View Full Version : Another new one...
10-01-2008, 01:39 PM
I know this is a lot to read, so bear with me. I am 40 year old male that has recently been diagnosed with Lupus or something in the Lupus family. My rheumatologist said it would all be treated the same way so it didn’t much matter what we called it. I was fine until last October and everything went to heck. Frankly I am scared to see what will happen next; my Dr. says I am ‘not the normal lupus case’. Do you have any idea what is going on? When I ask him that question he says, “that is a good question”. Sorry if I am babbling…but I was doing well until I ended up in the hospital with pulmonary embolisms a few months ago. Should I be concerned about my future? Today I hurt so bad I came home early from work. I have had pain in my knuckles and toes but today it hurt so bad in my hips and kness that I couldn't stand it. Thank you for any help you can provide…
Below is a list of things I have had happen in the last 8 months, the last 4 months being the worst. First I started with 1987 because my rheumatologist said this could have started back then:
• Diagnosed with ITP – platelets were 5,000 when admitted to hospital
• Spleenectomy corrected problem – I would not respond to drugs
• Numbness in thighs
• Lower back pain (nerve pain from arachnoiditis from 3 back surgeries)
• Electrical shocks – mainly legs
• Positive ANA test
• Marker for lupus
• Swelling in ankle
• Shocks worsened (couldn’t ride in car) – spread all over my body (legs, arms, hands, trunk)
• Numbness in thighs
• Lower back pain (nerve) worsened
• Shocks worsened (couldn’t ride in car)
• Numbness in thighs
• Lower back pain (nerve) worsened
January – February 2008
• Spinal stimulator implant – helped nerve pain (mid-January)
• Electrical shocks eased up (recovering from surgery- less active)
• Reaction to Cymbalta landed me in the Emergency Room with whole body tremors
• Electrical shocks returned once I became more active
• Shocks in face for first time
• Shocks got so bad I was unable to walk 3 feet without severe pain – I was basically bedridden for a week to 10 days.
• Night sweats
• Had 102-103 fever for 9 days – no cause found (end of April)
• Fever came back after 4 days for 5 days (101-102 degrees) with dry cough (cough lasted 6 weeks)
• Shocks got better but still not good (started tegretol with the lyrica)
• Once every two weeks I wake up with terrible joint pain – every joint in my body hurts – it takes 4 to 6 hours for it to go away
• Night sweats
• Still swollen ankle occasionally – many times no pain is associated with it
• Swollen lymph node above clavicle removed
o Biopsy was non-cancerous but ‘indicative of an autoimmune disorder’
• Shocks improved (started Tegretol)
• Night sweats
• Tired a lot
• Weight loss of 20 pounds in last 8 weeks
• Loss of appetite
• Night sweats
• Hospitalized with several blood clots on both side of lungs (pleurisy set in one week before)
10-01-2008, 03:26 PM
I am wondering if the doctor has put you on Plaquenil for the Lupus as this is one of the main drugs that they treat us with Systemic Lupus. What other medications are you on? The Plaquenil would help with the pain and keep the Lupus from damaging your organs. Are you taking any anti-inflamatory medications for the inflammation the goes along with Lupus? I hope that you keep posting here. There are a lot of great folks that come in here and they have a lot of knowledge. Oh I am also wondering if you have been tested for Ankylosing Spongilitis due to the problems that you are having with your spine. This is an Auto-immune disorder as well. Have they tested you for Peripheral Neuropathy? Post and let us know ok.
10-01-2008, 03:31 PM
Hi Kmmartz..welcoming you with open arms. Hugs.
You have had a rough go of it...
From my research ...Daniel Wallace, M.D.....regarding ITP, approximately 20% of people with ITP do test positive for antinuclear antibody test (ANA) and 20% of those ultimately develop Lupus.
As many as one third of all Lupus deaths due to complications from Lupus arise from blood clotting abnormalities...
There is no written life span, age, years for those with Lupus. Many of us can live a normal life span. Many factors can increase, decrease the years. New treatments, new drugs, managing disease complications alter it, participating in your care, being proactive, educating yourself.
More than 90% of Lupus patients with SLE die from one of the five causes...kidney disease, infections, CNS Lupus, blood clots or cardiovascular complications.
