I have recently been diagnosed with, what my doctor calls, a benign form of lupus that I have had for 15 years. Since I was 14 years old I thought I had arthritis. My doctor says that I have the blood and symptoms of someone who has lupus, but I have no organ involvement and it's not discoid either. Is there anyone out there that his the same or similar situation? I have terrible joint pains and severe swelling, swollen lymph nodes, photosensitivity, psoriasis, positive ANA, Ro antibodies, and DNA antibodies. None of my organs are effected. I have been taking Naprosyn and Vioxx for years and am now thinking about taking Plaquanil - any words of advice would be greatly appreciated.

best,
fmk

Yes my husband has not been officially diagnosed as yet. He will be having a complete auto immnune work up done soon. He has swollen lymph that had benign tumors in or wrapped around them 3 times so far. he went to an eas nose and throat Dr. who removed the node each time. The Dr. does think this is caused from lupus. My husband also has very severe joint pain with swelling similar to gout. Once it was so bad he could not even walk 10' into our home with out help. he also has no organ involvement however his brothers and sisters all have some form of lupus. What type of theropy have they reccommended so far?
Good luck...stay positive.

So far the only course of action that has been recommended is Plaquenil, a drug used mainly to curb joint pain. I will start the medication at the end of this week. How long has your husband suffered from this? Is the joint pain contant or does it come in flares? Do you have a good rheumatologist?

Thank you for the reply, and best wishes to you and you husband!!

His joint pain flares up it is not constant but appears to be very painful. He will be going to
internist in Sept. I read about a drug for cancer patients to reduce inflamtion and tumors called Gleevic. I know this is not cancer but, I do plan to ask the Dr. if it may be something that would help.
He had his first symptoms about 9 yrs ago and has 3 surguries to remove lymph nodes. I hope to know more in Sept. Thank you for the information you provided. Good luck stay positive!!!

Dear laz,
This is only my opinion, but I suggest that you see a good rheumatologist who has experience with lupus (I have a great doctor in NYC if you'd like I can give you the info). As for the inflamation and joint pain, which I have years of experience with, he can take an anti inflamatory like Vioxx or Naprosyn, which have helped me tremendously over the years.
Best regards,
fmk

FMK,
Thanks NYC is not to far to go if it will help him. If you don't mind I would appreciate the info about the rheumatologist. The Dr. he is scheduled to see is doing some kind of study on the anticoagulant lupus, which his brother has. We do keep an endless supply of
motrin.
Thanks,
Laz

The doctors name is Harry Fisher (i've included info on him at the bottom of this message). I find him to be very knowledgeable, but most importantly I like the way he interacts with me. In the past I have been very unhappy with many of the doctors 'bedside manner'. Dr. Fisher has been very straightfoward, he addresses all of my questions and concerns, and above all is not afraid to say it when he does not know the answers. I will be starting the Plaquenil tomorrow, are you familiar with this drug? I have been told that in some cases it completely eliminates joint pain and swelling (not just conceals it). Just the thought of living without these pains is like a dream for me, I'm sure you and your husband feel the same way. Best of luck to you and your husband, and if you'd like to contact me off the board feel free, fainakouperman@hotmail.com

Best regards,
Faina

Fischer, Harry D. M.D.
Chief, Division of Rheumatology, Beth Israel
Center/Institute/Program New York Bone & Joint-
Beth Israel Medical Center

Phillips Ambulatory Care Center
10 Union Square East, Suite 3D
New York, NY 10003
Telephone http://www.healthboards.com/ubb/frown.gif212) 844-8101 - Fax http://www.healthboards.com/ubb/frown.gif212) 844-8167
E-mail:hfischer@bethisraelny.org


Medical Specialty Internal Medicine
Rheumatology

Specialization/Clinical Interest Lupus, Osteoarthritis, Osteoporosis, Rheumatoid Arthritis, Scleroderma, Sjogren's Syndrome, Spondyloarthropathies, Vasculitis
Board Certifications American Board of Internal Medicine, 1983; American Board of Internal Medicine, Rheumatology, 1990
Medical School Mount Sinai School of Medicine, New York, NY, 1979
Residency Training Internal Medicine, Beth Israel Medical Center, New York, NY, 1980-1983

Fellowship Rheumatology, Hospital for Joint Diseases, New York, NY, 1983-1985

Academic Appointment Assistant Clinical Professor of Medicine, Albert Einstein College of Medicine

I don't know how those frowning faces appeared in the last post, I did not mean to put then there.

I am not fimilar with the drug? I have a couple of books but it was not in there.
As for the frown no problem, I am still trying to figure out how to use this site. ( Although I really think it's a great site )

Laz

Also if you would like to contact me off line my email is laz1993home@yahoo.com

Thank you very much!!!

try looking up the generic name hydroxychlor (it's an anti mallaria drug). Hope you're well and in good spirits!!

