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Stopping plaquenil


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#1 Margaret

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Posted 07 March 2015 - 02:14 AM

Hi Everyone,

 

I am in a  worrying mode lately due to changing insurances, etc.  I am curious as to whether anyone has stopped taking their meds for their scleroderma, UCTD, etc?  Has anyone stopped taking their Plaquenil and, if so, what happened?  I know they advertise on TV that these meds can depress the immune system, which Gareth already has Ig G  deficiencies and an MBL deficiency.  It seems like a vicious circle that we have gotten in to with stopping the UCTD and beefing up his immune system with the IV Ig infusions.  I am beginning to wonder if his immune system would be stronger without the Plaquenil ?  He is such a hard stick to get the IV in,  and the past couple of times, it's been 2-3 sticks before hitting a good vein. He's not a happy camper when held down and they root around to get the needle in.  Just curious..............

 

Have a good day,

Margaret



#2 Joelf

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Posted 07 March 2015 - 04:28 AM

Hi Margaret,

It's interesting that you've brought this subject of stopping Scleroderma medications, as I have been in a similar position regarding the Azathioprine I take.

I have to undergo bi lateral hip replacements (one at a time) and upon learning that I had been taking Azathioprine for the last five years, the surgeon who will perform the operation was unable to go ahead with it whilst I was taking immunosuppressants, for fear of my contracting an infection and then being unable to fight it off. So it was necessary for him to contact my consultants to ask if it would be possible for me to discontinue with it a few weeks before I had the surgery. I won't bore you with all the communication and administration problems I had with my various hospitals, not made any easier by the surgeon not giving my consultant the correct information :rolleyes: but eventually I managed to obtain the necessary permission to discontinue the Azathioprine until after my operations.

I must admit that so far I haven't noticed any flare up with my lungs, but because I am so incapacitated by my hips, I'm unable to do any violent exercise, so perhaps it's not as noticeable as it would be, were I exercising normally.

I wouldn't suggest that you stop the Plaquenil without consulting Gareth's doctors, but perhaps you could ask if it could be discontinued at your next appointment and see what the doctor thinks. Also, some medications can be discontinued more easily than others; to stop or even reduce steroids, for instance, takes a much longer time, as they should never be stopped suddenly and reducing them should only be done over a long period.

Kind regards,


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#3 greypilgrim256

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Posted 08 March 2015 - 02:07 AM

My understanding is that plaquenil is a very mild medication and doesn't exactly suppress the immune system.  It is more an immune system regulator.  It is a very widely prescribed medication and considered critical for long term use in patients with connective tissue diseases.



#4 Margaret

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Posted 08 March 2015 - 06:37 AM

Hi Jo....I know I have had these feelings before about pulling him off the Plaquenil.  Seems like every time he has a bad episode of *whatevers* I start to think what I can do to make his life better.  He has chronic leg pain but X-rays are all normal. He's *so tired* yet seems to get a good nights rest.  Perhaps, these are just symptoms of the UCTD and the Plaquenil  is  lessening them.  The vein issue, I am not sure about....is that from the connective tissue disease, too?  I cringe when they have to dig in the upper part of his arm in order to do the monthly IV Ig.  Last month, they went from a 22 to a 24 size needle, just so they could stay in the hand.  I have asked his rheumatologist in the past and the answer was a definite *NO* but I would go and find a second opinion if I thought it really should be stopped.  I just don't know.

 

As for hip surgery,  Gareth has 5 pins holding his right hip together.  He had to have surgery, at age 15,  because his hip socket was so eroded.  Others who have had hip replacement say it's the best thing that ever happened to them.  To be pain free is a great reward!!

 

Take care, Everyone.

Margaret



#5 Joelf

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Posted 08 March 2015 - 11:23 AM

Hi Greypilgrim,

 

I've never taken Plaquenil, but it's quite likely that it would not have been a problem had I been on that medication prior to hip surgery; the problem with immune suppressants such as Azathioprine is that the surgeon was concerned that if I had such invasive surgery as hip replacements, I would be unable to fight off any infection after the surgery. Believe me, if there had been any other way to remain on it, I would have done, as the whole discontinuing process has been a total nightmare from beginning to end and trying to get the various hospitals to liaise with one another has tried my patience to the extreme (if I wasn't so determined, tenacious and desperate... it wouldn't have happened!! ;)  :blink: )

 

Hi Margaret,

 

I am looking forward (in a strange way) to the surgery; as you say the relief from the pain of avasular necrosis (AVN) is going to be wonderful and I'm hoping that I will be able to go back to my active lifestyle (albeit after a suitable convalescence) even if I won't be able to do quite as much as I did before, for at the moment I'm actually finding it hard to get around at all.  :(

 

I know we've had other members who have a similar problem to Gareth when it comes to inserting needles into their veins (Amanda's great blog The Nurse and the Cannula is a case in point) and I can understand that it must be so awful for Gareth to have repeated attempts to insert needles into his veins and equally awful for you as his mother to watch them trying to do it!

