Discontinued Plaquenil...any other options?

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momto3
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Date Joined Nov 2006
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   Posted 9/9/2008 6:59 AM (GMT -7)   
Hi there,
 
I normally post on the arthritis board, and due to toxicity of the Plaquenil after 2 years, I have had to discontinue it, since I failed the visual field testing.  Although I take Enbrel, and MTX, neither one work as well as the Plaquenil and the fatigue and joint pain have returned full force. 
 
 I'm just wondering if any of you here have had to stop taking Plaquenil and if so what you replaced it with? (If anything)  Since stopping it even the sun is now my worst enemy and I have had to get a pair of sun glasses..I also seem to be having a lot of anxiety and I never had this before I stopped my Plaq sad
 
Am I just losing my mind? My husband thinks I'm nuts.  Thanks in advance!
 
 

PattyLatty
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Date Joined Mar 2006
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   Posted 9/9/2008 7:41 AM (GMT -7)   
Hi momto3,

Wow, I hate to hear that you had to stop taking plaquenil. It's such a wonder drug. What does your rheumy suggest? Not knowing what your dx is, I don't know what to tell you. Since you're taking Enbrel and MTX, I suppose you have RA and I can't imagine having that and not being able to take plaquenil. All I can do is offer you my sympathy and suggest you talk to your rheumy or hope that others here have an answer for you.

I see that you have migraines. Have you ever taken Imitrex? I have suffered with migraines for thirty years and the only true relief I've ever gotten are from accupuncture and immitrex. Topamax helped some, but gave me alzeimers. But boy did I get skinny while on it. Loved that!

Good luck getting some answers. I'm sure you do feel like you're losing your mind.

(((hugs)))

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


rere7896
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 9/9/2008 7:45 AM (GMT -7)   

Hi there, I had put a posting about this a few weeks ago on here. I had to get off of plaquenil as well b/c of toxicity and benign tumors behind my eyes. I haven't found a replacement except that I started my cytoxan every month now. I've had other problems as well but I don't think those would help you b/c they are more related to SLE. I found that some of my symtoms came back after I got off of plaquenil too but I never found something to really "replace it" unforntunately. If I find something I will certianly let you know but you are NOT NUTS!!!!!!!!!!!!!!!!! Hang in there......


Good luck to everyone and may God Bless you everyday.....

I'm currently taking atenolol, verapamil, ovcon (no cycle since 2000), prednisone, neurontin, cytoxan, folbic, diludad, loratab, demerol,(depending on severity of pain), promethazine, singulair, lasix, amitriptyline, baby aspirin, patanol --- I think that's it...

I have SLE, SVT, MVP, Sjogrens, Fibromyalgia, Neuropathy, migraines, Pleurisy, asthma, endometrosis, Reynauds -- think that's it as well....


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/9/2008 10:23 AM (GMT -7)   

Hi Patty...Yes I do get some kind of strange migraines but without the pain??? So, yeah I have been on Topamax a good three years now, way before the RA or we are assuming that is what I have since my testing has all been negative, I keep waiting for this craziness to just disapear!!  At this point as long as I stay out of the sun (looking for a really good sunsreen, that is non greasy???) My moisturizer with sunsreen no longer works now without my plaq.  Yes, the Topamax is a good weight loss medication that is for certain and I though at one time it was going to be used for that.  I agree it is bad for the memory, there are huge chunks in time that I don't remember or I will totally forget where I am going in route, its scary!!

Thank you for the sympathy, and I go see the rhuemy next week so hopefully he will know what to do, but he has wanted me off the Plaquenil so here is his wish!

Rere...The Plaquenil is such a wonderful medication!!! Aside from Prednisone, I have taken that in the past and it works like nothing else, I can clean my entire house on pred!! but my rheumy doles that out in very small quantities (really stingy) I'm sorry you had to give it up as well :(  If my rheumy comes up with something earth shattering, I will let you know :-)


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 9/9/2008 10:31 AM (GMT -7)   
I am sorry to hear you can't take plaquenil, it's a great med and I can't go without it. I have heard toxicity is very rare and usually only happens if you've been on plaq for many many years (20+) or take it in high doses, more than the standard 400 mg.

I am curious what dose were you taking?

I hope your rheumy is able to help you find something else that works well for you. Take care and keep us posted on how you are doing.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 9/9/2008 10:45 AM (GMT -7)   
Hi Stacie..I was taking just the usual 400mg, and that is what I have heard/read as well.  I knew my first exam was iffy but after only a couple of years I didn't expect this at all.  Thanks for posting to me, I appreciate it!

Redhands
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 9/9/2008 12:25 PM (GMT -7)   
Hi,

I too had to stop taking plaquenil because of toxicity to my eyes, I was on 400 mg daily for 6 months, my intial eye exam was okay,

The doctor that checks my eyes said I was the only patient she had this to happen too. (What Luck!) So I to am open to any

suggestions for a replacement .