You will read in various books, some say 2 years, 10 years, 20 years depending when diagnosed, access to care and the treatment philosophy of their health care provider and etc...
So don't count yourself out yet as your future as being bleak. Be proactive, seek the care..educate yourself.
Your symptoms, many of us have them from pulmonary embolisms to muddle thinking to MS.
Me..similar symptoms as you... night sweats, swollen, extreme fatigue, constant joint pain and muscle pain from mild to severe. Pleurisy. Fever. Low body temperature too. Neuropathy. The symptom list can go on and on....
American College of Rheumatology (ACR) Criteria for Lupus Diagnose 4 of the 11 have to be met, but note not all at once, at one time. It can be accumulative.
Malar Rash ...Rash over the cheeks
Discoid Rash ....Red raised patches
Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers ...Ulcers in the nose or mouth, usually painless
Arthritis ...Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis ...Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder ....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic Disorder ....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic Disorder.....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antinuclear Antibody ....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Immunologic Disorder ....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
Your doctor is doing right medically by treating your symptoms without a diagnose. What's in a name, eh?
What medications have you been prescribed already for joint pain, sleepless nights, edema?
I hope I have helped. Research, read...it helps to put things into perspective, takes aways the fear..it gives us a feeling of being in control. A good read start is The Lupus Book by Daniel J. Wallace, M.D.
Keep well I pray...hugs.
10-01-2008, 03:42 PM
My Dad is 88 and has had lupus since he was in his late 30's--that's when he was diagnosed anyway. He has had pulmonary embolisms a couple of times over the years. I guess, lupus mainly targeted his lungs. I have lupus also and have had it since my early 30's, maybe even before that according to the Dr. who diagnosed me.
You have come to a really great forum. People on this forum know a lot about the illness and are extremely caring and supportive. I may be wrong, but I think there is a forum for the guys only. Then there are all the other forums you can post on also.
10-01-2008, 03:59 PM
I guess I should have put my name on my post - I am Kevin...and thanks for the info Oluwa! I have been doing all kinds of research but I seem to have a little bit of a whole bunch of things so I don't fit into the typical lupus category. Sometimes I think I am crazy! :)
Kathy - I have never heard of Ankylosing Spongilitis - I will check into this further. I read about it briefly and it sort of sounds like something I may have. I also have some nerves sticking together in my spinal cord at the L3-L4 level and I think the Drs just think that is my pain problem. Today it is very bad...could be the weather change, who knows. We went from 80 last week to down to 41 tonite. Still, I shouldn't hurt THIS bad at 40...what in the world will 80 feel like (provided I live that long).
Thanks again for everyone's help
10-01-2008, 04:11 PM
sorry - I forgot to mention that I am on Methotrexate (18 mgs weekly)and Prednisone (10 mgs a day). I am also on tegretol and lyrica (for nerve pain) and of course folic acid since I am on Methotrexate
10-01-2008, 04:27 PM
Hi there...I am also a newbie to this site...I'm a 40 y.o. gal in RI w/SLE and secondary Fibromyalgia. One of my aunts died at 43 from lupus...another aunt who has lupus is stable, but suffers from very painful rheumatoid arthritis. She finds that Tai Chi has helped her cope with her physical and mental affects. Oddly, my mom did not have lupus...just my aunts. First and Foremost...PLEASE, GET A NEW RHEUMATOLOGIST!!!!!!!!!!!! Obviously, your current doc has no clue, and that sucks! I have a long hx myself, beginning with "connective tissue disease" in 1988. Constant joint pains throughout the years as well as fatigue. Finally, officially diagnosed by a dermatologist that had bipsies done from rashes on the joints of my hands. Unfortunately, not all rheumies have the same knowledge of lupus. Please call around, ask people, and ask questions of your physicians to make sure they know what they're doing. No one knows everything, as lupus is so misunderstood and underestimated. So, please, for your own good, find someone who knows what they're doing. Interestingly enough, I've had back problems for 20yrs myself...even having to get laporoscopic diskectomy for my 2 lowest disks. That was in 1999...I'm still having problems, and think I'm on the verge of a nervous break down with my latest back/hip thing. However...I KNOW my rheumatologist always has my back. She's very smart. I'm being tested for pulmonary hypertension now, even tho my cardiologist says I'm fine. She's a "just-n-case" doc...and I'm very reassured by that. Lupus is so misunderstood...even in the medical community...that you HAVE to find somebody that's actually looking out for you. Sorry...long note...but I had to chime in. Take care-D
Welcome to WHL. My name is Rob. I'm 40 years old too, and I was diagnosed with Systemic Lupus in 2004. There are really no "typical cases" of lupus, and the fact that we are men, makes us even more atypical. According to the lastest research, around 10-15% of the people diagnosed with Systemic Lupus are men.
