Hi.
I have a question for Mrs D:
As you know me from other threads, I have leucoclastic vasculitis. The rheumotolagist has started me on Plaquinil in September or so. I had a couple of attacks with arthalgia and the burning neuropathy pain has just been getting worse and worse. The doctor has been trying to find other autoimmune conditions as well. Have had so many tests. She prescribed Methatrexate and prednisone, but we put in on hold for now, waiting for a sure diagnosis. But she said, after I have had the tests for neuropathy and/or nerve biopsy, I can go ahead with the methatrexate and prednisone.

I have the feeling that the reason for the neuropathy might be the vasculitis, because it is burning everywhere.
I also read your post earlier that Plaquinil also was on the list of meds making neuropathy worse? Correct?

Yes, Plaquenil has been mentioned in papers as causing neuropathy. The only way to know is to discontinue it for a while.

On this site are side effects listed that have been reported to
the FDA.
http://www.drugcite.com/?q=plaquenil

Click on "neurological" and it will open up with details.

There are not many reports for this potentially toxic drug
because it is only used in small numbers of patients. It is not common therefore.

I had a horrible lupus reaction and bradykinin overload from a
long well known blood pressure drug (lisinopril) after 10 yrs of taking it. Even common drugs can cause terrible things in some people! And I am still recovering from this!

"Discontinuing it for a while" would mean at least several months as the half life is pretty long at about 30-60 days.

I personally have never heard anyone report neuropathy from Plaquenil and it's use is wide spread among Sjogren's patients (probably 75% of members on our Sjogren's forum)...this group though, is a very small % of the general population.

Did you have any of these symptoms 'before' starting the Plaquenil or shortly after? Just as it takes a long time to get out of the system, it also takes a long time to build up. Most (use for autoimmune disease) don't get benefit from it for 4-6 months. The percentages of side-effects is pretty low (even in the link)...as for why it's widely used in Sjogren's treatment. Keep in mind, dosing is different for malaria then it is for RA, Lupus or Sjogren's (even these AI diseases vary). How much are you taking?

Enbloc
I am taking 200 mg twice daily for leucocytoclastic vasculitis. I have had tests etc for months now to find if there are other autoimmune diseases involved as well. Yes I did have burning neuropathy symptoms for some months before starting Plaquenil, only milder, and I did not realy know what all of this was. I also had some central nervous system symptoms even before that. It has become worse and worse to the point that right now I have numbness in the complete lenght of all extremeties. It is mainly sensory. But I have had some heavyness in arms with the parasthesia.
The neurologist diagnosed me with polyneuropathy. Will have some testing next week.
I was told there was a strong possibility I could have sjogren's due to the strong neuropathy. I have demyelinating brain lesions as in sjogrens. But both blood test and lip biopsy was negative.

I was reading regarding the neuropathy side effects. But I have also in the last 3 days had eyesight symptoms like lightflashes 3 times and blurred vision in left eye visual field. Effects like this from Plaquinil, from what I understand, should not happen before very long term use, So these symptoms, at lease the blurred vision might be due to Lyrica. And I have had some issues with scotomas before. I have a very good opthomologist, will see him tomorrow.
I was also thinking that while we are searching for answers for further diagnosis, and the neuropathy burning is only getting worse, perhaps it is best to stay on that medicine that at least is supposed to alter and/or stop the disease( hwatever it is)
But I got so frustrated and feeling so awful also being on Lyrica which is like walking in and out of anaesthesia
I E mailed my rheumotologist said I want to stop both this meds. She mailed me back, said I can stop the Plaquinil if I want( I think she had said before that the vasculitis is now stable, just to stay on it while further testing going on) I gues she gets tired of me. But she said stay on the Lyrica, and let the neurologist look after it next week.
So I will see. I did stop the Lipitor.
Thanks for your input

Some people are very sensitive to Plaquenil. It is a quinolone, drug after all. Similar in chemistry to the fluorquinolones which have a fluorine atom added to the ring structure.

Plaquenil:
http://en.wikipedia.org/wiki/Hydroxychloroquine

Cipro:
http://en.wikipedia.org/wiki/Ciprofloxacin

Both share the double phenolic rings with some modification
of the side chains.

These drugs are related.

People with scotomas, should be tested for homocysteine.
When homocysteine builds up in the blood from faulty methylation chemistry, it irritates the linings of the blood vessels. This leads to blood clots and blockages. Children with a rare genetic problem called hyperhomocysteinuria, die in their 20's from strokes and heart attacks.

If people have an genetic error in methylation called MTHFR polymorphism (10-30%) in US, then the homocysteine builds up in adulthood leading to vascular damage. B6, MethylB12, and methylfolate are the cofactors to reducing homocysteine, as they convert it to SAMe, which works in the body.
People with circulation problems in the retina, should be tested for elevated homocysteine levels...as that is where it shows up first. This problem if present is readily fixable without toxic drugs.

Another useful treatment is curcumin. It has shown in studies a benefit for endothelial inflammation. A quality version of this has to be used, that has had absorbtion increased. LongVida or Curcugel are examples of enhanced curcumin.

