View Full Version : New to this board and to lupus
03-10-2011, 05:00 PM
I'm Tori, I'm 23 yrs old and have recently been diagnosed with lupus in the last two weeks. I'm dealing with it as best i can, I have started on hydroxichloriquine from my doctor. I haven't had any major reaction so far, just nausea and some dizziness. I go back in for another app on the 7th of April to see how everything is going. It wasn't really a shock when he told me he thought it was most likely lupus. I had been expecting that before I had even gone in. It started last year and has just continued since, I was referred to my rheumtologist after my annual blood panel came back abnormal and needed more testing. I have a positive ANA with a speckled pattern and ANA titer of 1:160 and a high sed rate as well. Also with fatigue, joint pain, flushed cheeks, joint swelling and chest pain, which lead to the diagnosis. I have a whole bunch of question for my next app and would gladly take any suggestion for those who have been there on what I should ask and expect. Most of my family is supportive by some think it could be something else which isn't very helpful, my fiancÚ is staying strong and dealing with it as best he can, not something he hoped for me but it is what it is. Anyways, that's what is going on with me and I just wanted to talk with papilla who understood and could offer advice on their experience since I am new at this disease.
Thanks all for reading.
03-10-2011, 05:09 PM
Hi tori welcome to whl family my suggestion would be to write down every question you want to ask and every symptom you have been experiencing and your medication and there side affects and what to expect often times we have these questions but when we get into the doctors we forget keep a diary it really helps. Saysusie or rob or tgal can help with any questions about the site or your blood results. Hugs kim l sydney australia
03-10-2011, 05:17 PM
Thanks for the suggestions Kim!
My initial app with the rheumotologist I wasn't expecting a diagnosis so I wasn't prepared with all the questions I needed to ask for lupus. I did have a list of symptoms, general questions, meds I was and family history in a notebook I brought with me to that app but then he said he thought it was lupus and was starting me on hydroxichloriquine and then be took more blood and told me to make another app in a month so I didn't have a chance to form other questions pertaining to lupus itself. I have alot of other things to ask once I go back in now that I have something to go on. I've been in the dark with all of this for awhile since I was referred, my GP didn't give me alot of info when they referred me so I had to read between the lines and wait almost 2 months to get in to see the other doctor. I think the not knowing and the waiting has been worse then anything and now I'm just glad to have some sort of answer for everything that has been going on.
03-10-2011, 07:04 PM
Welcome to the WHL and it's lovely to have you with us.
I was started on the same drug as yourself 5wks back plaquenil is the other name mate and easier to remember.lol So far i'm like you nausea and feeling sick but i've had the stomach pain come now besides some people have diarrhea, so i have to see what happens.
It's nice how you fiance who thinks so much of you to stand by you.
All i can say and suggest for when you see your GP is right question's down that come to you refering the illness and get fully prepared, i have a great GP but a rheumo specialist who loves keeping you in the dark, you must push at them mate and be persistant, it's your body at the end of the day.
Take a good look at the threads and write down what you think should be asked and i wish you all the best Terri xxx
Hi Tori and welcome to WHL! I am so glad that you found us and decided to join! The drug that your doc. put you on is the standard first step. It will, however, take 4 to 6 months for the effects to really be felt. It comes on so slow that you don't really think it is working until one day you remember that the rash you have had went away and hasn't come back or something like that. If it bothers your stomach then take it with food. It seems to help many.
Please make yourself at home here. I look forward to getting to know you and once again, welcome to the WHL Family!
03-10-2011, 07:42 PM
Thank you guys so much. It's great to be able to talk with people who understand an can help and offer advice on what's going on. I'm hoping my next app with my rheumatologist will be more informative since I have a better idea of what's going on and can asked him what I need to. I have been taking it with food and it does help but in addition to those meds I'm also on BC everyday and then vit D 50,000 units once a week and they all happen to make me feel sick so I think it's just the combo of it all. I've found that snacking on fruits and crackers and such helps on that part and I can't let myself get too hungry otherwise the effects are ten fold. I'm dealing though. I just hope that these meds work out for the best since I've read they're the best ones to start out with and I think I'm on a fairly small dose of 400mg a day? At least I've read they can put you on 800mg a day or something. My doc said it he should be able to decrease the dosage to 200mg a day after being on them for awhile. I don't know I'm so new to having this and I'm just trying to learn all I can to make it easier on myself and my family.
