[bluedolphin]

Well, I have been expecting a lupus diagnosis for a few months and now i guess it's official. I went to the rhuemy today and he said because of the high number of the anti-ds-dna test that i have lupus. I am kind of upset as I guess can be expected. I am also glad though that I finally know what's wrong and can do something to fix it. So I know I will be needing lots of support as I am just now starting these meds and now officially labeled.

Thanks for this forum as I am sure I will be a regular.

Love,
Tracy

 

[LolaLola]

Dear Tracy,
You will go through all sorts of emotions. We all have!
Keep in close touch so we can help you, and learn all you can.
x Lola

 

[sadieone]

Hi Tracy,

Sorry to hear that you have this disease, but be glad to know you are in a great place for support.
I have been here for 2 yrs and love it. Since there is no organized support group near where i live this is the best place for me.
Any questions you may have,, symptoms come about all can be expressed here with lots of experienced, knowledgable feed back.
No i'm not the moderator or the owner of this site,, i'm just a pleased member willing to share.
So visit us regularly,, maybe i'll see you in the chat room one day soon.

Take Care

 

[LoopyLoo]

Hi Tracy,

Big hugz to you ((((((Tracy)))))). I was in the same position as you exactly 2 years ago - I had been expecting a lupus diagnosis for several months, almost willing for it but boy did it knock me for six.

Being diagnosed with a chronic illness is an emotional rollercoaster. One day you can be fine with it, the next it hits you like a ton of bricks. Be kind to yourself and take your time with what you've been told.

On the plus side you now have a diagnosis and can get the treatment and care you need.

Don't be a stranger, let us know how you are.

Hugz, :hug:

Pam xxx

 

[macfamily53]

Awwwwwwww Tracey

I am so sorry you have been diagnosed with lupus but at the same time like they have already said you can start your treatment and start to feel better hioefully ((((hugs)))soon.I felt the same way you do about four years ago.This is the best support i have ever had.Any questions you have i am sure someone will be able to answer for you.Just try to take all the information in and take it just one day at a time(((hugs)))).

Tammy

 

[bluedolphin]

You are all so awesome! I'm dealing with the news pretty good so far, but I'm sure it will still be a rollercoaster as the last few months have been for me anyways.

I'm going to have to check out the chat room. I haven't been there yet. I know that I am going to need all the support I can get. I have a wonderful husband that has really picked up the ball and helped around the house, but I don't think that he can really ever understand what I am going through. I do try to talk to him about it but he doesn't truly know. I am going to be thankful for him though because I know that others aren't as blessed as I!

Thanks!
Tracy

 

[halfpintfl]

Hi Tracy, and a big warm welcome to this site. I am
glad that the uncertainity has come to an end and you now have a diagnosis, but I am also sorry that you have lupus.
For me, I was cool as a bug when I got the diagnosis, as
I knew that it was comming, but, even then it took me a year of being ok mentally, then all of a sudden I paniced.
My mood changed from minute to minute, I just suddenly didn't know how to deal with this Lupus. I hope that you will feel free to ask anything here, and tell us more about yourself. Have you started on your meds yet? Give your
hubby a big kiss, for being so supportive, I have one like that, and I am very lucky. So, keep posting and keep us informed, and I hope we see a lot of you. Be well.:wink2:​

 

[bluedolphin]

Well I haven't cried since getting a dx but I have been on the verge several times. I am praying that the meds that he put me on will help soon. He started me on Prednisone 5 mg once a day and Plaquenil 200 mg twice a day. Today is my first day of taking them both.

I guess the worst part for me is the uncertainty. I know that many people live a normal life with lupus and I am so scared that I won't be able to. I'm kind of a control freak and like everything planned out. I know that there is a plan for my life so I'm trying to come to grips with that now.

The doc said that I have to have an eye exam in the next month to get a baseline and then I will have to have one every year because of the plaquenil. Unfortunately my insurance doesn't have any vision coverage so I'll be paying it out of pocket every time. ugh! I guess it is better than the alternative.

