Progression

[phalpin]

I am a 31 year old man dxd one year ago, I am on 400 mg plaq. right now but have been on pred. in the past.

My question is does it get worse? I have spells of serious fatiuge, I have lost about 40% of my facial hair, and I have also lost hair on both of my legs, headaches, joint and muscle pain, and a few other weird symptoms like my legs,hands,feet,arms fall asleep all the time very quickly, cold hands and feet. I feel as though I have a 5 year olds brain now in my 31 year old body, cant remember anything, make decissions for myself anymore and basicly I feel depressed.

I have no organ threat right now as far as I know, is this it? are these the only symptoms that I will battle?
or will it turn and get worse?

Also does the ANA change I was first tested with 1:2650 but recently down to 1:160 which my rhume says the ANA should not change or do you think I should find someone with a bit more Lupus know how?
About 6 months ago I changed GP's but he was at that time looking for a new rhume for me as he felt that this one did not have enough Lupus experience.

[Christine UK]

hello there

When you say will it get better,everyones differant,sounds like you are flaring right now.
I have stages where i am ok ish then times when i am yes very poorly.
so there are good and bad times.
i do hope you are being managed by a rheumy who has good knowledge of lupus.
It is hard with GP,s as you are lucky to get one with knowledge of lupus.
what area are you in?
someone may know of a lupus specialist within your area.
being managed well makes all the differance.
i do hope you feel better soon style_emoticons/<#EMO_DIR#>/biggrin.gif

[phalpin]

Thak you for the resopnse.


I live in Rhode Island, US.

Will it get worse?, I meant will it expand to organ damage or does the lupus usually stay its course or path to jut the symptoms I have right now. I guess I am asking shoud I worry that someday I will wake up and take a turn for the worse or is what I have right now something that I will have to " look forward too " everyday?

Right now I feel pretty good but I do have my moments, It is not easy as most of you know with a family, not having people see all the time how you are feeling and not looking sick, maybe just feel as though you cant get out of bed, you come accross a lazy to your spouse. It is hard on a marriage and you have to be strong and on top of what your going through you yet have to be the strong one and try to hold it all toghther, sometimes I want to just let it all go. Get a divorce, sell the house, quit my job, and rest, But I have two children ages 4 and 1 1/2 and I could not bear to see there faces when I walked out the door.

Sorry to get off subject at the end but I have been feeling stressed that I am alone in this battle and the people in my life just dont get it. I am the bread winner in my family and work a 12 hour rotating shift days and nights, I have have half the month off so on off days I will keep the kids, to save on daycare and I feel guilty sending them when I am home. I love my family but the daily grind of work, watching the kids, this d*#n sickness, is really beating the **** out of me and is very stressfull.

[Christine UK]

Hello again....

Thats a question no one can answer,will it get worse....will it affect my organs ...a million doller question if you like.
What i will say is that many people live a "normal" life with lupus they work have a family etc etc.
Other people yes it can be extremly hard to live and cope with.
thats why having a good rheumy makes all the differance...just ask the people on here!
I was dx in 1978....i have good days i have bad days,what i will say is live for today...dont go worrying about something that may never happen.
One last thing..support..without any doubts that is what has pulled me through my darkest days...it makes all the diierance if people understand thats why i am so pleased you have found this board...
my motto....stay positive...have a good day and take care x

[sweetP]

Phalpin,

I was dx with SLE a year ago this month, and I can very much relate to your post. I have wanted many times to walk away from everything, but I realize that the problems would still all be there. I'm glad to hear that you don't have any organ involvement at this time. Unfortunately it is true that none of us know what our future holds, and I think a huge part of coping with our dx is letting go of our fears & trying to focus only on today. I know this has been a major struggle in my case. I can't control what other people think of me or my disease, and I've made attempts to educate my family about it to no avail. All I can do is focus on my own attitude and thought process.

I found out three weeks ago that I am in remission. I was ecstatic, but soon went into a funk because my symptoms are still mostly there & I started to worry when it will come back & will it come back worse. Pathetic, huh? I think we all get down, we all beat ourselves up a bit, and we're all doing the best we can. You can't always be the strong one or you'll burst.

As far as your rheumy goes, if you are not comfortable with their knowledge, I would be asking for a new dr. right away. The communication you have with your docs is essential.

I hope you will find some comfort and support here!

Julie

[ironcaster1]

I am sorry to say welcome to the world of men with Lupus.
does it get worse- some days yes and some days no-
it is very important that you find a Doctor that is very up to date on the current trends in treatment.
i have been living with this think now for about 5 years- and i go through periods were i get pretty bad- but some days and weeks you wouln't know that i had lupus unless you looked at my face (rash) and blood tests.
you made a good choice coming to this site- when i was first dxed 5 years ago or so i was reading everything and it was this site that really helped. i got the lupus undercontrol and didn't come back until things started to go down hill for me again.
it is important that you know how to live with this and not let the depression get the best of you- and seek help for that too if you need to. i know being a guy you want to try to just tough it out- don't be a superhero get the help you need- so you can do the things you need to do.
Todd (ironcaster1) from Michigan

[rwb200]

Hello Iron Caster and Sweet P
First let me say welcome to the site and I hope you are able to find much valuable information here.
Next let me say. No one can tell you for sure just what the future holds with Lupus. Lupus takes a diferent course with everyone, you could stay right on the course where you are now or could improve or find new symptoms.

As far as the ANA changing my wifes has changed many times. When she has increased activity the levels are higher then when she has no or little activity.
The great drop in yours could be a good sign for you or it could be a case of a misreading. how fast did this change take ?
If it was very fast then it could be a bit suspect.
As far as your doctor goes you are the best judge of that. How do you feel ? Does your doctor seem to be doing the job or do things seem to be getting worse for you ?
Does the doctor take the time to talk to you and give you the answers that you want and need or does he walk in and out and either give no answers or get mad at questions ?

I will say this if at any time you feel that you need a new doctor then get one and do not hesitate to do it.
If you feel you need a second opinion then get that.
This is your health and the number one person in charge of it is you. If you do not feel you are getting what you need then you have every right in the world to look for something new.