Plaquenil Experiences?

[DancingLight]

I am getting ready to start Plaquenil as part of my Lyme treatment.

Both my ANS doctor and LLMD agree that this is the best choice for a med for neck pain right now.

My neck pain has improved significantly since starting the Lyme treatment, but I still am miserable all of the time and it is set off by any movement or just turning my neck the wrong way for a couple of minutes. I am hoping that it will improve my quality of life a little as it's pretty low right now, as many of you know.

I did a search and didn't come up with too many folks who had taken this drug. However, none of the topics had been posted when we had several POTS/Lyme folks on the board.

I know one of you with Lyme is also taking Plaquenil.

For those who have taken it--whether you have just ANS issues or also Lyme...

I would be interested to hear your experiences.

I am wondering about side effects (sounds like headache and nausea were what folks experienced in earlier posts?), how long it takes for those to subside, what time of day you took the med, etc.

I am going to start at a teeny tiny dose (1/2 of a 200 mg tablet every third day).

For those with Lyme: Did it contribute to herxing or make herxing worse? (Since it has the anti-malerial properties)?

How long did it take for you to notice whether it was helping with pain?

Thanks!!!!

Emily

P.S. for those interested in more 'scoop'--I'm adding it to my regimen of minocycline (baby doses also) and Malarone (baby doses) b/c it has been shown to work synergistically with minocycline, can help with the neck pain, and has anti-malarial properties which may help if I also have another tick-borne infection called babesiosis.

[Poohbear]

Hey there Em!

I don't have any advice but I just wanted to stop in and say "hello".

I'm sorry you are struggling so much and feeling so lousy. I hope the new meds give you some relief with no side effects!

Hugs,

Poohbear

[pamyla]

Hi Emily! I've been on plaquenil for about a year now - for lyme/babesia treatment. At first I had the worst time with this drug. I'm usually an insomniac but I couldn't keep my eyes open and I just felt really dazed. But it slowly got better and within 2-3 months I was up to the full dose. And, I do think this drug has helped me a lot, so hopefully you'll do well on it too

My babesia is showing negative on my lab tests now after taking a course of mepron, and then clindamycin/plaquenil. So the clinda/plaq combo is what finally got rid of it for me. I wish I could say I'm doing as well with the lyme treatment..... Through it all I think my pain has always been fairly controlled and tolerable, and I'm sure the plaquenil has a lot to do with that.

I typically take one pill with lunch and one with dinner, and haven't noticed any stomach issues. Working up slowly is what I did also, as my body took so long to adjust. Did your doctor tell you to go for eye exams every 6 months?

If you have any other questions, let me know.

Pam

[DancingLight]

Thanks Pooh! I know you 'get' me so well and my situation! I appreciate it, as I know you are having it rough enough yourself!

Pam! You are the one who is on Plaquenil. I was thinking it was you, but it didn't come up when I did the search and I was mental-blocking on which of the fellow Lymies on this board had taken it.

THANK YOU! I am so grateful you saw my post. I'm so dazed and confused all the time anyways! Maybe I will lower my Klonopin dose if I can so I don't have so many drugs that make me tired.

We do not know for sure or not if I have babesia, but I show that sort of pattern in terms of how sick I am. So, we added in Malarone at a pediatric dose--when I tried to up that I got really sick and had to back off again.

As for the Mino, I started at 50 mg 1x a week (after starting with doxy and going up to fast and ending up in the ER, stopping abx for 3 months, etc. etc. We learned our lesson the hard way!). I herxed even at this amount. Each increase has been so hard--just going from once a week to once every 6 days to once every 5 days, etc. Now I am at one tablet MWF and would like to add one in on Sundays, but would like to wait until I start the Plaquenil so that I don't get my system too confused.

So, my understanding is that you took this drug, not for pain, but for babesia? Was the fatigue part of the babesia dying off?

That is one thing I amwondering, since it does affect babesia and the Lyme cycle--did it make your herxes worse or better?

