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Old 05-26-2007, 03:43 PM   #1
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SueNae HB User
Question Feedback Please...a newbie

I have been diagnosed with SLE, only affecting joints with no organ involvement. I've had several years of neg/pos ANA's, now always positive. I have shunned the Plaquenil and the prednisone, but find I must do something. I have lost ALL interest in life as I get so fatigued just moving from room to room. I would so appreciate feedback on those that have stuck it out with the Plaquenil. Can it really make that much of a difference. It causes me such stomach upset, do I just rough it out and get used to it? Does anyone have input on diet, what to avoid, what to do when you don't have energy to eat????

I would like to hear ALL repsonses, negative or positive. I'm not certain if I don't have Lupus, FM, and Chronic Fatigue. Would just like some suggestions as to WHAT I CAN DO FOR ME.

Thanks in advance, new to this board to me so bear with me while I get used to it. I'll read all the threads, but wanted to put this out NOW.

 
Old 05-26-2007, 05:02 PM   #2
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Re: Feedback Please...a newbie

Hi, SueNae. I've been on Plaquenil for 7 years. It's made a MAJOR difference in my life: the best seven yrs., actually. Even 6 months in, those were the best 6 months---meaning, you see what I'm trying to convey.

As for stomach upsets: I expected them & did NOT get them. Just a little nausea in th first few days. Go figure! I'd had severe irritable bowel problems for 25+ years (including multiple hospitalizations), thus I expected a big "hit". I've actually been completely STABLE since starting the drug.

I have read that some people do better on the brand-name, as opposed to the generic hydroxychloroquine. Are you on the generic, or on the brand-name?

FYI, Plaquenil doesn't reach full effect for 3-4 or more months. How long have you taken it?

Just curious: did you test positive for specific autoantibodies? I ask only because ANA is a general test, positive in multiple diseases, or due to a passing virus or to a family tendency. Did your rheumie run all the more specific tests as well?

Also, are you photosensitive? I am, horribly. Avoiding midday sun & wearing hats, sunblock & protective clothing are a BIG part of what's helped me.

I do MUCH better on low-fat diet. I've switched milk, coffee creamer, butter (use a substitute), etc. No fried foods. No ice cream. No cookies. And what a difference. (I NEVER want to endure another colonoscopy! )

I hope things improve soon for you & also that you post more soon. Hang in there, OK?! Best wishes, from Vee

 
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Old 05-26-2007, 06:30 PM   #3
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Re: Feedback Please...a newbie

I have had all the secondary Lupus tests done, all negative. They have been done several times. I do know I have very high ANA titres with one of the patterns; something like nucleor? I know that's not the right spelling, short of pullling out my huge medical file this is the best answer I can give.

I hear so many different reasons why NOT to take the Plaquenil. I'm just so very tired of waking up every morning feeling like I've had no sleep. I'm barely making it through each day with anxiety filling my days. Confusion, short term memory loss, I can't even make it to the grocery store anymore. I flare up with the slightest bit of stress, and seem to be unsure blaming myself for this illness. If only I could find something to take my mind off of this, but it affects every single thing I do. A shower is a miracle, if I can get one in. I know this sounds like depression and maybe partly so, but it's more the inability to get anything done.

Feeling at the end of my ropes here, hoping to get a little support to keep me going. Wanting to know if Plaquenil makes a big of enough difference to account for all the side effects.

Many thanks to those who feel compelled to reply.

 
Old 05-27-2007, 07:32 AM   #4
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realisticchic HB User
Re: Feedback Please...a newbie

Like Veej, I have a bad history of bowel problems, and was very afraid when the Dr. prescribed Plaquenil. It took a good 8-9 months for me to notice a real difference, but it has made a great improvement. For the first 6 mos. whenever I would take the plaquenil, I would have a lot of loud gastric sounds, ending in a huge amount of flatulence, but that was it, and that slowly stopped happening, as I suspect my body became used to the drug. I take 400 mg. a day, 200 in the morning and 200 in the evening. That is the dose I started on, however I have heard that many people only take 200 mg. a day to start with and then work up to 400, which may be an option for you. The main things that improved with the plaquenil are: More energy, clearer thinking, better memory, less joint pain and swelling. It is very important that you take this drug with food of some sort, I take mine with breakfast and then again with supper. On days when I don't feel like eating, I take it with pudding or some saltine crackers.......DO NOT take it on an empty stomache! I did that and got horrible nausea, as long as I take it with food I am fine. Take Care, and I hope the Drs. can get you diagnosed properly soon

 
Old 05-27-2007, 08:09 AM   #5
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Re: Feedback Please...a newbie

Hi,

I've been on Plaquenil for about 2 1/2 yrs. now (400 mg per day, once in the morning, once in the evening). Luckily, I never had one side effect and for me, it doesnt matter how or when I take it (I can take it on an empty stomach). It did take a long time to feel any difference, but I'm glad I'm on it. My flares are much less severe and last alot less longer than before. I have no more hair loss, no more skin rashes, and I do feel better than before. I do still get flares, but they are just not as bad. However, if Prednisone didnt have so many long term side effects, I would take that forever in a heartbeat....the pred made me feel normal and gave my energy back, completely eradicated all my pain & symptoms. But since it's not good, I'll stick with the plaquenil since it's one of the safest long term drugs.

