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DonnaK
06-26-2008, 05:06 PM
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
06-26-2008, 05:19 PM
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
06-26-2008, 09:46 PM
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

KathyW1958
06-27-2008, 02:16 AM
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

Saysusie
06-27-2008, 08:55 AM
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

laurid8967
06-27-2008, 10:17 AM
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

DonnaK
06-29-2008, 12:13 PM
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
06-29-2008, 12:23 PM
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

DonnaK
06-29-2008, 12:42 PM
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
06-29-2008, 12:57 PM
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

sweetdoconnell
06-30-2008, 04:37 AM
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. :)

Hope you have a good day,
Dona

Oluwa
06-30-2008, 05:31 AM
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

blessedchocolate
10-12-2008, 07:59 PM
Hello everyone, I've had lupus since 1993. I am on Plaquenil 200mg twice a day and 5 mg of prednisone a day. Here recently I've been having a problem with my bowels (so so sorry if this sounds gross). I don't have insurance so going to the doctor isn't an option right now. I get constipated often and with some leakage and now it becoming black. I had cut back to only 200 mg of plaquenil a day and recently started taking 200 twice a day again I'm wondering if it is possible that this is the cause of the dark bowel being that one of the side effects is dark colored bowel. I'm a little nervous about this.

Oluwa
10-12-2008, 08:21 PM
Hi Blessed Chocolate...

I am not certain if the Plaquenil causes dark stools, but I do know Prednisone could, as a result of stomach irritation. How long have you been on Prednisone...larger doses prior...?

Have you been dosing with other anti-inflammatory? Aspirin, ibuprofen, Naproxen..or pills for pain...they can irritate the lining of your stomach, cause ulcers, cause bleeding..gastritis?

Do you have heartburn? Stomach pains?

Is it tarry in texture...sticky...TMI, eh? Could be a symptom of a bleeding ulcer....bleeding along you digestion tract...

Are you taking any iron pills?

You really should adjust your medication unless advised by the doctor. I know it is hard not to, I've done it myself..but with Plaquenil you risk having a flare. Same time every day is key to keeping you covered....not that stop them, but minimize and control them...

You could have Irritable Bowel Syndrome if it goes from constipation to diarrhea. Have you seen any correlation, changes with the foods you eat or don't? Lots of wheat products or sugar in your diet..sugar also as in fructose?

Do you eat a lot of high fiber foods one day and the next not? Keep it at 25grams a day

Make an intestinal infection?

It could be so many things, Blessed Chocolate. With no insurance, no ER option I would take my medicine with food, keep a diary with what I ate all day and what my bowel movement was like each day. Avoid wheat products, avoid caffeine, chocolate, soda....Get fiber from oatmeal...beans, apples with their skin....brown rice. If you do not see any difference, with no insurance I would go to the ER about your dark stools...or ask your doctor about a payment plan...

Are you eligible for any state health programs?

Be well...
Hugs.
Oluwa

blessedchocolate
10-12-2008, 09:14 PM
Thank you Oluwa for responding. I have been on prednisone since 1993 as well. I do take Aleve from time to time for pain I starting to think I might need to back off of them because I have a bad habit of taking them without food as well as all my other meds. I've not seen and blod in my stool just the darkness for the last two days it actually lightened up some (man I know this sounds really gross) but it still worries me.

I can't take iron because that's a sure constipation for me. I went to the health food store and her recommended Bet tablets to get my iron.

I have recently trying to eat more foods with wheat like bread, pasta and thing else I can find. I recently bought a high fiber oatmeal which has 25% fiber in it. I also bought some fiber one pop tarts. I was thinking about taking a fiber tablet as well.

I am going to lay off the wheat, coffee, and caffine for a while as well as the Aleve. I guess you an tell by my name that I love chocolate.

Thank you so much again for your help.

Please keep me in your prayers and I will do the same for you.

Be Blessed

Oluwa
10-12-2008, 09:27 PM
Hey Blessed Chocolate...

Note... too much fiber can cause diarrhea..keep it at no more than 25 grams a day. Sometimes too much of a good thing ruins the broth.

Drink plenty of fluids to keep from drying, constipation. They say eight 8 ounces, but most doctors will say really that is too much. Aim for six..as we do absorb moisture from our foods too...

I too love chocolate...like everything, we can enjoy..in moderation..most of the time.

We've read it all, or experienced it too...so really nothing is gross...

With the changing colors, by keeping a diary of what you eat, what pills you take..you may see some correlation between the two...

You are welcome..you have a plan of attack, taking control so worry not...and if you tried these things, tweaking your diet...keeping a journal and no changes....do see a doctor...

You are in my prayers, Blessed Chocolate..sweet dreams..

Hugs,
Love,
Oluwa

sits_inthe_corner
10-13-2008, 02:15 AM
Hi blessedchocolate

I'm on plaquenil and it has not affected the colour of my stool. As Oluwa said, what you eat certainly can have a huge effect.

My doctor has me on the look out for light coloured i.e. white is really really bad and I would need to go in and see her right away.

I have been a bit anaemic for quite a while and she cannot figure out why.

Drinking too much purple grape juice or general will turn it green :lol: Just thought I'd share that with ya :D

My doctor takes plaquenil as well, she recommended that I take both pills toghether right before bed with a small container of yogart. You know the single servings.

The yogart helps to protect the tummy and you sleep through the side affects.

Since I started doing that I have not had any diahrea or dizzy spells and headaches have been few and far between.

Ask your doctor if it's okay for you to take your plaquenil this way.

tyarishanese
10-13-2008, 05:41 PM
I've been on 200 mg Plaq for over a month now I haven't noticed any severe side effects.

sits_inthe_corner
10-13-2008, 06:12 PM
yah tyarishanese

I'm happy for you. Not everyone gets the side effects. I react to most medications. My system doesn't like them much.

Fortunately my doctor is on the same meds as me and she helped me to adjust to it.