Author Topic: Why do some members choose not to take plaque nil?  (Read 12634 times)

cargillwitch

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Re: Why do some members choose not to take plaque nil?
« Reply #30 on: December 24, 2012, 07:59:06 PM »
I do in a way understand why many doctors are reluctant to use the heavy artillery. All these therapies come with some horrendous side effects included significant reduction in life expectancy- a huge jump in cancer risk being just one of many.

My mother was in stage four liver failure before her AI issues were taken seriously- I do so know the risk of not pressing to have your liver function, cardio/pulmonary exam and other CNS exams. But  I also know why there is reluctance to routinely prescribe medications or treatments to every patient when many primary sjogrens people will not develop issues that warrant this kind of risk.
My frustration is that we only have  neutron bombs when what we need are precise hammers.

Research; I am not frustrated with doctors, it's with the speed of research.Doctors only puppet what the researchers say.
47 female, Sjogrens ,Raynauds,degenerative disc disease.Rheumatoid Arthritis, gastroparesis.

Tivia

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Re: Why do some members choose not to take plaque nil?
« Reply #31 on: December 25, 2012, 10:17:15 AM »
Cargill I agree about the research part, but doctors can be bad also. Oh and get this because of the fiscal cliff fiasco they are saying that some medical research is going to be cut!! One of the researchers interviewed about it who is on the chopping block was a RA/AI reasercher. I am thinking what the heck is wrong with them, you dont cut medical research..cut crap like military spending for stupid stuff, cut out the kickbacks to corporations like oil etc. Health and medical research needs to function there is too much suffering out there from incurable illness.

cargillwitch

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Re: Why do some members choose not to take plaque nil?
« Reply #32 on: December 26, 2012, 07:06:46 AM »
Yes ,I feel very badly for those of you  from the United States.

 Having to pay for insurance and all the rules surrounding what and whom you can see must add another stressful element to this disease we don't have to deal with  :(
47 female, Sjogrens ,Raynauds,degenerative disc disease.Rheumatoid Arthritis, gastroparesis.

katyjo

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Re: Why do some members choose not to take plaque nil?
« Reply #33 on: December 26, 2012, 12:22:49 PM »
I chose not to take plaquenil because I just wasn't ready to take medication long term.  I decided to take care of my health by eating properly and losing weight first.  It really helps to eat well.   I'll reconsider medication later.

Tivia

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Re: Why do some members choose not to take plaque nil?
« Reply #34 on: December 26, 2012, 12:34:10 PM »
I chose not to take plaquenil because I just wasn't ready to take medication long term.  I decided to take care of my health by eating properly and losing weight first.  It really helps to eat well.   I'll reconsider medication later.

Can I ask you, how does your sjs manifest? Is it mainly sicca or do you have joint and organ/neuro involvement. I am just curious at what levels people can handle self treatment. I know there are days I would sacrifice bunnies to feel better, and other days I am almost..not quite but almost my old self. Plaquenil scares me, but so does the thought of the disease running rampant   

teresa

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Re: Why do some members choose not to take plaque nil?
« Reply #35 on: December 26, 2012, 04:17:34 PM »
I have taken Plaquenil for 8 years.  However, I only take it once a day.  Taking it twice a day gave me ringing in my ears- both times I tried it.  I can't tell that it does anything for me, but my rheumatologist won't let me stop taking it.  I actually take the generic form. 

katyjo

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Re: Why do some members choose not to take plaque nil?
« Reply #36 on: December 27, 2012, 06:31:15 PM »
Tivia,
I am almost 50 and I've had back and neck pain for the last 20 years.  When I turned 40, knee and hip pain started.  In the last three years I developed dry eyes.  I do experience numbness in fingers and toes.  All along I would experience some unusual symtoms that I couldn't put my finger on.  I felt I needed to detox, have a pure unprocessed diet, lose my belly.  I'm almost a vegan.  I'm not any drier than 3 years ago.   

MaryBee7

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Re: Why do some members choose not to take plaque nil?
« Reply #37 on: December 27, 2012, 07:06:56 PM »
Can I ask you, how does your sjs manifest? Is it mainly sicca or do you have joint and organ/neuro involvement. I am just curious at what levels people can handle self treatment. I know there are days I would sacrifice bunnies to feel better, and other days I am almost..not quite but almost my old self. Plaquenil scares me, but so does the thought of the disease running rampant
[/quote]

Tivia, from the start in 2006 I presented backwards.  Nausea from heck, abdominal issues, fatigue, chills, fever.  Then developed slight neuropathy in legs which progressed to Pain.  Weight loss was next (3 rounds).  Finally this past spring I developed blepharitis and got a positive diagnosis.  Now the dryness is progressing quickly.  Throat is parched all the time and I can't talk for more than a few minutes without a coughing fit erupting.  Have one arm/hand that stays numb for, say, half a day at a time. Hips/knees ache, sometimes feet....though I have no visible swelling.  I am taking Plaquenil but don't know if I believe in it, the disturbing dreams it causes really wreck me as I have severe night sweats to deal with already every night.  Would take up drinking again to forget my troubles but alcohol makes me wayyy sick now    :o

Sleepy In Seattle

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Re: Why do some members choose not to take plaque nil?
« Reply #38 on: December 27, 2012, 07:11:55 PM »
Regarding life expectancy - my Rheum said they just completed a long-term, huge study that shows that people with A-I diseases on Mtx (as well as other steroid-sparing agents) actually live LONGER than those not on the drugs - they have less heart disease and many kinds of cancers than the general population, as well as their diseases being controlled. They think it has to do with the fact that those drugs reduce systemic inflammation that can CAUSE heart disease and those kinds of cancers.

