Cream for rosacea helping a litttle with my lupus redness

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cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 7/22/2007 7:23 PM (GMT -7)   
Hi--
I got some cream from the dermatologist for possible rosacea, hoping that my red mask was not lupus mask.  Well, the mask is still there, but there is some improvements so that maybe some of the spidering I'm getting might be preventable, that I might have both rosacea and the lupus redness.  The dermatologist thought I might have both and for a while now I just have been getting dismissed on the red face issue.  So it was worth it to check it out.  It seems like dermatologists are the least of my worries, but had I gone sooner, my diagnoses and treatment may have come sooner and a good one can do a lot of blood work and other testing and really sort out some problems that can get bad.  Hopefully he will be able to give me some confirmation or change my diagnosis one way or the other. 
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 7/23/2007 2:17 AM (GMT -7)   
Marji, its frustrating when doctors don't take the time to diagnose your conditions. I'm happy you seem to have a dermatologist now that's trying to get to the bottom of your problem. Good luck with your diagnosis.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/23/2007 7:43 AM (GMT -7)   
Marji, your dermatologist sounds great. Hopefully his help will get you even closer to a specific diagnosis. I agree with Pat about how frustrating all of this can be, but it sounds like you are finally getting somewhere.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 7/23/2007 10:17 AM (GMT -7)   
Marji: Glad to hear it helps a little. It cleared up my rosacea when I had it, but when my daughter got the butterfly rash the medicine did nothing for her. So, from what you are saying possibly it is both. Suprised your doctor figured that out, that was a good call. Did you get your ANAs retested while you still have the rash? Not that it is always an indicator, it may be more prevelant now. The dermatologist ordered my daughter's ANAs when she had the rash.

Nuts, huh? Waiting around for some better symptom (or more) just in hopes of getting a final diagnosis. I was actually happy to hear I finally had kidney disease just because the doctors said it may not be lupus because my kidneys weren't affected. This whole thing can be absurd some days.

I wish you luck and the best as always - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/24/2007 6:31 PM (GMT -7)   
Thanks Patty, hippi, and kris--
It is weird how this is coming about. My docs always just assumed about my face that I DIDN'T have lupus at first, that it was rosacea or a result of the liver disease and it would go away. Everything wrong with my body and my life was magically going to get better once I took interferon for my supposed liver disease. They never considered any other scenarios, so they gave me an immune booster when I had autoimmune disease and was in full flare already. OOOPPPSSS!!!! Oh well, see what happens when you assume. Well, I guess I do have some roseacea but that the mask is still there actually surprised me a little because they had almost convinced me that because I have no antids-dna antibodies that I didn't have lupus, just sjogrens, though I think my rheumie will be more suspicious now.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 7/25/2007 10:20 AM (GMT -7)   
Hopefully a little more than suspicious this time around. Glad you made it through your most recent OOPPPSS. Yeah, had a few... plan on docs making a few more. Unfortunately, there is so much to assume in this disease. Tell me again how liver disease causes a malar rash. I didn't hear about that one before. My baby girl has both liver issues and malar rash. I don't recall them saying anything other than lupus as the possibility for the rash.

I didn't have the DNA antibodies either. Just 2 high ANAs, IgM and false positve Syph is what I got, but it meets the criteria. Although I don't believe it was the expected outcome. Did they test anything else on you - ANAs, ENAs, Syphillis, Sed Rate, Rh, Complements, etc. My original nightmare doctor did that to me. Tested only the DNA version. Granted it does run in my family and makes sense it would be in the DNA. However, it was not. Further testing revealed a much different story. Had they known that prior to the dementia, pericarditis, blood clots and hashimotos that I managed to go through in between the tests, I would have been happier though. ooppss.

Girlfriend, it sounds like Lupus CNS to me. Not that I am an expert. We need to find a specialist in these odd forms of Lupus/Connective Tissue diseases. By the way have you looked up CADASIL? They have a foundation and chat line. Not that it has to do with us, but it is an interesting forum I came across when I was trying to figure out why I had dementia. It may be of interest. They were very nice and it is very similar to diffuse brain atrophy if I recall correctly. DBA is a rare diagnosis I think and I am sure you have a lot of questions and symptoms that not everyone can relate to. I found it helpful to talk to others who had experienced brain damage. Just a thought. - :) excuse the pun.

