plaquenil

[Alderney]

Has anyone had to stop taking Plaquenil due to itching?  The first time I started it was a month before the itching started, mostly after a morning shower and at night but not as bad as the morning.  after a break of four months started again and this time it took a week to start itching! the only thing that stops it is anti-histamines.  Wondering if this is a reaction to the medication or something else, it really did help, but the itching made me crazy.

[litliwlowa]

Hi alderney

I've seen posted on the boards that some have had the itching reaction to Plaquenil and had to stop taking it. I suggest you call your pharmacist AND prescribing doctor about this itching.

Itching is listed as a more common side effect:

http://www.drugs.com/sfx/plaquenil-side-effects.html

Also, if you are on the generic form of plaquenil, as a sidebar some generics for me are problematic yet I can tolerate the brand form without issue.

Someone posted recently an article on one generic form made by a particular company that apparently has been identified as problematic (best I recall had to do with dose variations being inconsistent with stated dose, or something like that)

I can't find the article or thread where that was recently posted, but the company was Ranbaxy and the drug was hydroxychloroquine (generic Plaquenil). I actually see my rheumy today and will be having that discussion to switch to brand as my pharmacy dispenses the Ranbaxy generic hydroxychloroquine.

This I did find 2013: http://www.justice.gov/opa/pr/2013/May/13-civ-542.html

And Jan 23, 2014: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm382736.htm

[stillinshockwithsjogrens]

Yes, I had to stop due to intense itching, that wouldn't stop without weeks of steroid pills and spray. I'm scared try anything else at this point.

[litliwlowa]

Also, if you are on the generic form of plaquenil, as a sidebar some generics for me are problematic yet I can tolerate the brand form without issue.

Wanted to add this update on generic plaquenil. My rheumy advises that the Brand version is not available any longer. This drug has been around for decades so of course the patent is long expired.

I had concerns about the Ranbaxy generic Plaquenil (Hydroxychloroquine) which is what my pharmacy uses. Search engine Ranbaxy and there is quite a bit out there on this company out of India.

You may want to consider, if the form you are taking is from this company, seeing if pharmacy can obtain from a different company, or as my rheumy suggested call around to diff pharmacies and ask what from what company they obtain this specific medication.

Just a thought and it may not even apply to the form of this medication you are using. I personally am not having problems with the Ranbaxy "Plaquenil"

[DryGuy]

I'm fighting just to get started on this stuff.  At 32 just finishing all my doctorate training and a job lined up it'd be a huge waste for me to not be able to work from this all because people didn't want to start me on meds.  Or as the rheumy said the other day "I haven't deteriorated enough yet to make a clinical diagnosis"  talk about a morale booster.  No wonder I have the thoughts I have...

[slccom]

Get a new Rhuemy, DryGuy. They are our employees. This one needs to be fired immediately.

Sharon

[litliwlowa]

I'm fighting just to get started on this stuff.  At 32 just finishing all my doctorate training and a job lined up it'd be a huge waste for me to not be able to work from this all because people didn't want to start me on meds.  Or as the rheumy said the other day "I haven't deteriorated enough yet to make a clinical diagnosis"  talk about a morale booster.  No wonder I have the thoughts I have...

DryGuy

Wait a minute, you mean you're still having to fight that uphill battle just to have treatments based on symptoms??? Are you in a position to get yet another opinion on that?

I can't imagine what your rheumy's perception of "deteriorated enough" would be...lot of wriggle room there but geesh, even a "spit pill" would be a great start (salagen or evoxac)

Fire that one and hire another. Yes I know it gets really really old having to do the doctor rotation, but as Sharon stated, THEY work for US, not the other way around. And that one wants to box you in to his own perception of "deteriorated enough" which in no way is objective, rather a subjective judgment?

Fire him and try another - trying to recall I think your dominant symptom was dry mouth? Couldnt hurt to try an ENT in a pinch (ENT surgeons deal with salivary glands, so I can't fathom that an ENT couldn't prescribe rx for your dry mouth).  Just a thought

[DryGuy]

I have salagen and evoxac.  They are def better than nothing but from what I was before to now using these is a huge change.  But since January the symtoms have been piling up.  Dry mouth to dry eyes to dry sinuses to dry intestines to hair falling out to no sweating random joint pains.  He insists on a lip biopsy so I have one scheduled April 17 but he said "since you have only had 12 weeks of symptoms it probably won't be positive but we will see anyways"  I rebutted that if he thinks plaquenil is so benign why not just give it a go, he refused.  He said his preference would be to wait 6 months before the lip biopsy, I'm moving in June if I don't jump off a bridge first...  So hence why I'm getting it now.  He's rheumy number 3, rheumy number one couldn't care less because I didn't have RA or arthritis, Rheumy number two made me jumo thru hoops for plaq then refused unless I got a lip biopsy and it was positive.  Now rheumy number 3 is a SjS foundation Rheumy which I'm paying cash for because he is out of network and I haven't met my deductible. 

I've been trying to think about the future less because the more I do the less I can come to terms with the idea of having dry mouth/eyes/sinuses plus whatever shows up for the remainder of my life.  The hair loss is simply icing on the cake(if it were only that I wouldn't care)  A vibrant highly intelligent well accomplished 32y/o to this, depressed constantly thinking I'm better off not here anymore and having no idea how I'm going to enjoy life with the idea of having a dry mouth and eyes till the day I die.

[litliwlowa]

DryGuy

Hair falling out too? Has anyone checked your thyroid (I take it no early baldness in your family, I think that passes down through the mother actually)

You're still a vibrant highly intelligent well accomplished 32 two old, not even sjogrens can take that away from you.

