Lupus?

Hi, I'm new to this section of the forum. I'm 35 and I've had ITP since 2005. My platelets hover around 60-70K so I'm monitored often by my hematologist but luckily no meds needed yet. A few weeks ago I started having some body aches and stiffness that didn't seem to go away. I thought I had a bug, but then it lingered long enough I knew something was off. I also noticed numbness in my feet and hands that felt like they're swollen and pressurized, but they're not swollen when you look at them. It even hurts a bit to walk on my feet...especially bare feet. I went to see my general doc because I suspected something was not right. She suspected another autoimmune disorder so she ran 4 tests, Sed Rate, C-Reactive, Rhematoid, and ANA. Sed Rate and Rheumatoid Arthritis came back OK (negative). C-Reactive was slightly elevated (6 or 6.5) and ANA came back positive at 320. So they're referring me to a rheumatologist. I can't get in until January 11th so I'm looking for any info about what this means. Does a positive ANA mean lupus with my symptoms and history of ITP? I have a feeling it does and so does my regular doc, but they want the rheumatologist to run more specific tests to find out more.

In the meantime, I'm really anxious about what to expect. I'm having some off and on aches and fatigue and looking back I realized I'm always so tired...more than most people. I work full time at a busy job, have a 4 year old and I just thought anyone would be tired with my busy schedule. I've also been seeing a chiropractor and a massage therapist regularly because my neck and shoulders always seem to ache and have pain. I thought I had a pinched nerve in my arm or carpal tunnel or something. I thought it was due to my desk job and lifting my son. In August, I noticed my knee bothering me so I went to an orthopaedic specialist and they said I have tendonitis in the knee. I thought oh well...I'm getting older so this stuff happens. But now that 2 tests came back positive, I'm starting to wonder if it's been there for awhile and I didn't want to complain because I felt like a hypochondriac sometimes. Tendonitis is inflammation and with all my other aches and pains and fatigue I'm wondering if it's all related and I didn't realize it until this recent bout where it got worse than usual.

Yikes....I'm a little scared about all of this and what this might mean. Am I going to live a life of aches and pains now? I don't like pain meds so I'm already starting to get some anxiety about this. Any thoughts? I'd love to hear from someone who has gone through this.
Thanks

CCC:

Ahhh where to start. Having ITP and an elevated ANA does not mean that you do have Lupus. Those two alone do not make a diagnosis. It takes much more than that, although your symptoms do carry a bit more weight towards a diagnosis. However, you'd need more blood work and more elevated/positives in order to get a diagnosis. Let me tell you my story (short version) so you can get an idea of what can happen.

I was diagnosed with ITP in 1998. I had quite a few of the common Lupus tests at that time, all were negative. In 2004, I began to have symptoms like you describe. Feeling flu-like, horrible muscle pain, fatigue, joint pain, etc. I had an ANA done and it was the same as yours; 1:320. I saw a rheumatologist who did more extensive labs, all came back fine, and he told me good-bye - I didn't have Lupus.

I didn't think I should be dismissed that easily because of the symptoms, so I saw another rheumatologist. He monitored me every four months and did give me meds to help manage the pain. He kept assuring me that I didn't have Lupus, but did keep seeing me. As time went on, I began to have more elevated/positive blood work that began to point to Lupus. My SED was high, my C3 and C4 were low...those are two more criteria. A few months later I had an elevated dsDNA (huge diagostic lab for Lupus) and was found to have APS antibodies. That clinched the diagnosis. It took about 3 years.

My point is that Lupus can develop slowly and one appointment cannot rule it out. It can take some people years to get a diagnosis, or it may never develop enough to be diagnosed.

I'd have to say that yes, I do live a life with constant pain. I work a full time stressful job though and I get through it. I take pain meds and don't like them either, but they are a necessity if I want to function. They do usually help, but I have days where nothing helps. You might get lucky and find a drug that does the trick for you. I have found many things that do help, at least short term.

I hope I answered your questions. If not, fire away and I'll answer more as best I can.