Oh, Voltaire, how true..how true. I had a battle and a half with my doctor last week. I'm all of a sudden "healthy as a horse", my kidney and heart problems are because I am "thin skinned, not thick skinned like everyone else" and I don't need Prednisone, I need a shrink. Still have to see the Nephrologist though (urinating blood now). Funny they keep writing down Lupus as my Dx. That is until I asked why I can't be put on Prednisone. Now I'm crazy. So P.O., my head is spinning.

Hope your doctors are able to get it together soon Marji. Your in my prayers - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/25/2007 7:05 PM (GMT -7)   
Hi Kris--
Yeah, it's nuts. I discovered my brain atrophy only after receiving social security and it was in the result of a cat scan I had on my brain during an ER visit two years prior. When I got my disability, the first thing my lawyers did was turn all the records over to me and I have to say that in most cases nearly every doctor lied to me about every test result. The judge in the disability hearing asked me who I was seeing for my heart. Heart? I said. I don't think I have anything wrong with my heart. He just smiled and ruled in my favor. Turns out I had atrophy and other bad labs and stuff. How did any of these docs expect me to get good care when they wouldn't tell me what was wrong? On the brain thing, my primary care doc told me that the diffuse brain atrophy was no big deal, my brain was twenty years older than it should be so at forty I had the brain of a sixty year old. I asked her what caused it and she said lots of things but that they didn't usually see that type of damage in people as young as me. No testing, nothing. My endo thinks its from the hashis, it could be from the hypoxemia I have that they don't know why I have, but may be due to stenosis in my neck or COPD or it could be from the chronic very low temperature of 95 F that I run during sleep and on waking. I run 97 during the day. Or it could be the AI, though I haven't had any myelination problems and I did have a myelogram and nerve conduction studies, which were extremely painful and shouldn't have been. The docs are all puzzled by that but they hurt so bad that I won't let them due it again. I have "increased repetitive potentials" supposedly due to severe chronic pain.

On the red face and liver, one of the signs of cirrhosis is spidering on the face, tiny exposed red blood vessels and red face. This is due to blood backing up in the upper half of the body. It also causes esophageal varices (veins) to swell and burst, gastric reflux, and a swollen upper half of body. I used to think the lupus rash had to be raised, but many say no and now I am having a part of it that is puffed up and looks like a large red flat spot. But it changes so much, getting worse usually, and if my face is puffy all over, its hard to see what I'm pointing out to the docs.

I got some old tests from pain management from my first referral to my first rhuemy (who was a complete idiot incompetent mean nasty horrible person--told me I had nothing at all wrong with me and I was just feeling sorry for my self and lazy, ran no tests--I threatened to report him and later found out from another doctor that he is just a miserable nasty unhappy person who treats other doctors and everyone that way). Anyway, I guess I was having a rough time my ANA was 1:320 speckled and positive reflexive ANA and high absolute count of lymphocytes and hematocrit.

Yeah, isn't it funny how mental illness causes such dramatic physical problems, like my vitiligo and hyperpigment, your heart problems and kidney problems, all kinds of stuff. You know, if we just stopped working ourselves into a hypochondriac tizzy, we could just settle down and be well! NOT!!!!! Once they get you on psych stuff, then its hard to get care. Even my psychiatrist (who was really good) said, most doctors think that mentally ill people can't get physically ill.

I hope you do better too Kristin and make sure you get a second opinion. One shrink told me to downplay my mental issues so that they wouldnt get in the way. When I'm asked why I take a certain medication, I tell them that its due to depression that is a side effect of my other meds. That puts it on them. Maybe they are afraid that the pred, with your hashis will be bad. Because of my endo problems I can't take prednisone in any strong dose, I really really suffer mentally. Other people with hashis and brain problems have had the same issue. I hate taking the pred, I can only handle the lowest dose pack or cortisone or dexamethasone. Have they checked you for hashimotos encephalopathy? I think at one time I had it and that may be were the brain damage came from. Or maybe the AI disease, I don't know much about the neurological except the demyelinating diseases, which I definitely don't have, but I have lots of neuropathy.

Well, sorry so long and take care.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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