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Old 03-18-2009, 09:39 PM   #1
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Smile Hi I'm New here... Rhupus?

Hello,

i am new to the boards and am wondering if I can find anyone that has shared my symptoms in hopes of a successful treatment plan.

I have been sick for 8 years. It started with chronic fatigue, low grade fever, swollen neck glands, slight sun sensitivity and pain in the small bones of my hands and feet. Two and a half years ago (5.5 years after above symptoms started) other things started in like iritis, sever sun sensitivity (rashes and hives on exposed areas and swollen fingers), dizziness, nausea, tachycardia, chest pain, hair loss, nose and mouth ulcers, horrific headaches and Raynaud's. High CRP was the only abnormality. I started MTX and the CRP went to normal. Now I have high CRP and Low C4, my red blood cells and platelets are dropping but normal. I have also had bone erosion and have symmetrical hand, foot, ankle, wrist, finger involvement, horrible stiffness and synovial thickening. I have had every lab under the sun for communicable disease, fungal, bacterial etc, even spinal puncture. I barely function anymore. I just received a diagnosis of Seronegative RA but can not go into the sun due getting rashes and ulcers on the roof of my mouth, extreme fatigue and vomiting. I am allergic to plaquenil. I have taken NSAIDS, Steroids (60mg daily for 4 months), DMARDs. Now am doing injectable MTX and Enbrel to try to stop bone erosions and restore some functioning.

I am ana negative (always have been) and did not get a doctor to take me seriously until iritis started and my resting heart rate was 144 beats a minute 2 years ago. I saw a lot of them too in many specialties. I was an over achiever, needed to eat more salt, exercise more/less, slow down or the worst...was "absolutely normal". I was beginning to think I was crazy since all the doctors acted like I was 'seeking' attention or making symptoms up etc.

Now that my C4 has been low for the past 4 months (on two different draws) I am wondering if the disease is just starting to manifest in labwork even though I have had bone, cardiac, and CNS involvement for years.

Has anyone had high CRP, Low C4, bone erosion and lupus like symptoms? Talk about posting my "life story" but I know I can not be the only one out there dealing with this. I am wondering if there is a treatment out there or combination that might have helped someone else like me.

Thanks, I look forward to being a member on the boards and learning from others!!!

Jeanie

Last edited by Cyberbrat; 03-18-2009 at 09:50 PM.

 
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Old 03-18-2009, 11:20 PM   #2
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Re: Hi I'm New here... Rhupus?

Cyberbrat, hi. You've had a lot going on! I had a tough time getting answers, mostly, I suspect, because I also stayed ANA-negative. I had fatigue, migraines, elevated sed rate, low WBC, weight & hair loss, periodic irregularities, severe GI problems (over 20 yrs.), urinary problems, anemia, recurrent pain flares (from age 13 onward), ETC. Rashes were the last thing to arrive: annular (targetlike) nonscarring lesions on arms & torso, for years. Lag time between sun & rash eruption shortened as time passed.

After seeing numerous local specialists, I took myself to a teaching hospital rheumatologist. Dx was Ro-lupus, positive for anti-Ro but ANA-negative. It's a very low-odds Dx, 3% to 5% max of lupus, I was told.

My most eye-opening appts. were with a dermatopathologist to whom the rheumie referred me. (That's a dermie who's also a pathologist & thus does his own labwork.) He did my umpteenth deep-punch biopsy, but he added to the usual microscopic work immunofluorescent stain tests, which previous dermies hadn't done. In lupus, these tests light up in a way that can ONLY mean lupus, which is helpful if blood results haven't been "caught", due to timing or due to a prolonged onset. I think the test is also called the lupus band test (LBT), and it can be done on lesional or non-lesional skin.

When you say bone erosion, do you mean the "mouse bites" seen in RA? Or severe bone thinning, as in osteoporosis?

I've read about rhupus, in Dr. Daniel Wallace's hardcover (it's excellent). Another helpful author is Dr. Robert Lahita. Many libraries have both.