 
Old 05-27-2007, 11:21 AM   #6
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Re: Feedback Please...a newbie

Hi -

I took Plaquinil for 2 years 200mg. twice a daywith no side effects, but then started to have GI symptoms which I thought was due to Plaquinil. I quit taking it a couple of years ago beause of incresingly frequently "bathroom days" and since being off of it have been mostly okay. Then they started again and I decided it was due to lactose intolerance. No dairy for a year and all has been somewhat better, but I may have developed one or the other varieties of panniculitis, but just discovered that possibilites a week ago. No doctor involved yet.

Wishing you well! Barbara
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Old 05-27-2007, 03:19 PM   #7
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Re: Feedback Please...a newbie

SueNae,

I just want to say that you are not alone! I have had a lot of lupus type symptoms with horrible fatigue and joint pain, some weird rashes, headaches, and lots of cognitive difficulty also. This all started for me 6 years ago after the birth of my daughter. I was not done nursing/and or having my family and refused plaquenil also for the last 6 years. After finally becoming desperate for help, and being done with my family (I now have 3 beautiful children) I have decided to go on Plaquenil--200mgs twice daily. I have been on it 1 month so far. Horrible stomach pain for the first 2 weeks, but better now if taken with food. I have had a marked improvement in my swelling and fatigue since starting. I know it hasn't even taken full effect yet. I had a horrible flair last week and could barely walk and was put on prednisone 10 mgs until August when hopefully the plaquenil will kick in fully. I have very high hopes for this medicine, and hope you will give it a try. All of my other tests besides + ANA of 320, 640, and 1280 were negative. I was diagnosed with undiff. connective tissue disease but am pursuing a lyme dr. to completely rule that out as a cause for my ill health. If I could be on Pred all the time, I would--it is a lifesaver for me, and is the only thing that makes me feel normal. I am reluctantly taking it (the side effects scare me) until the plaquenil works. You and I seem like twins, and when I read your story, I wanted you to know that you were not alone. I did have horrible stomach pain at first, but it has gotten so much better. I hope you feel better soon.

Kelley

 
Old 05-28-2007, 10:14 AM   #8
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janmar123 HB User
Re: Feedback Please...a newbie

Quote:
Originally Posted by Kel123 View Post
SueNae,
HI, I could relate to a lot of what you are all saying. I too am a newbie!! I was DX with UCTD a few months ago and thought I was doing fairly well... I guess I have been in some flares and have been experiencing a lot of joint pain, fatigue, flushed face and I am concerned it is Lupus! My Rheumatologist told me she cannot confirm lupus, however it could be in that family... She recommended pregnisone, however I refused due to the terrible side effects and elected to start on Plaquenil last week.... As well, my Dr. gave me a steroid injection in my backside to help with the flare... I take 200 mg of Plaquenil twice daily, so far no side effects and I think the steroid injection took some of the edge off. I was hoping it would give me a real boost!
Whenever I do too much I pay for it big time! I took my daughter shopping yesterday and I was in bed for the entire evening after our outing. I am a high energy person, I work full time and have three kids, however, this has completely taken the wind out of my sails both physically and emotionally. My mornings are my best time and I can function at work, however entertaining, shopping, exercising, cleaning the house and even preparing dinner at times is very difficult. This is so hard to get my head around!! Any suggestions are welcome and I can certainly relate to how frustrated you feel!
I just want to say that you are not alone! I have had a lot of lupus type symptoms with horrible fatigue and joint pain, some weird rashes, headaches, and lots of cognitive difficulty also. This all started for me 6 years ago after the birth of my daughter. I was not done nursing/and or having my family and refused plaquenil also for the last 6 years. After finally becoming desperate for help, and being done with my family (I now have 3 beautiful children) I have decided to go on Plaquenil--200mgs twice daily. I have been on it 1 month so far. Horrible stomach pain for the first 2 weeks, but better now if taken with food. I have had a marked improvement in my swelling and fatigue since starting. I know it hasn't even taken full effect yet. I had a horrible flair last week and could barely walk and was put on prednisone 10 mgs until August when hopefully the plaquenil will kick in fully. I have very high hopes for this medicine, and hope you will give it a try. All of my other tests besides + ANA of 320, 640, and 1280 were negative. I was diagnosed with undiff. connective tissue disease but am pursuing a lyme dr. to completely rule that out as a cause for my ill health. If I could be on Pred all the time, I would--it is a lifesaver for me, and is the only thing that makes me feel normal. I am reluctantly taking it (the side effects scare me) until the plaquenil works. You and I seem like twins, and when I read your story, I wanted you to know that you were not alone. I did have horrible stomach pain at first, but it has gotten so much better. I hope you feel better soon.

Kelley

 
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