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Posted By : kayva61014 - 5/8/2017 4:16 PM
I just recently got diagnosed with SLE after being sick for a year.

I have joint pain, muscle pain, small painless mouth ulcers, fatigue, shortness of breath, constantly feel ill. I'm currently on 400 Plaquenil a day. I've done 2 steroid tapers in the past.

You would think I would be "happy" to have a diagnoses from a rheumatologist but I'm questioning it.

I have a positive ANA. (I have no idea about titer or anything.) When I see my labs online it says Antinuclear Antibody Panel. It says positive and on the ANTI DSDNA part it says 17. (When under 5 is negative)

I have had this done twice 6 months apart with the same result.

But my DS DNA igG Antibody lab says "NON DETECTED".

So the DSDNA part of the ANA is positive but the igG antibody is negative.

Also all my other labs are normal. All inflammatory markers, c3, c4, no protein in urine etc.

So it's literally just that ANA that's positive.

Is this normal for a Lupus diagnosis? Should I get a second opinion?


I'm feeling very sick and I'm in a lot of pain. Ever since he said "You have SLE" I have been slipping into a depression. I have this tiny hope it isn't but maybe I'm in denial.

ANY insight at all?

Posted By : NanaBee - 5/8/2017 4:43 PM
Hi, I know how you feel about getting a diagnosis. When I was first diagnosed I was happy for the diagnosis because it meant it wasn't all in my head, yet I wasn't sure if I really had Lupus either. I have a positive ANA but the only other positive I had at time of diagnosis was AntiRnP. Since then I have had several blood tests done and they always have the same positive ANA and positive ANTi RNP. I was diagnosed about 10 years ago. The last several months I have been very sick and had blood work done again and now for the first time since I was diagnosed my inflammation markers are all elevated too. So I have had a prednisone taper and an injection.

I said all that to say this. I know it is hard to sometimes accept the diagnosis. But keep in close communication with your Rheumatologist and take the meds as prescribed. When they kick in you will feel a lot better. Make sure your doctor knows how you feel and if you have any questions let them know that too. Also coming to Healing Well is a great place to get the support we sometimes need. To know we are not alone.

I hoped this helped a little. Take care. Hugs!

Mary Ann

Posted By : Lynnwood - 5/8/2017 4:47 PM
Mary Ann gave you great advice!

I just want to add this: Lupus is NOT diagnosed by blood tests! It is diagnosed by symptoms. There are 11 symptoms, 4 positive and they will diagnose Lupus. Read www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 5/8/2017 4:50:49 PM (GMT-6)


Posted By : kayva61014 - 5/8/2017 5:05 PM
Mary Ann- Thank you. I got diagnosed in March and it's been really hard. I've been on Plaquenil since Jan! You think it would of "kicked in" by now! Haha. Thank you for the kind words.

Lynnwood- I know labs just aren't diagnosing factors but they do play a big part. I have 5 out of the 11... sad Positive ANA, mouth ulcers, malar rash, arhritis and photosensitivity.

I really... probably... am in denial.

This is just a hard diagnosis. I have 2 perfect kids and wanted to add one more but now I'm scared because of the SLE.

Posted By : Bsime - 5/8/2017 9:36 PM
Your clinical symptoms point toward lupus as well as your elevated ANA. Lupus can take years to diagnose in some cases and can be maddening. Short course of treatment do not work. They provide temporary relief at best. Lupus, if you have it, will be your friend for life. Get a second opinion but interview the doctor to make sure he/she has experience in diagnosing lupus because lupus is the disease of a 1000 faces. It is not an easy task. Average time to get a diagnosis is often measured in years.

Typical treatment is prednisone and plaquinel. Stronger meds if the case is severe. Prednisone is good for the short term but not the best in high doses for long term treatment (years).

I have had it for at least 13 years and probably a lot longer. First course of treatment was 6 years and then many years in remission. It has come back and I am going through treatment hell trying to find a treatment that will work. My issues are serious ones like liver and platelets so no option to just wait and see what happens.

Hope you can find a satisfactory diagnosis but that is not always possible. Experienced rheumys will be able to diagnose lupus even if all the tests don't fall into place.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : kayva61014 - 5/9/2017 7:28 AM
Bill,

I will talk to my rheumatologist but from what I have heard him say he has a few patients with Lupus. So I hope he knows what he's talking about. Rheumatologist are scarce where I live and hard to get into. You have to have a referral and then they evaluate your case and then decide if they want to see you. Average 6-8 months. So a second opinion will be hard.

I've been on Pred twice. Once for 2 weeks... once for 6 weeks. I came off the Pred 3 weeks ago and I feel like I'm spiraling out of control. I'm in so much pain, weakness, shortness of breath etc. I called the office and they told me is they'll see me in July. How do you just wait and suffer like this?

I've been diagnosed within a year... which sounds fast compared to other people.

As of my labs in March I don't have major organ involvment yet. If this is how bad I feel without organ involvement my heart is so broken for you guys who have organs being affected. I am so sorry. Honestly.

Posted By : Bsime - 5/9/2017 8:51 AM
To be effective treatment has to be long term. Often a cocktail of meds. Ask your rheumy if taking a lower dose of pred until your symptoms come under control is a reasonable approach. I have never heard of a short course of treatment working. Autoimmune is not like treating a bacterial infection....it is forever and some cases are chronic and never really out of some level of flare and need some type of suppression med. I took pred for 6 years and the first year at 60mg and still almost didn't make it. IVIG saved my life and then pred (tapered to a much lower dose) and azathioprine kept me well. It has only been in the past 3 years that lupus has reared its' ugly head and attack my platelets and liver. Liver ok now but keeps going after my platelets which is the current dilemma. I actually feel fine it is just the risk of bleeding particularly since I developed Afib 4 months ago out of the blue.

