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Discussion Starter · #1 ·
I have been diagnosed with lupus just last month. I am still having a hard time processing this info. I just got my eyes checked, so i am good to go to start the plaquinal, but still very nervous due to side affects. I probably was having symptoms for over 2 years. After the birth of my son. thought all the fatigue was from trying to keep up with him. I also see double vision out of my left eye, don't know if that is from lupus or what. I was being worked up for MS last year for the fatigue and muscle aches and the visual changes. The only tip off the doc's finally had was a have the Raynauds syndrome. Which led them to do the appropriate blood work. I have sooo many emotions running through my mind. I go from anger, to sadness. I feel tired on a daily basis, not to mention my glands are always swollen, and of course the joint pain. I'm just looking for people to talk to. Though I do have some support, I don't want to burden them with my daily pains, because I feel like I'm always complaining, and people tire of that easy. I don't want to be one of those people who are always sick, and never have a good day. I also notice that stress really throws me in a spiral of symptoms. Well hopefully I can find some people to talk with.
michelle
 

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Hello Michelle and welcome :)

What you're going through right now is familiar to anyone who has been through diagnosis and all the fears and worries that brings. You can expect to be quite up and down about things for a while yet but please don't hesitate to come here and ask questions or vent if you need to.

I know what you mean about burdening others. For me this site has been a lifeline in that I don't have to let everyone around me know about every little thing that is wrong. I sometimes feel that others would have a hard time believing it all. This site has given me understanding, a shoulder, the answers to many questions and a good few laughs.

You need to know that this site isn't necessarily representative of the lupus population as a whole as those who post here tend to be "newly diagnosed" like yourself, those looking for a diagnosis or the rarer more severely affected people. It's just important to bear that in mind when reading some stories here and not to worry that you will experience everything you see written here.

Hopefully plaquenil will make a big difference to your quality of life, it does for a huge number of people. Do be prepared for it to take a while to work (often between 3-6 months). Side-effects (other than a little gas and maybe some stomach issues to begin with) are very rare and plaquenil is extremely safe for most people, much safer indeed than many OTC meds we take without a second thought.

I hope you enjoy being here, bye for now,
Katharine
 

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:welcome: Michelle,

Glad you have found us. I hope the site will be able to help you especially in these early days. Our members are super friendly and more than willing to help when they can. Feel free to ask questions, that is how we all learn.

Don't forget to visit our live chat room. It is a great way to meet other members and get information. I hope to see you in there soon.

Take care,
Lazylegs
 

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Welcome to the lovely forums here, I am a newbie to SLE too (April) and am still ploughing my way through the information here. My next step will be live chat room, when I can pluck up some courage.
 

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Hello and welcome, I am recently diagnosed too - about two months ago now, been on Plaquenil for about 6 weeks. I know exactly what you're going through, I'm very low right now and very irritable and angry with everything. I'm finding it really difficult to deal with, but thanks to this wonderful forum I'm finding my way.

Don't read too much is my advice, when I first found out about the illness I read all sorts of stuff and scared myself silly! I'm finding the best way to deal with it is to just take each day as it comes really.
 

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Hi Michelle

Like you, I was initially diagnosed with MS (February 2008). This changed to lupus in December 2008, when I was put on plaquenil. I've found it help full to supplement this with an anti-inflammatory pain killer (Voltarol).

The plaquenil may seem to take forever to kick in - but try not to get despondent. It took 6 months before I began to have any energy - and then all of a sudden I started to feel almost normal - its amazing when it happens.

This site is a great life line and a great help in getting one's head round what it means to have lupus. Time is also an important factor in this adjustment.

Take care and don't hesitate to post - even on the smallest concerns - a problem shared ..etc.

Merle
 

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Hi Michelle, and welcome to the board.
It sounds like you have yourself with a doctor who understands what sle is and how to work with it. There are a few things that those of us who have lived with sle for a long time can suggest to help you make the most out of your dr visits.

Do NOT believe in any literature which gives dire statistics and/or is over 5 years post print date. The reason? Testing and treatment has changed leapyears in the last decade and less, and much of the dire predictions use stats that are out of date and no longer apply.
***I was told back in 1988 by the first rheumy I saw that I would be dead in 5 years. Guess he shot the mark wrong on that one!*** He got fired really fast post that statement.

