[Micheline]

Hi everyone,
This is my first time on this forum. So many times, I started writing, and for some unknown reason, I backed out. This time no backing out. Here I am.
I have been diagnosed with SLE since 1990, yes, almost 20 years. of fatigue, photosensitivity, mouth and nose ulcers, pericarditis and pleuritis, Raynaud's phenomenon, headaches joints pain,muscle pain, name it I probably had it.:worried:
All these years, I had to deal with the ups and downs of this disease. I made it ok, most of the time because, when i feel good, even not for long it makes up for all the times i feel so bad.
But,right now, i don't feel so good. I can't sleep, although I feel so tired. Soon as I lay down, I can't breathe. My mouth is dry and I can't swallow. I am hot and cold at the same time, it is hard to explain exactly how I feel. It is after 3:30 am and still can't go to sleep. I think, I'll try again,maybe this time i'll go to sleep. :yawn:
Ps, Please forgive my writing in english, because I am french. Hope there is not too many mistakes.
:thumbs: bye for now

 

[Pink Pearl]

Hi Micheline, welcome to the board.
We have been dealing with this companion for a similar length of time. I was dx in 1988.
Have you had your lungs checked for lupus involvement? I have that plus asthma, and when I am in a flare I cannot sleep if I am laying too flat. I have had a lung infection the last week and am using 3 to 4 pillows to sleep at night. I'm also on antibiotics.....
What are you taking to control the migraines? Things have changed a lot in the last 15 - 20 years in the treatment of them. Other things with sle too.
Where do you live? Are you being cared for by a rheumatologist? What is the doctor saying about your aches and not being under control?
Perhaps others will have better suggestions.....I seem to have more questions than answers. The moderators on this board are superb.
I hope we'll see you often.
Sally

 

[Katharine]

Hello Micheline and welcome

I'm glad you decided to post and I think you'll find that the site is a real help. It's great to simply have the implicit understanding of those who CAN understand what you're describing.

Your English, by the way, is excellent. Wish I had more students like you :lol:

I live in the French speaking part of Belgium so have the same problem as you when writing in French. I speak easily and fluently but always feel my writing will be riddled with mistakes in written work.

Katharine

 

[greenhaggis]

Hi Micheline and welcome to this site!

 

[Micheline]

Hi,again

Hi everyone
Thanks for welcoming me to the board. Sally, Katharine, Lesley, thanks for answering my post, nice to meet you.
Yes I did get my lungs check and I do have lupus involvement ,and asthma, it is the same for me I got to sleep almost sitting down. I take singulair 10 mg once a day at bedtime for this, plus inhaler flovent and salbutamol. Hope you feel better with your lung infection, I had a few of them and their no fun.::worried:
I don't realy take anything for my migraines, they come and go. I live in Canada, yes, I'm being cared for by a rheumatologist. I'm on plaquenil,apo-hydroxyquine 400 mg a day. For pain I take celebrex 200 mg a day, also acetaminophene 500 mg when needed. for my stomac pantoloc, my heart novo-metoprol 50 mg twice a day and asaphen to thin my blood. I just had an iodine treatment for my thyroid gland. Waiting for results from neurologist for MRI. Tell you more next time....
Again thank you all
bye for now take care
Micheline

 

[Bori]

Living with Lupus... not easy

Hello everyone:

Although I have being in the computer business for many years I never post anything or enroll in any blog sites. However today I needed to see if I wasn't alone with the daily Lupus fight. I can see that many others are suffering like me...
I was dx last year but looking back I had the disease for many years. I’m so tired, and my brain is not functioning like it used to... It is frightening, I consider myself an intelligent individual and I can’t even put my thoughts together not even to type this email. My job require a lot of concentration and dedication and I can’t do that; It takes me a lot of effort just to stay at my office for a few hours… I need to write everything otherwise I just forget. Is this normal? I’m on my 30s and I feel like I’m 100 years old.
So far I have thyroid problems, Reynaud disease, and some rash (that comes and go) very annoying too, liver issues, etc… My rheumatologist have me in a trial program called Belimumab and no other medications. Have any of you heard about it? At the beginning I felt better but now I’m back to square one: tired all the time, constant dizziness, fatigue, anemia … you name it… I also changed my eating habits drastically; I followed some of the recipes and suggestions I found in a book called Lupus: “Alternative Therapies That Work” … it make me feel better but when I need to travel because of my job I have to eat whatever I can find… so it’s hard to follow the diet like I want it to. Are you guys having allergies to certain foods like me?

