Anyone Take Plaquenil? (Page 2)

I was diagnosed with Lupus SLE nearly 10 years ago. My rhuematologist prescribed prednisone for my kidneys and plaquenil for the joint pain. Akbmac, I am not sure why your doctor has not told you, but the risk of retinopathy is very small, and your insurance will cover a twice yearly visit to your eye dr., even if you don't have vision coverage.
My personal experience with prednisone was pretty ugly, but I was on a pretty high dose for nearly 3 years. Nevertheless, it will be a cold day in Hades before I ever take it again.
I never had the side effects of stomach problems with plaquenil, but after nine years on the drug, I was developing a skin rash and large bruising that wouldn't heal. I was not under a Rheumatologists care at this point and my primary care physician wanted me to try stopping it. I was off it for about 4 months and my life was returning to a living hell again. Found a new Rheumatologist, but the damage was done. I am back on the plaquenil, praying that it kicks in soon, but in the meantime am taking Naproxen (500mg) at lunch time to make life bearable until the plaquenil does its thing. What I am trying to say, unless your side-effects are life altering, if the plaquenil works for you, stay on it!!!

My doctor said that hair loss and bleaching are due to the plaquenil.

Hi, I have had Lupus for 24 yrs and 5 years ago I was diagnosed with Sarcoidosis. I have been on 200mg of Plaq until the diagnosis of Sarcoid. My dose then doubled. The manifestation of Sardosis with me was that under my left cheek bone I developed what felt like a rock and my check was deformed. I had other manisfestations as well. After one month of taking the Plaq all the granulnomas were compleatly gone.It was amazing to see with my own eyes how the medication worked. So, for me it is very important to take the Plaq. In addition my daughter has started to developed Sjogren's, and Raynaud's. My Rheumatologist has prescribed Plaq for her so that she does not develop Lupus or any other auto-immune disease. The only side-effects I have had with Plaq is the gastro problems such as nausea, and upset stomach. For those of you with major stomace pain should ask your doctor about Donnatal. I only take it when I really need it but it really works and for nasuea I use Zofran.
About the hair loss... I have had periods of hair loss throughout my life with Lupus and the bleaching. If you take a complete vitamin, a B-complex and the hair loss formula (with your doctor's approval) it will help.
Take Care,
Marina from Laguna Beach, Ca

i have lupus went i was 29 and now 48 i do take plaquenil it help to do it with applesauce, i get up one day at atime it might be good it might not you have to find something to take mind off of it or you will lose it i do art and wood work some time just keep moveing.

Hello,
I have been diagnosed with SLE Lupus. I have been on Plaquenil since Feb 1 2010. I have noticed the onset of hairloss from Feb 27th to July 5th 2010. I have lost about 45% of my hair. It does make me anxious and my hairdresser had to cut over five inches off to make it look fuller. She noticed bleaching of the eyebrows and hair. Would Plaquenil cause this or lupus? I have been diagnosed with Lupus since November 2009 but would not take the drug Plaquenil until this February. I was experiencing extreme fatigue and joint pain so I reluctantly started Plaquenil twice per day 200 mg each pill. It is generic. Help ....

I was diagnosed with SLE 16 years ago and only had really bad hair loss when I was on Ciclosporin (I ended up with bald patches). I've just started taking Plaquenil so I don't know if it will definitely cause hair loss. My Rheumatologist told me about the possible side effect of colour blindness but also said that she's not come across a single case in the last 20 years.

Has anyone experienced what I feel is RLS, restless leg syndrone? I have only been taking plaquenil for 2 weeks. I do not have any other side effects.

msunderstood

I am so glad I came across this post. I was diagnosed with Lupus yesterday but my doctor (and me too) suspect that I have had this condition for years. It is amazing to read all of you speak of the same symptoms. I don't feel so alone. I am very scared even though the diagnosis didn't surprise me as I had been reading enough about it since 3 weeks ago that my ANA came back positive.

The rheumy prescribed Plaquenil also and I just picked it up from the pharmacy however; they dispensed the generic version instead. Does anyone know if that makes a difference? Has anyone seen results with the fatigue? Do you have any suggestions on any supplement or medication that be taken for hair loss? Also, has anyone heard about a new promising medication to be approved very soon called Benlysta? I've heard is very promising. In the midst of my sadness I am excited to start taking the medication and hopefully find some relief. I have been feeling horrible for a very long time, I barely make it through the day with a foggy brain, fatigue and bodily aches. I am a young HR Executive whose line of work places great demands on me and fear that I will have to quit my job if I don't find relief.

