[Virginia02]

Im new around, found the site....

I am just starting this long road with Lupus, or so I think...I had for over 2 months what my GP called "rheumatic fever" even if I am 25 not a teen or a kiddo. I was on augmentin which didnt do me any good at all, my whole body was in pain...so my joints, muscles etc..
Until today when I saw a specialist as saw that my ANA is positve and thinks I have Lupus....

Im going for more tests now but I dont have the rush, or the headache, hairloss etc....but who knows...
I am very anaemic, low red blood/ white blood count, up and down platelet count... since august I went rapidly down with no explanation and I cant imrpove my iron or blood counts at all....

I know I am scared to imagine living with this, it has been destroying my life, my work, cant sleep or move but I bet you all know that already...


Ill be around surely.....I wish all of you less pain more smiles

 

[Maia]

Welcome to the site, but sorry for what brings you here. Yes, I think most of us are familiar with those symptoms and issues! I'm glad you are making some progress towards figuring out what is wrong and getting some appropriate treatment for it.

You don't need any rash or hairloss to have lupus. I think hairloss affects a minority, and the lupus rash seems to be about 50/50. You don't need any particular symptom to have lupus actually! It's not called the disease of 1000 faces for nothing

Welcome again and feel free to ask any questions you have as they come up.

 

[onetay]

Welcome viriginia02 glad you found the site. Yes it a test everyday to what you can do today, but most find a way to keep up their spirits and smile even in pain. If there is anything I can do (which is mostly chatting or listening) just let me know. I hope you get some sleep soon and make sure your doctors know you are having trouble sleeping and about the joint pain maybe they can give you something that will help till they make up there minds. It may take awhile for most of us it took at least a year or longer. Hope to see you in the chat room soon.
Tammy

 

[Virginia02]

Well...Im on a strong medication now, doc gv me steroids a 20mg/day saying he will gradually take me out of those, then Im taking a pantoprazole, meloxicam and methotrexate 2.5gr...I still dont know much about these medicines but one thing is that I feel 60% better for time being...

At least now I know where I stand after the vile goose chase with antibiotics ( which merely worked somehow in the first month).

Its a lot to deal with and its difficult to imagine my life from now
on. Ive beem reading what people go trough with Lupus - ie. liver damages, heart problems....and makes me feel depressed..

I just wonder one thing, I am very much of opinion that our mind has full power on body matters so I just wonder what have I done to trigger my body to self distruct?!

p.s. - my family doesnt know yet...I dont even know how to break te news as I know my mum will be heartborken...

 

[Virginia02]

Chat room?

Where is the chat room?
Is it possible to have some more information on Lupus? I have been around on internet but quality information is difficult to find. I understand that even if you start with a mild Lupus, with age things develop no matter what?!

That means an image of me in my 70's is just merely a hope.....?!

 

[cath]

Hi Virginia,

Nice to meet you:blush:

First of all - chat: Look at the top of the page and you'll see a row of bold typed words in a blue/lilac box, starting with 'lupus site', 'user CP' etc. The last but one is 'chat room'. If you click on this, it will link you into the chat room. You will need to have java installed on your computer first - see

http://www.thelupussite.com/forum/showthread.php?t=59359

There is not always someone chatting, so if no one is there, either hang around a bit and see if someone joins you, or try later. Peak chatting times are in the UK evening and the USA evening.

As for what to read about lupus, try first reading through all the infrmation linked via the main page of this site. There are also a couple of books to try. Daniel Wallaces book 'The Lupus book' is good, as is 'Talking about lupus' by Tricia Holden and Graham Huges. You can buy both online via this site if you click on the link 'lupus shop'.

I think you've probably read some overly pessimistic information about lupus. It does not always get progressively worse, and with good medical care it is very possible to live relatively well into old age. Prior to the discovery of steroids and antimalarials the life expectancy was short - about 90% died within 5 years of diagnosis, but those days are behind us forunately. Now it is more like 90% can expect a relatively normal life span. Those who do the least well are those who do not have access to adequate health care, so, treatment really is important.

Lupus is notoriously personal - it affects each of us differently. The people you'll meet here are not a representative cross section. People post here primarily if they are struggling for a diagnosis, just getting used to living with lupus, or are badly affected and need some support. Many people are able to get on with living busy lives, and don't post here. So our site is somewhat negatively biased.

As a rule of thumb, you'll get an idea of how lupus is going to be for you by what happens in the first 5 years after diagnosis. Generally the people who are going to get organ involvement do so in the first 5 years, and if your disease has remained 'mild' for that period the chanc that it will attack the organs later is smaller.

Hope that helps?

X C X

 

[Clare.T]

Welcome to the forum Virginia !

