Author Topic: Why do some members choose not to take plaque nil?  (Read 13166 times)

Calli66

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Re: Why do some members choose not to take plaque nil?
« Reply #15 on: December 21, 2012, 10:37:45 PM »
I don't think there's a clear answer as to whether plaquenil "slows down" SjS. I've heard both yes and no from rheumatologists.

I think if you try it, and it helps you feel better, then you will eat better, get more exercise, and probably be healthier. The docs always told me that it's the least harmful of any of the drugs you can use, and a good place to start.

Being on it 2 years gave me plenty of time to observe my health and think about all my symptoms. As I stabilized my dry eyes and adjusted my attitude, I felt calmer and more confident about my own decisions. During that 2 years, I also stabilized my vitamin D, which had been very low, and I started taking fish oil. I think these 2 things helped. I felt much better after I quit.

But if my symptoms increase---especially if my muscle and joint pain gets consistently worse, then I am willing to try it again---I'm not totally against it.

Calli

Saundra

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Re: Why do some members choose not to take plaque nil?
« Reply #16 on: December 22, 2012, 03:50:35 AM »
Same here, I'm not opposed to retrying it in the future.  I've read to many positive things to completely shut it out.  Right now with the holidays here the nightmares causing me to loose sleep were becoming a huge issue.  I need my sleep.  I usually get up a couple of times during the night to go potty so nightmares waking me was to much.  It did cause foods to taste weird, and they bitchyness may of been from lack of sleep.  It also made my anxiety level real high,

All that and a few more I will probably retry in the future.  For me stopping worked, later taking may be more important than loosing some sleep.  Who knows may not even happen in the future.

Your the best judge, if you need it go for it. 

XOXO
Ldy

jazzlover

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Re: Why do some members choose not to take plaque nil?
« Reply #17 on: December 22, 2012, 02:08:57 PM »
Hurts my stomach too much.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

warmwaters

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Re: Why do some members choose not to take plaque nil?
« Reply #18 on: December 22, 2012, 08:32:43 PM »
I took it for two years, with modest side effects (occasional stomach issues).  My rheumy asked if I felt that it was helping, and I said no. So we did the experiment of coming off for 6 months, and I don't feel any different in terms of energy.  So for me there seems to little or no benefit.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Lesley_x

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Re: Why do some members choose not to take plaque nil?
« Reply #19 on: December 23, 2012, 12:22:50 AM »
I'm not on it as docs think I had quite a severe reaction to it.

I was on it for a year. I recently tried it again and it elicited the same reaction so I am off it for good.

I would love to be able to take it.

aussie mum

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Re: Why do some members choose not to take plaque nil?
« Reply #20 on: December 23, 2012, 11:35:22 AM »
My daughter can't tolerate Plaquenil - too many stomach issues. She was on Prednisone for a short time and had horrible headaches and disturbing nightmares. Her Dr then tried a Sulfa medication (don't remember the name) but she turned out to be allergic to that. He has mentioned MTX but with her past reaction to medications, she is not too keen to try anything new.

She is only on medication for her Thyroid & insulin resistance, nothing at all for her SJS/Lupus.


Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Joe S.

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Re: Why do some members choose not to take plaque nil?
« Reply #21 on: December 23, 2012, 12:07:07 PM »
Ihad one dose and went blind for 6 hours. I had to find an laternative.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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mebog

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Re: Why do some members choose not to take plaque nil?
« Reply #22 on: December 23, 2012, 02:14:27 PM »
 
I was on it. for about ten years when my eye Doc said it was giving me Macula degeneration.
I haven't taken it in about six years but I take prednosone and Cellcept.

Mebog

gold55

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Re: Why do some members choose not to take plaque nil?
« Reply #23 on: December 23, 2012, 07:21:28 PM »
Mebog,
How are your eyes since being off plaquinel?  Have they stabalized ...... are they better?
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Joe S.

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Re: Why do some members choose not to take plaque nil?
« Reply #24 on: December 23, 2012, 08:32:07 PM »
I believe so. I am waiting on my next visit.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

MaryBee7

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Re: Why do some members choose not to take plaque nil?
« Reply #25 on: December 24, 2012, 03:40:30 AM »
Was rereading these posts...and thinking...you know, when you are so sick and desperate for relief/recognition that THIS IS A REAL ILLNESS/h-e-l-p !!    we then hope that there are Magic Pills.  I thought that about Plaquenil...but also realized this morning while reading comments here again that...my brain is so fogged out I probably would have eaten 10 pounds of jelly beans if a doctor would have said THIS WILL MAKE YOU WELL. 