I am sorry for so many questions but I don't know anyone that I can relate too as of yesterday. Thanks

Hi, sorry to hear you are so anxious about your very recent diagnosis. But there is light at the end dog the tunnel. I was diagnosed with lupus 22 years ago when I was twelve weeks pregnant. Went through hell before it was diagnosed. However I have had the most amazing team of doctors over the years. My daughter is now a healthy and happy 22 year old and I subsequently had a son 10 years ago after being told I would probably be sterile from my treatment with cyclophosphamide for lupus nephritis. I was drug free for the last 10 years, boy I have had a big flare recently and was prescribed plaqueneil only took it for the first time this morning, so fingers tossed it works. I've been told by my otors that it wil protet my major organs, so for me that was the clincher. What I'm trying to do/say to you is everyone is different, everyone will have a different of experience with lupus, but it's not the end of the world, positivity is a huge factor in your well being and management of the disease. And there will always be someone here for you if you ever wish to just talk or cry about it. I wish you all the best with your health. Try now and have a good christmas and start 2012 thinking I will mange this it will not Ontario me. Good luck. Brenda

Thank god i have found this post, i have been living .as i live in the country on a farm i amlupus for the past two years and it is affecting my legs ,i can hardly walk and have to rely on my family to do my shopping for me i feel useless as i live on a farm in the country i dont have access to many people iam seventy years old and am fed up with the fatigue an pain. cant take prednisone but iam about to take plaqu

Hello nikkea. Your post touched my heart. You are feeling isolated and frustrated at the limitations of the disease at your age. I admire your gumption and I'm glad you have connected to this forum. Many people your age aren't able to get the hang of using the computer to connect to the lupus forum.

I notice this an older post and so I hope by now that perhaps the Planquenil has helped reduce the fatigue and pain. I am also just discovering the frustrations and limitations of a diagnosis of "immune disorder" and all that implies. I began Prednisone theee weeks ago (a gradually reducing dose for 7 weeks), and I started Planquenil a week ago. I am hoping for the best.

Hello,

Just found this forum & would like to know how you are feeling & coping with your new reality.

My whole life, I have been healthy & extreemely active but like you, started feeling horrible for unexplained resons for quite some time. I was diagnosed with Lupus in 10/2011. I immediately started Plaquenil & have had improvement but still cannot workout due to joint pain & fatigue.

Hope you are feeling well,
G'

Hi i was diagnosed with SLE and sjorgrens syndrome just before christmas last year, am on Plaquenil now for 7 months a dosage of 400mg per day. Initially i thought it wasnt going to work, but the past three weeks my energy levels have increased 100 fold. I can walk about to the shops, i can actually get on with my housework!! I do pace myself usually do things in the morning then have a rest in the afternoon for an hour or so, ready to start evening meal! It is horrible to have lupus, butits a case of listening to your body, if you feel tired have a rest. Good luck and best wishes, hope all goes well.

I've been on plaquenil for Lupus SLE since November 2006. There is a difference between the brand-name and the generic in terms of the non-active ingredients (binders, etc.) I did have a weird reaction (lip kept swelling up) to the generic hydroxychloroquinone when I started taking it, so I switched to the brand-name, which was quite expensive, for about 8 months, and then I decided to try the generic again and haven't had a problem since. I wonder if what I thought was a reaction was just plain-old lupus, as at that point things were randomly swelling up a lot. I haven't had any side effects at all from generic plaquenil and no lupus symptoms at all - I'm down to 200mg/day now.

I was diagnosed with SLE for almost 10 years now.On the Early years of my diagnosis,i have the worst active disease(though no organ failure was involved,Thank God!) and during times ,i was prescibed with plaquinil bec of my rashes and hairloss and steriods for my joint pains.I was bloating up and gaining weight..Everytime i looked into the mirror i can the very ugly me bec of my skin and weight gain and the moon faced that i had.I had deppression during those times and to the point that i want to end my life bec of no hope.Then came my doctor who let me joins a Lupus Association in the Philippines and that is where i realized that the other members are feeling better and looking good!Everytime a goodlooking person passes by,i asked is he also a pt?then they would say,we all are!OMG!i said to my self,well,if they made it and looked great and able to function normally and still become doctors,nurses,managers,bear children ,and all the things that a normal person would do!THen,i Can do it!
its been almost 8years now that im lupus free and totally out of medications.Just do follow up with your doctor,every three months,have ahealthy lifestyle,,eat sleep well,have apositive outlook in life,never forget to relax and take a deep breath,exercise,stay out of sun and most of all..pray! and learn to control you mind..I always say to myself everyday that IM LUPUS FREE,THANK U LORD!..hope this helps everyone whos having this teeeny weeeny illness(im just positive,i match my lupus as easy to treat like a pimple)have a good day and LETS ALL BE LUPUS FREE!!!BEC i am LUPUS FREE!!Goodluck to all.

