[lovelovelove]

Hi...I just found this site today and after looking around, decided to register and post a thread here. I think it would be nice to talk to people going through similar things.

Symptoms: I have exhibited signs of Raynaud's for years. It used to be worse in my feet and they would turn blue when I got cold. Now, my hands and fingers will turn white/ghost-like and my fingernails will turn blue. About 6 months ago I got a bad rash on my stomach/chest/upper arms, but the doctor I went to couldn't figure out what it was and prescribed about a week's worth of prednisone (the rash faded a little bit after that, but still took about 2 months to go away completely). I'm extremely tired all the time--often to the point where I can't even get out of bed. I'm really weak all the time also. For the past 9 months or so, I've been getting fevers nearly every night (usually ranging between 100.5-102.5). My ankle, knee, elbow, wrist and finger joints are all really sore and swollen. The pain in my joints is so bad that it makes it difficult to move or even to sleep. My knees and ankles are the most swollen. I can't even see my ankle bones anymore and my knees are hard and puffy and really swollen all the time. My fingers are also very swollen. I'm really dizzy all the time and experience loss of balance. I have extreme sensitivity to pain--things that probably shouldn't hurt hurt a lot, and the pain lasts for a long time. I get migraines often. I suffer from bad insomnia and though I am always tired, I can hardly ever sleep (but when I do fall asleep, it's for way too long). I have bad jaw pain and my salivary glands are swollen. I get mouth ulcers fairly often and my mouth is always dry (as are my eyes).

Anyway, I had my first appointment with a rheumatologist recently. He suspects lupus, but bloodwork that I had done with another doctor came back negative for ANAs. He said he found that strange, since he was almost sure I had lupus, so he ordered more bloodwork. I'm currently awaiting the results. Right now, he said he's calling what I have undifferentiated connective tissue disease. He also thinks I have Sjogren's. He prescribed me prednisone, which I started, and said he wants to put me on Plaquenil as well.

Any advice would be welcome and I look forward to meeting any of you

 

[Katharine]

Hello there and :welcome:

It sounds like you have a good rheumy there and it's great that he is starting you on treatment. Hopefully the pred will get things under control quickly. Plaquenil is really our main baseline med - it is disease modifying and, in the long-term will help reduce the frequency and severity of flares. Its main disadvantage is that it can take some time to kick in fully - usually between 3-6 months but sometimes longer.

Although it is very rare (2-5%) there are some lupus sufferers who have negative ANA. I have never had positive ANA but showed strongly positive for lupus in a skin biopsy that I had done on unaffected, unexposed skin. That then made the rheumy dig further and order more specific bloods which came back positive.

The main thing is that the rheumy has taken your clinical observations into account and is treating you as if you had lupus and that will hopefully make a huge improvement to your quality of life.

UCTD is a "real" diagnosis - it simply means that they cannot say exactly which connective tissue disease is causing the problem. It is a bit of a mouthful and many people just say lupus when explaining to friends or family.

If you have any questions, don't hesitate to ask away, there are plenty of knowledgeable and supportive people here willing to help

Bye for now,
Katharine

 

[x_claire_x]

Hello and welcome to the board... I was diagnosed with MCTD (Mixed Connective Tissue Disease) last Nov, after five months of agony and much the same symptoms as you.. it does sound as if your Rheumy is on the ball as Katharine said.. I think its a brilliant idea to start you on pred to calm things and also plaquinel as a long term strategy to reduce you disease activity, but as she said it can take a long time to kick in and sometimes up to a year..so it is a bit of a long slog but at least you have now started the journey!! It doesn't need to be ANA positive to have something auto immune going on and as Katharine pointed out a small number will always be ANA neg but still have Lupus. There is a list of criteria on this site and you need to have 4 out of 11 with or without bloodwork to be diagnosed. I wish you all the best with your tests and investigations and hope you get some relief soon.. in the meantime, start a daily symptom diary and grade the pain 0-10 (10 being unbearable) and take photos of rashes, swollen joints etc so you have good documented evidence for the Rheumy to see... we often look fab on appointment day:lol:..... until the next time, take care.
Claire XX

 

[lovelovelove]

Thanks to both of you for nice welcomes

I think the prednisone is already starting to kick in a little--I've noticed a tiny decrease in swelling.

I'm just worried because as a college student, I've been lucky that I've been on summer break the past 3 months as my symptoms have been worsening, but school is about to start again soon. I'm taking a full course load with classes every day and I'll have 2 jobs. Considering there were entire weeks where I wouldn't leave my house this summer because I was in so much pain and so tired and too weak to even sit up, I'm wondering how I'm going to be able to function...

 

[Pink Pearl]

Hi and welcome to the board. Like Katharine said, there are some of us who have NEVER had a positive ana test. EVER. I am positive on more specific tests, but the ana is elusive. SO, I get really irritated when doctors put all their eggs in the basket of ana and don't look any further. The ACR criteria lists that meeting 4 of 11 symptoms constitutes a diagnosis of sle. It does not list ana plus 3 or more, only that meeting 4 or more of 11 symptoms = sle.

I don't envy you your fall schedule.

 

[lazylegs]

Welcome to the site.

Your schedule definitely sounds challenging. During any breaks in your day you should try to nap. When napping isn't convenient try just sitting back with your eyes closed thinking of somewhere beautiful. It's amazing how restful even 10 minutes can be.

Good luck with you classes.

Take care,
Lazylegs

 

[veggie222]

Try looking into changing your diet, eat less meats and diary. I became a vegetarian 3 months ago and have notice imporvements in how i feel.

 

[KarolH]

Wanted to say Hello and welcome to the site.

Try to rest when you can even if it is for just 1/2 hour.

My ANA goes from high positive, to negative and back again. Very strange but then again there is not much normal about me anyway.:lol::lol::lol:

Good luck with school and please join us in the chat room sometime.:wink2:

 

[cad]

Hi there,
I just wated to say that I really empathise with how you feel.

It is good though that you rheumy is acting on your symptoms even though your bloods have been negative. My ANA was positive the first 2 times but was actually neagative a month ago this is after being diagnosed for over a year. The first lot of bloods did not show any other antbodies but then the second lot did and again the last lot diidn't.

Some people do have symtoms for sometime before their bloods become positive and for some they never do. The important thing is that your rheumy is beginning the appropriate treatment regardless.

Try not to get too hung up on the bloods thing, I think this matters more for those who are being dismissed by docs who won't treat without them being positive or who without the bloods would deny that there is a disease present.

I really hope that the pred and plaq give you some benefit and things start to improve for you soon. It's not easy I know but try to hang in there and try to limit what you do as much as you can when you are feeling bad and rest when you can.

Take Care

Good Luck

Cassie

 

[debatat]

Just wanted to say hi and welcome to the site. It sounds as though you have a good rheumy. It is great he is starting to treat you, bloods can be unpredictable. I hope the meds help you soon.

Deb