 

Kind regards,


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#6 Amanda Thorpe

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Posted 08 March 2015 - 02:46 PM

Hello Peggy

 

Plaquenil is included in the class of drugs called DMARD (disease modifying anti-rheumatic drug) and is actually classed as an antimalarial drug not an immunosuppressant. It is also used to treat Lupus, usually with immunosuppressants, and Rheumatoid Arthritis. Plaquenil has potentially serious side effects such as permanent dark skin plaques, which resemble black and blue marks as well as toxic retinopathy.

 

It is certainly a very serious drug and its continuous use worthy of review but if you stop it (titrating down and off) would not the symptoms it suppressed reappear to trouble Gareth?

 

Take care.


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#7 Shelley Ensz

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Posted 09 March 2015 - 11:18 AM

Hi Margaret,

 

That's an excellent question you ask regarding plaquenil. As it happens, plaquenil is not an immune suppressant, and it does not make people more susceptible to infections.  Rather, it is a disease-modifying drug.  In addition to ameliorating some connective tissue disease symptoms, it has actually been shown to increase longevity in lupus patients!

 

Best I can tell, plaquenil does not affect the veins, except perhaps in a positive way as it reduces the incidence of blood clots in people with antiphopholipid antibodies, and can be helpful in treating vasculitis. See Anti-Malarial Drugs by Johns Hopkins.

 

I was on plaquenil for years, but had to go off it as eventually it worsened my psoriasis.  I had a very hard time going off plaquenil, because I got a lot sicker each time. You're supposed to be able to just stop it; its not like its addicting.  But I simply could not, so I ended up very gradually tapering, and then increasing again when I encountered problems, and gently decreasing again, and then getting other meds to handle the gap it left. Overall it took me six months to transition off it, and to this day, I still wish I had been able to stay on it. It is pretty amazing for being so cheap!

 

Difficulty with veins is often caused by inadequate hydration. It can help a lot to start drinking more fluids the day before any treatment or blood draw, and to limit dehydrating fluids or medications, such as caffeine (which is in nearly all sodas), to have a little bit more salt (or not restrict it quite as much the day before), and to cut back a bit on any diuretics (like lasix) on the day of the procedure (with doctor's permission, of course).

 

Our blood is made primarily of water, and when we are even temporarily low on fluids, we literally have less blood, making our veins shrink and become even less accessible than usual.  I find it helpful to do all of these things, and if it still looks like it may be difficult, to have a heating pad on the area for about five minutes beforehand. See Six Tips for Good Blood Tests.

 

Also, my personal experience is that there can be a huge difference among techs!  Some of them just have the knack for difficult draws, and when I find a gem in any particular office, I get their name and try to request them the next time.  The desk will tell you it doesn't matter, that they are all the same -- but in my opinion, that is absolutely not true.  I do believe in the existence of Vein Whisperers, having been magically blessed with them occasionally.  So part of the problem might be the tech, because some of them are lots better than others when it comes to doing veins that are not the customary, easy draw.

 

 

:emoticons-group-hug:


Warm Hugs,

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#8 judyt

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Posted 09 March 2015 - 01:36 PM

Hi Margaret,

 

There have been a few items in this thread which I have been inclined to comment on.

 

First of all your comment about veins.   I have severe venous incapacity particularly in my legs and I have been told that it is to be expected with Scleroderma, and maybe with UCTD as well.   I have no skin hardening so can't blame that for the problems Phlebotomists have with me.   As a sideissue, I worked in a Haematology Lab when I first left school and as is probably quite common in such an environment we all wanted to test each other all the time.   It was discovered that I have a nmber of rare blood types (way beyond the realm of usual blood typing) and so my colleagues wanted my blood on their Cell Panel which they used to compare with.   Even then as, absolute amateurs, we had trouble with my veins and it was easier to get some of me when we were out on the Blood Truck collecting donations from the public.

 

I was talking to somebody recently who was having Chemo and she talked about there being bowls of hot water at the day stay where she is treated.   She was encouraged to soak her hands to bring up better veins.   Something I have never thought of but Shelley's idea of a heat pack sounds like a good one.   Those heat packs of gel which you can start by cracking a disc inside would be ideal.   I used to keep them in my pockets all winter long when I had Raynaud's.

 

You said that Gareth is always tired, well you know what the rest of us say about that - what's new!!