Thank you guys again for the support!
03-11-2011, 06:38 AM
it is steve here, from australia.
i have been on plaquenil for over 12 months. stick it out.
when i was first diagnosed, 30 years down the track. i kept a small diary. i wrote all sorts of things. most of them didnt help.
what did help was a pain diary.
where i recorded what was happening to my body and when. how sore i was how happy or low i was. and also all of my doctor related questions. my rheumtologist actualy thanked me for this diary, as it made it easy for him to understand what i was going through.
my rheumtologist told my wife, on another visit, how good it was to read my diary. please consider writing one.
03-11-2011, 08:15 AM
How you feeling today with the plaquenil and your nausea plus dizzieness, if your like me besides nausea i can't stop feeling sick but we all experience medication in different ways.
I just wanted to say hello, and welcome to WHL. Please make yourself at home!
03-11-2011, 11:38 AM
Thanks everyone for the well wishes and welcomes. Today is alright. I am a bit sore in my legs today. They dont seem to like me for whatever reason but it's manageable. My chest pain I was having went away for awhile but decided to revisit me last night... I'm not sure if I ate something that caused this for today or if the emotional stress got to me since I ended up having a crying fest for a little while last night. Lol I'm a bit of an emotional person but this has taken the cake for me. Its a bit weird for me to talk about how I feel and am doing since I'm not a very open person in real life. I kind of just take everything in stride and I'm pretty easy going and tend to act as though everything is fine even when I'm having a bad day. It's refreshing go be able to get everything out about how I feel and what's going on and how it's effecting me to people who are in the same boat as me. This year is turning into being a crazy one. I've gotten engaged, been diagnosed, getting ready to move and planning a wedding all in less then four months. It's alot to take in sometimes. But at least there is the happiness of finally being engaged to the love of my life of the last four years to balance out all the other stuff that isn't so happy. At least there is that. Things could be worse... They could be better but could be worse and I think that's whats keeping me strong and not taking this as hard as I could have. Well sorry all for the long posts. I tend to rant when I get typing. I hope everyone is having a positive day :)
Also, my heart goes out to those with family and friends who may have been in japan yesterday. I hope everything turns out alright and the damage that was caused can be fixed quickly.
03-11-2011, 01:10 PM
I always find the leg trouble alot plus to much to stand at times never mind anything else. It's sounds to me the chest pain was off stress for you to break down mate.
Tori you may be a personal person and not open up much but it's best to get it out mate because stress is the worst thing and you don't know if it's causing depression on you, as it's well know for causing that as i went a manic depressive years ago, now if i'm upset i start a thread and type while crying and there's always lovely member's on to help you get by, that's why i cherish them so much.
Try and look on the pleasent side Tori, yes you've got engaged then this came along then planning your marriage, look at the bonus side you have a man who adores you and still wants the marriage that's pure devotion mate and it's hard for many to get in life.
Tori your not ranting on mate, just let it out your system and it's alot better than being held in, i learnt that one a good while ago.
Such a beautiful thought also for what's happened in japan, now look at the living hell they're in till they can sort things right such a shame.
Thinking of you dearly Love Terri xxx
03-11-2011, 02:01 PM
Thanks Terri for the kind and encouraging words. They are helpful. I've found I've opened up on here more then I thought. Which is a nice outlet. I hope you have good days where you aren't too sick and your legs feel better. I know for me I have good and bad days. Today is not the best day but is also had worse.
How long have you been living with this disease? Is it In the beginning of it or is it more progressive?
Anyways thoughts and prayers out to all today.
03-14-2011, 12:52 PM
Like yourself i only had my hubby to chat to and while i was in bed the one night, he searched google without me knowing and found the site as the sister up the hospital recommended me joining a site, so i could talk and it alerts people of progress of the conditions can lead to and it was the best thing i ever did and i've really opened up on here like your finding your doing.
