What to Do for Lupus (Sle) and Fibromyalgia?!

Updated on December 28, 2009
J.M. asks from Elgin, IL
35 answers

has any one taken paquinel (anti-malrial) for lupus and saw resutls? just started and I know it can take 2-3mo on the meds but i am just not feeling sure about taking it!

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So What Happened?

Thanks to everyone who has responded!!! I have just been going through all of these again and what a help all of you are!!! I have stopped taking the paquinil, I have not seen any results, and although my symptoms have been awful( I am sure due to the stress of 2 of my kids having "brain surgery" for chiari type 1 in the last 2 years) I have not been back to the doctor- I really need to find a rhumetologist closer to me in Elgin, so if any one has a good doctor let me know... and thank you to all that have responded, it really does help!

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C.S.

answers from Chicago on

J.,

I do not have Lupus or fibromyalgia, so I can't really help with that. However, 2 days after I had my second son, it was confirmed that I had Multiple Sclerosis. That was 2 1/2 years ago. As soon as I was diagnosed, I joined a few support groups online and that has helped tremendously. At first I just had soooooo many questions and I didn't know anyone else who had what I had. But then I started searching the support websites and was happy to not only get answers, but also to realize that I wasn't alone.

I would strongly suggest finding a support group online. I think it will help with any questions you have and you would be talking to people with Lupus.

Best of luck,
C.

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N.D.

answers from Chicago on

Hi there-

I too have Fibro and suffered for many years with it. It wasn't until last August when my Doctor prescribed a medication that changed my life. I can't believe how much pain I was living with. I now feel alive and am able to keep up with and play with my children without getting exhausted. The magical pill? Lyrica. Look into it. It seriously changed my life.

Feel free to contact me if you have further questions. Hope this helps and hope you feel better soon.
N.

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L.B.

answers from Chicago on

From what I understand lupus & fibromyalgia are the body's response to major stress and/or emotional trauma.
I recommend some books: The Mind/body Prescription by Dr John Sarno, You Can Heal Your Life by Louise Hay & Everything You Need To Feel Good by Candace Pert.
Your body is communicating that some changes need to be made. Listen to your body and be open to new ways to take care of yourself.

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J.L.

answers from Minneapolis on

Yes, I've been taking plaquinel or hydroxachloraquine over 10 years. I understand your concern as it does have some side effects. You need to be seen every 6 mo. or so by an opthamologist because it can create a build up in the retina. And it does have to build up in your blood to work but its worth taking absolutely!!! Good Luck

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P.T.

answers from Longview on

I have and it helped for a while but I had a better response with the steroids....

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L.V.

answers from Chicago on

I was diagnosed with Lupus in 2006 while pregnant. I have been on Plaqunil since then.
For me, I saw results when taken in addition to other medications. I have since up’d my Plaqunil, but been able to reduce my other med’s (which have worse side effects).
I have tried a lot of the different medication, and they all seem to take some time to work into your system. Other then Prednisone, there were none that had immediate results, at least for me.
Lupus is a mysterious illness that a lot of people haven’t heard of.
If you ever need to vent or just want to compare stories, I am happy to listen!

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S.W.

answers from Dallas on

I have both Lupus and Fibro...I was unable to take generic plaquinel, but the name brand stuff seems to have different fillers or something, so I tolerate it very well. I THINK the plaquinel is making a difference---at least as far as pain goes. I find that I've cut my pain meds by half recently, but I also had a steroid shot, so, not sure which is responsible. My doc says the plaquinel is very necessary for my brain, which seems to be the main thing the Lupus is affecting, so I'll be sticking with it for awhile.
Be sure and get your eyes checked regularly while on this med.

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C.K.

answers from Scranton on

I was on Plaquinil for a long period of time and saw No results and now I am on Methotrexate (Chemo). I am seeing a bit of a result with the Methotrexate, not much though just that my rashes aren't so red and inflamed. The Joint pain is still overwelming sometime the only thing that helps that is the prednisone and pain killers. and I can't really say it helps that much but it makes it managable!

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L.H.

answers from Louisville on

I have taken hydroxychloroquine (generic for plaquenil for several years and have seen tremendous improvement. I, however, still suffer some from joint pain and fatigue though. I am much better though and have very few bad lupus flares now. Please stick with it. It does take some time for the medicine to kick in as it must build up in your bloodstream. Each month it gets better and better the longer you take it.

Take care,
L. H.