Do listen to your body and take rests when you need to. If you have a little one with you, time for a book, story, songs, anything that lets you rest. Don't pay attention to well meaning, but wrong, friends and family who urge you to push yourself harder than you can handle that day, hour, moment. Once you have done this for a bit, and get your meds worked out, you most likely will have more energy than you feel today. But, if you don't take care of yourself, you can do damage that may not be able to reverse. So, for now, it is crucial to let yourself have a break.

Do eat a balanced diet, even tho you may not want to eat, you must keep your body fed. Some drugs can slow down your metabolism, so if you are battling weight gain, talk to your doctor about it, and voice your concerns.
Do get an adequate night's rest.

If you are battling painful joints and muscles at night, try what has given me help: I use 4 - 1" foam pads on top of my mattress. Without the support of these, I am so sore and stiff it is insane. Don't hesitate to ask how others have survived similar issues you are facing.
Do not hesitate to ask questions. We are here to help each other. If you are getting more than giving today, then know your turn will come down the road. So, accept that we are here to support each other.

Keep a journal of your symptoms and also evaluate your pain levels on a 1 to 10 scale. Take this to the dr visit with you. It helps both of you identify the broad scope, not just the moment. What to include differs for each of us.

Let yourself and your family grieve that the "old" you is gone. The new model is still learning how to survive this companion that none of us want. The grieving will not happen overnight, but let yourself feel the grief.
If you find yourself in too much depression time, then perhaps it is time to seek a counselor. There is NO shame in seeking help. There is a lot of wisdom in seeking help in surviving a situation no one ever asks for.

Know that there is life in, with, and through lupus. It is a different life, but there is life. It most likely isn't what you planned, but life can be good again. The stages just take time to work through.
Sally
 

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Hello Michelle,
:welcome: Glad your found this site. I hope we can be of help to you.

Looking forward to getting to know you better.

Best wishes,
Sandy
 

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Hi Michelle, welcome to the site. I was also diagnosed with ms before lupus. I hope that the meds help you. Let us know how you are doing.

Take care

Deb
 

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Discussion Starter · #12 ·
Thank you everyone for your input and support. I am very afraid to start taking the medication, don't know why. It feels for me that my body is always in a flare. Especially my joints in my elbows, hips, knees and feet. Also my glands are always swollen. Has anybody had any visual disturbances from the lupus itself? Not a side affect of taking any meds? I have had double vision in my left eye for about a year. gets worse when i'm stressed. has anyone experienced this?
 

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Hi Michelle - don't be worried about taking Plaquenil, I've been taking it for nearly two months now and I don't think I've had any side effects. Aparently it's one of the safest drugs around, a very recent study concluded that it's safe to take long term and recommended as a lifelong treatment for lupus, even through pregnancy:

http://www.thelupussite.com/forum/showthread.php?t=75359

Can't answer on the visual disturbance stuff, it sounds very scary. Hope you start to feel a bit better soon.
 

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Hello Michelle

Antimalarials have been taken for such a long time in one form or another that all the risks are very well documented. More and more the tremendous benefits of this medicine are being discovered where as nothing new and adverse has been reported. Most people tolerate it very well.

If I had vision problems already I would want to see an ophthalmologist before starting it to get a baseline. I am pretty sure that Dr Wallace says there are no medically authenticated reports of eye damage taking place on recommended dosages. Sometimes people are advised to stop taking it because they suffer eye damage for some reason, and their doctors aren't going to risk laibility and negligence suits.
The risk is so low that in the UK eye tests are not even officially recommended though maybe risk/cost/ benefit calculation involved there.

I have taken them for years including for the past ten + years the stronger form that is supposed to have greater risk. I do get my eyes tested regularly though to be on the safe side.

I distinctly remember the first time I took Plaquenil, never having taken any regular medicines in my life before. I was so leery. I suspect too there was an element of not wanting to acknowledge that something was wrong enough with me to need medication

Best of luck
Clare
 
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