Even though your ANA remains negative, did your drs. nevertheless run the full gamut of specific autoantibody tests? Like RF, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, anticardiolipin, etc.? (That's where I believe my local drs. could have done better. They didn't do the additional, more specific tests once they saw my ANA was negative.)

It's late, so I'll stop here & say good night. I hope you post more soon. Best wishes, sincerely, Vee
P.S. What do your rashes look like? Do they itch? Scar? Depigment?

Last edited by VeeJ; 03-18-2009 at 11:21 PM. Reason: added P.S.

 
Old 03-18-2009, 11:50 PM   #3
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Re: Hi I'm New here... Rhupus?

Welp, Hey-low & Howdy Do

In reading your post, I do hope you found relief to get allllll that off your mind & chest. I so wanted to reach in and give you a Big Soft Hug.
I'm New too and found this site by accident and am relieved. In viewing the many posts, I really feel validated as to what I go through on a daily bases. As in finding others expierencing what I go through. Not that I'd want anyone to go through what I do nor what anyone else does.
Knowing full well the few I do share with before I found this site become overwhelmed and really can not relate and only stare at this person standing there whom appears perfectly fine and they don't see the inside pain. Verses seeing someone on crutches and in a cast. I'm not discounting that trama at all, it's only the example of sight verses unseen Chronic Pain.

I've personally found on this site people whom understand the many varieties of Chronic Pain and through this, share ~ Encouragement, Personal Success and Setbacks and Obsticles in an open and respectful way.

It really takes strengthand tenacity to walk forward even though the road blocks & bumps seem to be many and it belongs to those whom walk the walk of constant change ~ via pain.

I look forward to reading of your personal achievements on this road of healing and hope. As we walk the walk one moment at a time.

Best Regards and lots of Soft Hugs

 
Old 03-19-2009, 04:18 AM   #4
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Re: Hi I'm New here... Rhupus?

Cyberbrat, Forgot to ask...

Did you take generic or name-brand Plaquenil? Some people tolerate name-brand but not generic; Dr. Wallace covers this in his hardcover, and I think previous posts here discuss, too.

Are you on OTHER MEDS, say for heart rhythm, BP, or RA? Ironically certain drugs trigger flares in some (not all) people who already have lupus. Dr. Wallace covers drug-induced lupus & drug-induced flares in his hardcover.

I hope others who've had trouble finding meds that help post soon. Best wishes, V.

Last edited by VeeJ; 03-19-2009 at 04:53 AM. Reason: Added

 
Old 03-19-2009, 05:55 PM   #5
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Re: Hi I'm New here... Rhupus?

Hi Vee,

Thanks for the reply! Wow, it sounds like you have had a lot going on too. I wonder if eventually a lupus band test might be a good test for me. My skin gets raised red patches but not scaly. I do not notice pain or itch with it. They do not scar or erupt. It only happens on sun exposed skin. My hands or wrists, face/neck. They happen within minutes and eventually the rashes just disappear. The next day I will have sores in the roof of my mouth, horrid fatigue, nausea and a red area on my cheeks and the bridge of my nose (if I am running errands during the day). I am very upset about never being in the sun, it has become very disruptive to my routine and I miss out on so many activities. I react even when driving so try to practice avoidance as much as possible.

They did very thorough auto antibody tests and will revisit them annually since they were all normal a few months ago.

The exact words the doctor used was "mouse bites" for the bone erosions. It was actually discovered when I went in for a foot surgery consult. At least it explains the severe pain I have in the top of my feet. I have bunions and hammertoes and 'dropped' bones due to the ligaments giving way. Do not know the technical stuff except it really hurts. I have not been well enough for surgery so just deal with that.

Thank you for the book referrals I will see what I can find, this just seems very odd. I am currently seeing two doctors. A GP and a Rheumatologist, the GP I am seeing has Lupus and she was ANA negative for years. She will not make diagnosis she just monitors me due to my work, she is very suspicious of the photosensitivity.

I hope you are feeling well and in remission. I have heard sero negative lupus is very rare but just as damaging.

Thanks again,

Jeanie

Last edited by moderator2; 03-20-2009 at 07:33 AM. Reason: to remove the long quote - please consider using the "Quick Reply" button instead of the "Quote Reply" button

 
Old 03-19-2009, 06:00 PM   #6
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Re: Hi I'm New here... Rhupus?

