Plaquenil or Placebo?

[wildforwater]

Please tell me it could be the Plaquenil working!

I started it 6 1/2 weeks ago and have been feeling significantly better for close to a week now.  More energy and a lot less pain. 

I know the full effect takes months, but I am very optimistic that it really may be working.  I actually rode my bike 43 miles on Saturday at a fast pace.  Granted, I was tired afterwards and continue to be tired, but it did not cause the flare I expected as it has in the past.  My plan is to ride again tomorrow night after work and put it to the test again.

A little afraid to get my hopes up, but I can't help it. Anyone else have relief early on...and if so, does it last?

Maria

[mydogspot]

I think it can start working in just a few weeks.

I was already taking plaquenil for RA when I developed Sjogrens, so I guess it is not a wonder drug for me

[Thea]

It was at about the six-week mark that I noticed a bit of energy improvement, bit less pain in my hands. So, yes, I think it's possible it is helping you.

[slccom]

If you feel better, you feel better! It probably is the Plaquinel. They don't say that earlier results don't happen, just that full effects sometimes take that long.

Enjoy!
Sharon

[finallyadx]

That is so great - congrats!  I hope it is the plaquenil.  For me personally (and everyone is VERY different) - it took about six months. 

Sending positive thoughts that the plaquenil is started to work!  Keep us posted.

[wildforwater]

Thank you all so much for your posts.  Makes me feel confident that the Plaquenil is working and that there is life after a diagnosis of Sjogren's.   

Mydogspot, I'm sorry that your RA progressed to Sjogren's, but, if I'm correct, I don't think Plaquenil completely stops progression of disease, although I may be wrong.  Would like to know when and if you stopped taking it, did your symptoms worsen or stay the same ?

Granted, I don't feel like I use to before I got sick and I know it's likely that I will never be able to train every day to race like I used to, but I'll take this improvement and run with it.  I kept shouting all during Saturday's ride, "I can't believe I'm doing this; this is the best day of my life!" Then I gave my cycling peeps a lecture that they should never take for granted being able to race/ride or do whatever it is you love, because you don't know what you have till it's gone.  Think they got it.

Hugs,
Maria

[warmwaters]

Yes, I was told that Plaquenil could help within 6 week, or take as long as 6 months. So it's possible it's real.

And if it's not... so what?  I keep joking with my rheumy that if she can find a placebo that works, I'm all for it.

[sassygal]

I started feeling better around 2 months after beginning Plaquenil. After about 6 months I was doing even better, but after two years it seemed tha plaquenil stopped working at all.

sassygal

[wildforwater]

You are so right Warmwaters.  If it's a placebo effect and it's working, so what!!  Ha! 

Sassygal, do you think the Plaquenil stopped working or might it be that your disease progressed?  Just wondering.  Did they put you on anything else?

Maria

[sassygal]

Maria,

It's hard to say. Looking back it was probably doing something since now that I have been off it
for close to a year I am much worse than before I went on it.

The rheumy I had was going to add methotrexate to the mix and I had all the bloodwork prior to my visit. When I got to my followup visit, low and behold I was told my rheumy took a teaching position at a large university and she was replaced by a brand new, just out of school, nurse practitioner.

The NP told me that since my RF and some other labs had come back down to normal that they must have been "false positives" and took me off plaquenil and told me "you may end up with a fibromyalgia diagnosis".  I never went back. I moved out of the area anyway.

My PCP has all my rheumatology records from the doctor, and I am just waiting until I find a good rheumatologist that knows about sjogrens before I have her (PCP) put in a referral. I don't have the time, energy or money to waste on incompetents.

My feeling is that the treatment with plaquenil did help and brought the labs (RF & CRP) back down to  normal. Previously I had been positive for both labs over a 3yr period and by two different labs.

I have heard that it takes about a year to get plaquenil completely out of your system, so I guess it is now time to have my labs checked again and see if the are elevated. My PCP is willing to prescribe Plaquenil as long as I get my eyes checked routinely, but not methotrexate. I stayed off Plaquenil so as not to mask the problem when I have the rheumatoid studies done again.

I wish you luck and am glad to hear that plaquenil is kicking in for you! Just remember, everyone is different. We all respond to meds differently and some of us get good docs and some of us get bad docs. Take charge of your health and don't give up! Find what works best for you.