What dose did you start at? And how quickly did you ramp up?

I am glad you shared your experience.....ssssoooooooooooooo grateful for this board b/c it helps me to gage things better now.

I did have a baseline eye exam before starting the drug. The funniest part of the whole thing was that I haven't worn my glasses for 2 years (ever since my gallbladder surgery) since I've been so sick. And then, when I did try to put them on I felt weird with them. Turns out, my eyes are 20/20 without them and I don't need them! Sooo weird. I wish the rest of my body would work like my teeth and eyes do!

My doctor insists on eye exams every 6 months to monitor. So, he is very cautious.

If I am only taking one dose per day...would you take it in the eve with dinner b/c of the fatigue? Or it just makes you tired all of the time? Sleep would be welcome in my world!

THANK YOU!!! sorry for all of the questions. So glad that you saw my post!

Emily

[pamyla]

Hi again, no problem, ask as many questions as you want

I think I was put on plaquenil for both pain and babesia. Gotta love those multi-purpose drugs Now that the babs is supposedly gone, I'm still on it to keep the inflammation down.

I've also heard that plaquenil can help the antibiotics penetrate better. So, watch out cause that could mean stronger herxes. I think that might have been what hit me at the beginning, but who knows for sure - it's so hard to tell! In the long term though I think it made it better, as it keeps the pain in check.

You sound as sensitive to the drugs as I am. How is the malarone going? I was barely able to tolerate the mepron. I had weekly liver checks and my enzymes kept elevating even when I was taking 1/4 tsp every other day. Awful stuff!

For plaq, I think I started on half a pill every other day and slowly worked up from there. I think the pills are 200 mg each? I've had no issues breaking them in half, although they taste awful Taking at dinner might be a good idea to start with. See if it makes you tired, like it did for me.

By the way, are you taking the name brand plaquenil? My doctor says generic doesn't work well. Too bad cause it's expensive!

That's great about your eyes! Keep me posted on how you do with the plaquenil.

Pam

[dizzygirl]

emily hi.. i dont have any words of wisdom on these meds your talking about.. but i was glad to hear that lyme treatment is helping with neck pain.. i hope that you are able to tolerate the news meds.. and that you get some improvement with it... and i your will cherish any improvement and sense of normalness (sp??? )..

good luck dear

big hugs

linda

[corina]

never even heard of that med em (well, maybe that's just my luck!!! ), just wanted to say hi to you,

corina

[Guest malosp]

Hi Dancing Light,

I am so glad you are going with the slow gradually increasing dose lyme regime. I think that is where a lot of people have problems and end up stopping the antibiotics because their doctors have them on to much too soon.

I was probably lucky that I had not had lyme symptoms as long as some, so when I took antibiotics I was able to tolerate (barely) the high doses of antibiotics from the beginning. I would do it different though if I was to do it again.

First I was on tetra and then I was on plaquenil for about 5 1/2 months. This was along with biaxin.

Interesting enough I have found people who able to get rid of the babesia by taking plaquenil even though not all LLMD's believe plaquenil will get rid of babesia. It seems to take several months though to accomphlish that.

I started with one pill a day and increased to two 200mg plaquenil each day. I took it with my biaxin in the morning and at night. But take it with food because it can definitely give you nausea and stomach aches in the beginning before you adjust. If you are only going to take one to start I would take it at night.

I never had bad herxes with biaxin/plaquenil but it might be because I was on a huge dose of tetra in the beginning for 6 weeks and I herxed very very bad. It may have gotten the germ load down.

But I think your idea of increasing slowly is probably very good if you are sensitive to all antibiotics.

What I noticed with the plaquenil is that by the end of my treatment I had rashes on my arms and sometimes severe itching of my legs. I think it is important you know that so you won't think it is a herx or yeast. From what I hear not too many people get the eye problems as many think. But it is good to get eye exams to make sure.