I was diagnosed with SLE for almost 10 years now.On the Early years of my diagnosis,i have the worst active disease(though no organ failure was involved,Thank God!) and during times ,i was prescibed with plaquinil bec of my rashes and hairloss and steriods for my joint pains.I was bloating up and gaining weight..Everytime i looked into the mirror i can the very ugly me bec of my skin and weight gain and the moon faced that i had.I had deppression during those times and to the point that i want to end my life bec of no hope.Then came my doctor who let me joins a Lupus Association in the Philippines and that is where i realized that the other members are feeling better and looking good!Everytime a goodlooking person passes by,i asked is he also a pt?then they would say,we all are!OMG!i said to my self,well,if they made it and looked great and able to function normally and still become doctors,nurses,managers,bear children ,and all the things that a normal person would do!THen,i Can do it!
its been almost 8years now that im lupus free and totally out of medications.Just do follow up with your doctor,every three months,have ahealthy lifestyle,,eat sleep well,have apositive outlook in life,never forget to relax and take a deep breath,exercise,stay out of sun and most of all..pray! and learn to control you mind..I always say to myself everyday that IM LUPUS FREE,THANK U LORD!..hope this helps everyone whos having this teeeny weeeny illness(im just positive,i match my lupus as easy to treat like a pimple)have a good day and LETS ALL BE LUPUS FREE!!!BEC i am LUPUS FREE!!Goodluck to all.

I was diagnosed with SLE yesterday, and put on the generic form of Plaquenil. I am reading up on it and trying to figure out what I am to expect. I have heard good and bad reviews..I hope I do well on it..anything to make the aches and tiredness to go away. Is there a support group for SLE? I have so many questions.

I also was just diagnosed with Lupus, my Mom has it as well and is on Plaquenil, it seems to be helping her. I am waiting to meet my new family Doc, thursday and have no idea when I will get into a rhemotoligist my spelling sux, tonight I am sorry.
I personally am just elated to finally have a diagnosis I have had complaints for years and been ignored or worse, I was told I was BiPolar type 2, and had horrible reactions to the psy meds. I happened to switch majors in collage to be able to prove with out a doubt that I was not Bipolar. I graduate at the end of summer. But it worked along with a DEMAND to have a ANA panel drawn. To know that I am not crazy and there really is something wrong with me is priceless...

I also was recently diagnosed with lupus. I am also taking plaquenil in the generic form and am stating my 4th week. I have horrid hot flashes, upset stomach, and horrible diarrhea. It hasn't helped one bit with the joint pain or swelling and in the past 3 days I have developed a very itchy rash that is on my trunk. The prednisone hasn't helped me much when I have taken it. I have two small children and am a nurse on a very demanding unit.

I had my first lupus flare 13 years ago and was put on Plaquenil. It worked wonders. I had been in bed for 5 months with extreme fatigue. I didn't stay on it long because I had heard that you could have a blind child if you were on it when you became pregnant. I didn't want that so I went off of it. Here I am 13 years later after an extremely stressful 2 months of heartache and sad events and having another flare. I can't remember how long I took the Plaquenil the first time but it lasted 13 years so I have high hopes for this second round.

I have connective tissue disorder.... Ive been on plaquenil for a few months they started me out taking 2 a day, and I would see stars after my 1st dose of the day for alittle while and would wake up to horrible cramping.... I told my rheumy and he decreased to 1 pill a day.. I didnt have any side affects. Then I stopped taking plaquenil for a few weeks (who knows why) and when I started it again I had extreme stomach pains, nausea, diarrhea and wanted to vomit... it was horrible. I felt worse starting the plaquenil again than Ive ever felt. So now I dont know If I should continue or stop for good. since the 1st time helped and I had no side affects (after the dosing was decreased)