I'm sorry you've not been to good today, it's the lupus it gets in your joints and makes them swell, as my days go on the pain gets worse and today i have felt really sick, i wished i could just throw up at times to relieve myself.
Tori, i felt affects at the age of 5yrs old i was froze all the time and my eyes was always black, then at 14 i used to do things which i could'nt remember doing, i was having autissum and at 18 the lot started with me epilepsey/strokes/spondalitis/DVT and alot more and it was'nt till 4yrs back seeing a dermo specialist who said i had raynauds refered me onto rheumo and everything i'd had from a kid onwards was the lupus and i was born with it and it's more at the progressive stage now, my hubby asked out of 10 how bad is it and i got no reply.
I spoke with another doctor and he said you must understand this when you have systemic lupus which you do [body organs involved] no rheumo will comitt themselves.
Thinking of you dearly mate and sorry your days not been to good either.
Love & Hugs Terri xxx
03-14-2011, 01:27 PM
It sounds like you have had a very long and hard life. I am sorry to hear it is more progressive. It must have been hard not having a name to everything that has been going on with you. I'm sure it was a relief when it finally did come but also it must have been hard knowing you didn't catch it when it first started. I don't understand why you can't get a rhuemy? Is it becaus there is too much going on? Or will they just not say how bad everything is getting? Well I hope you are having a better then yesterday.
03-14-2011, 01:54 PM
What i've found hard is not having much of a life since i was 18 i used to love my work and they just diagnosing one after the other and when my psychiatrist found out because i have to see one for my manic depression he went mad, he said your history after 25yrs of what you've gone through and it's been poor neglect on not going a few steps more to find about Lupus, he told me straight you have good grounds for court proceedings with the hospitals but no way i'm not mentally up for none of it no more, just getting up every morning and waiting to see what state i'm in is enough.
Tori i do have a rheumo but only saw him once and he had the cheek to tell my doctor what i had and put at the top of the letter, thank you for sending me such an interesting lady [Bl..dy Cheek] since then i saw the blood specialist in the day unit and i saw him on my last appointment which should have been the Rheumo then, if i have problems i have to deal with the sister, my next appointments in August.
They just won't comitt mate on saying and that's what alot of us have on here, Rheumo's which are'nt much use now my dermo specialist is excellent.
03-14-2011, 03:43 PM
That seems so dumb. I would hate to go to doctor after doctor and none of them saying what is going on! It would just e so much easier if they would just tell you what they think it was and start you on meds. It would just be easier for everyone. And it would have made your life a hell of alot better! I guess I got lucky that my rheumo dx me so quickly. On the first visit. Even though I really wasn't expecting it and thought it was weird he did on the very first visit. But reading what everyone else has said about it taking years I guess I am lucky to know whats going on. I've only been dealing with this for the past year. I could maybe trace it back to the last three years when I started getting huuuuge hives all over. I just assumed I became allergic to something. Then last April I started having other issues. I had severly blisterded lips, a swollen knee I couldn't bend or straighten and then came June and all my joints swelled and I couldn't walk for about a month and my skin was itchy, I was soo thirsty all the time, I had bruises on my joints from the swelling, I slept for hours a day, I didn't want to eat anything. That was the worst point and of course I didn't go to the doctors... Because I really don't like the doctors. That happened twice last summer and it was horrible. That is the worse it has been. That I'm guessing was a 'major' flare. After I had that problem and I was reading online I realized I had like 8 out of the 10 symptoms of renal failure. Awesome. Freaked me out after that and I vowed to go to the doctors soon after that toxins out what was wrong. I was due for an annual app at that time anyway. I can't have anything with ascorbic acid in it due to if ingesting large quantities that will happen to me. So I avoid it at all costs. My regular symptoms are fatigue, joint pain, body pain, chest pain and flushed cheeks. Those are everyday but at least theyre mostly manageable. Some days are worse then others but I get by. I worry misty right now about beig able to have kids in the next five years. I know it's harder to do for people with lupus. I worry about that sometimes, it seems like my fiancÚ and I are finally getting married after 4 years and wanting to start a family and I just hope it can happen for us.