Gail

[wildforwater]

Sorry you are going through this, Gail. I also fired my young, just out-of-school, Rheumy who dismissed all my Sjogren's symptoms and diagnosed me, as a last resort, with Fibro. I was fine with that...at least something was causing all of this.  She then prescribed Cymbalta when I am already on Prozac.  I took it only once and had unpleasant side effects. Luckily, I thereafter Googled the drug and read the warnings of taking the two antidepressants together.  I called her right away and her response was:  "I didn?t know you were on Prozac."  Really!  It?s in my chart!  She then prescribed Lyrica, which I didn't want to be on and it didn't help anyway. That?s when I decided it really was time for a change.

I now go to a seasoned Rheumy who is also the Head of Rheumatology at a big hospital here in New Jersey.  She told me straight out that I did not have Fibro, I had Sjogren?s, and put me on Plaquenil immediately, even before ordering any blood work.  She said my symptoms were classic Sjogren's and even if my blood work came back negative, it was of no consequence...I still had Sjogren's.  I also have to have routine eye exams.  Had my baseline exam last week and so far, my eyes are great, if you don't count the extreme dryness, etc.  My ophthalmologist told me that chance of damage to the eyes from Plaquenil is so low that's it's of little concern.

I sincerely doubt you had false positives on your tests for three years!  That?s nuts especially when, clinically, you have all the symptoms.  Hope you find a good Rheumy soon.

Hugs,
Maria

[ARJ]

My rheumatologist prescribed Plaquenil as soon as the Sjogren's diagnosis came in -- mainly to help with my secondary vasculitis, which had been causing intense inflammation and bruising in my lower torso.  I noticed a change in the vasculitic inflammation within just a few weeks, and the benefits have pretty much remained the same since then.  I'm coming up to the six month mark of being on Plaquenil, and I don't notice my symptoms being less than when I just started on Plaq. If anything, the inflammation is a little bit worse. But that could be due to many other factors, like diet and exercise.

[wildforwater]

ARJ,

Being so new, I really don't know the reasoning behind much. It's kind of trial and error with me now, as with most of us I would guess.  I have cut way back on sugar and gluten but haven't given it up completely yet and I try to exercise through my fatigue and pain and ususally feel somewhat better afterwards.

I'm still not completely sure that my recent good days are because of the Plaquenil, but I hope so.  Truth be told, I'm fatigued and in pain today, but not as bad as it has been. Despite that, I'm riding my bike after work and will see how I feel during my ride and tomorrow. Again, trial and error.  Can't think of any other way to survive this disease.

Really hope you get some relief soon. 

Hugs,
Maria

[sassygal]

Maria,

You can actually ride a bike for 43 miles at one time??? Right now I am lucky to make it up and down one aisle in the grocery store!

I thought maybe I misread that, but wow, if you can actually do that keep on movin'! Kudos to you!

Gail

[wildforwater]

Ha!  Thanks, Gail.  I'm on a women's racing team and my "speciality" is time trials, so riding 43 miles isn't that hard for me when I'm feeling well.  I'm used to pushing my body to the max.

What led me to my Sjogren's diagnosis was that I was training and racing and doing 100 mile rides one day and the next I couldn't even walk up the stairs to my apartment.  I spent the following year pretty much on the couch so sick that I only showered every other day because I didn't have the strength.  This past January, I decided to get up off that couch and get my strength back.  I dragged myself to the gym and started taking spin classes and doing some strength training.  Some weeks I could only do it once; others three times, occasionally none,  but I kept pushing myself though the fatigue, pain and weakness, sometimes to the point that I thought I would vomit.

I woke up this past Sunday morning feeling the best I've felt in a year and a half and went with it. I had so much energy and decided to ride my bike with my club the 43 miles.  The fact that I could actually do it is what sparked my post about Plaquenil. Something had to be giving me this energy. Unfortunately, I've been pretty tired since but I got on my bike anyway after work today.  Did not have the energy I had on Sunday, so I rode easy.  Right now, I'm exhausted and my body hurts all over.  The test will be if all of this throws my body into a flare.  Keeping my fingers crossed that a few days or a week of rest will be all that I need.

Thanks again for the Kudos!

Maria