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karenboss
12-04-2009, 10:00 AM
So I've been on plaquinel since September and am not sure it is the right drug for me, primarily because of the loud ear-ringing, but also I don't see it as all that effective. so far I'd say mildly effective. What is the next possible go-to drugs that dr might recommend? I want to research them before my Jan 5th appointment - no NSAIDs - can't take the constipation.

Major symptoms,(in order of sevarity) joint pain and swelling, open sores on scalp and in mouth, sjorgrens' dry eyes, throat, dry cough, lightheadness, dizzy bouts of severe fatigue

What do you think he'll try next?

magistramarla
12-04-2009, 03:53 PM
Well, Karen
The next step for me was Methotrexate. The doc didn't stop the Plaquenil, either. I'm taking both now.
I'm sure that others will tell you other meds that their docs have prescribed.
Marla

Saysusie
12-06-2009, 05:55 AM
It can take up to 6 months to really see the beneficial effects of Plaquenil. As Marla mentioned, your doctor may prescribe a steroid (Prednisone) or immunosuppressant (Methotrexate) drug to be taken with the Plaquenil.


Peace and Blessings
Namaste
Saysusie

tsk0866
12-26-2009, 01:33 PM
I don't understand why one would need more than one medication to see good results.

I know of a pharmaceutical medication currently used by a handful of doctors in the CA region and is showing significant results. This new medication (non-synthetic) can be used with standard meds. Eventually, the drug dosage are greatly reduced allowing the other to become the dominant med. :huh:

What I found to be of great interest are the ingredients. There are only three, and they effectively put a stop on fibromyalgia, arthritis, and MS as well. :wideeyed:

Unless Lupus sufferers get a hold of this med, they will continue to question the effectiveness or side effects of plaquinel, etc.,etc. This can be avoided, but it seems like there are no other options. I know there is but the Pharma will make it sound like there isn't.

BonusMom
12-26-2009, 01:42 PM
I'm in CA and would love to know what pharmaceutical medication you're speaking of so I can speak with my rheumy about it.

Have you personally taken the "medication" that you are referring to? What other medication(s) are you taking with thhis miracle drug? What AI diseases have you been diagnosed with?

Angel Oliver
12-26-2009, 02:57 PM
HI i also started plaquenil in september and as yet i dont feel any different.Maybe hang on in there with it like me and hopefully a little longer taking it we may feel some difference.I hope so anyway.Let me know what you decide.

Lots of love
Amanda.xx

rob
12-26-2009, 05:14 PM
I don't understand why one would need more than one medication to see good results.

I know of a pharmaceutical medication currently used by a handful of doctors in the CA region and is showing significant results. This new medication (non-synthetic) can be used with standard meds. Eventually, the drug dosage are greatly reduced allowing the other to become the dominant med. :huh:

What I found to be of great interest are the ingredients. There are only three, and they effectively put a stop on fibromyalgia, arthritis, and MS as well. :wideeyed:

Unless Lupus sufferers get a hold of this med, they will continue to question the effectiveness or side effects of plaquinel, etc.,etc. This can be avoided, but it seems like there are no other options. I know there is but the Pharma will make it sound like there isn't.

The product called "Mirac" has been discussed at length here at We Have Lupus. What you are calling a "Pharmaceutical Medication" is nothing of the sort. Mirac is a dietary supplement. There is absolutely NO clinical trial proof that this product has any beneficial effect on Lupus whatsoever.

It's so called miracle ingredients are nothing more than Vitamin C, Quercetin Dihydrate (which I note that the seller of this product didn't even spell right in their own FAQ), and Bromelain.

Quercetin is a flavonoid that does indeed have mild anti-inflammatory properties, and is found in all sorts of common produce from tomatoes to onions. The problem is, Quercetin Dihydrate, the dried form found in these Mirac Pills, is almost completely insoluble in water. This means that 96% of the Quercetin you are taking in these pills is being unused and excreted from the body, leaving only a meager 4% of Mirac's purported main active ingredient in you body, which is a therapeutically insignificant amount. Quercetin in vegetables however, is readily absorbed by the body because it is dissolved in the acids of the vegetable.

