plaquenil

DonnaK · Posted: Thu Jun 26, 2008 4:06 pm Post subject: plaquenil

Hi, My name is Donna and I am 57 years old. I am waiting on a diagnosis now. I had blood tests 3 weeks ago and am scheduled to go back in on July 15. The rheumatologist's nurse called me and said that the doctor had reviewed my tests and wants me start on plaquenil. When I asked her eaxctly what I had she said that the doctor would go over everything when I come in. I have been having a terrible time with my hands, wrists, ankles and shoulder. Swelling, stiffness and pain. I am so extremely tired all the time. When I went in for my blood tests I was given a steroid shot which worked wonders for about 2 weeks. I was beginning to think it had cured me. Now it is all coming back again. I read the side effects of the plaquenil and I am terrified to take it. I just don't know what to do.

itcbitc · Posted: Thu Jun 26, 2008 4:19 pm Post subject:

Hi Donna,

Take a deep breath. I have been on 400 mg of plaq since 2005. I haven't had any side effects nor have many other people I know. I suspect your doctor believes you have Lupus, and although it is natural to be petrified--been there--done it and still do it from time to time--Lupus in most cases is manageable. You need to be patient. Most medicines take awhile to kick in. You probably had a shot of Methalprednilasone (sp?)--It's effect declines each day. It's kind of a temporary fix.

Good luck and keep us posted!

laurid8967 · Posted: Thu Jun 26, 2008 8:46 pm Post subject:

Hi there and welcome -
As "It" said, plaquenil side effects are not common. Im sure Saysusie will be along soon to give you "the facts". You can trust the information you get here. The people are informed, compassionate and trustworthy.
THe plaquenil is an incredibly helpful medication in which the benefits FAR outweight any risk. My pain (though I am also on Prednisone) has decreased so much in only one month of meds. The plaquenil does take a while to take effect, so Im on prednisone another month. Its the steroids that have the lousy side effects - moon face, weight gain, bone damage, irritability, sleeplessness....And even that( for me anyway) outweighs how I felt. Your doc will be more careful about prednisone doses than Plaquenil..You may have to get your eyes checked every few months, but even that sde effect is almost nil if your dose is kept at 400mg or less aday. Please, try to not worry, just get yourself better..
With love and prayers -
lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

KathyW1958 · German Shepherd Joined: 12 Jun 2008 Posts: 335

Hi Donna,
Welcome to the forum. My name is Kathy. I have SLE Lupus and have been on Plaquenil 400mg a day for over 14 years. Plaquenil is one of the number 1 drugs used in the treatment of Lupus. It is a very good drug with few side affects. I have not had any side affects to this medication. Plaquenil takes about 6 months to get the full benefit of the medication. Please don't be afraid of this medication. Go ahead and start the medication if this is what your doctor wants you to do. I think that they do suspect Lupus and like I said the benefits of Plaquenil far outweigh the side affects. Good luck and keep us posted ok.

Hugs,
Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy and now just recently diagnosed with PA and Celiac Spru. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, and B12 shot once a month.

Saysusie · Posted: Fri Jun 27, 2008 7:55 am Post subject:

Hi Donna;
Plaquenil (Hydroxychloroquine)is one of the standard treatments for Lupus and it is widely used because of its safety. Plaquenil can decrease damage to the tissues of the joints, skin and other organs in the body. It also works very well at healing lesions caused by Lupus. You should know, however, that it takes some time before you will see the results from Plaquenil (up to several weeks or months) because hydroxychloroquine has to build up in your body. Often you will be given other medications (such as Prednisone) when you start hydroxychloroquine so that you will improve more quickly. The good news is, once you start to see/feel the results, the drug works continually. For me, my lesions healed and never returned (I've been diagnosed with Lupus since 1985).
Hydroxychloroquine is one of the better tolerated anti-rheumatic drugs and 95% of patients suffer little to no side effects at all. However, as with all medications, there is a potential for side effects to occur. Mostly, these are not serious, so you need not stop the treatment if these side effects occur. The most common side effects are mild nausea and occasional stomach cramps with diarrhea of a mild degree occurring sometimes. As mentioned previously, the tablets are slightly bitter and are best taken with meals to avoid stomach upsets.
Most people are concerned and afraid due to the eye problems that Plaquenil may cause. Nowadays, this side effect is seen rarely because Plaquenil toxicity rarely occurs due to the low dosage prescribed. Plaquenil can produce pigment changes in the macula of the retina. The retina is the part of the back of the eye that you see with. The macula is the central part of the retina responsible for central fine vision.
With Plaquenil related toxicity, the pigment in the macula can change and alter vision by producing blurring and distortion of objects. These changes, if they are going to occur at all, happen very slowly over a long period of time with a high dosage. Your doctor will send you to an opthomologist two times/year who will examine the macula for early detection of any subtle changes. This will happen long before you begin to notice any symptoms or problems.
The incidence of Plaquenil related macular problems increases only when you are approaching a dose of 600 to 700 mg. per day. The average dose for Lupus patients is 400 mg. per day or less. This is a very safe dose.
As I mentioned earlier, Plaquenil is often given with a corticosteroid (Prednisone). Since you've had a steroid shot and it worked for you, you might ask your doctor about also prescribing a low dose of Prednisone. The two medications together often provides relief within days. Once your symptoms become manageable, your doctor will probably start weening you off of the Prednisone (because the Plaquenil will have built up in your system) and just continue you on the Plaquenil.
If any of your internal organs become affected by Lupus, your medications will changed in accordance with your symptoms. But, for now, it sounds as if you do not have any internal organ involvement and that your doctor is treating your arthritic pain, your fatigue, and lupus inflammation. Plaquenil and Prednisone are the standard treatments for those symptoms.