But I just wonder, if maybe there's something going amiss in your endocrine system. Some of these AI's mimic each other and overlap in symptoms. Not suggesting at all maybe it's not sjogrens as could well be. But if there is something amiss in your endocrine system, merits at least ruling that out.

The hair loss is what clued me in. I have Hashi's AI. When my levels go hyPOthyroid, yuck I lose lots of hair. And yes, can have lots of dryness including the dry bum parts even with thyroid AI's. Just thought I would toss that out here justin case your doctors haven't considered that possibility.

Oh and on the lip biopsy? That's not a slam dunk definitive test either. I forgot the percentages of false negatives my rheumy told me but I think it's somewhere around 15% of sjoggies have negative lip biopsy.

I wonder if your PCP would consider Rx'ing Plaquenil for you.

And please don't jump off any bridges.

[DryGuy]

My PCP wouldn't give me salagen (because the side effects suck), my first two rheumy wouldn't give me evoxac or salagen. The second one finally gave me a 10 day supply on my second visit after I begged for it(for the second time).

I had thyroid tests done when this first started and everything came back normal, I wish that were the answer and solve able with some synthroid.  All the SjS stuff has come back negative 2x as well.  Inflammatory markers negative as well 2x. A full cancer workup minus a PET scan had all been negative. I haven't had a single swollen gland either.

Someone suggested lyme because I had a tick bite last summer and had negative ELISA and Western Blot but that's not 100% so i got a buddy to give me Hopkins recomendation for chronic and neuro lyme doxy treatment and am trying that. What do I have to lose?  No one else is doing anything for me.

I'm sorry to everyone who suffers from dry eyes and mouth, it's the most irritating symptoms ever. And all these people smoke pot and have cotton mouth all day. Same thing with the meth addicts they get "meth mouth" from the dry mouth, but they choose it. Craziness

I wouldn't jump off a bridge, I'd be much neater about it

[DryGuy]

I also know the biopsy isn't 100%, I'm simply continuing to jump thru hoops. Dr Steve Carsons told me the lip biopsy is around 20% false negative yet he insists I get it just like rheumatogist number 2.  It'll be a nice bday present to me 4 days before I turn 33. I get these symptoms the night of my 3 yr anniversary with my fiancé and a week after proposing to her and I'll have a lip biopsy for my bday  and my fiancé wonders why I'm so upset all the time.

[litliwlowa]

One day, DryGuy, you and she will look back on these days and somewhere find some humor in it when you're both sitting in your rocking chairs many years down the road.

Here's what my rheumy had to say about the testing for sjogrens and why he treats me even tho I am seronegative and lip biopsy was negative. In his opinion, the value of these tests is basically related to eligibility for clinical trials. Yep, and that sort of floored me actually. but truthfully, I don't want to be an experiment anyway.

Can't they at least wait until after your birthday for the lip biopsy? I suggest that, if it's possible to delay it for 4/5 days so you can at least enjoy your birthday. Search the boards on lip biopsies. Some have had an easy time of it, others not such an easy time with the biopsy. The ENT that did mine, for example, didn't rx antibiotic. Well, gee willickers, I was at urgent care a couple of days later with infection at the wound site.

You may well have no problem or complication with the lip biopsy. But if you can, at least enjoy your birthday first maybe? Justin case?

And maybe just for that one night - your birthday - you and your fiance set aside all the worries and concerns for one night and simply enjoy each other's company

@Alerney What's the latest with you? Did you have to stop the plaquenil? Or did the itching resolve? What your status on that?

[DryGuy]

The chief of oral surgery who is doing it doesn't even take new patients, I had to schmooze for an appt.  I took what I could get, also I have to go down south the following weekend to look at houses so no time is a good time.  When life gives you rotten lemons, well ur just screwed, or rather I'm just screwed.  Unfortunately it is what it is. 

I need to see your rheums because I thought seeing someone on the SjS foundation medical board would be less of an a*s than he was.  Maybe he didn't like that his skin was drier than mine.  Who knows.

I hope by the time I'm in that rocking chair there are better treatments for this and ways to regenerate salivary/lacrimal glands.  This way I haven't ripped my eyes out by then and still have a tongue to talk with. 

I am beginning to think of this disease as the "how to ruin someone's quality of life overnight" disease

[gold55]

"I thought seeing someone on the SjS foundation medical board would be less of an a*s than he was.  Maybe he didn't like that his skin was drier than mine."

That is funny DryGuy.  Just think of all the great sex you will have!!  If you were female with Sjogrens.....not so much 

I'm still pretty scared to take plaquenil but I can see where I'm getting so close to needing it.  Wish these Nsaids would help the pain!   

[stillinshockwithsjogrens]

Go to an opthamologist for your dry eyes.  Punctal plugs have turned my sahara desert dry eyes into wet eyes, thank goodness. 

We all deal with the dry mouth....if you can't get an RX for Evoxac or Plaquinel, ask your PCP.  Mine would have prescribed either.  I have found that being responsible for our health care is just that.  OUR responsibility.  And we have to fight for it sometimes, find a way around things to get it sometimes, do everything possible with everyone possible for it sometimes.  It's a job. 

I am more used to it now, but everything was daunting and devastating to me in the beginning.  Not so much now.  And yes, I'm going to find Rheumy #3 this year to treat me.  Good luck to you.

Things will get better.  There is a period of adjustment we go through.  We learn to navigate the health care system.  And you have a great load of information here, with people who have gone through what you are experiencing now.