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Still looking for a diagnosis, but Dr says maybe Lupus?

676 Views 7 Replies 5 Participants Last post by  Katharine

Here's a brief history of my situation- I've been having auto-immune symptoms for over 12 years, and am still trying to get a complete diagnosis. I was initially told I had depression or possibly chronic fatigue syndrome, and had many negative mono tests. I got tired of doctors telling me it was all in my head, and stop seeking treatment for a few years. I even started to think maybe it was normal to feel awful all the time and I just needed to toughen up.

I did have a few kidney infections during this time, and was put on antibiotic for my entire first pregnancy due to repeated UTIs. After my daugther was born 4 years ago, my symptoms got much worse, mostly severe joint pain, and fatigue, and I had a miscarriage about 1 year after my daughter was born. I went to a new doctor, who strongly suspected I had RA, but found I had a positive ANA, high Anti TPO AB, and slightly elevated thyroid (TSH), but negative RF. I was givien a referral to an endocrinologist and rheumatologist. The endo gave me a diagnosis of Hashimoto's and has been monitoring my thyroid levels. Most of the time, they stay normal, but occasionally (usually when my other symptoms flare up) I have become hypothyroid, so he decided to put me on a very low dose of Synthroid, which I still take.

The rheumatologist discovered I had low vitamin D, but said I had no other reasons for him to treat me. About a year ago, I became pregnant again, and was again put on antibiotics for UTI. That pregnancy ended in another miscarriage, and my gynecologist referrered me to a new rheumatologist. The new rheumatologist has done a few sets of tests and this week suggested he believes I may have Lupus.

Most recently, my symptoms have been fatigue, joint pain in my hands and knees, vasculitis, bruising, petechiae and numbness in my legs, Raynaud's and very irregular menstral cycles. I started a Medrol pack today to see if it helps, but from looking at my test results, I'm not exactly sure what he thinks indicated Lupus. I woud love any feedback you might have for me. Of course, I know that need to work with my doctor to get an accurate diagnosis, but there are so many knowledgable people on this boards that I thought you might be able to offer some additional information for me to consider.

My most recent test results are as follows (abnormal results are red):
ANA- 1:640, homogeneous and atypical speckled
Anti-centromere, Anti-SCL, Anti-SM, Anti-RNP, Anti-RO, Anti-LA, Anti-DNA, Anti-chromatin- all negative
Complement C3- 86 (79-152 range)
Complement C4- 14 (16-47 range)
Rheum factor- negative
Citrulline AB- 5 (no normal range given?, but this was highlighted on my results?)
Thyroid Microsomal AB- 409 (0-35 range)
Cardiolipin IGG, IGA and IGM- all negative
Lupus anticoagulant- negative
Beta 2 Glycoprotein IgA, IgG, IgM- negative
Leiden factor- negative

Thank you all in advance for any help you can offer!
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Welcome to the site. It sounds like you have found a much better rheumatologist this time around. Diagnosing autoimmune diseases certainly can be quite complicated, huh?

You do have some of the symptoms of lupus, and some supporting bloodwork (ANA high positive and low c4). It appears as if clotting issues are not the reason for your miscarriages although those antibodies can come and go so it may be worth repeating again sometime in the future. I hope the doctor tested your urine as well if there is suspicion of lupus - even though only 50% of SLE patients have kidney problems.

Your CBC must have been normal?

If the Medrol pack helps, or a diagnosis like UCTD or SLE is given, then I would ask your doctor about starting Plaquenil as that is the 1st choice of medical therapy for either diagnostic label. It is a very safe medication and helps many people, all with very few to no side effects.

Have you had the Vitamin D level retested? Or treated? Getting those levels back up to normal can help reduce symptoms of joint pain too.

You are long overdue for a diagnosis and effective treatment! Hopefully you'll get both soon...

