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View Full Version : Just started Plaquenil


TICKED-OFF
02-17-2005, 05:17 PM
Hi

I'm new to the Arthritis Board. I have been wasting my time on the Lyme Board for over 1 year. I can tell you one thing I have learned, get a second, third, forth and fifth oppinion and then YOU decide how to care for yourself! Some (most?) doctors don't have a clue. Ask the same question to 5 doctors and you will get 5 different answers.

How is this Drug Plaquenil? Has it worked for you? My doctor said no generic brands allowed.

Thanks for any info you can share.

Arthur Itis :yawn:

cindygre
02-17-2005, 08:22 PM
Seems to help. Minor sideeffects that go way for the most part. I also take MTX and Lodine. Good luck. Cindy

TICKED-OFF
02-17-2005, 08:26 PM
OK Cindy

Thanks for the reply.

I will give it a few months and see how it is.

AA

creinha
02-18-2005, 08:25 AM
I started on the generic brand of Plaquenil last August. It took a couple of months to kick in, but it works really well for me. The only side effect for me was nausea for the first two weeks. So far, I'm really happy with my results. Why did your doctor say no generic?

TICKED-OFF
02-18-2005, 04:04 PM
I'm not sure why but she did stress the fact that it could not be genetic. I will ask her next visit.

Was your change gradual? I have aches and pains all over. I am wondering what I could expect.

Cindy.....what is MTX and Lodine used for?

CTuit
02-18-2005, 07:00 PM
Would be interested in why no generic also. I've been on the generic for a little over a year now. Haven't had any problem with side effects. It took about 6 weeks to kick in and did help some but didn't quite do the trick by itself. Tried Methotrexate and Arava and couldn't take either. I'm now on Enbrel and its helped quite a bit.

creinha
02-19-2005, 12:55 PM
Yes, the change was gradual. Hang in there.

Hellokitty1973
02-21-2005, 04:25 PM
I have been on Plaquenil for about 2.5 years now. I do take the generic. For me, it took about 3 months for it to really kick in. I have been doing well since (knock on wood). I was on 200mg 2 times/day.. now I am down to 1 per day. The good thing about Plaquenil is that it is probably the least "toxic" (for lack of a better word) than many of the drugs out there for arthritis. Just remember to get routine eye exams every 6 months.

Good luck!

TICKED-OFF
02-21-2005, 04:49 PM
I'm also taking 200mg 2 times/day.

What exactly is the Plaquenil suppose to do? Is it for pain?

What is MTX and Lodine?

Thanks...

telvock43
02-23-2005, 06:31 PM
I don't know if I would consider it wasting time. Alot of people put their arthrits into remission using minocin. Prominent drs. believe that arthritis is caused by a cell wall deficient bacteria.

twinburl
02-23-2005, 09:00 PM
I do have a question for Ticked-Off. Can you tell us how long you were on the a/p protocal, what meds you took and if your dr was an a/p dr. or an md?

I have sjogren's syndrome and have read alot about a/p not only for lyme's but also RA and lupus. Any information you can give would be helpful.

Thank you :wave:

TICKED-OFF
02-24-2005, 10:12 AM
I'm sorry twinburl but I don't understand your question.

What is a/p?

I did see a Infectious Disease Dr., Neurologist & G.P.

telvock43
02-24-2005, 02:38 PM
There is a specific protocol to put rheumatic conditions into remission using clindamycin and minocycline . It is called antibiotic protocol hence the ap. If you do a search for arthritis and minocin You will find the national institutes of health list it as a treatment for arthritis . It is not fast it takes awhile to work but it works on the premise that you have a mycoplasma infection.6 months is not long enough to see if it will work or not.

TICKED-OFF
02-24-2005, 03:03 PM
Oh.......

Thanks for clearning that up. I have a lot to learn. I will keep reading.

teachergirl64
02-26-2005, 02:44 PM
I've been taking Plaquenil since May 2004. It took about 4 months for me to be able to tell a difference. I gradually noticed that my joint pain was less. I also started MTX in July. Plaquenil and Methotrexate (MTX) are DMARDs and Lodine is an anti-inflammatory. It's important that you visit your opthamologist a couple times a year while you are taking Plaquenil because it can cause retina damage, although this is a rare side effect.

JodieH
03-01-2005, 06:22 PM
I understand your frustration. I never had any luck with Plaquenil or any of the anti-inflammatories. When I was on Plaquenil I was receiving monthly shots of cortisone. That doctor was a quack. Everyone's body responds differently. If your doctor talks with you about your options - remicade, embrol, etc., and takes x-rays, blood and urine regularily, then they are probably on the ball. If not, ask why they're not.

Also, make sure you get the 6-mos eye exam w/plaquenil.