Thanks for listening,
Tracy

 

[lazylegs]

Hi Tracy,

It will take about 6 months for the Plaquenil to kick in. The doctor has you on a low dosage of Prednisone to try to help bridge the gap. If it does not seem to be helping let the doctor know. The Prednisone dosage may need to be temporarily adjusted. Once it appears the Plaquenil is doing its job the doctor will probably wean you off of the Prednisone.

It will take time for you to come to terms with your diagnosis. Once you start feeling better you may even question if the doctor was right. This is a totally normal reaction. I found I do best if I don't dwell on what might happen. I just take it one day at a time.

Hope to see you in chat sometime.

Take care,
Lazylegs

 

[dbecker]

Hi, I'm new here but I just read your message about the eye exams. I don't have vision coverage either. However, you will be seeing am opthomologist for medical reasons not vision. It should be covered under your medical insurance. You give give them a call to verify. Good luck.

 

[bluedolphin]

Thanks for the info Lazylegs. I know it is best not to focus on what may happen, but I am such a worrier. :worried: I have been trying really hard to let go of some things and not worry about them because I know it doesn't do me any good. It's a struggle but I'll keep trying.

My doc only has me on the prednisone for 30 days and it will be 6 weeks before I see him again and there are no refills on it. I guess thats what he meant to do. I am a little worried about him because the first time I went to see him 3 weeks ago he already had the test results from the anti-ds-dna test but he didn't even realize it until this visit. ????? This time he ordered an ANA, C3, and C4 test.

Thanks dbecker. I was kind of hoping that would be the case with my insurance so I am going to talk to them about it.

 

[ALWIN]

Hi Tracy

I just wanted to add to what lazy legs said.

I have gained really good effect form the meds, which include Plaquenil. It took awhile for them to work, but I do now question my diagnosis from time to time because I feel so well .... I know this is unreasonable, really.

However, I am really struggling to make the decision to reduce my dose of Plaquenil to 200 mgs, so I am at least clear about one thing - it works for me and i don't want to get so sick again.

I remember all the feelings you describe, and sometimes laspe back into it from time to time, but never for long.

I am wishing you all the best and hope you get the same effect from the meds.

Do not feel too disheartened if it takes a while - just stay with it. But don't forget to post if you think you might have some side-effects - you'll get plenty of advice and support here.

 

[bluedolphin]

Thanks Alwin. The past 2 days have been better for me. I have had to take a nap both days but when I am awake I have felt better. I feel more like I did before I got sick. I think that taking my meds will only help more and more.

 

[pennylp]

Hi there,

I am sorry that you have lupus, but glad you have a diagnosis as this is the beginning of finally get some help....
I just wanted to add that I was one of the lucky ones that plaquenil did not take long to take and affect in me... I was told six months also...but some people like me it was quicker... And I hope you have the same thing happen to you... Lupus has ups and downs.. Right now I am on an up and I feel well... I hope to chat with you soon... Take care..

Love Penny

 

[Katharine]

Hi Tracy,

I just spent 15 minutes writing a reply and then went and hit some button or other and it has disappeared into cyberspace!! :lol:

I don't have much to add really but wanted to say sorry for your diagnosis even if, like you, when I was finally diagnosed I was also mightily relieved. I have found being diagnosed, treatment etc. to be easier to deal with than the "limbo" state of being undiagnosed that went on for years before.

One thing I wanted to say. If you have any questions on meds, or if you have worsening symptoms, you must remember to get in touch with your doctor or his secretary/nurse and, at the very least, leave a message. Often we don't "complain" enough or we don't want to "bother" people. Try to remember that it is his job, he chose to do it and he is supposed to be there for patients like you that need him.

Also, do try and adopt a kind of "zen" attitude when it comes to life. Even without a chronic illness, planning life out tends not to work terribly well but with one, it can then be incrediby frustrating and stressful. Living one day at a time and enjoying that day as much as you can does tend to work better. On the other hand, you musn't think that in a negative way. For example, it is not because you felt like death warmed up this Saturday that you won't be able to attend a friends wedding in two weeks time, you might be fine!

