Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Going off Plaquenil


  • Please log in to reply
35 replies to this topic

#1 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 25 February 2013 - 05:01 PM

Hi Everyone,

 

Friday night, Gareth's primary care doctor (primary care physician) called to say he had a long discussion with my son's rheumatologist.  She wants him to decrease the Plaquenil to 3 days/week (M, W, F) instead of daily.  She feels the Plaquenil may be cause of his chronic pain since he's been on it for almost 6 years....muscles, joints, headaches, etc.  In the past, she said he would always have to remain on it to prevent the Sclero from coming back.

 

So, has anyone else gone off Plaquenil and did your issues come back in full force?  I guess this is another one of those *wait and see* situations where they are *practicing* medicine.  :emoticon-dont-know:    I feel like I'm playing Russian roulette here with his body!!

 

Take care, Everyone. 

 

Margaret



#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 25 February 2013 - 07:10 PM

Hi Margaret,

 

Well, this is sort of a new one for me. Headaches are a listed side effect of plaquenil, but I haven't heard about it causing muscle and joint pain before. You might want to call his pharmacist and see if those are known side effects of plaquenil, for a more comprehensive answer than I can give. 

 

I was on plaquenil for years and had to go off of it after it caused worsening psoriasis. Even then I had to ease my way off of it very slowly, and then I also had to start new medications and treatments to deal with the increased pain and fatigue which worsened after I went off it.  Happily, going off plaquenil quelled the worst of my psoriasis, so the overall trade-off was eventually worth it for me.

 

It wasn't very clear from your post whether it was the primary care doctor or the rheumatologist who wants him to decrease the plaquenil. Overall, its my impression that plaquenil lessens pain for most of us; I don't recall hearing anyone around here complaining that it worsened their pain before. But, I may be wrong, I often am!, and I have no medical training at all.

 

It might be that plaquenil has already helped him about as much as it can.  I suppose you never know for sure until you see if he's better or worse, going off of it.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 25 February 2013 - 11:22 PM

Hi Margaret,

 

I'm afraid I can't give you any information from personal experience, as I've never taken that particular medication.

 

However, I have included a link to Plaquenil to give you some more general information, which I hope you'll find helpful.

 

I do hope that Gareth will feel better on the lower dose of Plaquenil and that the revision of his medication will help with the chronic pain with which he's suffering.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 28 February 2013 - 11:55 AM

Well this is interesting, since Plaquenil is prescribed to help with the pain and fatigue etc. I've been on it for oh goodness let me think...13 years I guess, and at the very beginning of being diagnosed when I was having a problem dealing with any of it, it bugged me to be on it, so I tried to decrease dose and within 2 days I could barely move, so went back to regular dosage. The only reason my Rheumy would consider taking me off of it, is if I started to have eye damaged, which is it's most serious side effect.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Margaret

Margaret

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 28 February 2013 - 02:50 PM

Hi Sweet,

 

How are you doing?  You don't chime in very often...miss ya!!

 

I'm trying to get Gareth into Dr Medsger, but PA is switching insurances and it will be a while to do so.  I wanted the rheumatologist to raise his Plaquenil since he's showing + SSA, + SSB, and + Jo-1....all while being on the Plaquenil!!  She says that since his ANA came back negative, his body might be reacting to the Plaquenil.  Muscle weakness/pain is listed as an adverse affect for it. This is a trial period...a wait and see what happens period...a *practicing* medicine period!!.  :emoticon-dont-know:

 

Take care, Everyone.

 

Margaret



#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 02 March 2013 - 11:19 AM

Hi Margaret,

 

Is Gareth doing any better with the lower dose yet?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Margaret

Margaret

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 04 March 2013 - 06:39 PM

Hi Shelley,

 

To be honest, I can't tell.  He's still in pain but I wouldn't say it's any better or worse.  Been researching doctor website; I know, wrong way to go, but I Googled *chronic pain in arms, legs, hips, lungs, and eyes*.   Guess what popped up repeatedly: Fibromyalgia.    :(  :angry:  

 

We have an insurance mess right now to deal with since Pennsylvania is switching their Medicaid program around and Gareth's secondary insurance is through them.  We will have to find numerous new specialty doctors -- major bummer!!  One of those will be a new rheumatologist -- second major bummer. 