PS That citrulline AB is a new one to me, but with some quick Googling it appears to be relevant to RA more than anything else. What I saw mentioned 20 or higher as being positive. But... all labs are different so you will want to find out the reference range for the lab you used and go by that. here is the link that describes reference ranges for that blood test
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Hello!! I hope you start feeling better now that you are on the medrol pack. I am so sorry to hear about your miscarriages thats horrible to go through, it sounds like you might have lupus since they use ANA as an indicator along with symptoms so hopefully they will start treatment and help you feel better,
Have you ever had your thyroid checked I am sure you have but that could be affecting your hormones and maybe the miscarriages, as far as joint pain and such its a symptom of lupus and also fibromyalgia which unfortunately accompanies lupus so ask your doctor about that too, they have meds that will help with the pain that comes from that its like nerve pain, I explain it to others as arthritis in my muscles at least thats how it feels to me!! my doctor also said I have athralgia which I still don't fully understand I think its a different word for fibro in the rheumy family.
Hope you feel better soon and get the answers you need, don't be afraid to start researching and bring info you found relates to you to your next appt if your doctor is open to it, it could be helpful!! to your treatment!!:)
Good luck and talk to you again soon!!
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Thank you so much for your thoughtful replies!

My most recent CBC was normal, but I haven't had a recent urine test. I think I'll ask for one at my next appt. I do take vitamin D supplements, and am scheduled to have that level checked again along with my next thyroid blood draw in June.

I'm on day 4 of the Medrol pack, and it has definitely helped with my fatigue. Usually, I'm dragging myself out of bed every morning, and the past 2 mornings, I've popped up feeling more refreshed than I have in years! My joints feel somewhat better, though not completely, but I also feel like I have more swelling. I read that medrol can cause swelling and salt and water retention, so maybe that's why? I was expecting that the Medrol would either eliminate my joint pain, or not help at all, so I'm not quite sure what to think about my moderate improvement.

My Dr. did say that if the Medrol helps he'd like to start me on Plaquenil, so maybe that will be the next step. Would that have a different effect on my joints, or would you expect my response to be similar to the Medrol?
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I usually get a moderate improvement in joint pain while on prednisone too... it helps but is not a cure-all for me. The dose may also be part of why it's only moderately helping. I generally don't take any more than 20mg a day, and at 10mg or less per day then it helps even less.

That's great the doctor will consider Plaquenil next. It acts quite differently than prednisone; prednisone is fast acting producing results within 1-2 days. Plaquenil usually takes a minimum of 2-3 months, and often 6 months to even 9 months before improvement is noticed! But there are meds that can help in the meantime like low dose prednisone or trying a few different types of NSAIDs. Plaquenil usually helps with joint pain, and any sun sensitive rashes, and can help with fatigue some as well. It offers many protective features for SLE patients, including lowering cholesterol levels while raising the good cholesterol and those who are on it live longer lives ;)

Good luck at your follow up - let us know how it goes ;)
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I talked to my rheumatologist today. I'm starting on Plaquenil tomorrow, and will stay on a low dose Prednisone for 6 weeks until the Plaquenil kicks in. He hasn't exactly given me a diagnosis yet, but did say that the prescriptions are "typical Lupus treatments", so it seems as if he's leaning in that direction.
Hi Shelly:

In some ways you're just like me. I have had CFIDS since 1998. I have hypothyroid. My white count has always been low. In January it was 2.3 and now last week it dropped to 2.1. My ANA has always been positive. It fluctuated between 160 and 320 and now it's gone up to 640--have no idea why? The patterens always fluctuates like yours--speckled and homogeneous. I have the rash on face, neck and chest. The rheumy said it's a connective tissue.

My Lupus still came back negative from about 4 yrs ago when I had it done last. I just saw the rheumy last week and asked him if this rash looks like rosacea or lupus? He said he's pointing more toward lupus. So I don't know.

Does anyone know how they figure it out?

Hello Shelly :)

You have been given good advice by the others. I just wanted to add a quick note about plaquenil. As Maia said it is a very good med that usually has no side effects (except sometimes a few small stomach issues at the beginning) but it does take a long time to kick in for most people. I mention this because your rheumy said 6 weeks. Mine did that too :lol: but in reality plaquenil often takes between 3-6 months to work properly and for some people full benefits are reached after that.

Of course, that doesn't mean that you will have to take prednisolone for longer as hopefully that will simply bring any symptoms under control more quickly and you'll be able to go on from there.

It sounds like you have a pretty good doctor :)

good luck and I'm glad you are finally getting treatment,
keep us posted,
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