pain came back when I got down to 5mg but not as bad as before diagnosis. This is the reasonfor the plaquenil.

Hi Michele, I have taken Plaquinil for 6 years. If you do end up taking it, please do not be discouraged if it does not work overnight. In most cases it can take 2 weeks to 2 months to work. I think it works by building up in your system. I do know it helps to keep your body from flaring (for Sle). My doctor let me go off it twice at my request and then after flaring both times he suggested we don't try that again. I do have eye exams every 6 months. I also take 50,000 IU of vitamin D by prescription every Friday, and come Thursday my blood test is always low again.

I take Imuran and 20mg Prednisone right now. When I lower the pred symptoms get worse. I haven't taken Imuran that long, so hopefully I can try reducing the pred again soon. Mostly it is a guessing game of finding the right combination for each of us. I do take Tramadol for pain. I didn't think it did anything but I tried tapering it down only to increase it again.

As far as autoimmune diseases varying and overlapping, I am in the same place as you. My ANA is never positive, but I have Lupus. My ANCA (both MPO and PR3) is positive and I sinus, lung, and kidney involvement of WG. Conveniently the same medications are used in both.

Hope they quickly find what will help you! If you are prescribed the Plaquinil and want tips on taking it, feel free to PM me.

Trudy

mishb
10-19-2011, 07:45 PM
Thanks Trudy, greatly appreciated.

Both ANCA MPO and PR3 have always been positibe until this time. ANA has always been negative until this time. Just strange.

I have now read up on visited a lupus forum and some of the symptoms are exactly me. I have never had a rash though and I have sinus/crusting, ear and eyes, and I don't think that is something in SLE.
I see hematology/oncology in a few weeks so will see what they say because ENT are still just saying you wouldn't have the crusting if you didn't have WG

I didn't think plaquenil was a miracle worker overnight or everyone would be taking it. I think my rheumy was just being nice.
One step at a time.....we will see what the eye specialist says first, but I'm glad you didn't have any adverse side affects.

Thanks again

Sangye
10-20-2011, 01:51 AM
I also take 50,000 IU of vitamin D by prescription every Friday, and come Thursday my blood test is always low again.


Trudy
That's because it's almost impossible to absorb that much vitamin D all at once regardless of the quality. Add to that the fact that prescription vitamin D is in a poorly absorbable form....

There are many other nutrients and factors involved in vitamin D absorption and use. The medical approach of slamming the body with a mega-dose of poorly absorbable D once a week is just insane.