Discontinued Plaquenil...any other options?

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

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

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!

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.

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

Hi Joan,

I see...well my vision has always been poor 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!

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

momto3 said...

Hi Joan,

I see...well my vision has always been poor 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.

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.

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

Hello everyone! I'm so glad I found this site and this topic thread. Thanks for being here. I'm a "Newbie, so be patient with me."

I was just informed that I need to go off my Plaquenil after 25+ years of use due to vision impact. A little scary but I'm processing this "wake-up."

I was searching for information on alternatives to Plaquenil and you all have provided so much information on alternatives. I'm anxious to explore the options and to discuss them with my Rhuemie.

Also there have been several comments related to sunscreen and sun exposure. I have terrible reactions to the sun. It feels like my skin is sizzling in a frypan. I found a great company that sells both clothing & accessories that are made of fabrics which block 95+% of uva & uvb and sunscreen lotions & sprays. Their selection of sunscreens have highest spf's i have seen anywhere. The company is Coolibar and if your interested in checking them out, they're at: www.coolibar.com
There are a couple of other similar companies but I found this one to be my preference. I wear light jacket, long pants, hats and sunscreen to go out. I used a UV blocking umbrella also.
In California, we have a motor vehicle regulation that with a doctors prescription we can used sunblocking screens on the window with the exception of the drivers window and use this also.
The sun issues are miserable and I hope you find the tools you need to protect yourselves.

Thanks again for being here, I appreciate each of you and all the information you have to share. Be good to yourselves always. GweniePooh