I was recently diagnosed with SLE and just started Plaquenil. I've only been on it for 2 weeks and I'm really noticing a difference. The first few days I got a very itchy rash on my chest and part of my neck but it cleared up after 4-5 days. I've had a couple episodes of diarhhea but no other symptoms and so far I am very happy with the results. My Rheu told me that the Plaquenil would help with the hair loss. I haven't noticed my hair loss getting any worse, in fact it seems to be improving.

as long as you aren't allergic to it, it might really help. My daughter had a severe allergic reaction where she developed a horrid skin rash from head to bottoms of feet. She swelled up like a balloon on her face. She was hospitalized because they weren't sure what was going on. Then her skin peeled from head to the bottoms of her feet. The swelling eventually went down. What she got out of it was beautiful new skin, and a prescription for cellcept which she has been on for two years now and is doing really well. Problem with it is the expense.

as long as you aren't allergic to it, it might really help. My daughter had a severe allergic reaction where she developed a horrid skin rash from head to bottoms of feet. She swelled up like a balloon on her face. She was hospitalized because they weren't sure what was going on. Then her skin peeled from head to the bottoms of her feet. The swelling eventually went down. What she got out of it was beautiful new skin, and a prescription for cellcept which she has been on for two years now and is doing really well. Problem with it is the expense.

Reading all of your symptoms and complaints lets me know I'm really not a looney tune. I too have lupus/mixed connective tissue/fibro/osteoporosis. I throw up on Fosomax so I go in every 3 months for an IV. I am also on plaquenil and cellcept (so expensive)among various other drugs. Depression is very real when your whole life is turned upside down. I now am on a "cocktail" of 3 anti-depressants and it was the best thing I ever did because I was at the point where I didn't really want to live with the pain and lack of a life (had to quit job, etc.)The fatigue is nuts but I have learned to rest when I need it since I am on disability now and don't have to try to drag myself through work anymore. I also have finally found my perfect trio of doctors through Kaiser insurance and they all 3 work together to make my life in balance. They are all women and when they got to know me and my"let's kick butt" attitude, they knew I was being honest and really wanted to help. I never want to end up back in the hospital with a severe flare. They also explained to me that for the rest of my life I could be rotating in and out of drug regimens so you just have to roll with the punches. You may not ever be totally out of pain but you can try to lessen it. I say give your meds a chance. I wrote a lot here but I've been going through this for many years (about 25). Also as a footnote: I also had polio as a child so my immune system was doomed from the start. Just keep on trying!

The generic form of Plaquenil contains Hypromellose which some people can be allergic too: Rash, itchy, tight throat, dizzy, feeling awful etc. It also contains Macrogol/PEG 3350 which is considered a powder laxative--gas, upset stomach. These ingredients are labeled as inactive but if you're sensitive them, as I was, the Brand Name Plaquenil can make all the difference in the world to you. It appears the Brand Name has a better time release thus preventing allergic reaction, as it contains Hydroxypropyl Methylcellulose or Hypromellose, as well as other inactive ingredients?

I was just diagnosed with a connective tissue disorder and my rheumy isn't sure if it is lupus or sjorgens. My original symptons were hives, migratiry joint pain, and fevers. He prescribed plaquenil, which gave me a horrible itchy rash. I stopped the meds and I took prednisone 5mg. to clear up the symptoms. He now wants to try me again on plaquenil along with prednisone to see if that works. is plaquenil known to clear hives and joint pain? Does anyone have problems in the sun from taking plaquenil? I always wear a lot of sunblock and apply it often. I haven't had any problems yet and am hoping I won't.

I was recently diagnosed with mixed connective tissue disease and besides awful fatigue and joint pain I also have the butterfly rash. Does anybody know how that can helped. I am on plaquenil, I only have been for 2 weeks so I haven't noticed too much a difference yet. This rash is driving me nuts, I'm 27 and I have never had skin problems in my life. Any one have suggestions?!

I too was just diagnosed with mixed connective tissue disorder vs. early lupus. I had horrible fatigue low grade fever for 15 months. Developed butterfly rash (light), joint pain, muscle pain and weakness about four weeks ago. I was started on plaquenil 10 days ago as well as prednisone. My rash had improved prior to plaq by using full spectrum sunscreen and retin A (derm.). My fatigue is improving every day and i will return to work 1/2 time next week. My hair had intermittently been falling out over the last few months hopefully that slows down. Looking back ive probably had some symptoms since age 35. Good luck. They,dont know what wavelength of light is responsible so you need the sunscreen that turns yourmfacemwhite. I put bronzer over it and mainly just put it on the affected areas.

thought i might finally get involved in some kind of lupus chat forum. talking to others might help me.