The chat room is accessed by clicking on where it says Chat Room in black at the top right. If there is anybody in there, a number appears in square brackets [3]

I distinctly remember being horrified when I was told lupus was like an allergy to oneself. Was I that bad a person ? I think self blame is probably an automatic response to finding out you have a chronic illness of any sort. But nothing you might have done is responsible for it and you couldn't have avoided it, so feeling guilty is a quite unnecessary emotion. You need to be sure of that in case you come across ignorant people.

Lupus is not a death sentence. Many people live normal lives with their lupus well controlled but they don't post on forums because they have no problems. A forum isn't typical of the entire lupus population

My advice is to start informing yourself about your lupus, meaning how it is affecting you and why you got diagnosed. Get your blood test results and learn to understand them. We can help you through all this since there is a wealth of experienced information here, predigested and tailormade so to speak, so you don't have to plough through overwhelming masses of information some of which is hard to understand and much of which will never apply to you.

Lupus is not regarded as a progressive disease but the sooner it is treated the better. In about one third it stays much the same as when diagnosed. It can develop new aspects or existing symptoms can worsen until it's brought under control. If very serious organ involvement is present or starts then additional medications are needed asap, so regular checks are needed and signs of worsening disease have to be reported.

This site's info section and the Lupus Foundation of America are good for general articles.

www.thelupussite.com

www.lupus.org

About your meds, Prednisone is to reduce inflammation quickly but is taken for as short a time as possible. The methotrexate is a disease modifying drug especially good for rheumatism type problems. Are you taking 2.5 mgs once a week or what? That's a strange dose. Starting dose is usually 7.5 mgs once a week

The meloxicam is also known as Mobic and is a sort of medicine called non steroidal anti inflammatories, NSAIDs for short. The pantoprazole will be to protect your stomach. It's a proton pump inhibitor.
I wonder why you haven't been put on an anti- malarial. The most often used is called hydroxychloroquine, HCQ for short, brand name Plaquenil. This is the first line medicine that almost everybody takes even if they need other medicines.

Only tell people in your life who really need to know and describe lupus as a bit like rheumatoid arthritis since everybody has heard of that.

Bye for now - ask about anything you want to know and we'll help you all we can through this difficult time

Clare

 

[LolaLola]

Hello Virginia, Welcome here. I hope you get a lot of good support from your Docs. If you do have Lupus you will soon learn to manage your condition. Telling people can be hard, especially if you have not yet come to terms with it yourself.
xLola

 

[Virginia02]

I just got my results

I feel really depressed and lonely and I dont understand why the results are so bad or something.

I have an ANF which is positive, plus the SGPT (ALT) is 46 which means its a bit high but I never ever had problems with liver, I dont drink or anytihing.
ESR is also higher than last time - 69mm/1st hour..

My blood is ok at WBC, low for RBC ( 3,72), Hemoglobin is 10.2, Hematocrit 31, MCV 82, MCHC 27, RDW -CV 12 and Platelets went up to 186,000...

Neutrophilis 54%, Lymphocytes 39%, Monocyes 06%, eOSINOPHILIS 01%, Bands 0%

Anti CCp (RF) is 0,3u/ml...

I am lost and confused! Is this SLE?

I've been on Augmentin 675/3times a day for 2 months, can that trigger my problems in liver?!

 

[Maia]

ANF (same thing as ANA) is positive - but you don't specify the titre. The higher the titre, the more likely there is an autoimmune cause for your symptoms. Your SED rate is quite high, and indicates a lot of inflammation.
It's pretty hard to say if you have lupus or not based on these results. That is really something for your doctor to discuss with you, and I would imagine you'll have more blood tests run with the positive ANA such as the ENA profile (SSA, SSB, anti-RNP, etc.).

The ALT test, appears to be barely elevated above normal. A value just beyond the normal range tends to not be too concerning. It will be important to follow it over time, and make sure it doesn't continue to rise. It is possible that the Augmentin is responsible for this being every so slightly elevated. You may want to have a discussion with your doctor regarding the benefit of continuing the Augmentin at this point given the slight elevation in ALT. I have never taken Augmentin for more than 3 weeks... but I'm sure your doctor has his/her reasons for taking it on a longer term basis.

The thing I try to remember when I get blood test results back is that they only reflect you at the time they were taken, and will only hopefully help you get to a diagnosis and effective treatment. And there is a very good chance that in the future they will improve and you will feel better, once you get the right diagnosis and some effective treatment.

 

[Virginia02]

Thanks for answering!!

Well the ANA results come as a positive no other indications as such.
And now I am off Augmentin since last week so I hope to see an improvement...

I am now o steroids and methotrexate(?! is it), folic acid etc...feeling much better but generally depressed....

Its hard to come to terms with such news when 3months ago I was perfectly fine...

 

[LolaLola]

Sorry to hear you are having a bit of a down spell. It will get better,
x Lola