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A.R.

answers from Atlanta on

I was diagnosed with lupus 11 years ago. Plaquenil was one of the first meds I was prescribed. Ive herd from many other lupus patients that its great and that it works well for them. I also worked as a pharmacy tech for 7 years and we despenced quite a bit of it. Personaly I wasnt able to continue on plaquenil because of the side effects I developed. Everyone is different as far as the side effects go, so just because it wasnt for me doesnt mean its not for everyone else.

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N.W.

answers from Chicago on

Look into Miracle Mineral Supplement (MMS).

http://www.miraclemineral.org/

I read the whole book (I can email it to you if you want) and it's interesting. I can't personally recommend it because I'm taking it now and haven't been taking it long enough to have big results.

Its been used heavily outside the US. It's very inexpensive so it's worth a try!

Just check it out. Who knows? It might work.

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J.C.

answers from New York on

I've been taking it for about a year now in conjunction with Cymbalta. I still have pain, but minor compared to what it used to be

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M.S.

answers from Philadelphia on

was on plaquenil for 3 years - it helped somewhat and kept the steroid dose at a lower level. I say try it depending on how severe your symptoms are...good luck

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G.B.

answers from Houston on

I've taken plaquenil for more than 3 years, I thought was seening results but I have been in constant pain since 10/08.

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A.H.

answers from Detroit on

I have been on it for over 2 years now and have seen no results from it.

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S.A.

answers from Tulsa on

No I have not seen any difference with taking Plaquinel.

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S.M.

answers from Chicago on

Stretching and light exercise 3 days a week worked best for me. Takes some dedication & time for the results to kick in, but eventually my fibromyalgia pain has gotten better. I notice a difference if I skip a week too.

I was diagnosed hypothyroid in 2006 (26 yrs old), with Fibro symptoms. I have pelvic pain. After years of testing, finally I've been shown the possible starting of SLE.

Good luck!
S.

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C.W.

answers from Bakersfield on

i have taken it for about 4 years now and it has kept my white blood cell count down, according to my rheumotologist. It has been a great medication for me. If I feel really bad and tired, my dr. would give me a shot of B12 and steroid together. The pain and fatigue would subside quite a bit for about 3-4 weeks. I have had my yearly eye exams and my eye dr. says my eyes are fine, that he hasn't seen any problems associated with plaquenil in the many years he has been a dr. Like Julie C. I take cymbalta for pain but also tramadol. It doesn't take all of the pain away but does make it so I can function better through the day. I diffently notice when I don't take my meds!! I have tried Savella but It made me very dizzy and feeling as if I was in another world, messing with my head. I had to drop that. I hope this helps you. C.

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D.S.

answers from Norfolk on

I've taken plaquenil for 4 years now. It took about 6 months for it to build up in my body before I felt any difference from it.I've also had my eyes checked like directed and have no problems from it. Good luck and give it a chance to work. Gentle hugs, D.

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E.M.

answers from Chicago on

I am a chiropractic physician who practices functional medicine (and a mom of 2 kids!). I have helped many with fibro and have worked with a few SLE patients. I use delayed sensitivity allergy testing, supplements, nutrition, etc. instead of prescription drugs. Check out my website www.trilliumchiro.com or call for more info.

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A.H.

answers from Chicago on

Find a good doc by asking for opinions from this group on who to go to. Medical advice you can find on Medscape.com,,,,Mayoclinic.org....or the Cleveland clinic. Ask these great "consultants" here who treated them well and what results they had. These great mama's have never let me down. Good luck and I know we will all keep you in our prayers J.. (And do you know what, there was some ad on my edition of mamasource tonight, right next to your question? What is up with that? I want to focus on questions, not if I have a business.)

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J.D.

answers from Chicago on

I'm sorry you feel so awful. I totally understand. I have fibromyalgia and hypothyroid/hashimotos. I can't speak from the Lupus end.

Plaquenil worked well for energy and I think for pain, but I had to stop it b/c of dizziness side effect.

I agree with checking your thyroid. Many fibro people do well with a lower TSH. I keep mine at 1. The REAL range is .3 - 3.0, not the .5 -5.5 labs still say. (http://thyroid.about.com/) Many people's thyroids change after pregnancy.

I've tried over 60 meds, either they didn't work or side effects were too bad. (I'm hyper sensitive to meds) Everyone is different in terms of symptoms and what works. I haven't found the right combo yet. Many people have.

There is no "cure" so be wary of people that say there is. Especially if they can't spell or pronounce the condition. Do your own research before trying things.