I know that many of the drugs can have other bad side effects and different people react differently, but apparently OVERALL, the drugs do NOT shorten life.
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Joe S.

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Re: Why do some members choose not to take plaque nil?
« Reply #39 on: December 28, 2012, 03:48:16 AM »
I could never Live in Seattle or on the west coast. On the 26th at about 8pm I lost all sense of direction and became a basket case until 10:30pm when a 3.6 quake hit and I passed out.

Life Extension magazine often tells of the benefits of various drugs and supplements and how they work to enhance and prolong life. They usually site pages of reports and studies.
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Sleepy In Seattle

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Re: Why do some members choose not to take plaque nil?
« Reply #40 on: December 28, 2012, 08:23:17 AM »
Joe I am sorry you have that awful experience - but man, you'd make an incredible early-warning system!!!!

I think it's rally cool how different people tune in to the earth/nature in different ways. It's like we're all tuning forks that ring at different frequencies depending on what we're in tune with...I work with horses for a living and that is definitely my "frequency" - but I can sleep right through an earthquake, LOL....only wake up when stuff starts tumbling down and hitting the floor!   :P

Next time I am in, I will ask him specifics about the study. He did say it was a huge, long-term study in a peer-reviewed medical journal.
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Tivia

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Re: Why do some members choose not to take plaque nil?
« Reply #41 on: December 28, 2012, 09:11:39 AM »
I could never Live in Seattle or on the west coast. On the 26th at about 8pm I lost all sense of direction and became a basket case until 10:30pm when a 3.6 quake hit and I passed out.

Life Extension magazine often tells of the benefits of various drugs and supplements and how they work to enhance and prolong life. They usually site pages of reports and studies.

Oo wow Joe, me personally crave cool humid weather, I can breath and dont feel stuffy. The summer drought about killed me literally , I pray we dont have another drought this year or im a goner. I felt like a asthmatic in a severe attack the whole summer long, with panic thrown in for good measure lol

Chrisb

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Re: Why do some members choose not to take plaque nil?
« Reply #42 on: December 28, 2012, 03:22:49 PM »
Gosh it's so confusing. If plaquenil is suppose to stop the progression of the disease then why don't all RA's prescribe it.  It seems there is controversy.  On the other hand, some RA's feel strongly that it does (like my RA) and will prescribe it.

I'm at a crossroads.  Do I take this medicine that may slow the progression or not.  I've read of the side effects of hair loss, GI trouble, itchy bumps, sun sensitivity, hair turning orange, skin discoloration, increase incidence of psoriasis ..... and that's not all of course.  Sooooo..... do I take something that could cause these on a chance it may stop the progression?

Does anyone know if there is a clinical study that shows the percentage of patients who suffered certain side effects from plaqenil?

Thanks so much y'all.  Can you tell I'm scared?

Sleepy In Seattle

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Re: Why do some members choose not to take plaque nil?
« Reply #43 on: December 28, 2012, 03:44:55 PM »
You can Google numbers/statistics on most drugs. I can't remember what sites specifically I looked at, but I remember that after reading a lot, I decided Plaquenil was pretty benign - it's been around for many, many years and actually has a way better safety record than a lot of OTC products.

Most people handle it just fine...some people have digestive upset and weird dreams at first, but usually get over than in a few weeks. It helps to take it on a full stomach in the morning. Some people start with just 200mg/day for the first few weeks and then build up to 400mg/day. It's definitely something you build a tolerance for - if it bothers you some at first, that doesn't mean it always will.

Then again - some people DO react very badly to it. If you are one of them, don't take it.

It is often a first line of defense because it is safer and more well-studied than any of the other drugs used to treat AI diseases.

Yes, the drugs can be a problem...but so is the disease. You can always TRY a drug (or a supplement, or a diet, or whatever), and if it's not for you, discontinue...but you CAN'T get rid of the disease, unfortunately (not yet, anyway - I do have hope, though!). Don't let the disease wreck your life because the treatment isn't perfect. I think sometimes people don't take the disease seriously enough. Read the dangers of the drug, sure - but also read what this disease can do to you. There are two sides.....

And none of it is a permanent decision - always work with your doc to adjust things so you get the maximum benefit with the minimum side effects! Never give up!!!!
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Chrisb

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Re: Why do some members choose not to take plaque nil?
« Reply #44 on: December 28, 2012, 03:58:09 PM »
Thanks Sleepless.

I guess I'm just thinking if the plaquenil is suppose to slow down the progression wouldn't that mean you would need to stay on it?  I've never taken anything.  Seriously. I wouldn't even take tylenol after having my babies. Didn't drink, smoke etc.  I guess that's why I'm so worried.