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lucysgd

HealingWell Forum
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Member Profile
Display Name
lucysgd
Profile Created
6/20/2008 4:28 PM
Last Seen
8/15/2017 6:41 AM
Total Posts
675

Last 50 Posts

Prasco

It's good to hear that that happens as well! May it remain quiet forever and always. I don't know why the cost of Brand Plaquenil skyrocketed in 2014, but it certainly had an impact for me....

8/13/2017 11:28 AM

Lupus
Prasco

Thanks Lynwood. Are you still taking the non generic brand? When my insurance changed it would have cost me over $700/month....

8/12/2017 8:31 PM

Lupus
Feel exhausted.

Dust mite, I'm sorry you're feeling this way. I'm right there with you right now and for the past several months. It's awful. But I have had many periods in the past 9 yrs that were so much better....

8/12/2017 10:39 AM

Lupus
Prasco

Generic Plaquenil has always been problematic for me. But paying for brand, became impossible due to insurance issues. I used Sanofi Aventis brand thru Canada drugs online for over a year and then...

8/12/2017 10:20 AM

Lupus
Avise Lupus/CTD testing

Hi Lynnewood, I read about it at lupus.resources.org which is really Lupus Foundation's updated site. Under the heading of Lab Tests For Lupus there was an article regarding these newer tests. When I...

4/5/2017 6:56 PM

Lupus
Avise Lupus/CTD testing

Has anyone had testing done for lupus or CTD through Exagen Diagnostics? These tests - called "Avise" are supposed to be more accurate/sensitive. I read about them on the new lupus resource site....

3/20/2017 7:24 PM

Lupus
Humming sensation throughout my body

Makes sense, Lynnewood - the steak would add protein and Vit B's - which are good for muscles and nerves. I wonder about magnesium, too....

10/20/2016 8:09 PM

Lupus
Humming sensation throughout my body

This is an oncoming flare signal for me - at least I only seem to experience it when I am exhausted and stressed and is usually followed by flare symptoms. Most noticeable after waking in the...

10/20/2016 11:58 AM

Lupus
MTX even with normal inflammatory markers?

No daycare - just lots of relatives and a couple nursing homes. Still mulling, but I'm chilling out about giving it a try. He is uber fun and utterly exhausting! I love their visits and store up all...

10/27/2015 3:34 PM

Lupus
MTX even with normal inflammatory markers?

Thank you, Lynnwood. What you said makes sense. In thinking it through, I also realized I had been using Advil on a daily basis over the years to help manage symptoms, and over the last few mos. have...

10/27/2015 10:19 AM

Lupus
MTX even with normal inflammatory markers?

I've been taking Plaquenil for 6 years with a diagnosis of UCTD and it has made quite a difference in my overall wellbeing. I still deal with flares and have had to learn to manage my energy etc etc....

10/26/2015 8:55 PM

Lupus
CCP Test

Constantpain, I take .5 mg of Alprazolam for sleep on occasion. During flares I use it every night. It's my rule to never use it during the day, because it's basically an anti-anxiety drug that can...

7/28/2015 12:41 PM

Rheumatoid Arthritis
Feet hurting

I have had trouble with my feet, but not quite like you described. But you mentioned the reaction you had to the whooping cough/tetnus vaccine. I had one last year and 2-3 wks later got extremely...

10/14/2014 1:03 PM

Lupus
Off Topic A Little

Just a thought. My first rheumatologist, who started treatment with Plaquenil, assured me it was not only safe but beneficial in terms of heart health and cholesterol. She claimed that fellow...

9/23/2014 6:58 PM

Lupus
Absolutely Ridiculous

Sounds a little like the Nemenda business. Nemenda (sp?) is an Alzheimer's medication,about to be made available as a generic. To avoid the inevitable drop in profits, the company has switched to a...

9/17/2014 5:36 PM

Rheumatoid Arthritis
question about osteo vs. rheumatoid pain in hands

I'm usually on the lupus forum, but I also have osteoarthritis in hip, knees, spine and neck. My hands/fingers have been giving me fits lately - weak, painful and swollen - but no pronounced redness...