This whole Lupus thing is an awfully big pill to swallow at first. There are alot of things to think about, and look out for. One thing that you can do right now to help yourself would be to limit you exposure to the sun. Wear a hat, wear sunscreen, put on a longsleeve shirt if possible. Another thing you could do is ask your Dr. or Rheumotologist about starting you on the drug Plaquenil. It's an anti-malarial drug that is commonly used to manage the outbreaks or "flares" as we call them. Flares are when you suddenly feel tired, and have the symptoms that you first associated with the fact that something was "going on" with your body. For me, it's opressive fatigue, a cognitive problem we call "brain fog", and joint pain to the extreme.
Lupus, is hard to deal with, I won't lie to you. But, I deal with it, and I still live a fulfilling life. I've had to make some major changes, like selling my business, and getting SSI disability, but I still have far more reasons to live, than not. Lupus is not a death sentence by any means. There are many people, including many of our members here, who have lived with Lupus for most of their lives, and have managed their illness and have wonderful lives. This is a challenge, but it's by no means, a defeat. It's good to see you here Kevin. I hope to talk to you again.
10-01-2008, 05:41 PM
How can you be crazy when your symptoms are real? HUmmm...we all must be nuts. Not I, nor you!
Rob is right, there are no typical cases of Lupus. We are all unique with our symptoms and prescription regime.
Plaquenil is indeed a great drug for controlling, reducing rashes and joint pain and controlling fatigue. The antimalarial drug blocks UV light from damaging the skin. Unlike steroids it does not lower blood counts. I am assuming he prescribed Methotrexate for your joint pain?
Have you ever been on higher doses of Prednisone? 10 mgs is a low dose, usually used to treat mild Lupus symptoms. Low dose because of blood count?
When I could barely walk or hold a toothbrush Plaquenil was my saving. Without it I wonder where I would be..though bouts of severe pain seep through, usually I can contribute it to over doing it and/or lack of sleep...
Have you ever been on Neurontin for nerve pain? I have had three spine surgeries. Two failed , result sciatica. I no longer choose to dose with neurotin for my neuropathy. As a whole it minds itself...then too I get extreme pain in my buttock and arch of my foot. I consider it apart of my norm.
I have been diagnosed with SLE, Sjogrens Syndrome, Fibromyalgia, Restless Leg Syndrome, GERD, Disk Degenerative Disease, Stenosis to name a few.
So, as you read none of us are a cookie cutter Lupus case because we are unique beings.
10-02-2008, 05:31 AM
Hi again...D ("poopydink") here.
