Newbie, SLE or something else?

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bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 5/2/2014 2:13 PM (GMT -6)   
I've been very physically active my whole life but things have gone downhill during the past couple of years. Extreme overall muscle weakness with soreness/stiffness and debilitating fatigue that never seems to improve with lots of rest or sleep. Most of my joints are very painful but not swollen. Even getting up is a problem and I'm walking slowly with a wider gait than usual.

I've looked at the SLE possibility but I seem to meet only 2 of the 11 criteria. ANA positive 1:160, pANCA negative, CRP normal, ESR slightly elevated at 23. Not sure about the RO/LA thing yet but those tests are now being processed. My Rheum doc seemed very puzzled when my CK level came back extremely low at 21. Vit-D25 OH always seems to be below 10.

Any ideas or is SLE not even a possibility here?

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 5/2/2014 3:23 PM (GMT -6)   
It sounds like a rheumy is the right place to be - there are several autoimmune diseases besides Lupus. Sometimes these illnesses are so difficult to diagnose that we end up treating the symptoms and the actual dx follows later on.

I hope you get some relief soon, keep in touch.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 5/2/2014 11:54 PM (GMT -6)   
Sounds as if the Rheumy is looking into things well enough. You're with the best person to DX whatever is going on with you.

Having only 2 of the 11 symptoms may be a very good thing. You need to have at least 4 of the 11 to have lupus. Like Lynnwood said a lot times they treat the symptoms then figure out the disease. A lot of times people with have some symptoms and never get lupus either. My daughter has had a positive ANA since she was 7 and she's now 21. She still hasn't been DX'd with lupus and she's now 21.

Lupus is know as the disease with a 1,000 faces so you certainly could have something other than lupus. Good luck with your testing and I hope they can figure out why you're not well. Take care and let us know the results.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 5/3/2014 2:06 AM (GMT -6)   
Just double checked my notes and noticed that they had said ANA was "borderline" (not "positive"). With the titer being 1:160, does this make a difference?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/3/2014 1:56 PM (GMT -6)   
It's a low end titer. Positive starts at 1:80 and double as you go up. 1:160 is the next titer up. Mine was 1:320 when I was diagnosed.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 5/7/2014 10:54 PM (GMT -6)   
Well, both the SSA & SSB tests were normal so nothing extra there other than being able to cross more options off of the DDx list. Started looking into things in more detail myself and I keep ending up with MCTD as being the most likely possibility. The low CK even fits since I've been ignoring my progressing symptoms for quite a while (dumb guy thing, invincible, right?) and read that this can lead to "muscle burnout" with subnormal CK levels?? I have most of the typical symptoms listed and do have another autoimmune disease as well.

My question is: are there other treatment options for CTD's besides corticosteroids? I'm down to one kidney and it's already showing the strain (renal insufficiency) of all my other health issues. Just started using pain killers but simply relying on those doesn't seem like a great long term plan.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/7/2014 11:37 PM (GMT -6)   
Yes, other options include Plaquenil, Cellcept, Imuran, MTX, and more....but none are very good for the kidneys. Your rheumy should be working with your kidney doc to see what the best course of treatment is. Some of those pain meds are also hard on the kidneys.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 5/8/2014 4:15 AM (GMT -6)   
Thxs for the info, I'll look at those as well. My Rheumy "bowed out" saying she "dare not treat me". I do have an appt with my hep & pcp to discuss things further .... they sent me to the rheumy for my CTD issues, lol.

Leilex
Regular Member


Date Joined Mar 2014
Total Posts : 294
   Posted 5/11/2014 7:57 PM (GMT -6)   
bblbt,

You are asking for ideas. I am between diagnoses of lupus and lyme. I come on both sites to check my symptoms and others. You mentioned low vitD levels. I think this is very common in Lyme.

You could have an AI thing going on but check out lyme too. I would love to have a diagnoses! BTW, I have an ANA of 1:160. But all my other labs "look good". Just like you. I wish I had an answer either way.

Good Luck!
Received a negative from LapCorp, Positive bands: 58,66. Waiting to get blood drawn for IGenex. I have plenty of crazy symptoms!

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 6/2/2014 7:31 PM (GMT -6)   
Well, maybe I do have SLE. I've noticed some sun issues in the past couple of years but haven't really spent much time outside due to my advanced liver disease issues. Doc's have me doing better this year and I'm getting out more now. But I'm lighting up with a rash on skin areas exposed to the direct sunlight - mild density of little bumps and itchy as hell. I can see it on skin with adjacent areas, that are not exposed to sun, completely unaffected so the photo-sensitivity seems pretty obvious.

Does this photo-sensitivity rule out MCTD vs SLE or is there something that's possible I'm not aware of?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/2/2014 7:34 PM (GMT -6)   
Often light sensitivity comes along with MCTD or SLE --- or it can come along all by itself. In other words, it's just another (meaningless) symptom. Ain't that grand?

Best plan - use 50+ sunscreen and avoid direct sun, esp. during 11am-4pm hrs. Sometimes with me it doesn't even need light -- just the heat does it!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/2/2014 10:24 PM (GMT -6)   
Get you some sun protective clothing. I need them everytime I got outside or I feel miserable.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 6/2/2014 10:31 PM (GMT -6)   
Thank you Lynn for the info. I'm frustrated by it all ... need the sun for the Vit-D but now have to limit that with both exposure and sunscreen. I'm taking the 50K unit Vit-D pills but my doc only expects some recovery in that area with this approach alone.

That's all minor of course and I'd really like to know where I stand wrt CTD's mainly due to the possible kidney involvement. My kidney is starting to show additional stress (have weekly blood work) and it maybe partly caused by CTD so knowing for sure would really help. I'm transitioning from stage-3b to stage-4 chronic kidney disease and taking any risky drugs to help prevent this may be worth the additional side-effects, if the CTD was really there.

I've mentioned that I have other issues and they're pretty daunting. I have another autoimmune disease, PSC - primary sclerosing cholangitis. It's very advanced and my bile ducts are being destroyed which led to decompensated ESLD - cirrhosis, PHT, ascites/edema, GI bleeding. etc. The PHT also causes a large strain on the kidney (have only one, cancer took the other a few years ago). Just not sure how long the kidney's going to hold out, I have my fingers crossed for sure. I must have a liver transplant but that will likely have to be postponed due to cholangiocarcinoma, bile duct cancer. It really is surreal when I think about it, so I try not to and simply focus on what I can do and plan for the future.

Sorry to ramble on about this stuff but it helps to talk about it sometimes and especially with others that know about the craziness of the autoimmune disease way of life.
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