Plaquenil (hydroxychloroquine)

I found this:

www.rxlist.com/plaquenil-drug/side-effects-interactions.htm

I'm on my iPad - don't know if the link will work.

Scroll down to Neuromuscular section

That's the part I was referring to, also.

Did you stop taking it today? i think that is a good idea - otherwise you won't know....

No reply yet from LLMD. Odd. They must be on vacation. I didn't call- it's probably on the message machine though. He will get back to me after he sees my note- always has before.
Still NOT taking the Plaquenil. Hoping against hope this is the trigger for the terrible walking problems and that stopping it will help resolve this. it's the LAST thing I am on in the meds LLMD had me on.... He stopped the 3 ABX 1.5 mos ago and my walking has only worsened. I am beyond tired of dealing with this- my walking (WITH WALKER) is SO bad.

Also--my local GP knows of my decision re: the Plaquenil. He knows I have FAXED the LLMD. He acknowledged that it was a decent decision to try d/c'ing it and see what happened. (I was in to see him yest re: one of the children. Hubby came with me and our youngest son, who has special needs, since I cannot drive and walking alone is too dangerous.)

Thanks for listening. Interested in anyone's input on this.

YES- still detoxing with lemon water, foot baths, taking my Milk thistle, the usual multitude of oral supplements, mainly raw foods/salads/nuts and seeds, which I happen to LOVE), no gluten, very little sugar if any, etc.. .
Have a great day all! ~ A

Thanks Girlie. Me too! And like you, I think it could take a few days. :) TY for the kind thoughts!!

Hi folks, I wanted to update you. The LLMD FAXED me back and answered a few questions I'd sent his way, but b/c he didn't call as I had expected him to, I didn't get a chance to TELL him that I had gone off the Plaquenil. Anyway, I decided that before reaching out to him again, I would wait until a total of 2 weeks had elapsed before I told him I have discontinued the drug (perhaps permanently, perhaps temporarily.) So-- today, I am up to a full 13 days off Plaquenil with no improvement in sight at all. My walking is same, but at least no worse, I guess.

Am detoxing like a madwoman, LOL. ;) j/k, but yes, I AM detoxing.

I decided to do a little more reading and found that the HALF-LIFE of Plaquenil is 1-3 months. (Half-life means time it takes the concentration of the drug to be reduced to HALF its' strength in the body as you likely all know.)

This very much alarmed me, and may explain why almost-2 weeks off Plaquenil has not been enough time to see any improvement at all. I decided to call my local pharmacist (a friend, who is also our Pharmacist, and a trusted person).

She brought up the database that they have on site and we learned that the half life is listed as 32-50 DAYS. :(

Thru her database, she also found the info Girlie and I found re: progressive neuromuscular weakness, etc.. Even though it is NOT a common reaction, she felt that with the way I described it to her, it WAS significant.

OHMY.
Guess what date that 50 days brings us to?? The EXACT date of the next LLMD apt we have in Maine-- October 2nd.

So-- Pete (my supportive husband!!) and I really feel it is a no-brainer, and that it is BEST to discontinue the Plaquenil for now. I was USING A CANE in January when I started the antibiotics and Plaquenil. Been off antibiotics x almost 2 months- NO change EXCEPT WORSENING. Only drug I remained on was Plaquenil. Now I am using a walker- BARELY-- and a wheelchair when I HAVE to get outside. I've been out FIVE times this summer. :(
Indoors, with the walker, I am DRAGGING myself from place to place. My poor shoulder tendons. :( The only thing that keeps me trying SO HARD to remain on my feet is the fact that my kids need me and I HAVE to get around. I am stubborn as a mule. Have to keep going. :( OMG it would be so much easier to give in and say 'but I can't do it!!' NOPE!!!

What words/thoughts do you all have re: the Plaquenil decision? I am all ears, but I think it's the right one... am I EVER glad I went off that 2 weeks ago!

Well, you know what I think...

With a half-life that long...I'm thinking it's still the culprit. And - you aren't getting worse being off it...and you certainly weren't getting better on it...so to me it seems like an easy decision...

Plaquenil is often prescribed for lyme disease...which is interesting if it is an immunosuppressant.
I have not been on it...not sure if my LLND prescribes it...as we have never discussed it.

Stay the course - i think that's a good idea.

You could try Curcumin (active part of tumeric) - for an antiinflammatory. I take it - and my LLND says it also has some activity against the infection.

