Questioning SLE diagnosis. Any insight?

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

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... 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.

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.

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,

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.

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