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Author Topic: What specific benefit have you reaped from Plaquenil?  (Read 24811 times)

buddybelle

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #45 on: July 28, 2011, 05:26:55 PM »
Melinda:
Thank you for your thoughtful reply. I am thankful that thus far I have no side effects from the Plaquenil except the wonderful benefit of regularity! It is good to hear that someone else has had the same blessing. I didn't know at first if I had a bit of a bug and it was wishful thinking, but the gift just keeps on giving.

I am so appreciative of all the information I am getting from this thread and the forum.

Thanks again,
Buddybelle
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Meld256

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #46 on: July 28, 2011, 06:51:41 PM »
buddybelle,

Regularity is a great benefit; and hopefully that's just the beginning of good things to come.

You're doing great with NO side effects.  I had a bit of stomach upset and wierd little headache for the first 2 weeks and then it was gone. And itching, but only the top and back of my scalp.  No rash anywhere, but my head would drive me crazy! I just couldn't scratch enough for 2 weeks and then it stopped.  Thank goodness for fingernails!  ;)  I must have looked like I had fleas!

Iris, I'm sorry you had less pain and then had to stop taking it. This happens with many of us and we go back to finding other things to help.  I wish you hope.
Take care, all.
Melinda
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tracyj

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #47 on: July 29, 2011, 07:53:50 PM »
I've been on plaquenil for nearly a year.  It has helped with joint pain and oddly enough slowed down my hair loss a little.   Doesn't seem to have done a lot for the fatigue

Tracy
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Sensei98

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #48 on: July 29, 2011, 07:57:43 PM »
Plaquenil is for Malaria and very toxic in my opinion. It is kind of like robbing Peter to pay Paul...

I would not take it unless you absolutely have too.

They also use it for lupus...

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katyjo

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #49 on: July 30, 2011, 09:27:08 AM »
Would you start on plaquenil if your symtoms are mild on most days?  I am having a hard time deciding.  I am a worried about taking medicine for long term.     
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Carebear

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #50 on: July 30, 2011, 09:38:35 AM »
Quote from: Sensei98 on July 29, 2011, 07:57:43 PM
Plaquenil is for Malaria and very toxic in my opinion. It is kind of like robbing Peter to pay Paul...

I would not take it unless you absolutely have too.

They also use it for lupus...



Sensei98,

I can understand your apprehension, but Plaquenil is really one of the safest drugs we can be prescribed for Sjogren's management.  The dosage used for treating malaria is much larger.  There are many people on this board who have benefited from its use, and I am one of them.  ;)
« Last Edit: July 30, 2011, 09:59:51 AM by Carebear »
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Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

williak

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #51 on: July 30, 2011, 09:58:46 AM »
Plaquenil stopped the hair loss that was one of my first symptoms.  I have been taking it for 4 years, since my diagnosis.  I have my eyes checked every six months.  I take it to slow progression of the disease.  I don't know what I would feel like without it and have no intention of finding out!

Even with the plaquenil, I sometimes am so tired.  I have dedicated this weekend to getting some rest.  I took an nap after work Friday.  Slept about 8 hours last night.  Had an 1 1/2 hour nap this morning.  I really need this!

Kim
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Sjogrens, RA, Chronic Kidney Disease, several types of dermatitis, Granuloma annulare, plaquenil, pilocarpine, restatis, clonezapam, cymbalta, methotrexate, humira, dexilant lutein, flax seed oil

susanep

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #52 on: July 30, 2011, 11:25:38 AM »
Joe, are  you saying plaquenil caused you to go blind?

susanep
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Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

mshistory

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #53 on: July 30, 2011, 11:44:24 AM »
Quote from: katyjo on July 30, 2011, 09:27:08 AM
Would you start on plaquenil if your symtoms are mild on most days?  I am having a hard time deciding.  I am a worried about taking medicine for long term.     

Yes, I am. I was recently diagnosed and don't have severe symptoms (except for the fatigue) and am taking 400 mg of Plaquenil daily. I do have some joint pain, but it's not severe. I am hoping it will slow down the progression of the disease and help to prevent major organ complications. I was diagnosed based on bloodwork - I have quite a bit of systemic inflammation, and my ANA and SS-A maxed out. I'm not taking any chances!
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SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

engy

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #54 on: July 30, 2011, 12:42:29 PM »
I believe in being as natural as possible, with that said:

It was suggested by my previous rhuemy to try plaquenil last year. I did not like or trust this doctor and did not take it. I now have a new rhuemy I do like & trust & she begged me to do a trial period of 3 months on plaquenil.

I AM SO GLAD I LISTENED TO HER AND TRIED PLAQUENIL! It has helped me so much & I believe I wouldn't have the neuropathy or other symptoms if I listened to the doctor last year and tried it before making a decision.

It is the best medicine out there for sjogrens at this time in my opinion.

I know we all react to meds differently, I'm sensitive to most but not plaquenil. I'm so sorry for those who can' t tolerate or take it.

And if you don't want to, its your choice.

Carie
« Last Edit: July 30, 2011, 12:45:25 PM by engy »
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DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

gurs

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #55 on: July 31, 2011, 05:46:44 AM »
I was on it for years thinking it was doing nothing, until I made the mistake stopping it. Around 3 months later, all my neuro issues came in full force and I started
losing hair like crazy. It may not be a miracle drug, but its def a preventative of possible further damage ....we dont have many options either.

Maybe worth a try??

Gursie
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52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements
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