The disease will go up and down. Hopefully the meds will mean that you'll just have the odd day where you feel just a bit too tired and achy. There will be times where it is all a bit much and you don't quite know how to deal with those feelings and they will come at the most surprising times. It is at those times that you need to try and come here and write about it and get it out. It helps tremendously to feel support from others at those times.

I think another thing we all do is kind of deny anything is going on. I know I do to a certain extent in that I never think of myself as an "ill" person. That has certain advantages but also the disadvantage that, if I do get quite ill, I then get hit very hard by that realisation and that can be hard to deal with mentally. Again, the support from people here make all the difference at times like those.

Learning to pace yourself is also very important. You mentioned having to take a nap. Most of us here have to take a nap quite often and I have learned to do that without any qualms. I'm lucky to be able to work from home most of the time but even then there are days where I just have too much too do. Last week I had to work in town on Friday morning and then had loads to do when I got home. The problem was, when I got home I was so exhausted I was having trouble putting one foot in front of another. I had a choice to make. Either, I would go and sit at my PC and stress in front of a jumble of words that I couldn't possibly piece together (I'm a translator) or I would "waste" precious time in going to bed. I now know that I must go to bed so, I went for a nap, slept about an hour, got up feeling far more human and quickly polished off the work that I would have sat looking at all afternoon if I had tried to do it when I realy couldn't.
I also know that, if we have an evening with guests for dinner, I will be far better company if I have had a nap in the afternoon than if I try to struggle through.

I really hope the meds work quickly for you and that you are soon back to an almost normal self.

hugs :hug:
Katharine

 

[cad]

H i Tracey and welcome,
I am so sorry that your diagnosis has been confirmed, i thnk probably is still hard to except even of you are expecting it. :there: :hug:

It is good like you said to atleast know whats wrong and be able to start treatment which will hopefuly improve your health.

I wish you all the best and hope the meds have you feeling a abit better soon.

Take Good Care

Cassie

 

[bluedolphin]

Thanks Katharine and Cassie. Can someone tell me what exactly I should expect the steriods to do. Like I said, I did feel a little better this weekend but I was at home and was able to sleep late and take a nap, etc. but today has been much harder as I had to get up early and come to work. I feel like I am in a fog and should go back to sleep. I know steriods aren't like a miracle drug and that I should feel perfect but some people that i have talked to said oh you will be running circles around us. Right now I feel like running to bed. I know everyone responds differently also, but what should I realistically be expecting.

Love, Tracy

 

[Katharine]

Hi again,

The dose of steroids you are on is relatively small so, no, I wouldn't expect miracles. They should help relieve pain as they act well on inflammation. They usually work pretty quickly so that you will see an improvement within a couple or three days.

I should imagine you have also been feeling bad for a while and, to be honest, your body may well need some time to recuperate from that. Basically we use all our reserves just getting through a day but there comes a point where the reserves run out. I remember when I was first put on pred, I felt a lot less pain but I was plain exhausted. Why? simply because I could finally sleep. I had had two years of hardly any decent sleep due to pain and I can tell you my body was intent on catching up!

The important thing here is, if you are not feeling significantly better, you have to go back to your doc and tell him and pester if need be.

Katharine

 

[bluedolphin]

Thanks Penny. I hope that it works quicker for me too and I get to be a lucky one!

Katharine, Thank you for the info. I'm not really sure on what level I should be feeling better and I hesitate to call the doctor because I think maybe I am expecting too much. I guess I will give it a few more days and see how I am then. I have always had trouble with meds in my past because it usually takes a lot for me to notice any difference. I really hate taking anything but I am so desperate to feel better...

Tracy

 

[bluedolphin]

Hey everyone,
I also noticed today that I have had to go to the bathroom much more than normal. Is it normal to urinate a lot more when starting these meds?