CCC,
I have lupus and ITP. I was diagnosed with SLE in 2005, but had discoid lupus since 1982. I do not have pain. Lupus manifests really differently in different people. For a while I thought I was getting lupus related muscle pain but it turned out to be prednisone taper-related. I've also had weird short episodes of joint pain in fingers and toes during 2005 when the disease and the ITP emerged, but that all stopped for the last couple of years during which I've been in ITP remission mostly or all due to Rituxan.
Erica

Deinitely you'll want to see a specialist to rule in or out Lupus. However, fatigue can be an indicator of several autoimmune conditions, one of the most common being Hashimoto's thyroiditis (hypothyroidism). I don't see fatigue with my ITP until my counts are under 30K, if I'm over that the most likely cause is a need to adjust my thyroid meds. To check most PCP's do a blood test for TSH (thyroid stimulating hormone). You can have normal TSH but still have symptoms if you have a high thyroid anitbody count.

I had some outside the normal symptoms before I regulated my thyroid meds. One of the uncommon symptoms that both my mom and I had and I've seen mentioned occassionally on the thyroid chat boards was pain in the ball of the foot so bad when you first got up that you actually limped which would clear up the more we moved. Mine stopped within a week of starting thyroid meds. The other for me was a big reduction in the pain and symptoms of my TMJ. I still grind my teeth occassionally at night, but I no longer have to wear the bite splint and the constant pain in the neck, shoulders and across the check bones is now very rare.

Lupus muscle pain is awful. This is how bad it gets. I went shopping on Friday for an hour at the mall. I carried a small bag of shirts that I bought and my arms were literally shaking from the weight. I woke up Saturday so stiff I could barely move all day. I felt those muscle aches like the flu, and also felt like I'd worked out at a gym for 6 hours. It was so painful that it took everything I had to do some normal weekend cleaning. It gets really depressing that I can't even shop like a normal person any more. Anything out of the ordinary does me in for two days. That day, there wasn't a drug that made a difference. I'm losing all of my muscle mass because I can't exercise or lift things. The Friday before I put up my tree and decorated it. The next day, same thing. The only thing that helps is laying in bed under the electric blanket. I can't spend my days in bed - my mind won't let me do that - so I spend a lot of time just being miserable.

I can't remember what it felt like to be able to move without constant stiffness and pain, and worrying that a little bit of shopping will kill me for a few days. I don't go out any more, just go to work and that's it.

I never admit this to anyone. The only person that knows is my husband. Everyone else thinks I'm fine; that's what I want them to think. The last thing I want is pity or for anyone to feel sorry for me, so I don't tell anyone anything. I keep reminding myself that it could be worse....ALS or something. At least I can get out of bed.

Thank you everyone for your responses. It's helpful to know what others are going through and it's reassuring that having a positive ANA doesn't necessarily mean Lupus. Today I'm really achy and my muscles hurt, but last night I thought I was doing a bit better. Argh....this is so frustrating. My appt. with the rheumy isn't until February, but they have me on a cancellation list so there's a chance I could get in sooner. In the meantime, my general doc and hematologist suggest I take ibuprofen 3 times/day with food to see if it helps with the inflammation and discomfort. I've been doing that for about a week, but I'm not noticing much of a difference. Has anyone found that light exercise helps at all? or do you just feel worse afterwards?

My sincerest commiserations to both of you - compassion from another battler, not pity.

Sandi, you do so much for others. Thank you. Sounds like you need some nurturing. I can feel the love and support for you.

Best wishes for a joyous festive season,
Sally

Thank you, Sally.

CCC:

Every day is different, that's for sure. I've found that Naproxen (Aleve) works better than ibuprofen and have a script for 1,000 mg's a day. That's what helps me...I don't know if it will help you. I also take 20 mg's of Prednisone daily, a muscle relaxer, Plaquenil, and Vicodin. I have a TENS unit and every six to eight weeks, I get 11 or 12 steroid injections in my back and neck muscles (Trigger Point Injections). Exercise does not help me at all, in fact, even light exercise causes awful pain and stiffness for days. You could try exercise and see what happens. It might be beneficial for you. My myalgia has been difficult to manage, and I truly hope that you can get yours under control easier. Some people have a better time managing it. I have to go to a Pain Management Office...my rheumatologist couldn't prescribe the things I needed. I've tried so many different meds over the years but some of the side effects were truly horrific. Lyrica was the worst!