 

I did hear back from Dr Medsger's nurse and she said to call to schedule an appointment when we have things in order, insurance wise.

 

 I'll keep you all posted.

 

Take care, Everyone.

 

Margaret



#8 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 05 March 2013 - 03:56 PM

Hi Margaret,

I'm doing okay. Always trying to balance life and health and I fail at it the majority of the time! I WANT to be around here more, but do I get it done? Not always.

I hope Gareth is doing okay. This whole Scleroderma thing is still such a mystery for the most part.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 goodluckkitty

goodluckkitty

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 18 March 2013 - 05:07 AM

Hello,

New here. I won't type much because I have some fingertip ulcers and I feel like I just got an extreme manicure at a POW camp.

I went off all my meds back in September as part of a reactionary health kick after some troubling non-sclero issues. Quit Plaquenil, Procardia, Prilosec. The three P's, which I'd taken for 9 years. Still off Prilosec after a two month battle with rebound hyperacidity. Otherwise, I did poorly off my meds. I was okay when I first quit taking Plaquenil, but gradually I saw an increase in those "non-specific" symptoms (felt like I had flu) and my sicca symptoms went berserks. I was off Plaquenil a total of 3 months before the doodie really hit the fan and I drug myself to the rheumatologist with recurrent infections of all my mucosa-ish orifices, corneal abrasions, fingertip ulcers, livedo reticularis....none of which I had in the previous 9 years.

At this point, not only am I back on the Plaquenil, but my dose has been doubled. I feel so crummy that I'd take almost any med the doctor can sling at me, and I'm an all natural, organic loving no-chemical ingesting hippie girl.

Of course, everyone is different and responds and reacts differently to medicines. I only share my tale becauseI think people should be aware that there are always inherent risks in quitting any med. Please also keep in mind that I am super angry at myself and bitter and blaming myself for all my current woes!

I hope it all works out.

Best wishes,


Kitty



#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 18 March 2013 - 11:26 AM

Hi Kitty,

 

Welcome to Sclero Forums!  It is delightful to have you join us. I think your experience with going off plaquenil is very helpful for the rest of us to know about.


You can let go of being angry at yourself, if you want.  You didn't know for sure, ahead of time, that your health would worsen when you went off of plaquenil, did you?  Who knows, in the interim your body could have changed completely and you might have been okay, so its possible your great idea would have worked. Although, plaquenil is a DMARD (a Disease Modifying Antirheumatic Drug) and now at least you have the comfort of knowing that it was, indeed, modifying your disease.  Hopefully it will kick in again soon, but it obviously has more work cut out for it, this time around.

 

For others out there, remember that it is not okay to discontinue DMARDs on our own. If we think it is such a great idea to discontinue any of our meds, especially DMARDs, then our idea must be good enough to explain and defend in a discussion with our doctor, right?  Then we can also benefit from their advice in how to go about it. Their method might involve a very slow taper so that they can monitor us and respond quickly if any of our symptoms start getting worse.

 

Kitty, you could just modify your description slightly so it is in line with unavoidable lifestyle changes, to "I'm an all natural, organic loving no-unnecessary-chemical ingesting hippie girl." 

 

As I actually experienced the real hippie years first-hand, I can tell you that there were tons of unnecessary chemicals consumed by real hippies, so chemicals themselves are actually a very hippie thing! :terrific:

 

As you've discovered the hard way, you might find a few well-chosen chemicals (medications or even supplements) to be necessary from time to time, or even every day.  But you can still avoid all the unnecessary ones to bolster your health, as best you can.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 18 March 2013 - 12:30 PM

Hi Kitty,

 

Welcome to these forums!