I think it was generic but I almost died and had to go to the ER so they could stabilize me, I wonder with that reaction if there is a compound in the name brand that would do the same? I will look at Dr. Wallace's book and search the forums. All my doctors want me on it and it was the first drug they tried.

I am on Enbrel and injectable Methotrexate. I have read the biologics can cause lupus like symptoms...I thought great, more of what I already have. We will see. My heart rate is normal when my inflammation is low so I do not take any heart meds.

Thanks again!

Jeanie

Last edited by moderator2; 03-20-2009 at 07:33 AM. Reason: to remove the long quote - please consider using the "Quick Reply" button instead of the "Quote Reply" button

 
Old 03-19-2009, 06:10 PM   #7
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Re: Hi I'm New here... Rhupus?

Thank you for the encouragement and Soft Hugs!!!

I understand what you mean about "but you don't look sick" or "you look so good for being so sick". I always get the "you are too young to be sick" comments. I am not, I am in my 30s just look a little younger than what I am. The past eight months I actually started to look horribly sick. Pale, sunken eyes, swollen joints, just very very ill. It was hard to deal with and people treated me differently or looked at me with what looked like pity. I spent over 7 years looking healthy regardless of what was happening and people have no idea. I learned a valuable lesson myself, things are not always what they seem!

I am looking forward to the message boards. It is comforting to know others are out there that are in similar situations (and no you do not want them to be) but it is nice to know you can relate and not feel so isolated.

I hope that you are doing well and Soft Hugs right back at you!

Take care and thank you,

Jeanie

Last edited by moderator2; 03-20-2009 at 07:33 AM. Reason: to remove the long quote - please consider using the "Quick Reply" button instead of the "Quote Reply" button

 
Old 03-19-2009, 07:01 PM   #8
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Re: Hi I'm New here... Rhupus?

Cyberbrat, Dr. Wallace uses the words "mouse bites" in conjuction with RA, which is why I used those words. His chapter on whether it's lupus or something else, or possibly some mix, came to mind when I read your first post.

Your sun reaction: almost sounds not quite rashlike...? Instead, more sun-driven hivelike? I think there's something called "solar urticaria", a sudden burny, hivelike reaction. I think it can appear on its own, but maybe some meds can promote something akin (but of course I'm not a medical professional, only a patient). Have you looked into whether methotrexate or Enbrel have any sun warnings? Because, if not, you'd have to wonder if the awful reaction is "just you", meaning nothing to do with meds & more to do with your underlying condition(s)...

I surely hear you about sun avoidance: I also hate it! But I was lucky, in that I looked awful but had no pain, scarring, etc. from rashes. Whereas you must feel awful, with the burning, etc. Does sunblock help? (I wear SPF 30+ on face.) Covering up with long sleeves & pants? Wearing hats of tight weave, with meaningful brim?

Anyway, I have my fingers crossed that you can get help that controls your symptoms better. Keep us posted when you can. We're thinking of you. Sending you my best wishes, sincerely, Vee

 
Old 03-19-2009, 08:28 PM   #9
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Re: Hi I'm New here... Rhupus?

Thanks Vee!

The sun sensitivity started years before the medicines but after the other problems started. I have to get that book! I am working with a Rheumatologist but am beginning to think I have overlap disease processes. I will need to get a hat. Thanks again, I look forward to learning from the boards!

Take care,

Jeanie

 
Old 03-19-2009, 08:56 PM   #10
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Re: Hi I'm New here... Rhupus?

Jeanie, likewise my visible SKIN sun sensitivity was the very last thing to appear. I'd had big down's before any skin problems, including multiple hospitalizations. I discovered that skin signs appearing LAST may seem quite unlikely & backwards to US but NOT to a knowledgeable doctor. My last (& current) rheumie wasn't at all surprised by my timeline.

You could test-drive books from the library before you buy. I looked for books I found most helpful before purchasing.

Anyway, glad you found us & hang in there! Bye for now, Vee

 
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