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hi all

just wondering if i could ask for any advice/opinions. After being told by a gp i dont normally see that i have lupus i have come back from my follow up rhumie appt. After looking at my result he said that because i had a high positive ana 1:1280 and aches and pains it could suggest a lupus diagnosis. I also had a positive ssa blood test which proves either lupus or sjogrens. He asked what my symptoms where which i told him (bad aches and pains, swollen glands, jaw pain, vascillitis on lower leg flares, fatigue, oral thrush, dry mouth). He then said that he thought i had sjogrens not lupus. I said couldnt i have both and he said if he thought i had lupus you would expect some of my negative tests to be positive ie anti dsDNA, sm, c3 and c4 etc etc, he said at the moment a lupus diagnosis was not likely. I am aware that these result can change at given times ie flares etc. My bloods were taken shortly after a vascillitis flare though. My RF was positive but he said that he is unsure that i have rhumatoid arthritis, should i ask for some x rays to be done?. I feel he was reluctant to give me a sure diagnosis based on these results, and i think i am displaying symptoms of lupus. He is intending to start me on plaquinil soon after my eye test but will treat me for srjogrens. I feel frustrated and confused by all this. What do you all think???

many thanks annie x
 

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Hi Annie, its good that you will be started on Plaq. as this is a base line drug used for Lupus!

When is your eye test? Have you been given your prescription for Plaq. in advance and at the ready!

I'm surprised whoever suggested the X-rays did not just request them!

Until bloods show anything positive its seems that you are still going to be treated for Lupus + Sjorgerns which is a bonus re. treatment. It will also make things easier re. mortgages and holiday insurance with no positive diagnoses, but still being treated for it!

I'm going into chat now it you want to chat!

Love Lesley
 

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In my opinion, you could probably qualify for either diagnosis with those symptoms and blood test results. Or both. I am not aware of Sjorgen's being especially known for causing vasculitis although it's probably quite possible. Sjorgen's can also be a pretty severe, systemic autoimmune disease that can affect many organs and cause a lot of pain too. It's not just dry eyes/mouth!

Was this your first follow up appointment with the rheumy? Some rheumy's are quite reluctant to give a lupus diagnosis quickly, and will choose to officially diagnose something else initially until there is no choice but to dx lupus. This is personal diagnosing habit - quite possibly due to the very negative effects having a lupus diagnosis has on obtaining health or life insurance in the future.

As already stated, the good news is that you are being started on medication that treats both lupus and Sjorgen's. If you need something else in the next few months to treat your symptoms please contact the doctor again. A short course of prednisone can be quite helpful in quickly controlling pain levels and increasing energy too. Or other pain medications may be given...

Take care and hope that eye appointment is soon!
 

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sounds like you have a doctor who is on to it, and who wants to monitor you and see how things go. While many of us do have both diseases, many also have primary sjogrens (without lupus or RA) so anything is possible.

Sometimes it takes time to come up with the correct dx, and it is better to wait and see rather than rushing in and giving you a dx that may end out being incorrect in the long run.

Your treatment would be the same whichever disease you have (hence the rx for plaquenil, a traditionally lupus drug).

best of luck with it all, personally I think it pays not to rush things in the early stages.

raglet
 

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Hi Annie,

I agree with the others, sometimes an official diagnosis is not as important as proper treatment. Your bloodwork will probably fluctuate throughout the years...I know mine has and has now remained pretty much negative for the last 3 or 4 years.

Whats most important is that your symptoms are treated and you are feeling well again. Plaq works well and has few side effect...I hope you have positive results with it!

Best of luck,
Sharon
 

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annie1971;506139 said:
He then said that he thought i had sjogrens not lupus.
Hi! Please join the Sjogren's World forum---if you haven't --sjogrensworld.org

Good group of folks, and lots of info/advice on Sjogren's. Like you, I seem to have mainly symptoms for SjS, but there are some Lupus symptoms, too. Some of the Sjogren's forum members have diagnosis for both, some are sero-negative for either, but have all the symptoms.

C
 

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Hi Annie, it sounds like he is pretty sure you have lupus, but he wants to hold off giving you that label until he is 100% positive. The thing a lot of these dr.'s don't realize is that there is no one blood test that can say "yes" you do have lupus, or, "no" you don't have lupus. If he is going to start you on Plaquinel, then you are 99% have it, remember I am not a dr.. You are off to a good start, remember- no stress. be well.
 

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Hi Annie. Yes, Sjogren's can cause vasculitis. Matter of fact, my dr. says it's his main concern about my sjogren's. He has already dx me with vasculitis, even though I don't seem to have many issues with that. Just a few flare ups where I was covered with small bruises over a large portion of my body -- all at once. Sjogren's can affect just about any organ in the body. Including the biggest organ -- your skin and the nerves in it.

My dx is Primary Sjogren's. But some of the physicians I see say they believe I also have lupus. My blood work was all negative and I was dx with Sjogren's via salivary gland biopsy.

I no longer really care what the name of my disorders are. It all seems to be inflamation of one type or another. Although I'm not certain that's the case with the pain in my face.

I'm glad you have a dr. who is apparently caring and interested and is pursuing your case and treating you. Plaquenil will be helpful, no matter whether you have Sjogren's, lupus or both.

Please keep us posted on how you are doing. While many drs. believe Sjogren's is a mild disease, the truth is far from that and if that continues to be your "only" dx, you still need to continue seeking the best care possible.

Sunny
 
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