 

I've never taken the three "P's", but when I was first diagnosed with Scleroderma and was told what strong medication I would be taking I was horrified (this is the person who pre-Sclero wouldn't even take a pain killer for a headache!) However, having interstitial lung disease which was galloping on at a terrific rate, I very soon realised that if I didn't take the strong medication I would probably die, which does tend to concentrate the mind wonderfully!! ;) (My liver has never really forgiven me though!) I was very fortunate as the 6 IV infusions of Cyclophosphamide which I was given were very successful and the medication I take now ensures that my quality of life is good, so in my case it was worth it.

 

Like Shelley, I also experienced the hippie years first hand! ;)

 

I do hope that you will soon feel better and now that you've joined our community, please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#12 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 18 March 2013 - 06:48 PM

Plaquenil didn't seem to work for me when I tried it.  There are of course other medications out there that perhaps Gareth would do better on.

 

I was put on methotrexate instead, and didn't really notice much of a change, from what I could tell.  Then I started wondering if maybe it was helping a bit with the joint pain (although it did nothing for fatigue for me).  Then my rheumatologist put me on prednisone (a couple of months ago) with a taper-down dosage.  I noticed when I was on the highest dose, my fatigue seemed to have lost it's edge, which was nice, and my joint pain decreased a lot, but as the dose went down, my fatigue started coming back.

 

So I was able to get back on the top dose again for now, but will have to wean down again over the next few weeks, because she doesn't want me on it long term.  I've now just started azathioprine, which she said should help with the fatigue and muscle weakness, but I've gone off the methotrexate for now.  If the joint pain comes back, I may go back on that.

 

So maybe one of those might be helpful?  Although you have to get monthly bloodwork done to monitor blood cell count and liver function, so they can monitor if the meds are affecting either of those and stop it at the first sign of any issues.

 

 



#13 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 18 March 2013 - 07:20 PM

Hi All,

 

I was interested in Amberjolie's comment about muscle weakness.   I seem to remember she had some tests done for Myositis? I think.   I wonder just how many of us have muscle weakness which is a real problem.

 

I know I am a fair bit older than many of you, but the muscle weakness has always been there.   I could cope when I was younger but now it is becoming a real disability.   Nobody I have asked here can explain it and I guess that probably you all will say the same.   At times I think I am just not trying hard enough but when I do (try harder) I just get exhausted more quickly.

 

I suppose this is just developing into a rant :crying: and I don't really expect any sort of a solution to turn up, but I guess I would like to have somebody to share my woes with.

 

Best wishes from the upside down side of the world.

 

Judyt



#14 Margaret

Margaret

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 20 March 2013 - 03:57 AM

Hi Everyone,

 

Kitty -  welcome to the forums and *thank you* for your input.  My son is special needs and doesn't communicate verbally,  so I come to this site to TRY and find out what's going on!!  He started this journey 6 years ago and also receives IV Ig infusions (monthly) due to immune deficiencies.

 

Removing the Plaquenil to 3 days a week hasn't take away the pain. Due to new insurance protocols in our state, we have had a month of switching doctors  (not all his doctors take the new insurance)  and he will now have a new Rheumatologist.  I also have an open invitation to Dr Medsgar's, a Scleroderma specialist, in Pittsburgh. 

 

I will keep you all up to date on what the new doc says/thinks.  I've come to realize that many of these may be overlapping issues and one doc says Fibromyalgia while another is thinking Rheumatoid.....all on top of everything else he has, the UCTD and SICCA, and immune deficiencies.

 

Take care, Everyone, and *Thank you*  for all the input!!

 

Margaret



#15 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 20 March 2013 - 02:12 PM

Hi Judy,

 

I may be wrong, I often am, but I think muscle weakness is fairly common in systemic scleroderma. If you search our main site, you'll see that "exercise intolerance" can be caused by many things associated with scleroderma, including fatigue, fibromyalgia, heart, thyroid, and lung problems as well as scleromyositis (when scleroderma overlaps with polymyositis).