Bromelain is an enzyme commonly found in Pineapples, and does have anti-inflammatory properties, but, like the Quercetin, is only found in therapeutically insignificant amounts in the product Mirac.

The other touted "patented" ingredients in this supplement are simply the polymerized gel components that makes up the capsule itself. The same stuff every other pill capsule is made of.

So, eat your vegetables, drink some pineapple juice, and take some Vitamin C, and you have your "miracle" cure. Of course it is worth mentioning that Mirac costs $75.00 per month, and the manufacturer recommends you take it for at least one year. You can do the math, veggies, pineapple, and Vitamin C are not going to cost a person $75 dollars a month. It's also worth noting that the medical board of The Lupus Fundation of America found absolutely no proof of any beneficial effects from this product, and very publically REFUSED to carry the manufacturers advertisements in any of their literature. This stuff is snake oil, and nothing more.

Rob

BonusMom
12-26-2009, 07:02 PM
I don't understand why one would need more than one medication to see good results.

I know of a pharmaceutical medication currently used by a handful of doctors in the CA region and is showing significant results. This new medication (non-synthetic) can be used with standard meds. Eventually, the drug dosage are greatly reduced allowing the other to become the dominant med. :huh:

What I found to be of great interest are the ingredients. There are only three, and they effectively put a stop on fibromyalgia, arthritis, and MS as well. :wideeyed:

Unless Lupus sufferers get a hold of this med, they will continue to question the effectiveness or side effects of plaquinel, etc.,etc. This can be avoided, but it seems like there are no other options. I know there is but the Pharma will make it sound like there isn't.

I would encourage all WHL members to thoroughly research ANY person/company thoroughly prior to investing any monies in treatment not approved by the FDA.

A dietary supplement is not a medication. For you to claim it is, OP, is misleading and false advertising.

Persons with SLE and other autoimmune disorders are known to experience periodic/spontaneous remissions. AI diseases do not go away and cannot be "cured". Even the website of the product that the OP is promoting states "These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease."

A website that compiles information/data on dubious alternative therapies or practitioners is www.quackwatch.com. It's a good starting point, though not all inclusive to all of the scams that are out there.

Simply my opinion.

scubagramplit
12-26-2009, 07:28 PM
I would encourage all WHL members to thoroughly research ANY person/company thoroughly prior to investing any monies in treatment not approved by the FDA.

A dietary supplement is not a medication. For you to claim it is, OP, is misleading and false advertising.

Persons with SLE and other autoimmune disorders are known to experience periodic/spontaneous remissions. AI diseases do not go away and cannot be "cured". Even the website of the product that the OP is promoting states "These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease."

A website that compiles information/data on dubious alternative therapies or practitioners is www.quackwatch.com. It's a good starting point, though not all inclusive to all of the scams that are out there.

Simply my opinion.

good info and research Rob and Bonusmom. I must also say as far as the plaquinel that I have been taking it for about a year and I have never noticed any difference, but that doesn't mean that it is not doing anything for me, who knows, I could be in a lot worse shape it I were not on it. I like Robs idea, eat your vegies and fruits and cut out the processed stuff.

karenboss
12-30-2009, 03:14 PM
I am actually feeling much better. Since the week after thanksgiving I haven't had any joint issues to speak of. So thanks all for the advise and feed back. I am still annoyed at the ear ringing but see my dr next Tu so will ask about that then.

Too bad TSK0866 got his/her advertisment stuck in my thread. Very disrespectful to all of us.

Patient beware....

BonusMom
12-30-2009, 05:21 PM
I am actually feeling much better. Since the week after thanksgiving I haven't had any joint issues to speak of. So thanks all for the advise and feed back. I am still annoyed at the ear ringing but see my dr next Tu so will ask about that then.

Too bad TSK0866 got his/her advertisment stuck in my thread. Very disrespectful to all of us.

Patient beware....

So glad that you're feeling better! Yes, I would ask the doc about the ringing in the ears. Please let us know what he says :)

rob
12-30-2009, 07:52 PM
I am actually feeling much better. Since the week after thanksgiving I haven't had any joint issues to speak of. So thanks all for the advise and feed back. I am still annoyed at the ear ringing but see my dr next Tu so will ask about that then.