8/21/2014 1:50 PM

Osteoarthritis
Hi, need some help reading test

Hi Madie - I think the EBV refers to Epstein Barr Virus-(possibly the EBNA also) which causes Mono and other things. Sometimes it's used to rule out another source of fatigue and malaise. But,...

7/29/2014 8:31 AM

Lupus
Lupus or Fibro?

Becky, I see I'm in the minority here, but I wouldn't start them both at the same time. I have fibro and UCTD, getting the fibro dx almost 10 years before the UCTD. As I understand it, Cymbalta also...

6/20/2014 9:57 AM

Lupus
More people with UCTD out there?

I have been taking Plaquenil for 5 years for UCTD. It has helped quite a lot. So much so that I've tried to stop it a couple times, feeling like maybe I could do without it. But that hasn't worked....

6/14/2014 8:51 PM

Lupus
Question about protein in urine

I was told that taking nsaids (advil, for eg. ) can cause protein in the urine?...

6/14/2014 8:32 PM

Lupus
Transplant completed May 20th!

So happy for you!!! Your attitude was always so inspiring. All the best to you and your friend. Lucy...

5/12/2014 8:25 PM

Lupus
Numbness/pins and needles

My rheumy referred me to an orthopedic doc for shoulder and arm pain with weakness. I know what you mean about dropping things and shooting pains, though mine were mostly in my arms and hands. Saw...

5/6/2014 6:02 PM

Lupus
Pregnancy

I feel for you. My daughter gave birth to our first grandchild 4 mos. ago. I held my breath through most of her pregnancy. She finally had some AI testing after failing to conceive after 5 years of...

4/7/2014 10:04 PM

Lupus
"Get your Grump On" with me!

Interesting study results, Donna. Not surprising, really, though. I tend to think that for many women it's almost a necessity to be alone in order to truly rest and not be "doing" or stressing...

4/6/2014 7:05 PM

Lupus
"Get your Grump On" with me!

Lynn, I spend a lot of time by myself, too. A result of a long stretch of not being able to socialize with any regularity or dependability. People do finally give up, it seems. Now that I am better...

4/5/2014 7:26 PM

Lupus
Wondering if reducing Plaquenil also reduced my immune response?

Hi Sushma - how long ago did you reduce your dose? I tried this once before in 2010 - unsuccessfully, as well. First thing I noticed was a little increased fatigue, and then things really snowballed...

2/21/2014 5:09 PM

Lupus
Wondering if reducing Plaquenil also reduced my immune response?

I have been fighting a respiratory virus for weeks. First one started in early January. Saw doc and a short course of Pred with mucinex (can't take decongestants) seemed to take care of it. Then just...

2/12/2014 9:30 PM

Lupus
difficulty swallowing

I have UCTD and also finally had an upper GI test done due to intermittent trouble with swallowing. Nothing much was noted other than I clearly had trouble getting the tablet down for the test. A...

1/29/2014 8:37 PM

Lupus
Not sure what's going on

I hope you'll let us know what you find out. I, too, am tapering my plaquenil to one per day. Rheumy say I could also do a 2/1 combination. It's been about a month. So far, so good. Just like it...

1/15/2014 9:15 PM

Lupus
Joint pain

I also have fibro - had been diagnosed for 10 years before the lupus type stuff came into focus. I do think the combo makes it very hard to sort things out and I definitely had some increased pain...

1/15/2014 8:41 PM

Lupus
What is this feeling?

After several years, my diagnosis is still UCTD - but I know exactly what you are talking about. I described it as getting the flu, having the flu, or just getting over the flu. Some days feeling...

12/27/2013 8:30 PM

Lupus
Feeling overwhelmed

Lynnwood gave great advice. I will only chime in on the gluten free issue. I have been adhering to a gluten free diet a little over 4 years, and started it about 8 mos after beginning Plaquenil. It...

12/10/2013 11:04 AM

Lupus
Memory problems--so scared!!

sueg - so sorry you have something else to contend with. Your questions are good ones - please share what you find out from the neurologist. I have not heard SLE and MS being being referred to as...