I so hope that you can get your body under control and be able to have a better life. It's awesome-that your husband is there along side you and helping. That is always a major blessing to have someone to lean on.
03-14-2011, 04:17 PM
What's got me angry mate is that everything i've had over the years is everything that lupus gives you and if it had'nt have been for my skin looking like ringworm and being sent to the skin specialist and then my 2nd appointment him seeing my hands all cut and in a mess plus my mouth as i have those blisters that look like coldsores, he took one look said i had raynauds did 9 blood tests and refered to his client the rheumo specialist who did a furthur 12 bloods and body temprature test and then another 11 bloods was done in the day unit, more showed on each test.
You are lucky going to a rheumo who's acted straight away and it's good when that happens.
All the symptoms your getting with your body is what i'm going through now but i do know this sickness of the plaquenil is getting worse as the night goes on, i'm getting to frightened to eat half the time and i have the thirst like yourself your surposed to keep drinking water besides fluids to help it, if it gets to bad with me i will drink one bottle of water and within half hour the thirst seems to stop.
Have you been checked to see if your anemic because i was dead tied and it took 6mths for them to get a correct reading to showing i was one and now i have a folic acid tablet every morning and b12 jabs every 3mths for life because i get bruises off that.
I feel totally sorry for you with your indigestion with it, the sjogrens disease i have is drying my gullet up bad, i can swallow soups and meat if it's been cooked in a mild sauce then it just flows down but otherwise foods are getting stuck and the pain is terrible and i can only eat small meals now.
I really hope when your married you do get pregnant it's never at all happened to me and then when i was under a brain surgeon he said i could'nt have them because of my epilepsey, so he listed it in my notes to be sterilised and even though i've never been caught for a child i had myself done besides but from 29 it drove me mad because i could'nt have a child but i got over it when i was about 34 i had no choice but i really wish you all the best.
My husband might be here supporting me but i have told him, for me to come on the site and chat to people who are suffering the same as me such as yourself, there's a proper understanding of knowing the pain and troubles but like i said for your fiance to stand by you that means total love and alot of respect goes out to him from my behalf and i really wish you both happieness because how your suffering now you deserve it.
Hi Tori! I would be willing to bet the hives thing was you in a flare. After learning what I have learned I can now look back and see this even in my teenage years. I then went into a remission period and, of course, I don't like doctors so I only went in an emergency. I believe the current attack began with my gallbladder. I say that now because I have heard so many people talk about the Lupus attacking their gall bladder. I had it removed and ended up with a staph infection from the hospital. Took me 4 times as long as most people to get back to work because I was contagious! I finally did go back but I really wasn't right after that.
I started forgetting things and assumed that I was getting old. My joints began to hurt and I started limping. I began to get really stranger rashes when I was in the sunlight and then even from the Florescent lights at work. On and on the things began that I just didn't understand. I broke down and went to the ER when I thought I was having a heart attack and that is another story by itself! I still fought and fought to get an answer.
You are not alone anymore. I too am so glad that you are opening up. It is easier to do with people that understand what you are going through. I have found that the healthy people in my life try really hard but often I just stay silent because I don't want to worry them or complain all the time or...(fill in the blank).
As for having babies you don't have to give that up. Many people are able to have kids with Lupus. Hopefully the doctors will get you on the right combo of meds and get everything calmed down in you. If they can get you to a mild form of Lupus or even into a remission like state you should be good to go!