Too bad TSK0866 got his/her advertisment stuck in my thread. Very disrespectful to all of us.

Patient beware....

FYI-tsk0866 has been given a warning/infraction for spamming.

Rob

tsk0866
12-30-2009, 10:54 PM
There is nothing disrespectful here. Sounds like we have a "Buyer Beware" virus on the attack. Perhaps, it's time that someone have a talk with Dr Dawn Hnat of Newport Beach, CA who uses Mirac. :skeptical:

All I see here is a mentality of discrediting a useful natural medication (pharmaceutically graded supplement). And to call it "fish oil" shows how shallow ones' mind is. Perhaps, Rob needs more supporting documents.:hissyfit:

So here's my suggestion. Call Mr REDACTED or e-mail him at REDACTED and find out for yourselves whether or not it works. :huh:

I welcome all your responses. Happy New Year!:laugh:

BonusMom
12-30-2009, 11:17 PM
There is nothing disrespectful here. Sounds like we have a "Buyer Beware" virus on the attack. Perhaps, it's time that someone have a talk with Dr Dawn Hnat of Newport Beach, CA who uses Mirac. :skeptical:

All I see here is a mentality of discrediting a useful natural medication (pharmaceutically graded supplement). And to call it "fish oil" shows how shallow ones' mind is. Perhaps, Rob needs more supporting documents.:hissyfit:

So here's my suggestion. Call Mr REDACTED or e-mail him at REDACTED and find out for yourselves whether or not it works. :huh:

I welcome all your responses. Happy New Year!:laugh:

Not worth my dime, er, dollar, to call Mr. Ziegler, but it may be worth it to contact the CA Department of Public Health and ask them to investigate the claims being made. If the "pharmaceutical medication" is as described by the OP, then I will certainly post that information on the forum so that everyone will know if the product is legit and is the SLE miracle cure as described by the OP.

Happy New Year to you too!

rob
12-31-2009, 07:21 AM
There is nothing disrespectful here. Sounds like we have a "Buyer Beware" virus on the attack. Perhaps, it's time that someone have a talk with Dr Dawn Hnat of Newport Beach, CA who uses Mirac. :skeptical:

All I see here is a mentality of discrediting a useful natural medication (pharmaceutically graded supplement). And to call it "fish oil" shows how shallow ones' mind is. Perhaps, Rob needs more supporting documents.:hissyfit:

So here's my suggestion. Call Mr REDACTED or e-mail him at REDACTED and find out for yourselves whether or not it works. :huh:

I welcome all your responses. Happy New Year!:laugh:

tsk0866,

You have already recieved a warning for spamming. Any further violations of the Membership Agreement, be they in the form of spam, thread hijacking, or personal insults, will result in you being permanently banned from WHL.

Rob
Moderator

adsimcik
01-02-2010, 11:24 AM
Unfortunately, we can never know that the plaquenil is working, only when it isn't. Its main goal is to moderate (ie. tone down) the immune response. Although lupus is quite different for everyone, in general, it can best be described as hypersensitivity, or an overreaction of the immune system, resulting in inflammation, etc. (I saw a good example of this several years ago - I worked outside at a retail nursery, and would scratch my arms moving plants, and these minor injuries would get red and inflamed. I equate it to the immune system ordering in a whole division for a minor skirmish that only needed a four man squad...) Even on plaquenil, our immune systems can overreact and cause flares, but hopefully, the flares will be fewer and far between and less severe when they do occur. From experience, I know that plaquenil doesn't work as well as 80 mg of prednisone (that was a great month or so - lost weight, felt normal for the first time in 15+ years, had the energy to meet and court my wife), or even as well as low dose doxycycline, but I also know it's better than nothing. As for the ringing in your ears, I doubt that's a side effect of the plaquenil - I've had ringing in my ears for years (long before I started plaquenil last March) and, although it may be a result of my immune system attacking my inner ear (which would also explain the occasional vertigo), I attribute it to too much loud music (ten rows back from the speakers at an Audio Adrenaline/DC Talk concert is fun, but not really a good thing....). Stick with the plaquenil - it has minimal side effects, and it seems to provide at least a minor benefit. (Just be sure to get your plaquenil toxicity screenings from your eye doctor regularly!)