American College of Rheumatology criteria for a lupus diagnosis

The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:

* Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
* Scaly rash, called a discoid rash, which appears as raised, scaly patches
* Sun-related rash, which appears after exposure to sunlight
* Mouth sores, which are usually painless
* Joint pain and swelling that occurs in two or more joints
* Swelling of the linings around the lungs or the heart
* Kidney disease
* A neurological disorder, such as seizures or psychosis
* Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
* Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
* Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

Laboratory tests
Your doctor may order blood and urine tests to determine your diagnosis, including:

* Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
* Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease, but it may be elevated if you have lupus, another inflammatory condition or an infection.
* Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
* Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
* Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies — produced by your immune system — indicates a stimulated immune system, which is common in lupus and other autoimmune diseases. A positive ANA doesn't always mean that you have lupus, however. ANA levels can be elevated if you have an infection or if you're taking certain medications. If you test positive for ANA, your doctor may advise more-specific antibody testing and refer you to a rheumatologist, a doctor who specializes in musculoskeletal and autoimmune disorders such as arthritis or lupus.
* Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs. It may also show an enlarged heart as a result of a buildup of fluid within the pericardium (pericardial effusion).
* Electrocardiogram (ECG). This test measures the pattern of electrical impulses generated in your heart. It can help identify irregular rhythms or damage.
* Syphilis test. A false-positive result on a syphilis test can indicate anti-phospholipid antibodies in your blood, another indication of lupus. The presence of anti-phospholipid antibodies has been associated with an increased risk of blood clots, strokes and recurrent miscarriages.

www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis

Sandi,

I appreciate all the info. I think I might try Aleve tomorrow to see if it works better. Do you take that every 8 hours?

Today I had the day off to do some last minute shopping, but my back, neck, tailbone and shoulders were so painful that I had a hard time driving around and sitting in my car. I couldn't even think straight. I ate something and took 2 ibuprofen and it took the edge off only a little bit. Once I started shopping and moving around I felt a bit better, but sitting in the car was the worst. I've never felt that way before unless I've had an injury.

I ended up calling my chiropractor to see if he could see me. He fit me in at 4pm and determined my neck and hips were out so maybe that was the problem or made my symptoms worse. Now I'm home, but still feel terrible. I might try using the hot tub later to see if that helps. It's so discouraging not to have control of my discomfort. I feel like I've been injured or something, but I haven't.

Thanks for your support!

I take 500 mg's of Naproxen i the morning and 500 in the evening.

Heat always helps me for the moment. Another of my Lupus symptoms is an intolerance to cold weather. As soon as I go outside, I freeze and feel feverish. I'll feel that way all day until I go to bed with the electric blanket. I also get neuropathy in arms and legs during the winter, but thankfully it goes away during the warmer months. I'm a heat freak. I sit next to a space heater at work all day.

Yeah, comfort is a thing of the past, but there are ways to manage it. It can take a long time to find those things.

I also have disk problems (bulges and herniations) in my neck and degenerative disk disease, so that makes everything even worse. Falling apart in my 40's!

It took 2 months to get in, but I finally had my rheumatologist appt yesterday. My symptoms, ITP, positive ANA (1:320) and elevated inflammation (CRP of 6.5) lead them to believe it might be lupus. So they're running all the more specific tests now. They took lots of blood...13 large vials, ugh! It will take them a week to get them all back. I do know my organ function is fine including kidneys. Luckily my family doc ran all those tests before I went to the rheumy.

So, now I'm just waiting until next week. Good news is my rheumy is super nice and very knowledgeable. He was very kind and took his time with me which helped put me at ease a bit. I'm supposed to call next Thursday to get the results and if it's Lupus it sounded like he'd plan next steps with me over the phone. My next f/u will be in 3 months regardless of the results.

It's been super cold here in the Northeast and my hands/feet have been bothering me more. I noticed they're more susceptible to the cold, but they're not changing color (white/blue) so I'm not sure what that means. And I'm so tired too....like my usual fatigue from my busy life has doubled. My gut tells me I have lupus, but I should know more next week.

Do you think lupus is a progressive disease? My rheumy said for most people with treatment it isn't, but there is always a chance. I wondered what everyone else's experience has been.

Thanks

All you can do is wait and see what the results are. But remember, good results now do not mean that you will never get a Lupus diagnosis. Symptoms can appear years before blood work shows anything. There is also a good chance you will never be diagnosed...keep hoping!

As far as Lupus being progressive, some consider it to be that way. I don't. I have found that I develop new symptoms as time goes on, but sometimes they resolve. I don't consider it progressive like Alzheimer's or Parkinson's where there is usually a predictable downhill slide. Lupus is weird - things change. A person can develop kidney nephritis or central nervous system involvement at any time. The heart can be involved, the skin, the lungs, anything. You just have to be vigilant and stay on top of things all the time. I've had times where my labs were horrible and I developed some scary symptoms, but things can also get better with the right treatment. You never know what to expect.