Hi fmk,

I know exactly how you feel! I was diagnosed with Lupus when I was 16. I have had all of the problems you have, but have not had definite organ involvment. I recently had a kidney infection that caused abnormal lymph nodes to appear, however I do not know if it is related to the Lupus. I am now 24 and have been on plaquenil for 8 years. It has helped me tremendously. It is an anti-malarial drug and has helped me very much with my fatique! I still have bad days and now have some back problems, but I strongly urge you to consider plaquenil it has helped me and my father. Please feel free to contact me I know what you are going through. Best of luck to you and God bless!!

ROSICOLE

Actually, this is not a response,but, a question... Does the plaquenil really get rid of a lot of the pain? I have recently been reconsidering trying it out. I tried using Aleve and it works for the pain, but, I am always falling asleep at work and I can't do this anymore.... (I have mild lupus.) It is really starting to hurt in the morning and especially in the winter time. It is no fun! I am hurting and now I cannot deny it anymore! I have tried to defy it,but, unfortunatley it comes back with a vengance. So does this med work or what? ( my sister said to try the aleve, but, that's not cutting it for me,and I think that it is too dangerous to keep using it on a regular basis..help please! Thank you!

Dear FMK and Nightowl2,

My wife has had a form of Lupus called "mixed connective tissue disease" for years and although it is a non-lethal form of lupus, it does attack various organs and usually settles in the intestinal track causing diarrhea. She has taken plaquenil for years. Plaquenil is, as the other posts state, an old anti-malarial drug that is usually given to lupus patients not as a pain drug, but to help lower ones sensitivity to sunlight that can trigger lupus flares. The drug must be taken for up to six months for the full effect to "kick" in and then continued without any significant periods of missed doses or the effect can be lost and take time to regain. My wife also has fibromyalgia(FM) which is a much more debilitating illness for her as it is the one that causes a LOT of pain all over her body. For years she has tried everything conventional and non-conventional available to deal with the pain, but only opiates would help and she then developed tolerances to them and had to quit. She was becoming desperate until I stumbled onto an internet article about a doctor that found that while treating his patients that had both ADD and FM they told him their FM pain was much better when they took ritalin for their ADD. My wife's doctor let her try a sample and her pain was GREATLY improved on the first dose. She has now been on the time-released version of ritalin called Concerta for almost 3 months and is doing much, much better with 90% of her pain reduced. The ritalin works on the pain because it causes the body to release dopamine which is a natural pain reducer. Sorry to ramble on, but we are hoping many more people that are suffering will be helped by this information. My wife does think the plaquenil helps her and if you take it it is recommended that you have a retinal eye exam every 6 months as a diagnostic precaution against ever developing an eye disorder that can be caused by placquenil. It is almost always the result of the large doses that were given to malaria patients which were much higher than the doses given for lupus, but they still want the eye exams just as a precationary measure. Good luck with your treatment search.

Soar1

[This message has been edited by soar1 (edited 01-13-2002).]

I'm on plaquenil too, but I've never heard that it reduces my sensitivity to the sun. I think it has helped with the pain. The Dr. still tells me to avoid sun though. It is also said that plaquenil is supposed help stop the progression of the disease or diseases......... they seem to prescribe it for most autoimmune diseases. Ann

I have never taken plaquenil, am allergic to cortisone and most medications of any kind. The lupus I have has affected every organ system. In fact, I also have chronic fatigue syndrome, ms, sgorens' and mixed connective tissue disease with scleroderma.

Almost a year ago, I found myself sitting on my couch waiting to die, getting tired breathing and in more pain than I could stand. Then, I found a woman trained in Oriental Medicine who called me that weekend and talked to me for over an hour. Upon seeing her, we discussed my case and she was actually amazed at how well I was despite the 25 years of this.

To make a long story short, she did acupuncture and prescribed Chinese herbs. Even my friends saw a miraculous difference immediately. Since doing the acunpuncture I don't know pain in any shade similar to that I experienced on a daily basis. I can only tell you that this combined with a "lupus diet" help immensely.

If none of you have read. Lupus:Alternative Therapies that work, I strongly encourage you to do so.

I wish you all well on your journies.

Debra

Where can you get Lupus:Alternative therapies and who wrote it? It sounds good. Jean

Plaquenil....WONDERFUL MED. Has helped me so much with my leg pain and joint pain. I would highly recommend it! I've been on it for one year....just remember to give it a couple of months to really start helping. I don't know what I would do without it, it has made such a difference to me!
Donna