I agree it is difficult when one gets to a certain point, where potentially toxic drugs have to be used. It is a difficult decision and benefits vs risk have to be figured out.

Sensitivities come with ANY drug...Plaquenil included. Even Lisinopril has about the same reported % of neuropathy side-effect as Plaquenil. And Lyrica has more then double the reported % of paresthesia...so it could be your lyrica.

I'm convinced that everyone responds differently, and anything is possible with any medicine. Other medicines or supplements must be taken into account as combos open doors to reactions that may have otherwise not occurred.

The fact that you had neuropathy symptoms before starting the Plaquenil clouds the issue whether it's responsible for the progression...since other meds you take also have the same small potential to cause it. Stopping is always an option to consider and my main point was to make sure you were aware of the half life and that is could take months to see changes (if it was the cause). Of course, it could just be the disease process and not medicine. Hard to tell for sure either way without a few trials. It IS imperative to discuss your vision changes with your ophthalmologist. Although your changes are not typical of how Plaquenil presents in regards to toxicity in the eyes, ANY change needs to be addressed immediately.

**Any changes to or trials with medicines need to be done one at a time...or you won't know which was the culprit and/or helpful.

Keep in mind this about percentages reported...

Those are % of those who reported a problem. Not % of all taking the drug.

It has been estimated that very few doctors report to MedWatch at the FDA... less than 5% or so. So the vast majority of serious reactions don't ever make this list. With a drug like Plaquenil, which is not commonly used, the study pool becomes very small. Doctors know that Plaquenil is potentially toxic, so they don't report. They assume everyone knows this already.
(most Plaquenil Rxs are generic today)

The Lyrica pool however is much larger because Lyrica is used more. More patients means more likely reporting too.
Lyrica however is still on patent, and very popular now. When doctors are told how wonderful it is by salespeople, and then they run into a serious side effect...they are more likely to report it, because it is a "surprise" or not well known.

That is just my take.
Many of the anti-rejection drugs like Prograf also show low
response on DrugCite.

There are patient sites online:
http://www.askapatient.com/viewratin...name=PLAQUENIL
and
http://patientsville.com/drugsatoz.htm#A
(but Plaquenil does not appear on this site at all)

Good points indeed!!

I imagine there are many variables...like those reports when in fact it was something else causing the reaction (another drug or disease process) or that the drug wasn't taken properly. I also think there may be fewer good patient reports in surveys because people don't online to say something good resulted...but they do report negatives...IMO People 'expect' the meds to work, so complain when they don't, and just drive on with their life when they do.

By in large, doctors don't tell patients everything (or much at all in some cases) they should about the drugs they hand out...some like candy. I have had to ASK/INSIST for doctors to sit down and go over drugs I'm taking for interactions, etc...they don't automatically do it. Then I research them online as well.

Plaquenil does have some toxicity potentials...especially (rare) but very serious ones regarding vision. Anyone taking it should have complete eye exams and field of vision screenings every 6 months to 1 year (I do 6 mos). However, Plaquenil is on the lower end of the treatment scale and usually well tolerated compared to other options for managing AI disease (methotrexate, general immune suppression via cellcept and others like it, Rituxin/Rituximab, etc). Tough choices for tough diseases either way you look at it. It all comes down to what you said before...benefit vs risk assessment.

To Mrs. D and enbloch

I hear you both.
I am holding the Plaquinil just now until I have completed the eyeexame with my opthomologist. This doctor has been keeping a very good "eye" on me. He probably saved my life in a sence( which is too long of a story)I went to him when I first had the scotoma, headache and vertigo, so he investigated and found aneurysm and all the other things. This doctor has me go through complete exame with visual field test an all every 6 months.

I tend to think the same way, that all medications have long lists of side effects, and I always read through. Drug companies has to protect their liabilities. I was verbally informed by prescribing physician regarding the serious, but seldom side effects of Plaquinil. ,the eye things being the worst. But I must say, neuropathy was not one of them. That was why I now reacted as I did.
So, I have to brobably weigh the risks versus the benefits, as you said.

And I am aware of the half life, so would be ashame to interupt the effect already obtained.
I am hoping to find the cause of the neuropathy soon. And I do think I have found the right doctor.
( the neuropathy burning and parasthesia is so bad, I was up most of the night last night,and it ended me up in the ER the other day . The parasthesia in arm was so heavy I thought I had a stroke again)

Yes, I will read up on regarding hemocysteine. I can not remember if I had a bloodtest on this. But I do know that my opthomologist said I had a precondition/or early macular degeneration and started me on Aredium vitamins for eyes.

Question:
I have learned there is a connection between scotoma(which is a symptom/warning sign?) , migrane and stroke. because I had it all, and experienced the frightening effects.

So is Hemocysteine the key for routine check for prevention of stroke and othe vascular problems, possibly vasculitis as I have?

It is one thing that will inflame and irritate the linings of the blood vessels.

Vasculitis can also be autoimmune.

more here:
http://www.wisegeek.com/what-is-leuk...m#did-you-know