One word: plaquenil

[cd3girls]

Hi folks........ it's been ages since I last posted to this site. But now is the time for me to speak up I think

My apologies if this topic has already been addressed. I have been away sooooo long, and have not kept up with the website, so I may have missed this topic.

In my continuous journey to get help, the latest diagnosis I got from my last DR is lupus. The latest biopsy showed something other than "normal" skin cells (no surprise there). It was not a definitive lab result, therefore the default diagnonsis was lupus. However, the positive to that result is that the DR prescribed an RX for plaquenil. It's an anti-malaria medication - often prescribed for lupus. The interesting factor, however, is that it is also an anti-parasitic medication. hmmmmmm

I started this only 4 days ago and the results have been AMAZING! I think that the quanine in the med's is attacking Morgs, and I have seen significant improvement in the lesions. I continue to use DSP, but the combo of DSP and the RX seems to be working very effectively.

Has anyone else used this med? Any results or comments?? I am very pleased at this point, but would welcome others' feedback.

I wish you all the best........you continue to be in my thoughts and prayers.
cd3girls

[ladycolorado]

i have not, but i have drunk tonic water which contains quinine, an old timey cure for malaria in old days was to drink tonic water. but this just weak in it i bet, not this med and had some marginal positive results from it. interesting post, (LC).

[carla]

Hi 3cdgirls .Good to have you back. I am being tested for Lupus too. I hope I get same meds .Except I know I haven`t got it. I have no depression,(only once a month.) and I love sunshine,(english sunshine No heat involved)They are the two main symtoms. I don`t get my results for 2 months .Did you have to pee in the dark to be tested?? love carla xxxxKeep in touch xx

[cd3girls]

Hey Carla!

I am not convinced that I have lupus either (my symptoms are the same as I have read here for morg's)......... but I was certainly willing to accept the diagnosis in order to be able to try this particular medicine - given that it's an anti-parisitic.

As far as the results - all I can say is WOW! If the DR thinks you have lupus (even if you don't think so), get yourself on this med. I am very anxious to hear how you make out. the results have been much better than I had hoped for. My DR had even told me to "not expect miracles" - that it would take 4 to 8 weeks to have any effect (which would be typical for lupus, but clearly is kicking the sh*t out of whatever we have). Its been less than a week and NOTHING else has had this much of an effect for me (inc Bubba's steps and the DSP). While those have been very effective at treating my skin topically and keeping the syptoms somewhat under control, its clear that this RX is attacking from the inside. I will spare the gory details, but trust me.......its clear that its working and killing this stuff. And since we all know its systemic in nature, it would be a relief if this can help by actually killing this stuff, and not just treating the symptoms.

And no, I did not have to pee in the dark Still scratching my head by what you meant with that ??? but thought it was very funny.

[carla]

Hi 3cdgirls .You got me hoping I got Lupus now. I want some of that !!!!
Can you buy on-line???
When i had to give a sample for lupus test the bottle could not be exposed to any light. Something to do with reaction .
love carla x xx keep in touch

[sally]

Wow..that is interesting and I'm so happy to hear something kicking the crap out of those things!!!! I had a blood test for Lupus almost 4 wks ago and haven't heard anything yet. How long does it take for the blood tests results to come back?

[cd3girls]

Hello again.

Here is what my DR told me...... there are two kinds of lupus: discoid (skin only) and systemic - which is more serious. I had the blood and urine tests run, and those did not show positive for lupus - which indicates I do not have the systemic kind. HOWEVER, the DR also took biopsies in the affected areas. The pathology reports from those (which took about 2 weeks for that and the blood work to be processed) came back positive. The DR told me that the results of the pathology reports are more accurate/definitive than the blood tests when it's discoid lupus. Sooooo, bottom line - if the blood work looks ok (like mine) - it may take a biopsy to diagnosis. That was not fun (especially since they had to do directly in the area affected) - and the stitches were a pain. But well worth it to get the diagnosis right.

[sally]

Thanks cd3girls!!!

I wish I would hear something either way...I only had a blood test and MRI and still have not heard anything... like I said it's been near 4 weeks. I think I may give my doctor a call to see whats up.

Sally

[JCNME]

Hey cd3 -

what's the latest? is the Plaquenil still working for you? Haven't I read that it can have some bad side effects? I can't remember what

Hope you're still doing well!

JCnMe

[EvDownJr]

Good point.

One thing I have to give my first mediocre local Derm. credit for is he had tested me for Lupus and Lymphoma, before he pronounced his first default misdiagnoses of trichlotomania (compulsive hair pulling). I would hope that some folks do test positive for a defined niche. Not that anyone would want to test positive for Lupus. However, there is a whole tested battery of immunomodulatory drugs that can address that.

Plaquenil is an interesting medication. It is right to say it was used @ 800 mgs daily originally as a treatment for malaria. Currently it used as mainstay for treating SLE and discoid Lupus. My current Derm. w/drew this. However it may not only help for Lupus or protozoans. Taking 400 mg of Plaquenil a week is a mainstay treatment of a condition I am investigating for myself called Porphyria Cutaneous Tarda, sorry may have misspelled. Now this condition is an enzyme abnormality that is more prevalent in certain bloodlines. It can be induced from lifelong dormancy by excessive exposure to sun, alcohol, ethanol (why are so many nurses getting sick with Morgellons), hydrocarbons (aerosol sprays), pesticides, low calorie diets. Plaquenil increases the soluability of these aggregates to avoid damaging the skin and other organs.

Don't think this quite explains Morgellons. However, porphyria remains a condition one may want to look into, along with Lupus, Lymphoma, Glomerulonephritis if experiencing Morgellons symptoms. Still waiting for test results myself.

May have said before that I have had some extensive dental work and interesting surgeries. Perhaps certain substances induced in the body do impair its functioning for some people and may induce opportunistic toxicities and infections like various strains of agrobacteria. This is documented many times in mainstream medical journals for physicians who do maintain some intellectual curiosity of their ailing patients.

Sorry about my poor spelling and grammar. I went see a new dermatologist recommended to me today at a large hospital in NYC. He was a complete stereotypical larded *rse who hardly looked at my condition more than four minutes and type-casted me with a somatic disorder along with compulsive picking. I demanded my $425 back for my initial consultation fee. At least I got it. Hate to say I got a similar reaction from a very famous cancer hospital in NYC a few months ago. For someone who continues to attempt to procure treatment from traditional medicine along with research, and Lyme methodologies, and complimentary medicine, I am still VERY DISAPPOINTED with some of the responses of certain respected physicians in large cities. Please, read your medical journals My friend at *** Medical Centre, you may be practising for forty years, however, mind you the conditions medicine was treating 20, 40, 100 years ago have changed with the environment and technology. Had to have a few brewskies for the train ride home to calm my nerves: Tomorrow it's back to my quiet meek self. Sorry if I am a little unusually crass, but everyone has his breaking point.

Evan