Arthritis -- getting worse with plaquenil?

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mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 12/14/2009 8:52 PM (GMT -7)   
Hi,
 
I have some type of autoimmune arthritis - my rheumatologist hasn't officially labeled it yet, but strongly suspects crohn's related.  I started methotrexate when i first started having arthritic pain about 2.5 years ago and it's been pretty well controlled since then.  I'm pretty sure my crohn's was in remission since early August, but the past week or two I've been getting more crohn's symptoms (not a full blown flare yet, just not as good as I have been).  If I am heading into a flare and my arthritis is, in fact, crohn's related, that could explain things.
 
However, about 6 weeks ago I started plaquenil for something else (chronic hives) and had cleared it with the rheumatologist first (i'm still on methotrexate as well).  about 3 weeks ago I started waking up with stiff and painful hands more days than not.  Over the past 2 days, the stiffness/pain has started to spread.  I know plaquenil is suppossed to help with arthritis (at least rheumatoid arthritis), but given the timing, I can't help but wonder whether there's some connection.  I have an appointment to see my rheumatologist on Thursday, but I'm curious if anyone has had arthritis get worse with plaquenil.
 
Melissa

34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Plaquenil, Doxepin, Xyzal, Zyrtec, Zantac, VSL#3, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/14/2009 11:10 PM (GMT -7)   
There have been a number of people here who have had a worsening of joint problems after starting meds that should help their joints. Remicade has apparently caused this (no proof - just a few people with that result) and maybe others - I can't recall other meds specifically. It is not what you would expect, but it seems to be real.

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 12/15/2009 6:18 AM (GMT -7)   
Thanks Keeper.  Not that I wish that anyone gets worse, but I'm glad to know I might be on to something.
 
Melissa
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Plaquenil, Doxepin, Xyzal, Zyrtec, Zantac, VSL#3, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 12/15/2009 6:57 AM (GMT -7)   
Hi Melissa,
I'm also on methotrexate and sometimes take plaquenil (I take it to prevent photo-sensitive/toxic reactions so only take it April-September when the UV is high) I've just started taking it again as I'm off abroad for Christmas and I have noticed that in the mornings my fingers are stiff (I also have arthritis but thats been in remission for years) it goes fairly soon after waking once I've been moving around a bit and had a nice hot shower! I think maybe its due to fluid settling in the joints over night and it just needs dispersing. But other than that I haven't noticed any affect on my Crohn's or joints otherwise. The timing does seem suss though, see what your rheumy says! Are you supposed to be on it for long?
 
 


mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 12/15/2009 11:40 PM (GMT -7)   
Thanks Lil - knowing that someone else is going through something similar gives me hope that my rheumatologist won't look at me like I have 2 heads when I go in complaining of pain after starting plaquenil :-).  My pain lasts a couple of hours in the morning, but the past few days I was on a business trip and eating out all the time....as a result my salt intake was higher than normal and I noticed the pain returning in the evening, so there definitely could be something with excess fluid around the joints.  I don't have a definitive time line for getting off the plaquenil.  If the hives stay under control, depending on what order the hive meds are removed, it could be anywhere from 6-12 months.  If the rheumatologist agrees that the plaquenil is aggravating my arthritis, I'll talk to my allergist about getting off it asap (he has one more med up his sleeve, so no point staying on something that's aggravating arthritis).
 
I hope your pain stays minimal and that you have a great holiday!
 
Melissa
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Plaquenil, Doxepin, Xyzal, Zyrtec, Zantac, VSL#3, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 12/16/2009 1:36 AM (GMT -7)   
Thanks melissa! Yeh looking forward to it, if anything a bit of sunshine and warmth will do my joints a world of good!
Ah at least theres another possible med - hopefully that will cause you much less problems and sort those hives out for you!
 
 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 12/16/2009 7:32 AM (GMT -7)   
Oh my gosh - that happened to me the summer I was 19! I took plaquenil and started waking up like I had been in a fight all night long. I was more stiff and sore than I had ever felt in my entire life. My arthritis became SEVERE and actually spread to many more joints. Finally my rheumy at the children's hopsital thought to take me off of it, but it was too late by then. I actually have deformed wrists and severely deteriorated bones in my hands because of it. That was 18 years ago before anyone was sue-happy, so there was nothing done and I was left to recover on my own. To this day when I have to go in for a treatment or a procedure when they ask me if I'm allergic to anything I list plaquenil. I hate that drug. Did way more harm than good for me.

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 12/17/2009 7:27 PM (GMT -7)   

Stef, I'm sorry you had such bad consequences.  Hand deformities have been a big fear for me.  Rheumatoid arthritis ravished my grandmother's hands and is starting to affect my mom's hands as well - seeing what it's done to them can be heartbreaking.  My grandmother ended up getting her fingers straightened on one hand.  Have you looked into something like that?  The surgery didn't result in perfect hands, but it did allow her to regain self-sufficiency on many daily tasks.

 

I saw my rheumy today.  I asked her about a connection between the plaquenil and the pain and she thought it was highly unlikely since I’m on half the dose she usually prescribes.  She was reluctant to take me off of plaquenil since she wasn’t the one prescribing it and it is keeping the hives at bay.  The plan of action is to take a low dose of steroids for a week or two (I’m not a big fan since I had complications from steroids before, but she the risk is minimal and wouldn’t let me talk her out of it).  If the steroids don’t stop the flare, she’ll switch me from oral to injectable methotrexate and will increase the dose if necessary.  If that fails, she’ll add in sulfazine.  If all of the above fail and I get progressively worse, she’ll probably start me on Cimzia.  For now I'll play be her rules, but if i start seeing damage or feel that i'm getting markedly worse, i'll call the allergist and ask him if i can stop the plaquenil.

 

The other bit which I found a little disconcerting was that she had been leaning towards a diagnosis of crohn’s related arthritis, but based on current symptoms she’s leaning towards a mix of rheumatoid/pseudo-rheumatoid and psoriatic.  (My grandmom and mom never tested positive for RA even though they definitely have it, so being negative for RA factor doesn’t mean much in my case.)  For treatment purposes the type doesn’t matter so much, but each type has a slightly different pattern of damage.  Having seen the damage RA can do, I was really hoping it wasn’t RA.  It’s not an official diagnosis yet, so I’m still holding out hope that it’s another type.

 

Melissa


34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Plaquenil, Doxepin, Xyzal, Zyrtec, Zantac, VSL#3, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03

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