I found this excerpt from Dr. M.R.'s treatlyme book (LLMD)

" In chronic Lyme and associated diseases Curcumin is an essential herb that

decreases pain
limits and improves Herxheimer die-off reactions,
boosts the immune system by lowering inflammation cytokines,
decreases brain injury and damage, and
may kill Lyme and co-infection germs.

Curcumin is a wonderful herbal medication that I use in most of my treatments. It is a component of turmeric, a seasoning derived from Curcuma longa that is commonly found in Indian food. It is useful for a variety of problems that occur in chronic Lyme and associated diseases.

Curcumin is a potent anti-inflammatory, a strong anti-oxidant, and an effective anti-microbial against bacteria, viruses, yeast, and even parasites. It decreases pain, limits Herxheimer Die-off reactions, decreases brain injury and damage, and may kill Lyme and co-infection germs. It boosts the immune system by lowering excess inflammation cytokines that occur in Lyme "

It is normal for you to be scared in your circumstance. Hang in there!!!

I understand that many people need you.
It is the same for me - yet our son is 22 and out on his own...but I have realized since my symptoms started that I am the "core" of the family.
My illness has really had an effect on my family - my husband is really finding it difficult. But my little family - all adults....

I can't even imagine how difficult it is for your family. I am so hoping that once the Plaquenil is out of your system you get the strength in your legs back. And hope it's soon.

Just an update (sorry not hugely positive...) :(
16 days total OFF the Plaquenil and still not one iota of improvement in walking or leg strength.

Added Dr. J's Neuro Antitox ll basic on the 19th.
Added the Neutramedix Burbur and Pinella on the 25th.

Still foot bathing.

All of this is to help detox-- and of course am drinking lotsa lemon water.
Using all the usual supplements- ALA, CoQ10, etc... I am on most of the ones recommended by Dr. B.

Increased my Vit C to 1500 mg twice daily last wk (my tolerance level.)

Added Curcumin on the 27th to help decrease any inflammation.

Since Plaquenil has such a LONG half-life, ie 32-50 days, am just hoping to see something SOON. Even a glimmer of improvement would be good. And of course, I know the 32-50 days is only HALF-LIFE so there would still be half the 6 months' worth of medication in my system, if that IS the culprit causing all the lower limb neuromuscular weakness. :( I was on it Jan 31st- Aug 16th.)

Still-- I am beyond frustrated.

Hubby and I both feel, though, that I am NO WORSE since going off the Plaquenil. I guess that is GOOD! For sure.

My brain is worried. ie: Is it the Plaquenil, or is it an "MS relapse" causing the weakness???????????? Just a FYI... I have never had ANYTHING like this worsening happen so fast. Before, it was getting worse but it was doing so more slowly.....a years-long slooooow sliiiiide.
I don't even know what to think.
I keep coming back to the fact that I have an Igenex positive WB showing active infection (IGM positive) last October...

Hoping for some improvement SOON. I am off ALL antibiotics (ie- 3) since June 15th on LLMD's orders, and Plaquenil since August 16th. He doesn't yet know I went off the Plaquenil and why I did so. Frankly, it scares me being off them all.

:( I need some improvement...
Thx for reading...

Thanks Girlie! yes, that's right- about 2 weeks.

I keep telling myself that too! :)

It's just hard as it got so steadily worse from Jan til I went off it... we had NO idea (and still don't) re: what's causing this. Hoping it is an adverse drug response. We can hope right? LOL. ;)

TY for the hugs... sending some back your way!! You are a sweet person to listen to me worrying aloud! ((HUGZ))

Alimom4, I thought I would chime in with my experience.

I have a diagnosis of Fibromyalgia. I was complaining to my Rheum that I had started having joint pain for the first time. I have had symptoms for 35+ years. I've been working with my Rheum for about 13 years and had never had joint pain. At all.

So he gave me the name of Plaquenil and told me to research it. He said the it was a drug of last resort. I have tried just about everything at one time or another. He said the one side effect was a vision problem, but the good news was that if I got a baseline exam and checked it often they would be able to catch it before any real damage was done.

He also said that it would take 3 months before it had ANY effect on the joint pain, so I couldn't expect a quick fix. I researched it he wrote the script and I got the baseline eye tests done (it's a medical test not an eye test and is paid by medical insurance). It's extremely important that you have that done, because they will be looking for change in how the eye looks. I also started on the Plaquenil.

The way Plaquenil works is that it accumulates in the blood and the reason that it takes 3 months to see an effect is it takes that long to build up a high enough dose (in the blood) to be enough to take care of the pain. Because it accumulates, just stopping it won't make any symptoms go away in a day or a week or even a month. The half life maybe 30 days, but that's on a dose basis. You have to be off it long enough to allow all of it (or enough) to leave your system. The time will be dependent on how long you have been taking it.

