Author Topic: Recently diagnosed  (Read 604 times)

meadow_65

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Recently diagnosed
« on: January 11, 2017, 05:25:11 AM »
Hello, my name is Conni. I finally saw a Rheumy yesterday and got the official diagnosis. Before yesterday I think I held hope that she would tell me there had been an error, but thats not what happened. On one hand I am relieved to finally have answers after years of complaining. On the other hand I feel a little bummed out. I watched my Grandmother become bedridden due to Lupus and Rheumatoid Arthritis and I really do not want to end up there. I need to find a physical activity that does not hurt my joints and muscles. Im thinking the pool is a good place to start. My Rheumy wants me to start plaquenil, which scares me. I had done research on it years ago when my daughter was put on it for Lupus. I took her off of it because I was afraid of how it would affect her being so young and she began to have vision changes. Anyone who has taken plaquenil, can you tell me your experience?

Joe S.

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Re: Recently diagnosed
« Reply #1 on: January 11, 2017, 06:02:30 AM »
Welcome to the forum, Conni.

Some of us have posted what we are taking in our signature. Before trying any thing check for side effects, counter indications and interactions. You will see that I do not take plaq or mtx.

I live in my zero g recliner. As for exercise, walking, isometrics, Tai Chi can be low impact. I use meditation and visualization.

Good luck on your journey.
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Jasper

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Re: Recently diagnosed
« Reply #2 on: January 11, 2017, 10:31:47 AM »
Welcome to the forum.

I do Tai Chi Chih for an hour 3 times a week. It is easy, relaxing, and helpful for balance, stretching, moving, and the mind. I also do 1.5 hours of stretching and strengthening exercises each day, many of them in bed before i ever get up. I walk an hour each day. Pool exercises sound like they would be good also.

I have taken Plaquenil since Sept. 2013. I have had no problems with it. I did have a baseline eye exam, including spectral domain OCT (optical coherence tomography) by my neuro-opthamologist.  I have a yearly visit with him which includes an eye exam, slit lamp exam, fundus exam, an OCT, and visual field testing. The OCT can detect any early Plaquenil toxicity.

http://webeye.ophth.uiowa.edu/eyeforum/cases/139-plaquenil-toxicity.htm

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Navigator

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Re: Recently diagnosed
« Reply #3 on: January 11, 2017, 11:01:34 AM »
Welcome

I am like Jasper. I have been on plaquenil for 11 years with no adverse effects. I get a comprehensive eye exam every year and since I know what to look for if something is going wrong before there is any permanent impact I am comfortable with it.   

I try to walk as much as possible. Pool sounds great.  The important thing is to do something you will like and stick to.   My pool swimming is seasonal...a bit chilly right now.

This is a great place to learn from those with experience.
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SunshineDaydream

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Re: Recently diagnosed
« Reply #4 on: January 12, 2017, 02:34:57 PM »
Welcome aboard, Conni!

I agree with others about walking, Tai Chi and exercising in a warm pool. I also like foam rolling.

Plaquenil is usually okay as long as you are monitored while on it. I don't know how long ago you researched it and your daughter had vision problems, but dosing guidelines were changed in 2011 and hopefully the occurrences of side effects have been significantly reduced since then.
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finallyadx

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Re: Recently diagnosed
« Reply #5 on: January 14, 2017, 12:54:26 PM »
Hello, I have been taking plaquenil for almost five years now with no adverse effects of the eyes.  I have an eye exam at least annually and had a baseline exam prior to starting plaquenil. 

It has helped me with fatigue, aches and pains and I also feel has lessened the dryness a bit. 

Keep us posted on what you decide.

Sending positive thoughts your way.

Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

irish

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Re: Recently diagnosed
« Reply #6 on: January 14, 2017, 06:08:21 PM »
I was on Plaquenil for about 6 years and just went off of it about 8 months or so because I was having so much trouble with my acid reflux. After I quit the Plaquenil my stomach started to settle down. I don't know why I got along for so long and then started having problems. I have been going up and down on my prednisone dosage so that could be the cause. Also, I have not been eating as much ice cream and not having ice cream after supper may be the issue. Ice cream is one of the few things that settles my stomach down.

I have to admit that I am thinking about starting it up again. I have had such an increase in fatigue and more pain in joints, muscles, tendons, etc and getting around this winter with the snow and fatigue is hard. I am weaker and falling is an ever present worry. I know that the plaquenil did help. Also, the eye issue is not something to fret over. Get your baseline eye exam and do a check up every 6-12 months per the eye doctor. I did once a year and had not eye issues. My eye doc says that she sees little if any eye issues with the plaquenil. There are times that it does occur, but when this happens a person goes off the drug. Keeping a good relationship with your eye doc is important. Find a eye doc that cares about your eyes./

Also, the dosage of Plaquenil that we take is much lower than used for its original use. This drug is an antiparasitic drug that was found to improve the health of people with lupus and rheumatoid arthtitis many years ago. It helps the pain, aches, fatigue and general feeling of better health in people with Sjogrens and other autoimmune diseases. In the last 10 years it has become the first drug of choice in treating Sjogrens. Good luck. Irish

nannysbaby

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Re: Recently diagnosed
« Reply #7 on: January 15, 2017, 06:49:48 AM »
Hi Conni, welcome.  I have been taking the generic of Plaquenil (hydroxychloroquine) for almost 10 years.  I have had no problems.
Primary Sjogren's, Fibromyalgia, RLS; Methotrexate, Hydroxychloroquine, Vitamin Supp., Thera Tears

bloodless

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Re: Recently diagnosed
« Reply #8 on: January 16, 2017, 01:25:04 PM »
I've been on plaquenil for many years with no side effects either. I think it's a wonderful drug.
For exercise, I suggest water aerobics. It works different muscles including abs. (keeps you from floating too much  :))
I miss the good old days. Things were more like they used to be back then.

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