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Discussion Starter · #1 ·
Hi all...

I am back from my rheumy appt. It went really well. Unbelievable that 2 doctors that work in the same office can have such different opinions about things.

She said she is almost 100 percent sure that I am in the early stage of lupus and/or rheumatoid arthritis. I am not meeting criteria to be positively dx with one/both but she is just going to go ahead and start treating me with plaquenil. I'm kind of bummed about not being led towards a positive dx but she said it's actually a good thing if we can get it under control before it progresses to that. She said she doesn't like to make a definite dx if she doesn't have to because it does put quite the label on someone as far as life insurance,health insurance,etc. She is a believer of both negative ANA lupus and sero-negative RA which is nice.

So...I am going to start on the Plaquenil and have a f/u visit in 3 months time. I guess in a way....I'm not dissapointed...I finally found someone that believed that I most definitely have auto immune involvement. What a far cry from the other guy I saw.... It baffles me...I showed her my palm rash and she says she see's it all the time in RA and lupus...the other guy said "i can't say I've ever seen a rash like that".......are you kidding me??? I'm very much convinced that he just didn't want to deal with me....so gave me the catch all..."fibromyalgia" dx. So...I feel overwhelmingly relieved to know it's not all in my head!!!

I know the plaquenil takes awhile to start working.....so hoping I can be patient...and hoping it will work!! I think I will just continue with my Vicodin as needed...it's about all I can do for now.

Ok....thanks again everyone.....I'll talk to you all soon....
 

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You know where you stand now, i'm happy for you, Hun.
I only wish everyone on here was to get a dx, it would help us all so much, when we know what we're up against, it's sometimes easier to deal with, it's the unknown thats the hardest part,
Hugs
Sandra.
 

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Discussion Starter · #3 ·
Thanks Sandra!

Yeah...having the not for sure dx is going to eat at me. Don't get me wrong...I understand what my rheumy is saying and her reasoning....but a question for you all.....if I start on the plaquenil.....it has the potential to help my labs never be positive...right? I want to start on it so badly because I want to feel better.....but I also am wishing for an actual dx....just for my own peace of mind. Any thoughts on this?

My sx really have evolved into classic RA...with new onset of hand and wrist pain and swelling, morning stiffness,etc. But...she told me I have a lot of lupus type sx too..mouth sores, sun intolerance,etc. I was going to call my GP tomorrow for a Vicodin refill...I wonder if he would feel comfortable ordering a RF, CRP and CCP....I had a RF done in January...but not one since. Again..any thoughts on this?

Ok...better run.....

Olivia
 

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Hi,
You know i have all that you have written, and yet my rhuemie says no to me, all test's normal, and yet some people get a SLE diagnosis without positive test results, how does that work then? Just wondering.
If i was you i would push for those test's to be done, what harm can it do.
Hugs
Sandra.
 

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Hi
Pleased for you but not plaesed for you
Sort of leaves you in no mans land but someone believes you and doesnt it help /
pleased that you are at least going on some meds and hoept hings stay positive for you
Pam
 

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Thats exactly what my rheumy said last year. It was a bit weird when I had an accident and ended up in hospital. They asked if I was on meds and why and I couldn't quite explain why I was on the plaquenil when I "don't" have a dx. They just didn't get it - in the end I said "like Lupus" to appease their confusion.

One year on he has now moved on to saying I def have auto immune disease but which is still not defined - this is despite the plaquenil having improoved things immensly. You are in a frustrating situation but its def worth it for the relief and does not exclude dx in the future even if it works. Indeed, its partly the ammount it worked that enabled my rheumy to slightly clarify the dx.

Glad you've got some treatment and that it takes effect quickly. Hugs to you.

Wendy
 

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I am pleased for you that you can get some sort of relief. I had a similar thing yesterday where I finally got the dx of lupus and to be told I would go on plaquenil so can understand your relief at the thought of finally feeling better.

Keep going and try to stay positive x
 

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Hello there :)

That was a very good visit and what a change!! :woohoo: I hope the follow up is going to be with the same doc?

A lot of experienced lupus docs will not "label" someone if they feel there are not sufficient criteria but they will go ahead and treat them and sometimes give a diagnosis of UCTD (Undifferentiated Connective Tissue Disease) which may be what she writes on the letter to your GP. She is right that it can have huge consequences. I lost my "loss of earnings insurance" (through no fault of my own) but will now ever be able to take out another. I can also no longer get compulsory insurance if buying a house so if we are ever to buy another house (this one is very tight under the armpits for 6 people!), everything has to be done under my husband's name...

If it helps when speaking to other people, you can go ahead and call it lupus/RA as they really won't understand (and don't need to know the technicalities of) diagnosis.

I hope the plaquenil kicks in quickly for you and that you feel benefits from it.

hugs :hug:
Katharine
 

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wow I could have written this but my experience was the other way around. The consultant I saw today is less inclined to say it is definitley lupus even though Palquenil is improving things. I hope you find an improvement soon
x
 

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I am so happy that your doctor believes that something that does NOT show up on blood work immediately means that you do not have a AI disease process going on. Sounds like this doctor is a keeper.

I am happy your on Plaquenil and be patient for it to work. I am sure you will start to feel better soon and get back to being yourself again.

Congrats for a great doctor and great appointment. Let us know how you make out moving forward.:wink2::wink2::wink2:
 

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I am pleased that you had a good docs appt and that you have got some treatment. It is nice to be listened to and taken seriously. I hope the plaquenil works for you.

Deb
 

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Discussion Starter · #12 ·
HI everyone...

Sorry it took me so long to get back to everyone...hubby and I took a little mini vacation for a few days :). Anywho...thank you so much for all the replies...it means a lot! I agree...I think I have found a wonderful rheumy! Combine her with my great GP and I think I've got a pretty good team now....:).

Still cannot get over the first rheumy...it's almost scary that he is going around diagnosing fibro left and right. One of my former co-workers had been seeing him as well....and she was given a fibro dx even with a positive ANA and classic lupus sx. She is now going to get a second opinion with my new rheumy too...yayyyy for her.

Still bothers me slightly that I don't have an exact dx but I think I do fit the UCTD pretty well....so I'm not going to let it get to me. My husband thinks I'm nuts for wanting an actual dx.......for me it's just so hard to have so many horrible sx and not have a name for it. If the medicine helps...I won't have to worry about it......if my sx continue or get worse some day....I may get an actual dx. I'm just going to take one day at a time.

I must say that it's going to be a long wait for the plaquenil to kick in though....my sx have been almost constant now...it gets rough...the fatigue, flu-like feeling and joint pain.....uggghhhh.

ok...better run...thanks again everyone!!!!

hugs
Olivia
 

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Hello Olivia
It's really good that you feel happy now with your doctors - it makes such a difference. You do in fact have a 'proper', 'real' diagnosis. I am quite sure that many doctors would diagnose as lupus mostly qualified by that annoying word 'mild'. It simply means you do not fufill the criteria for any specific CTD.

That means no anti -dsDNA antibodies, no anti- Sm antibodies and no proven lupus skin or kidney problems. It's a really 'good diagnosis because the prognosis is excellent. Most people with this diagnosis do not progress to any specific disease and more go into remission. And as far as I know it does not carry the stigma of lupus. Just tell the people you need to tell that you have a form of lupus but no organ involvement.

The Plaquenil might be all you need - I hope it helps :)

See
http://www.hss.edu/conditions_14567.asp

All the best

Clare
 
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