Author Topic: What specific benefit have you reaped from Plaquenil?  (Read 24807 times)

dainbramage

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #30 on: May 20, 2011, 12:04:17 PM »
I have been on plaquenil for 2 years. I go to my eye dr every 6 months to check on my peripheral vision (plaquenil may cause this). I have seen my ANAs go down and stablize, the ringing of my ears has stopped, and my eyes don't swell as they used too. My body still hurts, I still have brain fog, I still have numb toes but I think it has helped me more than harm.

TripleC

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #31 on: July 27, 2011, 09:57:54 AM »
  I was just diagnosed with SJS at beginning of year....  is Plaquenil recommended at the early stages of SJS ?   My eyes are very dry, slight dry mouth, taste buds changing, I do have muscle/joint pain but I have been blaming it on... rotator cuff tear, carpal tunnel, planter fascitis.  I have been hoping when I can cure these things my body will be fine but some days I really am having my doubts..

Plus a few other minor aches & pains, fluid build up in ankles and a couple of my fingers I cant close all the way due to the joints. ( no arthitis )
« Last Edit: July 27, 2011, 10:26:16 AM by TripleC »

Carebear

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #32 on: July 27, 2011, 10:03:03 AM »
Hi TripleC,

Plaquenil is recommended for the early stages of Sjogren's because it can slow down its progress by modifying the disease.  It's only my opinion, but I think the sooner you beginning taking it, the better your results.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

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A66eyroad

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #33 on: July 27, 2011, 10:26:34 AM »
Plaquenil has been a miracle drug for me.  I don't feel like I have an eternal hangover any more, I don't get headaches half as often, and I can actually get off the couch on weekends more often than not now.  It has helped with my joint pain and with my ear issues (pain and buzzing).  

Downside:  It took a FULL six months for me to even begin to see any effects.  And the effects were very slow in coming.  I have been on the medication for more than a year now.  If I miss more than two doses I can tell a huge difference.

Side effects:  The only side effect I have is nausea.  That's why I take it along with my supper (using solid food to make sure it goes all the way down my gullet since it's really dry and has a tendency to stick and just sizzle away in my espohogus...).

Caution:  Although the vision problem side-effect is rare, it's still out there.  I have a test for peripheral vision every six months.  Truth to tell, though, I would rather be blind than feel as sick as I did just one year ago.

Better living through chemistry!
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Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
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Diane54

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #34 on: July 27, 2011, 01:32:19 PM »
I have been on Plaquenil since late January and I have to say the morning joint pain is gone, it has helped somewhat with my brain fog, and has helped my liver enzymes stabilize. (It seemed to have helped my AIH) I do have antiphospholipid syndrome so I am hoping it has some benefit there also.
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine

susanep

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #35 on: July 27, 2011, 02:18:47 PM »
My life is still totally different than it use to  be, but after being on Plaquenil I can raise my arms above my head, and walk enough to manage unless I am in a bad flair.

 Before the Plaquenil I couldn't hold my arms up long enough to wash my hair or hardly long enough to even brush it. I felt like I couldn't hardly even make it up from my bed or couch, because the fatigue was extremely crippling, and just laying down I felt so tired like it took a lot of effort just to breath, and my arms and legs felt so fatigued just resting, and so heavy.

Now I still have the extreme fatigue that has changed my life, and I have only a few spoons to use per day, but at least it is not like pre-plaquenil.

susanep
« Last Edit: July 27, 2011, 02:23:28 PM by susanep »
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

WiVal

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #36 on: July 27, 2011, 03:31:12 PM »
I've been taking plaquenil for a couple of years now. It reduced inflammation throughout my body and helped me feel better and do all kinds of things that I couldn't do before.

eyeamdry

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #37 on: July 27, 2011, 04:00:08 PM »
WOW, what a great thread for Plaquenil!!!  I have been taking it for 4 years since my diagnosis and take methotrexate among other things.  I have been off Plaquenil for 2 weeks only because I am out of the med and am having trouble with the drug co ordering it.  