Thanks to all of you for posting your comments… I don’t feel alone neither “crazy or hypochondriac”…

 

[onetay]

micheline,
Welcome to the site and I hope you finally got some sleep. You did very well with the english. I know the feeling as do most of us here. I have been dx for 17 years now but had been having problems some before that. It is hard to have this for so long but on the up side we are the surviviors, elders, or whatever they call us these days lol. I am glad you decided to post this time and interduce yourself to all of us. It is always better to know you are not alone. We have a chat room and I hope that you will join us in there sometime soon.

 

[Pink Pearl]

Hi Micheline,
No, I have not heard of Belimumab. What is it? What is the philosophy behind it?

I was dx in 1988, but was ill for a long time before that. I can not remember a time when I did not have migraines. I have been on heavy duty meds for them for years and years now. We have them down to 3 or 4 in a year....amazing considering where I started.

I am doing much better with the lung infection. Just clearing out the last of the "crud" from it. I'm still on antibiotics for a few more days. We just need to make sure all the bugs are gone before I am done. If I listed all the meds I deal with on a typical day, it would stagger you. I figure that they are the price I pay to stay alive. It beats any alternative, and I am just lucky that they have them available now.

Yes, those of us who have lived with this for a long time are the first of, hopefully, many generations to follow on living longer than any previous generations before. We are writing the pages for others to follow. We are the first generation for rheumatologists to follow who have dealt with and lived, beyond any generation before. And haven't we done a bangup job!
Sally

 

[Clare.T]

Welcome Bori !

Welcom to the forum Bori

Yes having lupus can be very lonely so it can make all the difference to living as well as possible with lupus getting to know other people with similar problems and sympathetic understandings of what it's like.

I have heard of Belimumab ( Lymphostat B) which is described as a "fully human monoclonal antibody" which has an effect on the actions of the B cells. Rituxan is in the same group of drugs affecting the B cells but it depletes them, and also it is a "chimeric monoclonal antibody" - something to do with mice ( don't ask me !:hehe It was hoped it can be an option for those for whom Rituxan didn't work or who had a bad reaction to rituxan

It's mentioned on the forum a couple of times

I have edited out the search results link because it doesn't seem to be working. Try the search engine for previous references
An article
http://www.medicalnewstoday.com/articles/74362.php

I'm sorry it doesn't seem to be helping you much.

It must be very hard eating healthily if you are away from home and having to eat out. We eat out very rarely for several reasons, but now we don't even get take aways because we don't know exactly what's in them. My husband especially has to take care with diet because he has diabetes and had a stroke and heart failure and is on blood thinners. Also food preferences rule out a number of common items like anything with cooked cheese or cheese sprinkled on it, is not to his taste and we don't add salt in cooking.
However when we were in NYC we could get steamed Chinese dishes which were excellent.

It's always easier to follow a 'prescribed' diet for some reason, something written down in a book, sort of imposed on you by somebody else. I have reservations about this book because while a good diet can only do good it's clear that far more than a good diet is needed for many of us.

I guess you have certainly been tested for antiphospholipid syndrome which can be responsible for cognitive problems. Thyroid disease and anemia can also play a role but I suppose they are well controlled. I know that some trials require no other meds and other trials stipulate which meds can and can't be taken, in order to have everybody enrolled as like as possible and to make sure no other meds are interfering with improvements. Maybe not taking whatever other meds you used to take is doing you more harm than any good the Belimumab is doing. Multi therapy is very common these days so as to get the benefits of each drug's action with the least risk of side effects.

All the best
Clare

 

[LolaLola]

Welcome to Micheline and Bori!

I hope you will enjoy being here. This is a good site, Everybody here will support you.

Bori, you will learn to cope with the memory lapses etc. Don't multi task, keep a notebook and learn to say NO! This is not the whole answer but does reduce the demands on your brain.
x Lola

 

[Micheline]

Hi

Hi everyone
Thank you again, for your welcoming, it really feels good to be understood. I finally had a few hours sleep last night, 1 to 5 am, it is better that no sleep at all, but I don't feel rested much. Hope to catch a nap later. My joints are just sore and stiff all over, so I won't be on my pc too long. Hope you all feel better and have a good day.
Bye for now
xox
Micheline