Advice on Lupus like symptoms

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rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/8/2015 9:42 PM (GMT -6)   
For about seven months now there has been something clearly wrong with my body. I am a male in my 20's and have never had a single health issue until this past August when out of nowhere, I began to feel weak in my legs and arms, stiffness, sore muscles, eventually a burning sensation on my skin, particularly in my legs, and on and off throat symptoms. I have had a ton of tests, but the only things that came up were a positive ANA titer with a speckled pattern, a low positive anti-ccp (arthritis, I believe). I also tested positive for myasthenia gravis during a test done on my leg, and then when repeated on my hands it was slightly positive. I then went to a clinic for a confirmation diagnosis for which they used the muscle between my neck and shoulder, but it was negative.

The past week or so, I see to be flaring up significantly. The burning sensation has been very bad, my hands feel clumsy, I'm beginning to get what seems like reynauld's when my hands are in the cold, and I constantly have shaky hands. I also am getting a couple raised red bumps around my elbow that sometimes hurt.

Another weird symptom I've been having over the last 7 months that I read in someone else's post is the reaction to fluorescent lights. When I walk in to walmart, it seems like my vision gets worse, my vertigo gets worse, and my body just feels weird.

I saw a rheumatologist in October who said he would put me on plaquenil if I continued to feel bad for longer. I go back this Thursday and think I will try it. I don't know what else to do at this point. Some doctors have mentioned undifferentiated mixed connective tissue disease, which I think makes some sense. Another doctor is convinced its post viral syndrome or fibro. I don't think either of those really match up though.

I'm just looking for advice or people who can relate to this. I hate not having a concrete diagnosis and would just love to finally get a blood test that is positive for something. I always worry that my doctors are missing something, like a hidden cancer causing these symptoms.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/8/2015 10:20 PM (GMT -6)   
Ask your doctor if you could try the plaquinel. Keep in mind it takes several weeks for it to build up in your system.
he might try you on predisone to calm down your symptoms temporary.

Make sure to cover up from the sunlight and fluorescent lights. You can buy clothes with sun protection built in at any outdoors supply place. Use sunscreen and wear a hat. Sometimes I even wear sunglasses.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/8/2015 11:04 PM (GMT -6)   
What does the exposure to sunlight cause? Just worsening of symptoms?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/9/2015 4:23 PM (GMT -6)   
For me rashes, itching, weakness, pain, and feeling very sick. Halogen bulbs make me almost pass out.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/11/2015 10:10 AM (GMT -6)   
Couchtater,

I've read plaquenil can take up to six months. Sounds like you noticed a difference prett quickly. How common is that?

Is it worth asking about prednisone? Would a short trial of it potentially help?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/11/2015 11:36 AM (GMT -6)   
I started feeling a difference about 6 weeks in, but the full effect didn't kick in until the six months mark.

I take short bursts of predisone 6-10 days long every few months. I have cateracts developing due to years of steroids for my asthma So my rheumatologist is sparing with it.

I wouldn't go high dose if I can help it.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/11/2015 2:32 PM (GMT -6)   
I will inquire about it. I know it's a nast drug, so obviously I don't want to be on it for any amount of significant time. I'm wondering if trying it and feeling a discernible amount better will help to confirm that there is something lupus like going on.
 
I have my appointment tomorrow, so I will likely start the plaquenil tomorrow. Last week or so has been miserable. My hands feel like hammers. They're just so achy and stiff it's hard to do things with them.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 3/11/2015 9:28 PM (GMT -6)   
UCTD is an autoimmune overlap condition that cannot clearly be diagnosed. Doctors joke that is the condition they don't now what the heck it is. It often develops over time into lupus and/or some other AI disease. Your clinical symptoms will be identifiable and your labs positive.

MCTD is a specific overlap condition and is diagnosed when the anti rnp antibody shows up. It is classically defined as having symptoms of one or more of the following: sle lupus, polymyositis, and scleroderma. Since it was defined in 1972 other diseases like RA or dermatomyositis can be in the syndrome. I have MCTD with symptoms of lupus and PM but probably not any of the others.

Diagnosing any AI disease can be difficult but overlaps can be very frustrating and sometimes never really develop. Mine did and was extreme. fortunately it was eventually brought under control and I have recovered well over the past 10 years but still have problems mainly caused by lupus.

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.

awtnm
New Member


Date Joined Mar 2015
Total Posts : 2
   Posted 3/12/2015 1:27 AM (GMT -6)   
Has he ruled out Lyme Disease?

undiff
New Member


Date Joined Mar 2015
Total Posts : 5
   Posted 3/12/2015 11:27 AM (GMT -6)   
Good luck at Dr. today bro. Let us know what they said. Good to find a rheumy in your area that is recommended. And just work your way through the plethora of tests. It could just be low Vitamin D. Just saying you have to go through a ton of stuff, like Lyme (mentioned) to really get some (sort of) answers. Probably won't hurt to start the Plaquenil. It's not that bad - just sucks for a while on the stomach and you need to monitor your eyes for rare interaction. I've been on it awhile and still waiting for the glory

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/12/2015 11:40 AM (GMT -6)   
I had the two different lyme disease tests. I know some people say even that isn't good enough, but I never found a tick bite or had a rash.

I've been tested for just about everything else. I brought my b12 and vitamin d levels up to the recommended range and didn't improve. I've had two MRI's, several EMG/NCS, and many blood tests. Everything seems to point to auto-immune.

Saw the doctor today. He said he believes there is an auto-immune issue but since I don't test positive for any specific antibodies, he can't say which. He prescribed the plaquenil, so I'll start tonight. No prednisone for now.

undiff
New Member


Date Joined Mar 2015
Total Posts : 5
   Posted 3/12/2015 11:48 AM (GMT -6)   
Cool- Good luck! I take mine with food at dinner. By any chance have you had blood tests for your complements (C2/C3/C4) and total complement CH50?

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/12/2015 1:08 PM (GMT -6)   
My C3 and C4 were normal. I don't think I had the others.
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