I've been reading here lately how difficult Plaquenil is to tolerate and wondered if ANYONE out there tolerated Plaquenil well.
Any feedback appreciated!
Posted by btmb03 (Member # 18394) on :
Thx for your input Lyme Ed! Would love to hear some first-hand accounts...if there are any positive ones!!
Posted by dmc (Member # 5102) on :
Did fine on it with Tetra & Biaxan.
I think when people read too many negative experiences of a drug they UNconsciencely set themselves up for one.
My family does not allow my mother to read the drug insert that comes from the pharmacy with her prescriptions. No matter how rare the side was, she'd get it.
Since she no longer gets to read 'em it is amazing how well she tolerates her meds now.
Posted by sammy (Member # 13952) on :
I've been on Plaquenil(with multiple combinations of antibiotics) for for several months now and have not experienced any problems with it.
When I have accidentally run out of Plaquenil I experience increased joint pain. So obviously it is helping at least with pain control and inflammation issues.
It also has activity against the cyst forms of Lyme and Babesia.
Trust your doctor's guidance and give it a try.
Posted by swachsler (Member # 18155) on :
i will hopefully be going on plaquinil soon, if i can tolerate biaxin (rough going so far), so i would also like to hear positive (or negative or any!) experiences on it.
i have learned, fwiw, btmb, that it's best to start on a low dose and work my way up. i've learned this after two years of my llmd starting me at full doses and herxing like mad.
so maybe when u start plaq, start at 1/4 dose and work up?
i'm wondering now if there are other drugs i wd have tolerated better if i'd done that....
-sharon
Posted by btmb03 (Member # 18394) on :
Thx for your input guys, glad it helped at least a few of you. I often wonder if a drug like Plaquenil is so difficult to tolerate why it's always the first to be prescribed..
But then again you're right, must trust my LLMD and give the drug a good try..my joints/body could really use a break!!
Posted by j_liz (Member # 20496) on :
The only trouble I had was hair breakage. So my LLMD had me cut it back to one dose, instead of 2.
liz
Posted by Vermont_Lymie (Member # 9780) on :
I found plaquenil to be the easiest of all treatments to tolerate, and I tend to be very sensitive to medicines. There were some side-effects the first week, like slight dizziness, but those passed quickly.
Posted by btmb03 (Member # 18394) on :
Liz, Vermont, thanks for your input - hmm hair breakage? Wonder what the reason for that was! Did your hair return to normal after stopping the drug?
Vermont - glad you tolerated it so well!!
Posted by kitty9309 (Member # 19945) on :
I am also on Plaquenil. It has only been 3 weeks, but I am OK so far.
It seems to make me thirsty, but that is all I can tell.
Make sure to eat with it.
I take it with Biaxin (started that 2 months ago) and I just added Rifampin.
I was very scared about it at first as well.
Hope it goes well.
Posted by btmb03 (Member # 18394) on :
Thx so much Kitty, I'm glad it has gone well for you.
I'm SO sensitive to meds in general it's scary when you hear of so many who didn't tolerate it...so I'm glad to hear there are those that did!!
Posted by joe-nm (Member # 18054) on :
I'm on 200mg of Plaquenil and 1000mg Biaxin.
I was like you and concerned about taking the drugs because of things I had read on this site but it is the easiest combo I have ever been on and helps a lot.
I had no side effects what so ever. I hope you get well!
Joe
Posted by kitty9309 (Member # 19945) on :
I am usually very sensitive as well.
Could not handle even 50 mg Minocycline per day, but can do 1000 mg Biaxin all at once, 200 Plaq 2x/day and now the Rifampin.
Weird for me.
Good to hear, Joe. The voice of sanity.
Posted by btmb03 (Member # 18394) on :
Joe - glad you've had no negative effects, are you seeing any improvements?
kitty - wow! 1000 mg at once? plus the other two meds? double wow!
Good luck and better health to the two of you too!
Posted by j_liz (Member # 20496) on :
Yes, my hair stopped breaking after cutting it down to once a day.
liz
Posted by Richard1062 (Member # 19233) on :
Our daughter is in her 3rd week of biaxin and plaquenil. She is being treated for Lyme and terrible joint pain. We are planning on it being a great success.
When she developed increased nausea, her LLMD said she could take half the standard dose, slowly increase the biaxin to tolerance, and then slowly increase the plaquenil.
Dr also said she sees many get good results with this combo even if they stay on only half the standard dose.
Of course, being headstrong, our daughter did not decrease her dose. She got a little better after the first week, but is now headed into her regular monthly downturn, so we have to wait & see what happens after that is over.
Burrascano has a good explanation of why you take the 2 together.
I also found the study, done by Dr. Donta, which shows how plaq. helps the biaxin to penetrate. He looked at Lyme patients with fatigue, musculoskeletal pain, and neuro symptoms. He said 80% reported improvement after 3 months of treatment.
Posted by wantabe (Member # 14703) on :
I have been taking plaquenil 200 mg 2X day, Levaquine 500 mg1 daily, and Cefdinir 300 mg 2 caps/ 2X daily for 6 months now.
Slow improvement, but improvement, some major herx once in a while(cycle).
I have monthly blood tests and every 3 months an eye exam. Of course, all the supplements and biotics as normal.
Good luck with your new tx, willbe
Posted by btmb03 (Member # 18394) on :
jill, Richard, wantabe - many thanks for your input. Wow such good info from y'all. I really feel better on half-doses too but my doc won't agree to that and dosing up has made me almost completely non-functional.
Wonder why docs have such a different attitude. Also don't know if I'm just not tolerating the higher doses or herxing since my joint pain, flu sx, brain sx, feverish sx are thru the roof.
thanks again for so much support.
Posted by lightfoot (Member # 2536) on :
I have only positive reports for my use of plaquenil.
I have been using it for at least six years, close to seven....most of that time in combo with zithromax.
I have had excellent tolerance and results.
Yes, it makes a difference for me with inflamation and the joint and muscle pain. I also believe it has been a great credit to my Lyme treatment.
There is also some evidence that it treats babs.
Read about the positive benefits....search here and the web in general.
My dose was been 200 2 x day for a few years. I have been using 200 3 x a day now for a few years.
I schedule the eye exams every six months. It is rare for problems to arise with the eyes BUT it's important to monitor it.
Good luck and take good care.
Posted by btmb03 (Member # 18394) on :
Lightfoot, you and others truly have given me hope - I'm SO glad you had good results and tolerated the Biaxin/Plaquenil combo well.
Thank you so much for your detailed input.
Healing smiles back!! Posted by kelmo (Member # 8797) on :
plaquinil was one of the easist meds to add. You just have to get eyes checked as a preventive.
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