I am now no longer on antibiotics and so far so good. I would say that biaxin/plaquenil is a good drug combo to get rid of the lyme and possibly babesia. Just remember to be careful and write down your symptoms every day so that you can tell the difference between a herx and any reaction to the drugs themselves. And of course do not be afraid to back off if needed. That is the one thing I would do differently now....is that I would have started with lower doses of antibiotics and built up more slowly.

[DancingLight]

Pamyla and Malosp,

I'm sorry I didn't get back to this post sooner. I can't believe how fast the posts move from 'page 1' and then somehow I lose track of them, getting sidetracked by new posts!

I also kinda wanted to wait a little bit to see how I was doing with the Plaquenil and check in with you folks!

I cannot THANK YOU enough for being there for me. It helps so much knowing there are others travelling this lyme/ANS journey b/c it is certainly uniqute to navigate.

Malosp--you are right about going slowly...it is so hard to stay patient though. i am glad that you are doing well without abx so far. in the end, how long were you on abx for?

Pamyla--Your comment about taking the brand name is interesting, as my doctor did not say anything about that. I have medical assistance and it is virtually impossible to get anything covered so, I'll pretty much take this to start. I will ask my doctor at our next phone consult though about brand vs. generic.

As for the Malarone--I am only taking the pediatric dose--1 pill a day. My doctor wants me to get up to the adult dose which would be four a day. When I tried to go up to 2 tablets a day I got really sick, but am okay at one a day. I don't want to increase it right now though while adding in the Plaquenil. I'm probably calling more shots than hewould like right now!

ANYWAYS....TO THE POINT OF THIS POST!

Do either of you remember how long it took you to get to the dose and how you went about increasing? I have done about 2 weeks at 1/2 tablet every third day, and now about two weeks at 1/2 tablet every other day. I had a teeny bit of tummy upset and headache at the very beginning but not anymore.

Other than being so drowsy I think I am tolerating it fine. But, it is sooooo hard to tell b/c I feel so terrible I have no way of sorting out what the heck is what! I'm not sleeping as well even though I'm so tired. And am having more ANS stuff which is often the way I herx, but I felt this way before starting the medication.

So, do I go up to 1/2 every day now? or 1/2 for two days and then a day off?

How long did it take for you to notice that it was helping with pain? B/c I get massages to help 'clear the toxins' since I can't exercise and this past week was the FIRST time in years that my massage therapist could even touch my neck without me jumping off of the bed! Usually any work around the upper spine causes me a major ANS flair (pounding heart and also throbbing all around the base of my neck and skull). This time, NOTHING. It was amazing. She could even massage areas of my neck that usually she doesn't even TRY to do.

I am hoping that if the fatigue is from the Plaquenil, It'll pass soon like it did for you Pamyla! I cannot say I am enjoying this process. UGH.

I am also going to increase my mino to 4x a week from 3x a week and see how it goes....

At this rate I will be 80 before I start to feel human...

Sorry for all of the ramblings!

Not being very focused. Can I blame it on the Plaquenil????

Later Lyme alligators!

Emily

[pamyla]

Hi Emily! Hope you are doing ok. It took me a long time to work up to the full plaquenil dose. I'm guessing it was between 2-3 months. To increase, I usually add in half a pill and see how I do. If I feel really badly from it, I'll wait until I feel better before I try it again. If I tolerate it ok, then I'll take another half the next day. I usually keep trying to do consecutive days, unless the side effects start getting worse. With certain medications that seems to be the only way I can get on them, because otherwise I won't function.

Just out of curiosity, do you have trouble getting off medications too? Cause I have to wean off just as slowly sometimes...

I think you really need to listen to your body - even if you are not taking what your doctor originally recommends. We are all so different in what we can tolerate. I usually tolerate what I can and then talk to my doctor about the symptoms I have when I increase the medication. A lot of times, she will tell me not to try to increase any further, so I never actually make it to the recommended dose. Guess I am also on the slow track

I wish I could tell you how long it took to really "kick in" with the pain, but I'm not entirely sure on that. I think at some point I looked back and realized I had a little more energy and less soreness than I usually had. So, it wasn't a big dramatic difference, more of a gradual overall effect.