Be sure and let me know how things come out.

I've been waiting on the results of my tests and I just got a call from my rheumy's office, not the doc, saying my ANA was still "pretty positive" but the rest of the tests were negative. The doc wants to put me on 10mg prednisone to help with my aches and pains. So I asked, does this mean he doesn't think I have lupus? She didn't know. I asked what the ANA result was. She didn't know. Everything was very vague and it sounded like I was talking with a receptionist not a nurse. I am so confused. I asked her to find out more information because I'd prefer not be on a steroid if I don't have to. If there isn't a diagnoses what is he treating anyway? Ugh...I can tell this is going to be a long road. It's taken 5 years of ITP before I had symptoms. Am I looking at years of fatigue and discomfort before I know what's going on with me? It's so scary...

This week I had 2 really bad days where I could hardly function. I've never had this kind of extreme fatigue after sleeping a full 8 hours at night. After 2 days, the fatigue let up and then I'm back to "my normal" of aching joints, muscle pain, numbness/fullness feeling in hands and legs. All my left joints are bothering me...left side of neck, shoulder, knee and ankle. I'm also having extreme sensitivity to cold on my hands/feet. I'm wearing gloves most of the time outside because it's so cold out and that helps. It sounds and feels like Raynauds to me, but I don't have white/blue on my fingertips when it happens. This is all just so frustrating. Now I just wait for a call back to find out more. I'm getting the sense it's going to be a long road....

All I can tell you is that I had symptoms of Lupus two years before I was diagnosed. I had been having blood work and seeing a Rheumatologist, but my blood work was good at first except for the ANA. I spent those two years just managing symptoms and to be honest, I was happy every time I did not get the diagnosis. The day they called and diagnosed me, I felt like my world turned upside down. Lupus can be a scary thing. For me, not having a diagnosis was better than getting one. I didn't want it!

If you have a doctor who is willing to help you manage symptoms, that's great! There are many Rheumatologists who dismiss patients with symptoms because they do not meet the criteria. Those people are left to suffer alone without any help. I was dismissed by one and ended up getting another one who was great.

I have been on Prednisone since my symptoms began (7 years ago) and it helps a lot with pain/inflammation. Without it, I can't move and feel like the Tin Man. I have days where I feel like that anyway, I can't imagine NOT taking it. Fall and winter are always the worst. I take between 5 and 20 mg's a day. I only have problems with it when I go down in dose.

I have days like you are too. The pain and fatigue can be overwhelming. I am having a week where I'm finding it difficult to speak without stumbling over my words...I'm just so tired and brain fogged. I also have very weak muscles on some days and just feel like jello. I come home from work and go to bed for a while. I haven't found anything yet that really makes a difference for the bad days, and I take a lot of medications. There are so many that I've tried over the years and they either didn't work or the side effects were too nasty. Maybe you will hit on the right combination for you. In the meantime, try the Prednisone for a while and see if it helps. It's a fairly low dose. What you are treating is pain and Prednisone is great for inflammation-related pain.

Thank you, Sandi, for your response. It's so nice to hear from someone that's gone through this. No one I know has dealt with anything like this so having this online support community is really helpful.

Did you start on prednisone before you were officially diagnosed? I don't want them to tell me I have lupus either, but the other part of me wonders why I feel this way if I don't. It's kind of frustrating because honestly I want this all to just go away.

What should I expect from 10mg prednisone/day? I know everyone's different but I'm really scared of the side effects. Am I going to have the moon face, trouble sleeping and lots of weight gain? or does that usually happen with higher doses? Also, can you just stay on low dose prednisone forever? Aren't there long term side effects?
Do you take it in the morning and with food? Can you drink alcohol on prednisone? Sorry for so many questions, but I like to be informed so any other tips or experiences would be helpful I'm finding I'm more scared about the side effects and haven't really considered that it might actually make me feel better.

Do you have to worry about your platelets with the prednisone? Mine are usually stable between 60-70K so I've never needed to treatment for that. I know prednisone can boost your platelets which is probably good, but I hate to mess with a good thing. Just curious what your experience has been. As always, thanks for your information and support.