Joan
   


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/10/2008 7:11 AM (GMT -7)   
Hi Joan...What luck is right!! Did you happen to notice that your vision was getting fuzzier even with your glasses on? I'm assuming you wear prescription glasses? This is what happened to me, even with my glasses on, the view from them was a bit blurry. This should have been my first clue. Will you have to go back for a repeat exam now that you are off the Plaq? I have to return in 3 months for mine.

peacesoul
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Date Joined Jan 2007
Total Posts : 2446
   Posted 9/10/2008 9:45 AM (GMT -7)   
Plaq was not a wonder drug for me. It made me so sick and actually made me worse.

I would suggest seeing a naturopath to see what natual options you have. There are MANY ways to lower the body's inflammation.
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 9/10/2008 11:49 AM (GMT -7)   
Hi All

The alternative to Plaquenil is a slightly different anti malarial called Quinacrine. Plaquenil replaced Quinacrine (formerly called Atabrine) for anti malarial prophylaxis so now the Quinacrine has to be made up into pills or gel capsules by a compounding pharmacy. If you google you will find details of compounding pharmacies.

There is no record of retinal toxicity proven to be from Quinacrine. It is often an acceptable alternative when Plaquenil causes unacceptable GI problems.
Quinacrine can be used together with either Plaquenil or its stronger version Aralen ( chloroquine) for a highly effective combination as the two work together each enhancing the effects of the other. Quinacrine is especially well known for its energising effects & fatigue reduction.

By using the combination it might be possible to reduce or avoid steroids and immunosuppressant needs, also NSAID's when Plaquenil isn't enough alone to get symptoms under control and reduce disease activity
It is amazing that the combination isn't better known and used more often considering that it is not new. It seems to have been forgotten when Quinacrine was taken off the shelves
Dr Wallace and many other renowned lupologists are very familiar with it for uncomplicated cases of lupus when arthritis, skin and fatigue are the main complaints.

One possible side effect that might be unacceptable is yellowing of the skin but some people are more prone to this than others. I have been on Quinacrine 100mgs a day for many years and have no perceptible yellowing.

Retinal damage from Plaquenil is extremely rare when doses do not exceed the maximum recommended which is about 3 mgs per lb/ 6.5 mgs per kilo of IDEAL body weight and when the patient has no liver or kidney problems. Since doses are cumulative the risk increases with time - 10 years is usually quoted.

I hope this info will be helpful.

Good Luck

BB

Redhands
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 9/10/2008 12:06 PM (GMT -7)   
Hi,

Momto3, Yes I did notice my vision was getting blurry about three months after starting plaq. and I don't wear glasses(almost perfect vision before this) I just did not think that it was the med causing it . I had never heard of it happening so soon after starting plaq. Odd isn't it ? And yes the eye Doc wants to recheck me in about 3 months. It's been about 1 month off the plaq. but I can still tell my eyes are not quite the same as they were before. Has your eye sight improved yet?

Peacesoul , Thanks for the info on a naturopath, I'll check into that.

Be well,
Joan
   


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 9/10/2008 12:40 PM (GMT -7)   

Hi Joan,

I see...well my vision has always been poor shocked but after the plaq it seemed to really go downhill.  I have looked around and there seems to be other anti-malarials so it seems Plaquenil is not the only one, but I'm not sure how often these others are prescribed.

Peace..I have tried other methods and also discussed these with my rheumy..RA and Lupus are pretty severe issues so most often prescriptions meds are needed.  I wish I could get by with something all natural and toss everything else aside!


peejay28
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/11/2008 8:23 AM (GMT -7)   
Thanks Bumble Bee, for posting your response about Quinacrine (formerly called Atabrine) replacing plaquenil.

I went to my doctor yesterday regarding alternative to plaquenil due to retinal changes after 15 years.
The ophthalmologist suggested I stop it after seeing an opacity in my macula and recommended I see my rheumie.

Well he mentioned something about a drug that needed to be compounded that might make me turn yellow, but he didn't write it down. Then said something about trying curcumin (?) which has some evidence for reducing inflammation.

I am at a standstill, trying to decided what to do. I am in a flare and currently not taking anything except ADVIL.

Actually, I was thinking about getting a second opinion from a different doctor but this one has been with me through this whole journey (15 years) and I do trust him. I just don't want this flare to get out of control while I mess around with turmeric roots!

Anyone taken curcumin, how is it working? If so, where did you get it?

thanks
pj

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 9/11/2008 2:25 PM (GMT -7)   
Hello Peejay
The turmeric or curcumin has the reputation of having anti inflammatory properties like many other food items such as notably Omega 3 fish oils. But these can't replace an anti malarial which has disease modifying properties any more than NSAIDs can. They are complementary symptomatic treatment only, whereas the antimalarials change the cells so that fewer antibodies are produced. When the disease is less active there is less inflammation.
I am sure your doctor was talking about Quinacrine. Why not try it :)
Dietary changes can also reduce inflammation.