Here's hoping the plaquenil starts to help you

Pam

ps - Malosp, that's interesting about the itching. Could you actually see a rash on your legs? I ask cause last week my toes were itching like crazy. It was maddening, yet nothing was physically wrong with them. Very strange.... After a few days they just stopped itching, and I still have no idea what caused it in the first place. For now, just happy it's gone

[DancingLight]

Pamyla,

THANK YOU so much for replying. This journey has be so befuddled.

To answer your question about going off of meds, yes, I have to be very slow and deliberate also, just as I am with going on them. It takes me months to get off of something.

I think I am sort of in that 2-3 month ballpark with the plaquenil. I wonder, though if I will get past 200 mg a day. I decided to go two days on, one day off of 1/2 pill for a week and then go to 1/2 pill every day for a couple of weeks and then go from there.

I also added in one more mino a week. Pathetically slow! 4 50mg tablets a week!

My massage therapist can tell a difference in my response and I can feel a difference in pain when I am getting a massage, but otherwise the change isn't tangible yet.

I AM seeming to have that extreme exhaustion you spoke of.

The biggest challenge for me (and it seems you also? you seem to have a fairly low baseline as well as low tolerance for the med increases?) is that I already feel HORRIBLE all of the time. So, increasing meds just means feeling unbearable. It's hard to strike a balance, b/c without the treatment I will just stay feeling horrible, but the treatment is so grueling it's hard to keep at it and not want a break from feeling so awful.

The past 2 months I haven't had a 'window' of seeing any changes manifest. I feel like I am just so busy herxing and dumping toxins. And I am wondering how much the Plaquenil is contributing to this (although I already felt so badly at the time that I started it).

It's very hard to sort out what is a herx and what is just how sick I am from the Lyme. Am I making one bit of sense? It takes so much blind faith to just keep making myself feel worse in hopes that someday I will feel better than this. And what is better???????

I'm struggling....sorry to dump on you all!

Right now, I am just trying to strike the difficult balance b/w taking enough meds to make progress but keep the ANS symptoms in check. At this point, they are bad and I feel like a wet dishrag, BUT I also feel stable enough to keep going. I know what it's like to go too fast and end up in the ER and having to stop the abx, so I'm just hoping that if I can mentally/emotionally/spiritually get through this level of physical pain, I'll be able to make progress.

Does any of this ring true for you too?????? Just wondering? I knew the process would be hard...and I think I knew it would be this hard or harder. But knowing that still doesn't help me when I feel so yucky!!!!

Okay, Morgan needs to call whine-1-1 on me. That was a major vent.

Just know that we are travelling this journey together....that's what gets me through!!!!! Knowing I'm not alone....

Take care as best you can,

Emily, The Turtle Girl

[DancingLight]

P.S. I just thought about this--with the issue of babesia. We never got a positive test for babesia, but my doctor suspected it b/c of the severity of how I felt. He called it an 'indescribable feeling'...and I thought, 'YES!' it wasn't just that I couldn't articualte it all these years.

Maybe though, I really do have Babesia and that is why even more than a teeny bit of malarone is so intolerable and perhaps why I am feeling sooooo much worse since starting the Plaquenil.

Food for thought....

Emily

[pamyla]

Hi Emily, Wow, I relate to a lot that you are saying. With lyme it's somewhat different than dealing with just POTS because with POTS when I'd feel badly I'd know I need to rest or cut back, etc. But with lyme you're supposed to feel bad, so you try to keep pushing forward, keep increasing the medication. But then after weeks, months of feeling badly you start to wonder - am I really getting better. And, it can sometimes be very hard to keep hope up as you go through treatment.

I'm in a similar boat right now, feeling awful, and not knowing exactly why. It's a hard choice on whether to continue treatment or just stay where you are.