Peace and Blessings
Saysusie
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Look For The Good and Praise It!

laurid8967 · Posted: Fri Jun 27, 2008 9:17 am Post subject:

See? I told you she would be by soon! I, for one, can always count on Saysusie to provide me with accurate information. I cannot say enough how grateful I am to her, and any others, responsible for this website.
I am truly not sure if Iwould have even kept my rheumie appt if it wasnt for the support, encouragement and knowledge of these people. I am under the care today of a good rheumatologist because of the information I learned here, and the encouragement to be persistent about a diagnosis.
Keep posting and again, welcome..
Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

DonnaK · Posted: Sun Jun 29, 2008 11:13 am Post subject:

Thank you so much for your information. I'm going to start the plaquenil today. I have been feeling so bad lately it has been hard to go to work. I was afraid to start the medicine because I was afraid it would make me sick and I really need to work
I have talked to my boss about my problems. He is pretty understanding because his wife has rheumatoid arthritis and is my age. I never miss work.. I try to work even on my worst days. ( same job for 18 yrs.) I explained to him that I need to try this new medicine and that I am unsure how it will effect me.
He says I should give it a try. Please say a little prayer that it will just make me better.
I will let you know what happens in the days to come.
Thanks again...Donna

laurid8967 · Posted: Sun Jun 29, 2008 11:23 am Post subject:

Hey Donna,
Im glad you are going to start your medication. The only problem is that plaquenil takes quite a while to start working. (Sometimes MONTHS). I truly wouldnt worry about any side effects - as many here have said - theyve been on it for YEARS with no problems. I just doubled my dose this week and havent had ANY side effects at all...
Maybe your doc can prescribe you a prednisone taper to give you a jump on feeling better. Prednisone works right away, and the difference was AMAZING for me. Within days, I was out of bed (I had to QUIT my job I was so sick), my pain was managable, I stopped losing my hair, the swelling went down, I could breathe easier,etc. I was a different person. Now, granted, there are side effects from long-term steroid use. But to get you started, its fine. Believe me, ANY side effects are HUGELY outweighed by having your illness kept in check.
I hope you find relief soon, and please, do not worry about the plaquenil!!
Love Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

DonnaK · Posted: Sun Jun 29, 2008 11:42 am Post subject:

I have read that plaguenil can cause acne.. have any of you had this side effect ? I already have very sensitive skin..I am a redhead with very fair skin. I have to stay out of the sun, even with sunblock. I also have been told by my dermatologist that I have rosacea .. I don't have pimples just rosy red patches with with tiny red blood vessels and some rough dry patches on my nose and cheeks... Mineral make up covers it pretty well. Donna

KathyW1958 · German Shepherd Joined: 12 Jun 2008 Posts: 335

Hi Donna,

My name is Kathy. I have been taking Plaquenil for over 14 years for Lupus and have never had a problem with Acne from it. I have Reddish brown hair. I really have not had any real bad side affects from the Plaquenil. I think that the benefits far outweigh the side affects. I hope that you take the medication.

Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy and now just recently diagnosed with PA and Celiac Spru. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, and B12 shot once a month.

sweetdoconnell · Not So Newbie Joined: 22 Jun 2008 Posts: 9

Hi Donna,
My name is Dona, the same but with one "n" anyways.
I've been on Plaquenil, since 2006 when I got diagnosed but I used to have all the pain all the time like you do but when I started Plaquenol it started to relieve alot of my pain. Its not anything to be worried about, but I'm sure your dr will tell you more about the drug when you see him or her.
I'm sorry to hear that your having alot of pain in your joints, I know exactly how you feel. I live in the Boston, area and the humidity gets my joints swelled up alot.
At one time my Rhematologist did give me cortisone shots in the areas where I was hurting it helped alot with the pain but it didn't last that long.
Hopefully they will get everything under control and you can feel much better. Smile

Hope you have a good day,
Dona

Oluwa · Posted: Mon Jun 30, 2008 4:31 am Post subject:

Hi DKNC...DonnaK North

Me, I am Oluwa..just livin' below you in South Carolina. l am not local grown a transplant from Seattle...from Seattle the U.P. So, I've cropped up in many places.

I tried to scan through the previous post...and I don't know if it was mentioned it can take up to a few months for the Plaquenil to really do what it is intended to do. Mine went to work in about 5 weeks...as I recall. Be patient if results are not noticed quickly..

Rest your hands and wrist..if at a desk make sure ever thing fits up. Height chair, key board and etc. Keep elbows at side while typing and get a ergonomic hand resting keyboard.

Do a bit of massaging..milk your finger with the grip of your palm..I find these help for me. Running hands under alternating very warm then to cold water..

Having you been following the preventive, managing IT lifestyle. Low stress if any, exercise, yogas, swimming, walking..eat for your health and not the bud everyday. Moderation. Anti-inflammation diet perhaps? Avoid sugars...alfalfa sprouts. Ensure rest follows activity..and enjoy life...

Pain management class...meditation...

Just a few ideas for ya...

Reads... The Lupus Book and The Fibromyalgia are great books by Daniel Wallace, MD. Even though you may not have FMS it provides great info on how to deal...

Welcome..there are better days to come, focus on that to be your goal. Always have hope for a better day...

Hugs..keep looking for your wellness.
Be well,
Love,
Oluwa
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