Plaquenil

[laurawm]

Hi Everyone,

I asked my rheumatologist to add plaquenil to the doxycycline and celebrex I am taking. I took my first dose (400mg once daily) today and am experiencing a major herx – has anyone else experienced this when starting on plaquenil? I was already herxing from daily doxy + supplements and I was hoping this would help tone this down, but it seems to only be adding to the fire. I have a script for prednisone but have not yet taken it. I have been doing daily coffee enemas and epsom salt baths which seem to help some.

Thanks as always,
Laura

[cavalier]

Yes I have, and others can have that happen. It works on protozas and is a good adjunct type of thing. It does get better if you can hang in there.

Jill SD, & Lyme & Bart

[laurawm]

Thanks, Jill. I will try to stick it out but I have to get my pain and inflammation down. Have you ever tried prednisone for short periods? I am so afraid of it, but I’m thinking that maybe I am blowing it out of proportion if I can manage to stay on a very low dose or just take it for a short period of time.

[frenchmoxie]

Yes, when starting out on Plaquenil I get some pretty intense headaches for about 2-3 weeks and then they just disappear! I’ve stopped and restarted Plaquenil about 2 or 3 times now, and every time I start back up I get those same headaches.

[laurawm]

That’s interesting, frenchmoxie. I got headaches as you described on minocycline in the beginning both times I took it that subsided after a couple of weeks and wonder if I was not actually herxing in the tissues around my head. Lately I’ve had all kinds of swelling in most of my joints, but most strangely is the tissue around my collar bone/clavical area have been in extreme pain and swollen with a fine red rash all around and pain all the way up into my inner right ear. Crazy things going on in my body. Plaquenil is hitting something hard in me as I am having intense hip, knee and shoulder pain since beginning it. I have reduced my dosage to 200mg a day and am hoping this will calm down soon.

[cavalier]

Hi Laura – I was out of town for a week for medical for myself & the hotel didn’t have good internet access it was a mess so was too hard to get a message out – I cant take pred. due to the fact i have a paralyzed phrenic nerve from scar tissue that caused a raised hemi diaphragm on my left lung which means my right lung does most of my work – my new PFT looks worse since april ALL of which to say is many doc’s have warned me against long term immune suppressants due to risk of lung infection pneum. etc in that lung so I would not touch Pred. I am taking Moducare however which is another immune modulator & my Rheum at NW likes me being on immune modulators – he wants me back on the Plaquenil as well as the LDN & melatonin to add to that.

I prob. will incur headaches again when I start back in on the Plaq. he knows I didn’t gain one bit while on it but he is hoping along with what I am doing now it may help add to that so I will try it again.

Best – Jill

[laurawm]

Thanks Jill – sorry to hear of such an arduous trip – I hope some of the testing helps point your treatment in a clear direction.

The plaquenil is hitting me hard and deep – I am not sleeping well since starting it as I am waking with deep searing pain in my hips and shoulders. There must be some untouched bug in me that plaquenil is working on, but I’m not sure how to deal with this level of herxing. Right now I am cutting the tablet in half and am down to 100mg BID. This is more tolerable, but still bad. More than anything I am concerned about the level of damage to my joints. I’m willing to accept some, but this does not feel like minor or slow damage and I am having difficulty dressing/undressing myself and getting in and out of the car and bath and other basic tasks like walking and standing, not to mention caring for two kiddos. I’ve been in this place before, but not in several months. Good news is that although my hands and feet are still herxing, they are mostly functional and I feel slowly improving. I am concerned about slowing progress using any kind of immune suppressant and/or getting hooked on prednisone, but of course I am also concerned about major joint damage – I just don’t know how much my joints can handle and repair.

I’ve never heard of moducare – will look up. I did not realize you had a difficult lung. I know so many of us are in such difficult positions – I have to remind myself that the only good way out is through, and not to give up. Some days it’s hard to remember.

I hope plaquenil agrees with you better this time – I had headaches with mino but not yet with plaquenil.

Best to you too,
Laura

[hbell]

when I started Plaquenil, the rheumy started me off at 200mg/day so the body could adjust and then she will increase to the 400mg/day. I didn’t end up getting to the 400mg/day due to slight tintitus which I believe is caused by the MTX. Anyhow, maybe the large dosage all of a sudden sent things out of whack. Just a thought.

[laurawm]

Hi hbell, I agree – 400mg was definitely too high of a starting dosage in my case. I reduced it to 100mg BID all of last week. This was difficult but more bearable till Friday when I just plain wore out. Yeast issues were creeping up, my pain levels were very high and nearly constant, keeping a low fever all afternoon, and I was getting less than four hours of sleep each night. I went off both doxy and plaquenil all of yesterday and today I took 100mg plaquenil at lunch but no doxy yet. The morning was bad but this afternoon I feel a bit better and no fever. I guess it is just going to be hard no matter what right now and it will be helpful to get an LLMD’s direction when I have my appointment Tuesday. Appreciate your thoughts.

[lynnie_sydney]

when I started Plaquenil, the rheumy started me off at 200mg/day so the body could adjust and then she will increase to the 400mg/day. I didn’t end up getting to the 400mg/day due to slight tintitus which I believe is caused by the MTX. Anyhow, maybe the large dosage all of a sudden sent things out of whack. Just a thought.

Heather – are you consulting both a rheumy and Dr D? If yes,interested to know how that is working.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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