Dear Kevin...YOU'RE NOT CRAZY. Though I understand the feeling completely. You can't help thinking: "I'm only 40...WHAT THE HELL??!!". But rest assured, there IS help out there. Unfortunately, there are lots of different symptoms that may come on in varying degrees. Sometimes you'll feel completely out of control...but it will get better. You'll learn how to cope, I promise. I've been coping for over 20 years myself. I've got Systemic Lupus, Fibromyalgia, Degenerative Disc Disease, Hypertension, Hypothyroidism, "Low Back Syndrome", and possible Pulmonary Hypertension (which scares the hell out of me). For the last 2 months, I've been laid up with Sciatica and Paresthetica Meralgia. FYI:ask your doc about Paresthetica Meralgia. It is caused by compression of your Lateral Femoral Cutaneous Nerve, which originates from your L2,L3 disc space, runs around your front to your pelvic area, then hooks a left (or right) to the front of your thigh. Just a thought, since you mentioned your thigh pain and back stuff. At the beginning, I couldn't walk without crutches. Does it feel better when you sit for a while (worse with walking, standing, and lying down)? Of course, my doc just gave me a cortisone shot in my sacroiliac joint, cuz he's convinced this has to do with my back...what can ya do...:) Anyhoo...just 2 more cents I guess. :) I can't leave without stressing again that you try to find a good Rheumy. You can't settle. Don't accept "it's all treated the same way" and "that's a good question" from your doc...as difficult as it may be. Plus...educate yourself as much as possible (books & internet)...that way, you in turn can educate your family and friends. They can be a great source of strength, but they need to know exactly what's going on. Don't be afraid to ask for help. OH!!! By the way...for anyone out there interested...extreme fatigue has always been a problem for "Loopies" as you well know. Ask your docs if you can try PROVIGIL. It's technically for Narcolepsy, but is also used for extreme daytime fatigue. It's really helped me to not fall asleep at the wheel for the last 5 yrs or so. Kevin:I'm not sure why I zeroed in on your message...I guess it reminded me how I felt when I was first diagnosed...and it scared the hell out of me because of my family history. BUT...you have to know there's good help out there. Okay...hands tired...must stop... :):)
Take care Kevin...
Take care everybody...
10-02-2008, 08:35 AM
I appreciate the information all of you have shared. I was given Methotrexate to ‘slow down’ the lupus. I realize 10 mgs of Predisone is a low dose, I was on 5 mg and he recently upped it to 10. I have a bad reaction to prednisone, I get edgy, grumpy, irritable, tense and about every other bad side effect you can imagine from the stuff; I hate taking it. I was on 80 mgs a day for 5 months back in the late 80’s – I was a mess! :D
Does anyone else have issues with sleep? I was so tired last night I went to bed early and before midnight I was wide awake again. I doubt it’s the prednisone because the last dose I take is about 1:00 p.m. I was awake for over an hour then I woke up every 20 minutes after that. I was so tired and wiped out this morning that I just called my boss and worked from home. Thank the good Lord above that I have a great boss and good insurance or I would be in a world of hurt.
10-02-2008, 09:41 AM
hey Poopydink (nice name by the way) and everyone else - how do you know what to blame on lupus and what to be concerned about? My rheumy seems to want to blame lupus for every thing and I don't think it's the case. What's better yet, is when I have something like whole body shakes/tremors he says he doesn't know what is happening but try taking some more drugs. I told him I want to know why this is happening, not "take two of these and call me in the morning". I don't think we have come very far in the last 500 years in the medical field :D !!
10-03-2008, 04:01 AM
I would like to add my welcome, I've not been on much in the past couple of days as I have company visiting.
There is so much left unexplaind when it comes not only to lupus but as to how the medical field deals with us.
I am 48 yrs old. My mother had lupus, my sister has it as well. I have had many of the markers since I was 19 yrs old. In my case they have not diagnosed as yet. I have had one positive ANA, a boarder line ANA and a couple of negative ANA. My white blood cell count has been consistantly high for over 1 1/2 now.
When are some people the only ones in the family with lupus, while in other familys there are several members? Why suddendly do with flare with sypmtoms or go for years with nothing? There are many questions that it would seem there just aren't any answers too. It's all a mater of finding out things that trigger "you" in to having the lupus flare.
One thing is for certain, there are alot of good people on this site, and has been extreamly helpful to share information with everyone. I have been able to identify common symptons and learn new approaches to deal with them.
I'm glad you found us. :)
10-03-2008, 08:48 AM
Yeah...sleeping has never been one of my strong points. Though I'm not sure why. I've always told people "my body woke me up", and I'm just thankful after 20yrs for the sleep I do get. You mentioned you were on Methotrexate...did your doc just throw you right in to that one, or were you tried on Plaquenil first? Meth is not a pretty drug...As far as I know, it's normally used like a chemotherapy drug for some cancers/leukemias...otherwise, its used for serious rheumatoid arthritis (which can develop in loopy people). But I'm pretty sure it's used as a last resort, when someone's failed on stuff w/less side fx, like Plaquenil. Also, I've read that it can cause tremors.