I suppose I should start questioning my drs about long term use--or take a break (longer than 2 weeks) to see what will happen.  This thread should show members how much Plaquenil has helped many and apparently with little problems.  Lucy

NOTE:  8/1/11  I must have been up very late which is my norm, but in reading this a few days later, it wasn't Plaquenil I was out of---it was Methotrexate. 
« Last Edit: July 31, 2011, 09:48:52 PM by eyeamdry »

buddybelle

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #38 on: July 27, 2011, 06:16:30 PM »
I have learned so much from this thread and hope it keeps going.

I was very opposed to taking the drug because I am on so many others, but my rheumy said my ANA levels keep rising and she believes it can help slow the progression of the disease. I finally agreed to take it and have been on 200 mg for 4 weeks. I go back on Friday for a check up. She plans to increase to 400 mg and leave the dosage there.

I have a few questions:

I already have a very low white blood cell count (leukopenia). Does Plaquenil raise or lower white blood counts?

On another site I read entries from people who blame it for weight gain. Any comments?

I have had extreme constipation for years and after the failure of a host of remedies was prescribed Bisacodyl. It seems that since I started the Plaquenil I am having regular daily bowel movements without the Bisacodyl. This has not happened for 20 years! Is it a side effect of the pill? If so, I hope it continues! 
Buddybelle

Meld256

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #39 on: July 27, 2011, 08:59:07 PM »
Hi buddybelle,

I agree!  I"ve learned a lot from this thread, too.

I'm sorry that I don't know about Plaquenil having an effect on white blood counts. Hopefully, someone else will have that info. for you.

I had heard a few people say they either lost a bit of weight or gained, so that could be a very individualized thing (like everything else with us).  ;)  I've been taking the drug since the end of April and not had any difference in my weight.

It's very possible that starting the Plaquenil has helped your constipation issues. I have noticed this benefit, too, and it's a beautiful thing!  So I can understand your excitement.  Of course, for some, it may give them diarrhea but in our cases, it's just balancing things out.

Have you seen any other benefits as of yet?  4 weeks is not a long time, so if not, I'd suggest that you be patient. I suppose your question about blood counts would be a good question to ask at your check-up.
Take care, and keep us updated.

Melinda

Billydude

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #40 on: July 27, 2011, 09:29:45 PM »
Its my understanding that Plaqueil is a very mild dry (and won't cause Blindness Joe).   Its also my understanding that its purpose is to stop the progression and not necessarily fix any existing problems.   I'm happy that some feel better but I think its just part of their course of their disease.   The point of plaquenil is to prevent progression.

gurs

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #41 on: July 28, 2011, 03:54:30 AM »
Unfortunately, you have some severe symptoms, Like me, and there is not much in terms of treatment for us. Ive tried Rituxan, IVIG and nothing has
really helped me with the gastroparesis and neuropathy and all the other SS issues..I would start with the plaquenil and go from there. It really seems
to help with the dryness, and maybe prevent future damage.
I would start with a very low dose-cut a tab in half (100mg) and take it with ,or after dinner, before bed and try to increase your dosage from
there.

Gursie
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

Joe S.

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #42 on: July 28, 2011, 05:05:41 AM »
As with every drug you take check side effects and inter actions. Blindness is one of the rare side effect and I just happened to be one of the lucky ones to get it. Most people will not display the side effects of a drug. Knowing the the side effects and interactions can help you identify if the problems you are having are related to the drugs you are taking. This also holds for any herbals or naturals that you may be taking.
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Jellyb

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #43 on: July 28, 2011, 05:49:10 AM »
Hi,
Plaquenil gives me terrible anxiety and chest pain, so I am only on 100 mg indefinately. I seem to be fine on that amount.

Iris

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #44 on: July 28, 2011, 10:58:40 AM »
I was taking 200mg a day but I noticed I had less joint pain after only a month.. But as soon as I tried to raise the dose I started itching all over.. Within 2 days I was covered in a rash and had to stop taking it.. 
Sjogren's Syndrome, fibromyalgia, essential tremor, RLS, degenerative disc disease, gastritis, Ischemic colitis, heart disease.
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