If I were you I would push the doctor on more aggressive treatment because you have significant symptoms that are not being addressed. Pred is used to tamp these down while another drug used that takes months to take effect. Then the doc can experiment with tapering down or even off pred.

Hope you can find an answer but if you respect your rheumy try to work with her and advocate for your situation. Where do you live? Rheumies are hard to find even in an urban medical mecca like Chicago and I know many parts of the country have few if any. In the myositis world there is a medical advisory board of experts around the world who will work with your local doctor on tough cases. Not sure if the Lupus Foundation does that or not but you might look into it.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Lynnwood - 5/9/2017 9:18 AM
When Plaquenil with accompanying Prednisone (like Bill says, lower dosage, longer term) doesn't do the trick, the next level of medications most commonly used are Imuran, Cellcept, and MTX.

It is not known which of these 3 will help any individual patient or why, it's trial and error to see which might work for you. (For instance, Imuran did nothing for me, Cellcept put me into remission, while other patients have different results.) These medications are used in conjunction with Plaquenil and Prednisone, not in place of them.

Then there is a 3rd level of treatment, Benylsta and IvIG. I don't know as much about when they are used, but I think it's after Imuran/Cellcept/MTX have been used to no effect.

One thing I recommend, which may not be helpful in your area, is to check out www.lupus.org, and find the closest local chapter. The Drs who are active on the local chapter's advisory board are often the most Lupus knowledgeable in the area. If you are outside the US, try to find the Lupus organization that covers your area.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Bsime - 5/9/2017 9:32 AM
Benlysta is the newest treatment and was developed for lupus. I have several friends who have been on it for several years and it is working for them. Others tried it but it did not work. It is an infusion, expensive and needs approval by your insurance company. IVIG is used for many AI diseases and it was the treatment that saved my life 12 years ago. I had 2 more infusions 6 weeks ago to treat thrombocytopenia which we think is caused by my lupus. Medicare will generally not approve its' use for lupus but if coded for thrombocytopenia it gets approved. It is also an infusion (gamma globulin so technically not a drug) and nobody know exactly why it works but it does in many of the toughest cases. It is extremely expensive ($40-50000 per infusion so approval is needed and find out if there is a copay. I had none due to medicare and good supplemental policy). My original infusions (5) were under a United Healthcare policy and paid for virtually all of it but the cost was only $15000 for 5 days...prices have soared in recent years.

There are other meds that can be brought into the arsenal if these don't work so push your doctor since you are having lots of symptoms which says your disease is active.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : kayva61014 - 5/9/2017 1:54 PM
Wow! You guys both are just so full of knowledge! I am just blown away. Thank you guys so much. This has been the most helpful website thus far.

My rheumatologist has mentioned Imuran very briefly a couple appointments ago. I wish he didn't just take me off Pred and say "Okay see you in July!" I'm having very deep aching pains continually. I have a very physical job. I work in Labor and Delivery where I work 12-13 hours on my feet. It's been a big challenge.

I live in Utah in the US. There really isn't a lot of rheumatologist around.

I have 2 children and really want to add just one more. I had a preconception appointment with my OB and he says since I have no organ involvement he thinks now would be a good time because who knows what my future entails.

He is having me meet with Maternal Fetal Medicine first to discuss their opinion. I am having a hard time with this decision.

I just hope I can learn more and become in remission. When you guys say remission do you mean you're pain free? Is that possible?

You guys have wonderful insight and I truly appreciate it.

Posted By : kayva61014 - 5/9/2017 3:20 PM
Also... do you guys have any tips for telling the rheumatologist I'm not feeling well?

I called 8 days after I was taken off Pred and all they said was "Take Tylenol. Take Advil. We will see you in July."

I don't want to bug them but I'm not feeling well. I work and a mom I can't be feeling this bad.

Posted By : Bsime - 5/9/2017 9:02 PM
Document your symptoms in writing and give it to the doctor. I prepare a one page synopsis (got to keep it short and use bullet points) for any new doctor or when I need to document what has been going on to make sure nothing important is omitted. Also have a large spreadsheet with every appointment, test ((just record key findings), symptom, medication. There are over a 1000 entries now and I can refresh my memory in seconds to make sure I have an accurate picture of the past. It has been helpful when seeing anyone new or reminding them of what happened in my complicated past history.

Tylenol or any nsaid against lupus is like peeing on a forest fire. As for having another child I would get your disease under control first. Just the opinion of an old guy but lupus needs to be at least controlled.

Remission is defined as no meds, no clinical symptoms and it is possible to be pain free but not everyone can achieve that. I was pretty much that but lupus kicked in 3 years ago attacking my platelets and liver. It did not return with joint pain and fatigue until this winter. Prednisone is the best way to get things under control quickly but also introduce a prednisone sparing drug of which there are many. If effective then prednisone is tapered to a low level or even zero but not until symptoms are under control. Low levels are more tolerable and sometimes that is all is takes when another med is involved Most of those other meds take months to be fully effective so it is a slow and sometimes frustrating process.

I also have another AI disease, polymyositis, which hit me even harder than lupus and it has been in complete remission since 2006...first a drug induced remission but then a true remission. The pain from it was worse (direct muscle pain) than lupus joint pain. Right now I am taking high doses of prednisone due to low platelets and also had IVIG infusions 6 weeks ago so back into treatment hell to find something that controls my platelet count and stops lupus from killing them.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

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