Babesia treatment was really, really awful for me when I was on the mepron. If you feel anything like that - I'm really sorry. For about 3 months I felt really icky and toxic. After 3 months, I was switched to another medication and felt 100 times better. Mepron is really, really toxic stuff. I hear malarone is a little more tolerable, but I can still imagine it'd hit you hard.

Anyways, hang in there, I know it's hard. Feel free to send me a message if you need to vent more

Pam

ps - I'm impressed you can tolerate massage!

[DancingLight]

Hi Pamyla!

Thank you so much for helping me out. Our feelings are very similar. I will try to PM you soon so that we can talk about Lyme and not get too off-topic on the board. But, you know that double-edged sword. I feel like if I want to kick this in the butt (the Lyme) I am going to be even WORSE about being able to keep up with email! And folks here know, I'm the queen of slowness in that department!

Anyways, I would like to tell you more about the massage and tolerating it (it's actually been really interesting sicne I started Lyme treatment vs. when I was not).

But, first, I wanted to ask you why it was so surprising to you that I tolerated massage so that I could better tailor my answer!

Thanks!

Later alligator!

Emily

[pamyla]

Hi Emily, Massage gives me an awful herx reaction. Do you get that? I went for a facial a few months ago and the lady did a lot of massage with me during it. The next day or two I was exhausted and really sore - although it felt really good when she was doing it - lol! I asked my doc about it and she said that right now massage for me should be limited and very light. I think it can detox you, which should be a good thing, but only if your body can handle it.

I'll be interested to hear your experiences about massage

take care,

Pam

[AJVDK]

Emily and Pam,

I am so gald to have you guys on the broad. I feel so dumb when It comes to Lymes. What is the plaquenil used for? How you you all keep going and stay positive being in pain so much. My doctor keeps me with pain pill to get thought the pain, but is there anything better? Is there anything you can do to keep the pain down?

I feel bad always asking so much, but I am still so new to all this. Emily and Pam hold long have you been treating the lymes? are you see any improvment with the POTS?

You both a are great!

Amy

[pamyla]

Hi Amy,

Plaquenil is often used to keep inflammation down, but, as it is related to a drug that is used to treat malaria (the name escapes me at the moment...) it is also given for fighting babesia. What kind of pain pills are you taking? In addition to the plaquenil, I take zanaflex at night. Also, I was recently given a prescription for lidocaine patches. I primarily put them on my neck, but you can cut them up and place them anywhere you need them on your body. I like those because I haven't noticed any side effects Other than that, I find hot showers are a necessity in the morning to work out the stiffness, and sometimes at night if I'm really sore.

I started babesia treatment about a year and a half ago, and did that for about 8 months. After that I started lyme treatment. Since starting treatment, on my good days I can stand 2-3x times longer than I once could. I only wish this was consistent! I have started to be able to tolerate a little bit of exercise. And once or twice I forgot to take my beta blocker and made it through the day. I didn't feel well when this happened, but it was a big deal to me because before I wouldn't have survived 20 min without taking it - my heart raced like mad without it. So, overall I think I have had progress, but it is slow going and sometimes I don't see it when I am having bad days.

Hope this helps,

Pam

ps - Emily, you're quiet - you feeling ok?

[RichGotsPots]

Hi Pamyla!

Thank you so much for helping me out. Our feelings are very similar. I will try to PM you soon so that we can talk about Lyme and not get too off-topic on the board. But, you know that double-edged sword. I feel like if I want to kick this in the butt (the Lyme) I am going to be even WORSE about being able to keep up with email! And folks here know, I'm the queen of slowness in that department!

Anyways, I would like to tell you more about the massage and tolerating it (it's actually been really interesting sicne I started Lyme treatment vs. when I was not).

But, first, I wanted to ask you why it was so surprising to you that I tolerated massage so that I could better tailor my answer!

Thanks!

Later alligator!

Emily

Did your lyme or co-infection cause you any breathing issues?