It continues to accumulate with each dose. Missing a dose or two or five or ten isn't going to make a huge difference. So I would assume that if you have been taking it for 3 months say, it would take 4-5 months before it was all out of your system. So give yourself a bit of a break. Don't look for improvement everyday. You'll just drive yourself crazy. I know that's easy for me to say, but worrying yourself about it everyday isn't healthy.

My eye doctor was the one who asked me about Lyme and we have been in touch about it. She sent me a link to a new article about the safety. It stated that if you take the dosage based on your ideal weight (for height, age and gender) instead of your actual weight it will take 5 years before it reaches a level in the blood stream to effect the eyes. My doc thought I would need to check at 3 mths, 6 months, a year. But the latest studies show 5 years.

So the important detail there is that it continues to build up in the bloodstream all that time. It's the level that it reaches after 5 years that could possibly do damage to the eyes.

It would hold true for any symptoms. I would expect the level of the drug in the blood stream would take the same amount of time to lower once you stop taking it. Plus the half life. So it is not going to go away fast.

The reason that you will see so many people taking it "for" Lyme is because they aren't actually taking it for Lyme. It's an anti-malarial drug. People are taking it for Babesia which is a malaria type organism or at least the symptoms. I found that almost immediately I had relief from my drenching sweats and the pain on the bottom of my feet. So it's definitely possible that any side effects could happen quickly.

I'm sorry I don't have a better answer, but I agree with Girlie that it hasn't been nearly long enough.

I hope you have a better day,
Kim

TY Kim... Yes, all that is familiar to me and I am aware of it as I researched the Plaquenil. Did just learn of the extended half-life issue recently however. (I'm an RN... thus super-careful with meds but scared witless as I am no better and have been trying SO hard to GET better.)

Appreciate the time it took to write all that down. I know it was a lot. Thank You.

My LLMD was using it as a cyst-buster for me.

I have had a baseline eye exam pre-plaquenil and my opthalmologist follows this with Visual Field tests and an internal (ie via dilation) eye exam every 6 mos. A "pain" as they are on done 2 separate days 1/2 hr away from home, but of course well worth it 'cause it is all about prevention of complications and catching anything untoward before it does damage.

The reason I am so stressed about it all is that I have seen NO improvement on any antibiotics (3 all together) since Jan- or on the Plaquenil. (It also did nada for my overuse-injury joint pain-- arms/shoulders-- I "walk on my arms" as legs are so weak.

Am now off everything. LLMD is aware 'cause he took me off the ABX June 15th but not aware that I stopped the Plaquenil Aug 13th and why.

We are to go see him on Oct 2. It's a really tough trip for us as we need child care for our youngest of 4, Noah, who has special needs. (We have no extended family here, just ourselves, which is fine, really, but can complicate things.) :) We have to travel to Maine to see LLMD and we live in Nova Scotia. Not the BEST situation. We do the trip in 48 hrs so as to get back to the kids fast. It is a 9 hr drive and involves a ferry trip and an overnight. UGH.

I just need to be better. Or at least to see some improvement! Having to go off ALL meds makes me shake my head. UGH! LOL

At present I cannot walk without a walker and that involves more dragging than walking. Hurts shoulders. I was also able to use my hubby's arm with a cane outdoors in Jan-- but I now need a wheelchair. Indoors could "walk using the walls." I cannot do that now. I have to sit on the seat of my walker to do ALL chores, kitchen, laundry, dressing our son/ washing him up/ helping him... etc.
It has been rough. Being uber-organized has helped our family. :)

Thank God for my spouse. We could not make it without his help and caring attitude. OMG I hate to even think of it. God bless that man. :)

I am being positive about everything despite what you read above... LOL...

The LLMD, in his last FAX, said my situation is "severe and complicated."

I just need to see SOME improvement. SOME!

The fact that I see NO worsening since being off the Plaquenil does help. I steadily worsened since starting it and it has been so bad.

I tolerated ALL my meds well, no issues GI-wise. That's good I know.

I am unsure whether this is ever going to help.

We go see LLMD on Oct 2. We'll see where that leads. His communication style leaves a LOT to be desired although he is kind. He knows I am a person who does better with more info as I point-blank told him so... but thus far that has not been forthcoming.

Anyway, just wanted you to know a little more where I am coming from. I have written it all down when I joined in a detailed intro post (that's just my style, LOL) but I know it's a busy place and things get lost.

Thanks everyone... :) ~ A