HTH
BB

peejay28
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/11/2008 2:32 PM (GMT -7)   
Thanks BB
I have a call in to him already. I appreciate the info you posted.

pj

peacesoul
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Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 2:42 PM (GMT -7)   
momto3 said...

Hi Joan,

I see...well my vision has always been poor shocked but after the plaq it seemed to really go downhill.  I have looked around and there seems to be other anti-malarials so it seems Plaquenil is not the only one, but I'm not sure how often these others are prescribed.

Peace..I have tried other methods and also discussed these with my rheumy..RA and Lupus are pretty severe issues so most often prescriptions meds are needed.  I wish I could get by with something all natural and toss everything else aside!

Momto. What other methods have you tried? Did you try these methods with an ND. MD's are not educated on alternatives unless they also have an ND background.
I was being treated for my lyme with antibiotics for a few months and have been treating my lupus drug free, so there are alternatives.
So yes, these severe illnesses can be treated with other things besides medications.
 


Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 2:46 PM (GMT -7)   
BumbleBee1 said...
Hello Peejay
The turmeric or curcumin has the reputation of having anti inflammatory properties like many other food items such as notably Omega 3 fish oils. But these can't replace an anti malarial which has disease modifying properties any more than NSAIDs can. They are complementary symptomatic treatment only, whereas the antimalarials change the cells so that fewer antibodies are produced. When the disease is less active there is less inflammation.
I am sure your doctor was talking about Quinacrine. Why not try it :)
Dietary changes can also reduce inflammation.

HTH
BB
 
Most of my symptoms disappeared or improve when I changed my diet and exercised on a regular basis 
I also take Tumeric for the inflammtion and it works wonders.
 
The key to treating auto immune illness is to keep inflammation down. All medications do is supress the immune system and then the body needs to fight that much hard to balance itself out
 
And by the way, I'm working on my naturopathic degree since being ill. I was totally turned off by all the medications dr's wanted to feed me. No one told me how to get better, they just told me how to put a bandaid on it.
 
 

Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 9/11/2008 6:01 PM (GMT -7)   
Hi everyone haven"t been on for awhile. Just want to add I'm on quinacrine, been on it for 7 months now haven't had any problem actually I found that it help a great deal. I still get flares but my rash stop spreading. I'm still on 400mg of plaquenil 100mg. of quinacrine. The derm. decided to put me on it because of overlapping and plaq. wasn't doing enough to control my lupus. She did say you can turn yellow but so far so good.
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 9/12/2008 1:31 AM (GMT -7)   
" All medications do is supress the immune system and then the body needs to fight that much hard to balance itself out"

Peacesoul

Each to his or her own, I say.
I am not quite sure why you chose to quote my post? I am glad when people get better however they choose to do it, but it is important that people have the right sort of information to make their choices. I can only talk from my own experiences over decades, ther 1000's of accounts of other people's experiences and extensive readings over many years.
The anti malarials are not immunosuppressants - they aren't used for transplants of cancer treatments. They change the fundamental disease process by making it harder for the immune system to produce autoantibodies. Their mechanisms of action are too many to list here and anyway there is no point in so doing since this is a support forum. Refer to DuBois SLE p 1154.

Many many people including myself have taken the anti malarials for many many years without problems only enormous benefits, including ones that aren't so obvious such as cholesterol lowering and reducing photosensitivity.

HTH
BB

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 9/12/2008 9:54 AM (GMT -7)   
Bumblebee..I wanted to thank you for replying on the arthritis board! I didnt' realize it counteracted the issues with the sun? If I am understanding correctly? Because it seems now without it, my sunscreen just doesn't work, and yesterday it was a cloudy day but I was out for several hours and my cheeks and forhead were obviously red? On the Plaq, I didn't have this issue.   I am going to ask my rheumy about the other options, thanks so much!!
 
 
Peace..I think it's great that you are going the route that you are..to answer your question..I take the omega's,a multi, some of the herbal's, I eat a vegetarian diet (not vegan), and I weight train, and all of the herbal stuff that I have taken, flaxseed, tumeric etc and still take isn't enough to ward off my pain/inflammation.  Good luck to you!
 
Journey..So happy to hear you haven't turned yellow :-)

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 9/14/2008 11:30 PM (GMT -7)   
Hi
The antimalarials reduce photosensitivity a bit, but as an additional help along with all other precautions not as a substitute for them. A lot of the medicines we take increase photosensitivity - Imuran, Methotrexate, NSAIDs.

Clouds don't reduce UVB all that much and don't reduce UVA at all so if you are especially photosensitive you might find you need as much protection all the time, regardless of weather or temperature and even more care when there are highly reflective surfaces like water or snow.

HTH
BB
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