 

I think it is normal for many of us to struggle with weakness issues. There can be such a fine line between doing what we can, and doing too much, and it can be almost impossible to figure out where that line is, especially as I suspect the line itself moves around from hour to hour, from day to day, and from week to week.  Or should I say, weak to too weak?

 

Although it's definitely not "in our head" when we have weakness, we can still use our head to try to work with it, or around it. I've found that just because I can't do something one day, doesn't necessarily mean that I can't do it the next, because my strength and endurance levels vary so much.  

 

It took me over six months to build up to doing 10 toe touches a day. That was a very worthwhile endeavor, because now I can get an idea each day of how much I can get away with, by how impossible, painful, difficult, or easy it is to do them. If its easy, hooray, I can try doing a bit more activity than usual.

 

Scleroderma is the worst form of arthritis. So if we can find an activity that we can use as a bellweather for the day, like the toe touches work for me, then we have more information to work with in planning -- or revising -- our activities for the day.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 20 March 2013 - 04:09 PM

Welcome Kitty!

Thanks for the update on Gareth, Margaret!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#17 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 20 March 2013 - 05:08 PM

Hi judyt,

 

The rheumatoloist is saying I have myositis, although technically a proper diagnosis needs a muscle biopsy, which I decided not to do.  But my CK levels were high (should be 160, I'm at about 1200-1400, which is considered mild, because myositis can bring you to 12000), and I had an MRI which showed fasciitis.

 

But even though my CK levels aren't terribly high (they climbed to that level but kind of plateau'ed there), she did some muscle strength tests, and saw that I had a significant amount of weakness.  In my shoulders, and my abs (which surprised me, I didn't realize I was so weak there).

 

The prednisone has helped somewhat, but we'll see what the azathioprine does.

 

Shelley - interesting benchmark, the toe-touching.  I should try to figure something that works for me (toe touching will be an impossibility for me - I couldn't do it when I was healthy and in good physical shape either!  ;) )



#18 Margaret

Margaret

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 20 March 2013 - 05:48 PM

<<Scleroderma is the worst form of arthritis>>

 

Shelley....is it really considered an *arthritis*?  My Dad had Rheumatoid Arthritis and my Mom has Gout in her left thumb/wrist.  Just wondering?

 

Margaret



#19 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 20 March 2013 - 09:02 PM

Hi,

That's interesting!!   I just did 10 toe touches :yes: , that wasn't too hard, but once upon a time I could put my palms on the floor and I can't now!!

 

Amberjolie, yes I thought I remembered about the Myositis and you deciding not to have a Muscle Biopsy.   I was able to "show off" to an Haematologist I consulted recently that I am almost incapable of climbing stairs.   Her consulting rooms are in an inner city 2 up 2 down house and being tall and narrow it has at least 15 maybe 20 steps in a flight.   It was a mission for me to get up there.   At the end of the consult she said she would get my CK tested and it came back as within normal range.   The thing is that I remember being unable to keep up with my friends when we were sightseeing in 1968 when I was only 24.   I was as fit as I would ever be at that time.   It's just ME I guess.

 

Yes Margaret, Sclero is one of the very many diseases which are grouped together as Arthritis and that is why the main Practitioner we consult is a Rheumatologist.   It also means that, here at least, the support people ones Doc would recommend are so busy with all the other more common ailments that they have never even seen a case of Scleroderma unless it includes Sclerodactyly.   Even that is very rare.

 

Ah well, we can just soldier on and try to do 10 toe touches a day and hope for the best.

Judyt



#20 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 21 March 2013 - 06:36 PM

Hi Margaret,


Yes, like Judy said, scleroderma is one of the diseases grouped under arthritis.

 

There is a PDF from Johns Hopkins about Scleroderma that you might like. On page 3 it says,"The “arthritis” of Scleroderma is different from the other types. It hurts and causes stiffness for long times without much swelling. Fibrosis of the capsule of the joint can happen and restrict motion of the finger or joint. What You Can Do:Usual anti-inflammatory medications may not be as effective."

 

You don't need redness and swelling in order to be suffering from the joint pain (arthritis) of scleroderma.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.