I did try the detox route, the food route, vitamins, meds etc. None of those worked. Acupuncture and massage do for me. I'm working on the exercise route but starting very very slowly. I'm trying Cymbalta now. (Lyrica didn't work for me. I didn't try Savella - the new fibro med). I'm also on Synthroid and Cytomel (thyroid meds), and Wellbutrin.

Good luck!

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T.M.

answers from Chicago on

Please, please go see this Dr.-she is a natural healer who does not belive in Prescription drugs-she is wonderful and helped me cure my Breast Cancer Naturally. Her name is Dr. Karyn Mitchell in St. Charles-her # is ###-###-####-she is the best!! Good Luck! Sincerely, Maria Malak [email protected]____.com.

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S.C.

answers from New York on

i have been taking it for over nine years and it did make a diffrence you'll notice diffrence within a month.

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T.A.

answers from Chicago on

Hi J., I was just diagnosed with Lupus August 2008. I started taking Plaquenil (200mg) March 2009. I have started seeing some results. I wake up less achy, and I am not as tired all the time. The Plaquenil does make me dizzy, so I am thinking about taking it at night. I am also taking a multivitamin and calcium, as well as Flaxseed oil and Fish oil tablets. I do get very down sometimes because I feel like my youth has been taken away. I am only 38, but I feel like I am 60. I have hair loss and the rash on my face, so I am dealing with self esteem issues as well. But, I am trying to stay positive. if you ever need to vent, feel free to email me.

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C.B.

answers from Dallas on

I have taken that medication for about 7 years now. I have been in remission for about 6 years with a few flares (usually stress induced). Each person responds differently to the medication, as with any medication you may have different side effects than I have with the medication. I wish you the best!

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J.W.

answers from Chicago on

Have you thought about dietary changes in easing your symptoms? I know and have counseled a few that have fibromyalsia that have felts tons better on a gluten-free, dairy-free and soy free diet.

My article here may help you get started in your research: http://www.examiner.com/x-7158-Chicago-Family-Health-Exam... you can also read My gluten story that I posted in my family health column.

Good Luck!
J. W. MPH, ACE-CPT
Chicago Examiner Family Health Expert
Health, Wellness and Fitness Consultant

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B.S.

answers from Rockford on

My brother has lupus & has had very good results with paquinel. I don't know how long it takes to really start feeling better from it, but I have RA & I take methotrexate. It took about 8 wks for me to have relief. I have been on it for a year & accept for 1 flare up, requiring prednesone, I have been feeling great.
Good Luck! You just have to give it some more time.

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J.S.

answers from Chicago on

Hi J..

First off, I feel for you and am so sorry you have to deal with these horrible disorders. I have been struggling for years with "issues". Fatigue, all over pain, swelling, redness in the face, and my list goes on. They have continuously run tests for MS and Lupus but can't seem to diagnose anything but the fibromyalgia at this time.
I was on a NASTY cocktail of Lyrica, Mobic, Topamax and Flexeril. There were days I couldn't even recall the things i did! So then, they added Cymbalta into the mix cause they felt i wasn't "coping" with the issues by wanting to go off the meds. WOW! So, in the end, i stopped all the meds and am trying to tolerate my pain on Tramadol and occasionally flexeril. I've also been taking Roprinerol (aka Requip) to help with the neuropathy and restless limbs.

While i don't know anything about the drug they are having you take, i do know that these treatments DO take time to work. Once you've been on it for 2-3 months and start to see the true benefits, you can determine if the risks outweigh the benefits or vise-versa.
Best of luck to you.

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T.R.

answers from Detroit on

I dont take them i changed my diet it made me feel worse.

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J.V.

answers from Los Angeles on

Yes, I've been diagnosed with lupus for 10 yrs. and this whole time my Dr. has had me on Plaquenil, he recently added Naproxyn adn tookmme off ibuprophin. but also take Vicodin for pain.

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S.P.

answers from Chicago on

I have a friend with the same things, she heard about acupuncture and nutritional doctor in Frankfort and it worked. She felt better overall, still had a few days of "blah", but she was able to enjoy doing things again.

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K.S.

answers from Chicago on

I suggest talking to your doctor if s/he approves of massage therapy by a licensed clinical massage therapist. Done appropriately, massage can work as well if not better than many pain relievers for many conditions--especially fibromyalgia. You would want to start with only 20-30 minutes of massage, light and lymph-draining. It would be awhile before you would go to an hour. Any good massage therapist you could call and screen to be sure they know this.
Accupuncture is also wonderful for many people, and you can even see if your insurance covers it. Always talk to your doctor, but I really suggest it.
all the best to you.

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C.D.

answers from Columbus on

I've been taking it for about a year and I see no results.

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