I was on Prednisone for two years before I was diagnosed with Lupus. I had a serum sickness reaction to Rituxan which was treated with Prednisone. I believe the serum sickness triggered Lupus because I started with muscle pain and stiffness and feeling flu-like right after that. Anyway, I found that I couldn't get off of Prednisone no matter how hard I tried. I got down to 10 mg's but any time I tried to go lower, I couldn't function. I tried going down by 1 mg every six weeks and still couldn't do it.

I don't have any side effects on this dose at all. I'm sure there will be long term damage eventually such as osteoporosis, cataracts or glaucoma, but I'm monitored for those frequently. I take it in the morning and have had alcohol with it. I don't drink much any more because I also take Vicodin and that does not mix with alcohol at all. For me, Prednisone is a definite benefit; I never thought I would say that. I used to absolutely HATE it and was one of those people who swore I'd never take it again. Now I love it and am dependent on it. Most people are able to taper successfully, so I wouldn't go into it thinking you will be stuck on it.

I have been in ITP remission since the last Rituxan attempt, so platelets have not been a concern. In fact, things have swung in the opposite direction and the main fear now is clotting, so I take daily aspirin. I have had APS antibodies (can cause clots) which are common in Lupus patients, and also take aspirin to prevent atherosclerosis which is also common in Lupus patients. I actually wish my counts were lower than they are.

I know you are confused and want a reason as to why you feel this way, but some autoimmune disorders take a long time to fully develop enough to diagnose. That can be hard to accept, but is all you have right now. Treating the symptoms is the best way to go.

One tip I have - get copies of your labs. Learn what they mean. That way, you will be able to see what is actually going on. Please don't worry about asking questions - ask all you want. I had questions too when I was going through it and two individuals were there for me 100% all the time....it helped tremendously.

PS - One thing you could do as a preventative - stay out of the sun. If you do go into the sun, use a strong sunscreen with both UVA and UVB protection. NO tanning. Also try to avoid sulfa antibiotics. Both of those (sun and sulfa) can trigger Lupus antibodies.

Sandi, I noticed in previous threads talk of Naproxen... since I was diagnosed with ITP in 2006 I haven't used any ibuprofen or naproxen or recommendation of drs. My platelets are fairly stable at between 110 and 130 with only two drastic drops (as low as 3). I have no diagnosis of Lupus, but have experienced tremendous muscle, soft tissue, tendon and joint pain for a number of years and is worsening in the wrists, forearms, elbow joints and front of shoulder joints. Only one ANA 1:64... all other markers for Lupus negative. Rhemie Dr says I am simply an "achy lady". I use a magnesium gel rub, take 6000 IU of Vit D, omega 3 fish oil, vit B12 and B6 and Tumeric daily to combat pain and inflammation, but there are days (like today) when this is simply not enough. I have been tempted to use ibuprofen or naproxen but feared what it might do to my counts. Is its effect on platelet count minor? If so, I wish I'd known this 5 years ago!!

Angie:

It can be a difficult decision on whether or not to use NSAID's. I wasn't supposed to either, but it was a choice between possible platelet problems and muscle pain. I chose to treat the inflammation. I have been on 1,000 mg's of Naproxen a day for 7 years and it hasn't caused any platelet problems. I wouldn't care if it did. Stopping it makes things worse as far as stiffness and pain. I have many days when nothing helps and it's ridiculous how many meds I take. Just a change in the weather makes it unbearable.

I wouldn't accept the comment about being an 'achy lady". You should continue to be monitored and find a Rheumatologist who will help you manage the pain. I remember how I felt before I was diagnosed with Lupus and I didn't have the labs at that point either, but that didn't make the symptoms any less real. I did have a doctor who had the sense to keep monitoring my labs and prescribe until I did meet the criteria.

Hi I've had ITP since I was a baby, and the growing pains I had turned out to be lupus. I call it my Jeckyll and Hyde disease. I worked full time and went to school full time then my leg collapsed on me and that was that. I am now on disability, but I found a part time job that I can work on from home. I have found when my platlets get low I take a couple of vitamin K tabs and get some relief. I gave up on steroids, and the rest of the drugs. I also found milk of any kind seems to help. Gotta laugh at my friends that say I don't know what it's like to get old with arthritic pain, I laugh and tell them I've lived in an old body for 59 years. I stay active mentally and physically in spite of pain and water walking helps considerably. Hope to hear from others who like me just laugh off a serious disease in place of saddness