pandagirl
01-10-2010, 06:34 PM
I have a Plaq question..I have been on it for about 3 months and have had several bad bouts of heartburn/indigestion...not sure if it's the Lup or the med's???

rob
01-10-2010, 07:56 PM
I've had bad heartburn/indigestion both on, and off plaq. When I've stopped taking it for awhile, then start again, I don't notice any difference in the frequency of my indigestion. Of course, we're all different, so it's hard to say how the plaq affects one person to the next.

Rob

BonusMom
01-10-2010, 08:21 PM
I have had horrible acid reflux since my GI symptoms started in November 2005, which was before I was diagnosed with SLE/Sjogren's and prescribed Plaquenil. The only way I can manage my symptoms is with Kapidex.

karenboss
01-11-2010, 11:39 AM
HI - well I saw my rhumy last week and he gave me a "holiday" from plaquinel due to the ringing, though like you Rob he doesn't think it is the planquinell - he says in 17 years of practice has only had two or three cases. So for 30 days I'm off of it and we'll see if it goes away. Today is day five and it is still very noticiable.
I do feel great though! Really great. I'm back at the gym and have great energy. I had (have) GERD too but it is pretty well controlled on rx prolisac.

The biggist worry dr had is about a persistant cough and a little shortness of breath that I mentioned. Though it is really minor he ordered all kinds of tests. Hopefully it will be nothing - or a little asthma or something. Those tests are scheduled for 1/29 then I see my rhumy on 2/5 don't know if he will have the test results or if it is just to evaluate the break from plaquinel. I only imagne how these things go and if there is anything to the tests I would just get a refferal any way - don't you think? I imagine they will call and either say - your fine or go see dr so-and-so - don't you think?

BonusMom
01-11-2010, 02:58 PM
Sounds like you have a thorough doctor, Karen.

I was wheezing when I saw my PCP last March and she did pulmonary function tests and ordered a chest x-ray (clear) and I was subsequently diagnosed with asthma.

I hope the ringing in your ears stops soon--it's got be be very annoying.

karenboss
01-22-2010, 01:31 PM
My ears are still ringing... :(
I have been off of plaquinell for 17 days -

laurid8967
01-26-2010, 04:07 PM
Hey there -
Sorry to hear of the ringing in your ears - hope that stops soon for you! My experince with Plaquenil has been good, and Im posting because twice in the past few years Ive gone off of it because I was feeling good and "didnt think I needed it anymore". Both times, in a matter of about 6 weeks or so of being off of it, I started to get my joint pain and fatigue issues back. Both times, I went back on it and (like Saysusie said, it can take a WHILE to work) I began to feel better.
For me, its a medication that does work, but I dont realize it until Im off of it! Now, I just stay the course and take it twice daily. It is the LEAST toxic of all the meds available, and though I have heard many people complain of some side effects, I have had none - or none noticable to mention.
Of course, as with lupus itself, evryones experience is different. Hope your ear ringing problem resolves soon!
Lauri

magistramarla
01-26-2010, 07:54 PM
Hi Karen,
You should ask to be evaluated by an otologist - it could be a separate issue. As someone else mentioned on this thread, I had ear ringing and vertigo long before AI issues were even brought up. I was diagnosed by an otologist with Meniere's Disease, which is an inner ear problem. If I were you, I would get it checked out.
Marla

karenboss
01-27-2010, 12:57 PM
Hi Marla -
I've been thinking a lot about you lately (that is when I can hear myself think)
He said he could refer me to an otoologist at the last visit but we decided to wait and see if it is the plaquinell. It appears it is not.

Tell me, does it sometimes quiet down for you? Does it get louder before or during a lupus flare? I had a lot of dizzyness when this came up, but everything came up at the same time so I think it is will be hard to say. Still a bit off balanced - dr said lupus cns, but maybe it's the ear thing.

Is there any effective treatment for meniere's?