 

As well, the pain he says he has in his legs, my legs feel as though they are going to collapse under me most of the time.   I wouldn't call it pain exactly but they are sort of sore and I can quite imagine Gareth saying that for wont of a better description.

 

Keep up the good work, it is very stressful having a child who needs so much care and I think you are a saint.

 

Best wishes

Judyt



#9 Kathy D

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Posted 09 March 2015 - 08:58 PM

Margaret,  I have stopped taking plaquenil twice.

 

Both times I regretted it.  It keeps my 24/7 and 365 fever below 100* and helps my joints.  I remember being asked by doctors if it was helping and it was hard to tell.  For sure after stopping I can say it was helping.  I also read it can take 3-6 months to become effective again when starting or restarting.

 

It doesn't do anything for my severe fatigue, but I appreciate the two benefits above. :)

 

Only you can make the best decisions for your son, we all know how much you love him.  I know this one would not be one I would eliminate, but Gareth and I are in different situations.

 

What else is there that could make a difference for him?  I love Shelley's and JudyT's suggestions; when can you give them a try?


Diffuse Scleroderma Diagnosed March 2009

#10 Margaret

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Posted 10 March 2015 - 01:32 AM

Morning everyone....thanks for all the responses and ideas.  It seems that Plaquenil does do more good than harm and I just can't see the *rose*.

 

Judy....thank you for explaining your feelings in your legs....the tiredness and *can't walk another step*.  He's always saying they hurt and are tired.

 

As for the blood draws, well.....we have tried all the suggestions.  I load him up with fluids before and they have the heated blanket ready to wrap his arms in.  I do agree with Shelley, that there are good drawers and not so good ones.  It seems to be a *pride* issue to many.....* I'm an IV nurse.....I do this all the time.*  What upsets me is that they dig and root around when they don't hit it immediately.  That is what gets Gareth so agitated and I have to hold him down.  There is one *whisperer* who can always get Gareth but she broke her hip, on the ice last Dec, and still isn't back.

 

The infection control doc, who came up with the new IVIg concoction, wanted to put a port in but his local doc said *no*..  Thoughts on that idea will be appreciated, too.

 

You guys are great........thank you, so much.  

 

Margaret



#11 Amanda Thorpe

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Posted 10 March 2015 - 12:45 PM

Peggy, I don't know if this helps but 99% of my blood draws involve digging around, trying to find the vein. When the anesthetist, doppler in hand, had to put the cannula needle into a deep vein and moved the needle up, down, all around it was less painful than the initial stick, what they call "a sharp scratch". Sharp scratch my eye! Mind you I guess that's the point, the initial "sharp scratch" is really painful!

 

 

Take care.


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#12 judyt

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Posted 12 March 2015 - 05:25 PM

Hi All,

This thread, started by Margaret, is about Plaquenil isn't it??  

 

Margaret started it with the heading Stopping Planquenil then she went on to talk about the difficulty with Intra Venous infusions for Gareth.  I presumed she meant administering the Plaquenil by IV.   Now I am told Plaquenil is an oral medication.

 

Can somebody un-fuzz me please.

 

Judyt



#13 Shelley Ensz

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Posted 12 March 2015 - 07:35 PM

Hi Judy,

 

Thanks for asking us to clear up the confusion for you, if we can.

 

Yes, the thread is about taking oral plaquenil.  But Margaret was thinking about having Gareth stop plaquenil for a number of reasons, one of them being she thought maybe it was making his veins worse when getting his IVIg treatments.  IVIg is a treatment in and of itself, that is always administered by IV. 

 

However I think we went around all around the bend and decided the difficult with Gareth's veins was probably not caused by plaquenil. But of course we're not doctors, and all that, so she should ask his doctor(s) about it all, as well.

 

Anyway, that's how the issues became intertwined, and you got lost in the maze of logic.  I hope this un-fuzzes you, but if not, I'm sure someone else can take a whack at it.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.

#14 judyt

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Posted 12 March 2015 - 11:31 PM

Thanks Shelley, never having had any of these DMARDS or other similar medications it takes some brain power to sort out what is what.

 

Un-fuzzed :emoticons-yes:

Judyt



#15 Margaret

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Posted 13 March 2015 - 01:25 AM

Judy.....yes,  it did start *Stopping Plaquenil*  because I thought if I stopped the Plaquenil, then Gareth's immune system wouldn't be so depleted, then he wouldn't have to have the monthly IV Ig infusions, that cause me/him to cringe because they can't get the IV needle in without digging for the veins.   You all are very complicated individuals,  medically, and I only need to ask to get some useful insight!!

 

Thanks everyone and take care,

Margaret