Good luck!

hop
03-04-2005, 03:30 PM
For those with the question on generic form of plaquinil, my rheumy said the generic form can cause a bad hive rash as a side effect--often times on the arms--and that "it" is stored in the fat of your body and can be hard to get rid of. So she insisted on the brand-name form too.

I have only been on plaquinil for three weeks now, almost four. I'm not sure what to expect either--I know plaquinil is a DMARD and supposed to slow the progression of the disease, but not sure what it's supposed to do for symptoms. I am still taking prednisone and my symptoms are always greatly helped with that. My rheumy said 3-6 months for the plaquinil to work. She is phasing out the prednisone over time and may add a third medication when I go back in 3 weeks. I think she may try to add in a NSAID but not sure which given all the bad press lately. Naproxen made my reflux terrible and Bextra did nothing for me. We'll see.

The eye testing is important. Good news is if you have eye problems, they reverse once you stop the plaquinil.

Good luck!

Kathie T.
03-05-2005, 04:43 AM
hop- what do you mean DMARD? I have high antibodies but no symptoms but my rheum wants me to take plaquinil. Is it because it slows the progression of the disease?

SkeochGirl
03-05-2005, 10:23 PM
I took Plaquenil for 5 years and finally told the doctor no more. It was one medicine that never helped me feel better and it never helped my blood work. I didn't have any physical side effects and on too many drugs to know what was effecting my blood counts, although it was probably the MTX and Arava. My arthritis has yet to respond to anything but prednisone and NSAIDS. I have even been on the superdrugs like Remicade, Enbrel, Humira, Kineret etc....nothing has cracked my RA yet.

Shandi

hop
03-06-2005, 11:09 AM
To Kathy T--

DMARD is a class of drugs and it stands for disease-modifying anti-rheumatic drug. You got it, it's supposed to slow the progression of the disease. When you say high antibodies, do you mean rheumatoid factor or ANA? If you don't have any symptoms, is your doctor just presuming you will get them soon since you test positive for antibodies? I think some people can be positive with no symptoms...and then do you treat that anyway? Hm. :confused:

I am just hopeful this Plaquinil will work. I am nervous to try the other drugs. But so far, the only thing that has worked for me is Prednisone and I know that's not really an option.

Suzila
03-06-2005, 02:02 PM
Everyone's RA is different and some meds will work for one, while the same won't work for another.

Plaquenil did not work for me. I also did not feel well while taking it. At that point the doc switched me to Arava, which worked great, but not quite good enough for the rheumy. He switched me to Remicade and it looks like I've had no progression of the disease for two years...since I started the Remicade.


You have to trust that the doctor knows what meds to try on you, but if you don't feel well while using something, and they're checking your bloodwork regularly, let the doc know for sure. There are many different combinations of meds to try.

Kathie T.
03-07-2005, 03:53 PM
Those of you on Paquenil for RA I have a question. What was your RF factor. I have limited symptoms, none all that bad, but my RF is 104 (norm 0-40) so my rheum wants me to start Plaquenil but I am hesitant and really need to know in the scheme of things if this is a high RF factor. Thanks, Kathie

TICKED-OFF
03-07-2005, 04:25 PM
I have a negative RF factor. I don't think it means too much.

hop
03-07-2005, 04:47 PM
I have a negative RF factor too. Maybe there are other blood tests, like ESR (sed rate) and WBC which your doctor feels are more indicative of an ongoing inflammatory process in your body ... which might be why the doctor wants to start preventative measures? Has he given you some sort of diagnosis? (Forgive me if you indicated this already in an earlier post)...

It can take a while for blood tests to help with a diagnosis and I guess they just change over time too? My left knee had been heavily swollen for 4 months and my ESR was still normal, except for very minor changes showing slight inflammation. Then at 7 months, my right knee started swelling and at that time, my ESR came back abnormal and several other blood tests came back abnormal too for inflammation in various ways. That is when I started Plaquenil. At month 8, I am starting to have problems in my left wrist--maybe a trigger thumb? So I am still very early days with all of this and who knows what, if anything more, will happen. I guess I am still naively hopeful that this will be it! :jester:

Kathie T.
03-07-2005, 05:43 PM
Sorry that I keep hammering this, but is it safe to start Plaquenil BEFORE you get symptoms?

hop
03-07-2005, 08:05 PM
I am so sorry...I have no idea and would have to defer to those more experienced. It does seem sort of strange to me...maybe get a second opinion? Good luck!

new2ra
03-19-2005, 08:14 AM
I am also on Plaquenil and mobic have either of you had any itching from it. I am misserable???

TICKED-OFF
03-19-2005, 09:42 AM
It's been 1 month for me.

No itching here.

 
 
 




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