11/19/2013 4:54 PM

Lupus
Bad Side Effects of Plaquenil

Lots of people experience some GI issues when starting Plaquenil, but they usually subside after a short time. Did you start Plaquenil when you rec'd your diagnosis and did the constipation begin at...

11/18/2013 7:23 PM

Lupus
knee troubles

Hope you get some relief and some answers, Joy. I've been having knee problems for years. My rheumy did xrays a couple years ago and all that showed was osteoarthritis. I also walk for exercise and...

11/13/2013 5:17 PM

Lupus
halogen lighting

Those of you who deal with uv light sensitivity, how do you do with halogen lighting? We have halogen pot lights in the bathroom, and the only time I felt affected by them was when painting recently...

11/7/2013 1:31 PM

Lupus
So tired...

Sounds like you made good headway and earned a nap :wink: I gave hands and shoulders a day off - you are so right - no need to impress. But sure am looking forward to calling it all "Done"! Hope you...

10/3/2013 7:04 PM

Lupus
So tired...

So glad to hear the problem has been addressed, at least well enough to move on and begin tackling the drywall dust! I am anxious to get to that point. Countertops should be installed next week and...

10/2/2013 9:02 PM

Lupus
So tired...

Oh drat! I'm sorry - those kinds of situations are just very stressful. Go ahead and sob it out - you'll feel better. I have to say that my experience with painters is that fine sanding is just that....

9/28/2013 12:23 PM

Lupus
So tired...

I know you were kidding. You were kidding about the super glue, right? I can't help myself - just in case, you must never ever ever ever ever EVER do that!!!! When we moved into our current house...

9/27/2013 8:11 AM

Lupus
So tired...

LOL - I find the "people in your space" every day the hardest thing. I have the best, tidiest, most cheerful contractor, who is even friendly to the dog - and it's just him, not a big crew - but I...

9/26/2013 11:46 AM

Lupus
So tired...

Hi Lynnwood - Your post made me smile since I am feeling the same. I am two weeks into a total gut kitchen remodel. 2 weeks with no sink, or stove. Fridge is in the family room, along with MW and...

9/23/2013 10:32 AM

Lupus
High ANA questions

I started down this path with a very similar profile. High side ANA with speckled/nucleolar pattern. Sed rate at 20 and high CRP - with remaining labs pretty much normal. I was started on Plaquenil...

9/11/2013 10:22 PM

Lupus
Round and round she goes...

I do get vertigo from time to time - though not often. Does seem worst in the mornings, and makes for a lurching trip to the bathroom. Sometimes it comes on at night, but I don't think I've ever had...

7/1/2013 7:51 PM

Lupus
Sigh.

Sorry you're stuck in the plodding zone. No fun. Bill really nailed it - the relentless pain, even if it's not the worst pain, is such a drain on the body - and spirit. I did use Celebrex some years...

6/20/2013 8:43 PM

Lupus
UCTD/ starting Plaquenil

I don't have much to add - Lynnwood and Joy have given great info and advice - but I also have a diagnosis of UCTD, and I think there are a few others on this forum. We have many of the same problems...

5/25/2013 7:47 AM

Lupus
mouth sores/swelling under tongue

Hi Butterflake - Officially, my diagnosis is still UCTD, but I get the mouth sores and have all the Sjogren's issues and symptoms, accept for positive lab values (SSA-SSB). It seems the minor...

5/25/2013 6:43 AM

Sjogren's Syndrome
mouth sores/swelling under tongue

Just checking.....have had mouth sores on the roof of my mouth, tongue and gums - but currently have swelling and a sore on the floor of the mouth, under the tongue - only on one side. There must be...

5/23/2013 6:23 PM

Sjogren's Syndrome
Women's Issues & Lupus

I had bloodwork done prior to that last period over a year's time and the results were all over the board (in my late 30's). Which I gather is common in peri-menopause. I never did have bloodwork to...

5/19/2013 12:01 PM

Lupus
Restasis users?

Thank you for the replies. I will try the Genteal, and I'm glad to know about the PBF, too, and will look for it. I think I will try the Restasis, too. I was told 5 years ago by another eye doctor,...

5/19/2013 11:51 AM

Sjogren's Syndrome
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