Author Topic: Let me tell you what weaning down from Plaquenil is like...  (Read 8126 times)

irish

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #30 on: January 11, 2012, 11:29:23 PM »
I have been on the plaquenil 200 mgm for about 4 months now. I did stop it for 2 weeks early in the treatment due to having to take a coupld other drugs that seemed to give me side effects. I just quit the plaquenil to give my liver a rest at that time. Noticed nothing different.

Plaquenil isn a antiparasitic drug with anti-inflammatory affect. I have done a lot of research on this drug and haven't run into anybody who has complained of the withdrawal effect. Over the years on this site we have had quite a few people post that they didn't think that the plaquenil was working so they would stop taking it. Within a week most of them said that their symptoms came back with a vengence.

They pretty much all restarted the drug and said they would stay on it cause it was working. I would assume from this that people had sudden and quite severe flares when stopping the plaquenil.

There is always the chance that some people might interpret this as withdrawal, but I think it is probably always in the eye of the beholder. Hard to determine what other people are going through and not worth seeing who it right or wrong. Irish ;D

KatieB

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #31 on: January 12, 2012, 12:03:38 AM »
   I hadn't really considered it, but I had to take a break from the plaquenil because of stomach issues. (Thankyou all for the suggestions to restart slowly, by the way. I'm tolerating it much better. :)) I had only been taking it for a couple weeks and I already seemed to have more energy. About a week after I stopped taking it I had a wicked flare. Fever, more neurological symptoms, totally wiped out, and horrible joint pain. It's been a little over a week since I started again and I actually managed to finally get Christmas down AND cook dinner. ;D  Wow, right? I can't say for sure it was the plaquenil, but it does make me hopeful.
Female, 38 sjogrens (seronegative), positive ANA,allergies, asthma,
Meds- plaquenil (generic), etodolac 800mg,zegerid OTC, vitamins, inhaler, various eye-drops

"Once you can except the world as matter expanding into nothing that is something, wearing stripes with plaid comes easy" Albert Einstein

gurs

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #32 on: January 12, 2012, 06:32:58 AM »
I would gladly take feeling better over my hair at this point..Plaquenil always helped me with my hair, you may want to give it more time and it might level off, if indeed, its the plaquenil. I lost tons of hair when I added Medrol daily..also, my docs say most hairloss  issues are hormone related...I know metho can also cause hairloss as well,, but its alot more toxic. I couldnt take metho for long...I ended up feeling sicker and getting yeast in my esophagus, so I had to stop.

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, severe sinus & dental issues. selective immune def/low t-cells.
Daily steroids, plaquenil, diflucan, bio-estrogen creams,many supplements.

meow

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #33 on: January 12, 2012, 09:35:36 AM »
I felt the difference taking plaquenil in about 6 weeks, especially in my hands.

I started the metho in July. I had stopped the meloxi, so I noticed the pain relif in about a month. I had no new hair issues til about a month ago. I thought I was past that, but all through December I lost what seemed like more hair. I say seemed, because my hair had actually started growing a little faster, and is a little longer than it was in the summer, so it might just look like more. Plus, since it's curly, the longer it gets the flatter it lays on the top of my head. Hard to tell if it's thinner, less of it, or just collapsing due to its longer length.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

lolo1979

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Re: Let me tell you what weaning down from Plaquenil is like...UPDATE
« Reply #34 on: January 12, 2012, 10:32:33 AM »
Hi everyone,
Went to my GP yesterday. He was great. Did an xray, ekg and peak flow monitor, all of which came back ok.  He is ordering a holter monitor for me to wear for 24 hours, but I haven't gotten it yet. 

He said yes, obviously I was flaring from dropping my dose the previous 3 days, but he couldn't explain the heart palpitations or trouble breathing (the heart palp's were never a symptom of mine before).  I also asked why dropping the dose would make me flare after only 3 days, given that it's supposed to build up in your system and take a while to 'get out'.

He said it doesn't matter that it has to build up, that your blood levels still drop by missing doses, and that that difference will affect many people.  So there you have it - just one big nasty flare with a new added symptom of heart palpitations.  Awesome!!  I can say that was the worst flare I've ever had - even counting before I started on plaquenil.

I guess if you give your immune system an opening that it hasn't had in a while, it's going to go into overdrive. That's the only explanation.

Incidentally, I asked him why plaquenil causes hair loss, and he said no one knows why. It's just one of those drugs known to have that side effect.  Nothing to really help it he said, other than taking folic acid, b12 and biotin. I asked him about methotrexate, and he said he was on it for years for his RA and never had any major side effects from it.  He also said his RA "burned itself out", and all he takes now is Celebrex.  I found this very interesting because my Rheum told me the same thing during my first appointment with her. She used that term EXACTLY. She said sometimes these things just "burn themselves out".   SO....I guess "burning out" = "remission".  I can only HOPE!

So that's the update.  The lesson here is - for those who need to go off plaquenil, be careful about just going off it cold turkey.  Obviously some of CAN do that, but if you don't know if you're one of them - better to be on the safe side and wean slowly!!!  Take it from me!

I am feeling much better after bumping my dose back up over the last few days.  Breathing is better. Heart palpitations gone. Aches and pains going away.

Thanks for everyone's input on this.  Stupid sjogrens!!!

mshistory

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #35 on: January 12, 2012, 10:42:01 AM »
Quote
Incidentally, I asked him why plaquenil causes hair loss, and he said no one knows why. It's just one of those drugs known to have that side effect.  Nothing to really help it he said, other than taking folic acid, b12 and biotin. I asked him about methotrexate, and he said he was on it for years for his RA and never had any major side effects from it.

My rheumy and dermatologist both told me Plaquenil shouldn't cause hair loss - isn't it crazy how all of our doctors tell us different things about the same drug!? Since I was losing my hair before I started it, I have no idea if it's contributing to my hair loss now or not. I just know I'm still losing it  :(

Glad all of your tests have come back normal so far and I hope you're feeling better!
SLE and SjS. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Clonazepam, Zoloft, albuterol, Imitrex for migraines, CellCept 1500 mg, Plaquenil 200 mg, Restasis, Ocuvite, Zofran for nausea, Protonix, Gabapentin, Evoxac and Lortabs for pain. I'm a walking pharmacy.

Scottietottie

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #36 on: January 12, 2012, 11:05:06 AM »
Hi

I've found that doctors - even the specialists can be pretty ignorant about the medications they describe. My medication always comes with a leaflet in it about what is it - how to take it - and possible side effects. I always read it.

My ENT doctor and my rheumatologist were both blissfully unaware that Plaquenil can cause tinnitus. It's something I think they should know! The leaflet also says it can cause hairloss. (In my case its hasn't - but I know it could do). It can cause nausea, diahorrea and constipation and a whole host of other things.

I'm very lucky. I seem to have got away with it just causing tinnitus. I can stop it without ill effects and I can start it again without having to wean onto it but that is how I was advised to start it - and did. It cannot be taken with certain antibiotics and if they are prescribed it is necesssary to stop it while taking them.

It is not meant to be taken within 2 hours of taking antacids - or vice versa. (I had to point that out to a nurse in hospital once when she came round with my medications. "I can't take that with that I said" (It says so in the leaflet.)

It always seems to pay off to do your own research.

Take care - Scottie  :)
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anita

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Re: Let me tell you what weaning down from Plaquenil is like...
« Reply #37 on: January 12, 2012, 04:35:15 PM »
I didn't know about it causing tinnitus...so that's where this came from.  :o
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,