Also, with feeling that no one has believed me for so long, I've kept telling myself that it's ME, it's my brain that isn't letting Plaquenil work.  If I am able to remove myself FROM myself and stand back and think about it...I have to know that there are no Magic Pills and there are limits to what meds can do.  I don't know if Plaquenil stops progression, was under the impression that it decreases some of the symptoms...which is not the same as halting progression.  I'll stay on it, but with the realistic view that it is only one of the weapons doctors have to battle Sjogren's. 

Jenny

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Re: Why do some members choose not to take plaque nil?
« Reply #26 on: December 24, 2012, 04:27:10 AM »
I tried to go off of it a few months ago as I wasn't sure it was helping. Within days my joints were killing me, especially my fingers and shoulders. I started taking it again and I felt a night and day difference in less than a week. I'm sold!
65 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
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cargillwitch

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Re: Why do some members choose not to take plaque nil?
« Reply #27 on: December 24, 2012, 07:14:42 AM »
all the research on plaquenil's use for primary sjogrens just shows anecdotal relief of  joint pain and fatigue for some patients. This is not to be confused with a " slowing of progression" of the actual damage being done to exocrine glands or underlying immune system dysfunction.It has not show any statistical relief of dryness.

I think many of you have eluded to how powerless care givers must feel when dealing with our complaints- there is so little really understood about this disease and even less pharmocologically to offer.

 I think Plaquenil is suggested as a way of helping some  find symptom relief from it.As  you can read here ( and the studies bear out) having symptom relief from Sjogrens doesn't mean that it has gone away.

It is probably a good idea to keep this in mind when making the decision to try it or not. If your major symptoms are joint pain and fatigue - you may find some relief- but not a cure or slowing of the actual exocrine disease process.

And as with any medication there are side effects. Being realistic from the beginning can help I think
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 #28 on: December 24, 2012, 07:34:41 AM »
all the research on plaquenil's use for primary sjogrens just shows anecdotal relief of  joint pain and fatigue for some patients. This is not to be confused with a " slowing of progression" of the actual damage being done to exocrine glands or underlying immune system dysfunction.It has not show any statistical relief of dryness.

I think many of you have eluded to how powerless care givers must feel when dealing with our complaints- there is so little really understood about this disease and even less pharmocologically to offer.

 I think Plaquenil is suggested as a way of helping some  find symptom relief from it.As  you can read here ( and the studies bear out) having symptom relief from Sjogrens doesn't mean that it has gone away.

It is probably a good idea to keep this in mind when making the decision to try it or not. If your major symptoms are joint pain and fatigue - you may find some relief- but not a cure or slowing of the actual exocrine disease process.

And as with any medication there are side effects. Being realistic from the beginning can help I think


Then why not put people on the drugs that actually slow the progress? I hope people realize that you dont see the damage going on inside your body till its too late. Why not halt it early, if this was cancer they would not take wait and see approach. They would get in there and hit it hard to knock it down. I think the same should be for these AI's hit it hard knock it down and keep it down with a small maintenance course. But no they wait till the damage is so far gone ,then they stabilize people in a disabled state. It needs to be treated aggressively imo, you may feel ok now, but the disease is inside you choosing targets.

On the subject of treatment even if people only have minor symptoms at the time. There seems to be a section of people that fall into the worst case scenario group, these people need to be treated aggressively.   http://www.sciencedaily.com/releases/2010/06/100619095928.htm

How many of us fall into that category, I know I do.   

Tivia

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Re: Why do some members choose not to take plaque nil?
« Reply #29 on: December 24, 2012, 08:45:52 AM »
Another thing to consider how many of us are routinely screened for organ damage? You know you cant see it till its too late. No one did any test on me for these things, they even recommend a baseline chest xray so they can compare later on down the road. I dont like that you have to push doctors into doing something that should be routine. This all goes back to the point the patient has to become the doctor and study all this stuff in order to present to a doctor that should already know/be doing these things. Its frustrating I have seen patients that that have more medical knowledge than their doctors, how terrible.

?The important thing to realize with Sj?gren?s syndrome is that it can affect the entire body and can overlap with other autoimmune conditions,? Dr. Meador explained. ?So make sure that the organs are monitored for involvement. If you wait for symptoms to arise, the patient could already have significant [organ] damage.?  http://www.acpinternist.org/archives/2009/03/sjogrens.htm