03-14-2011, 11:53 PM
I know, looking back now I can see that perhaps I have has this longer then the past year. It's just been way worse in the past year then previously. Nothing had showed up on my blood work until this past Jan which is what lead to more blood work which lead to the referral and now here I am. I can't say this past year has been at all easy by any means, because it hasn't. It's been so hard in alot of ways. Last feb the job I was working at full time closed so I ended up unemployeed, I am now a freelance photographer, which is hard to get going and stay going and make a good amount of income from. I sometimes feel so awful for how my life has turned out. My fiancÚ is so caring and would do, does do anything for me. He provides for both of us, he takes care of us, he works 6 days a week just to give us the life that we have. And now in addition to not helping out with the expenses I am having to add doctor bill after doctor bill onto everything else. Plus getting ready to move and paying for a wedding. And him having to deal with my everyday pain and then the two months last summer that I was pretty much useless due to all the swelling going on so I couldn't even function normally. It is so hard to be this person sometimes. It's so hard to sit back and have him work all the time to be able to do what we do and have what we have. I sometimes cannot even believe how amazing he is and why... Out of all people he has choosen me.
This is in no way a pity party here. I'm not trying to get people to tell me I'm a good person and I do what I can. These are facts that I sometimes cannot understand how they came to be. I've never been this type of person. I've always had a job, I started working at 15, I've never been a lazy person. I've never had self esteem issues. And now sometimes I feel like I don't have very much going for me except him. I do get to spend my life with someone amazing. I do take him to and from work in the mornings so we don't have to pay for parking, we live 10 mins from his work. I get up at 3am and pick him up at 12pm...I feel like when he's at work though I sleep until I have to get him, I clean the house when I feel up to it...I just don't feel like I do enough. I guess the hardest thing is I don't feel worthy of this. I don't feel I deserve this kind of unconditional love. And now I have just added another thing to his list that he has to take care of. He has to worry about and be stressed out about the fact that I have an incurable disease that could make our life a living hell down the road. Something that will always be here. Something that I have to take mess for everyday for the rest of my life so that it won't kill me. Dont get me wrong... He is handling this so very well and he is loving me so much inspite of this. I just don't feel like I can take so much from him... It's just hard knowing that he loves me this much without even asking me for anything...
Anyways I went a bit off topic and was rambling once again...haha
Oh and sorry if there are some typos... I post on my iPhone and it likes to auto correct words sometimes....
Terri, I hope the you'll be able to handle the plaquenil soon or get on a med that doesn't make you so sick! And make sure to try and eat even though its hard. Your body definitely needs the fuel. I have a hard to shoving food down at times but I know it's got to happen so I don't end up worse off. Even if it's just a few bites of things here and there at least it's something. I've found I have a select taste sometimes when all I want to eat it fruit... Or cereal.. Or whatever it may be and it always makes me so irritated when we don't what I want to eat in the house since me wanting to eat is slim right now as it is!!
Mari, sometimes I feel like my gallbladder hurts... Though I'm not sure you can feel that?? But I sometimes get a pain on my right side right under the lower part of my rib cage and it's worse if I eat something greasy which I heard could be my gallbladder. I don't know I asked my reg doc about it and she said it was probably a pulled muscle.. I don't believe her.
Anyways I am glad I have a place now to be able to share my thoughts and fears here.
03-15-2011, 10:14 AM
Your not coming on with pity mate and like you said your not a bad person and this is why your chap loves you so much beyond what your suffering as he loves the person underneath the disease and to be doing what he is shows so much love and respect for you.
Refering what your able to do mate, it's the same as we all having to space things out/rest as much as possible and when you get more energy which i do sometimes make the most of it then by doing more things.
Tori i know it's hard to think this way but thinks may look up for you both, where contribution from your side may alter even though you have this, no one knows what the future holds and i actually think if your chap felt pressured to much by it all he may have spoken out before now, there are some really genuine caring people who once in love will give it all they've got.
With what you've written it sounds like your knocking yourself abit, it's happened to you it can't be altered like us all and you've got someone so understanding beside you and please stop saying your rambling, that's what we're all here for to support one another and i've found it's better out than in.
Refering the plaquenil it's really getting to me now and my patience is running short with people as i've got so much going on and the sjogren's disease on it's own is'nt helping but like you said eating small amounts of food may help but i'm getting frightened of eating because of pain and then to much sickness hitting me. I get totally fedup with the lot at times.
I hope todays been abit better mate for you and try and ease up on the worrying because that will make your condition worse and trigger it more.
All my love Terri xxx