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Sjogrens Topics => Living With Sjogren's => Topic started by: mshistory on June 14, 2012, 08:02:18 AM

Title: Quitting Plaquenil Take Two
Post by: mshistory on June 14, 2012, 08:02:18 AM
Now that I've been on Imuran for a few weeks, I'm going to try going off the Plaquenil again. I've read generic Plaquenil can cause skin rashes - I wonder if it's the cause of some of mine? - and it rarely causes bronchospasms. All of my pulmonary problems started in the last year since I've been on Plaquenil...

Last time I tried to quit the Plaquenil, my joints started swelling soon after, but I really want to see if the Plaquenil is causing more problems than actually doing any good, so wish me luck!

(P.S., I have my rheumy's approval to go off the Plaquenil  ;D)
Title: Re: Quitting Plaquenil Take Two
Post by: lolo1979 on June 14, 2012, 12:34:06 PM
Good luck!  Do keep us posted, as I am considering weaning down and trying to go completely off too.  My goal would be to get that done in the next 1-2 year period.  I am of the same mindframe as you - wondering if it's causing some of my new ailments that have cropped up coincidentally since I started it. 

My new issues are hair thinning, IBS like problems and a thumb tremor. 

But, like you, I think I'll have to replace it with another medication.   Methotrexate is what my rheumy is recommending.

I hope you do well without it!  I'll keep my fingers crossed for you.
Title: Re: Quitting Plaquenil Take Two
Post by: Ark mom on June 14, 2012, 02:03:23 PM
I, too, am wishing you well!  I hope the imuran takes care of your symptoms and that you don't have to be on the Plaquenil, too.   Good luck! 
Title: Re: Quitting Plaquenil Take Two
Post by: Skylar on June 14, 2012, 04:26:24 PM
Good luck and please post how it goes. I'm on both Imuran and Plaquenil so I'm very curious about how it works out for you.
Title: Re: Quitting Plaquenil Take Two
Post by: Cdbhappy on June 14, 2012, 06:20:47 PM
I am glad you are trialling off plaquenil, and with doctor approval. Let us know how it turns out.
Best of luck
Cdbhappy
Title: Re: Quitting Plaquenil Take Two
Post by: mshistory on June 14, 2012, 06:41:22 PM
Thank you everyone! I'll keep you posted on how it goes!
Title: Re: Quitting Plaquenil Take Two
Post by: evamarie on June 22, 2012, 06:45:23 PM
Yes, please let us know how it goes.  I would love to come off the Plaquenil.
Title: Re: Quitting Plaquenil Take Two
Post by: artsyamerican on June 22, 2012, 06:59:01 PM
I hope you get positive results.  I just quit Methotrexate and most of my side effects are gone now.  I know the pain and stiffness will return 10 fold but...I don't care! Good luck!
Title: Re: Quitting Plaquenil Take Two
Post by: gold55 on June 22, 2012, 07:30:26 PM
Good on you MsHistory!!  I sure hope going off Plaquenil works for you.  I think it would be wonderful if you could lessen your symptoms and your pill intake.  I will be crossing everything on my body that can be crossed for you!  Ha!
Title: Re: Quitting Plaquenil Take Two
Post by: smallfry on June 22, 2012, 10:58:18 PM
Keeping my fingers crossed hope that it all goes well for you.
Title: Re: Quitting Plaquenil Take Two
Post by: mshistory on June 23, 2012, 06:21:09 AM
Thank you everyone!!! I have been off the Plaquenil for 9 days now and so far, none of my symptoms are getting worse. I do think the Imuran must be helping in some respects since my joints have not swollen and when I stopped the Plaquenil, I also decided to try to stop taking Relafen every evening. My knees and fingers still hurt but it's completely bearable right now without the use of pain medications.... so yay!!!

My lungs and breathing are still problematic, and I got the malar rash looking thing on my face to clear up with the Imuran and it's been replaced with a rosacea rash that will NOT go away!! Geez, it always seems if we can get one issue to improve even a little, another one takes its place  :)

My rheumatologist said it takes up to six weeks for the Plaquenil to clear the system, so hopefully, I'll continue to have positive updates!
Title: Re: Quitting Plaquenil Take Two
Post by: CindyD on June 23, 2012, 07:09:24 AM
Good Luck for sure!!! Wishing you all the best! ;) Im going to see my Rheumy in a month and I dont know what meds I SHOULD ask about.... they seem to all have their own issues. LOL  Best of Luck!!! :)
Title: Re: Quitting Plaquenil Take Two
Post by: slccom on June 23, 2012, 01:48:23 PM
CindyD, please don't assume that because some people had issues with a particular medication you will. I believe that the majority of us take our meds without problems; they don't post about having no problems. And the consequences of NOT taking meds can be far, far worse than taking them.

Plaquinel has been giving me my life back. I'm getting my home reclaimed from utter disaster to just disaster, and progress is ongoing.

Sharon
Title: Re: Quitting Plaquenil Take Two
Post by: gold55 on June 23, 2012, 04:52:34 PM
My Mom is 82 and very ill and they just recently put her on Plaquenil!!!!   She's already on 23 pills per day but she pops that 400 mg dose each day and has no complaints!!!  I couldn't believe it but she's bound and determined something has got to work for her RA pain!  I can't wait to hear about her progress :)
Title: Re: Quitting Plaquenil Take Two
Post by: Patze on June 23, 2012, 06:53:11 PM
Good luck MsHistory!



Patze
Title: Re: Quitting Plaquenil Take Two
Post by: gurs on June 24, 2012, 04:17:55 AM
I think we are all looking for that miracle drug..the one that helps with the dryness, joint pain, fatigue...everything. Ive learned that most of them, including plaquenil, are really more of a preventative..I learned the hard way quitting plaquenil..months later, everything blew up including all my CNS symptoms and I never recovered. We dont have many options in terms of medications, and all of them have side effects in some way. For those who can tolerate plaquenil, I would stay on it. We have NO idea what is going on in our bodies, even though we may feel well enough to function, we have no clue on the damage that is going on.

Also, many might want to try another manufacturer of plaquenil, as I had heard some of the generics dont work, and cause alot more side effects than others. If you can get the name brand, that is the best my Dr had said. But most of us cant afford that either?

Glad the imuran is working well so far....hang in there.

Gursie
Title: Re: Quitting Plaquenil Take Two
Post by: mshistory on June 24, 2012, 08:37:38 AM
I agree, Gursie - all of these medications have side effects and risks, but it is scarier thinking of what our own bodies are doing to us without the medication!! I'm convinced my body just hates me. I don't know what I did to it to make it so ticked off at me!  ;D
Title: Re: Quitting Plaquenil Take Two
Post by: gurs on June 24, 2012, 11:04:45 AM
Yes, I dont like medications either and take alot of natural supplements to help lessen some of my symptoms, but they dont always work to modify the immune system either, so medications might be needed...in alot of our cases.

Yes, my body hates me too...flips out over everything that goes into it. Its like a hypersensivity thing. I think our bodies are responding to it and attacking it..like an allergy?

Gursie