Positive dermatologist appointment

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/19/2007 9:34 AM (GMT -7)   
Hi-
I had a very positive appointment with the dermatologist.  I told him that my repigmentation is not going well, actually seems to be getting worse, but that I thought that was due to the steroid cream, not the protopic.  He explained that there is often inflammation with new areas of vit that the steroid cream calms so the protopic can work.  Most of my vit is so old that there probably isnt much inflammation left.  The nurse felt I was using too much, be he didn't seem worried since I've been having no ill effects--at first I got headaches from the Protopic, but actually it seems to help my general AI problems, though the steroid cream seems to make me feel worse. 
 
I have to make a decision about total depigmentation by my next appointment if I don't start repigmenting.  I'm afraid of depigmentation, since my depigmented areas are so sensitive to the sun and burn so easily, but as he pointed out, my face is probably all depigmented and with it spreading, I will likely end up that way anyway.  If it makes me lose body hair at the same time, then I'm all for it.  Nothing is worse than having white patches on your legs that look like creeping crud with big old black stubble coming out! LOL At least the hairs gone white in most of the white places, but not all. 
 
Also, he gave me some cream Noritate--which is metronidazole 1% cream like the yeast infection stuff, but for my face where is it red and spidering. He said that if it doesn't get better, its a lupus rash thing, if it does, then I probablyhave roseacea in addition to lupus which is causing the spidering and redness.  He said that just because I have ai disease doesn't mean I can't have roseacea too and it effect the eyes in 50% of people that have it so it might explain my eye pain and maybe I can finally get some relief.  Now why couldn't that genius eye doctor look at my red face and maybe guess I may have roseacea and it might be effecting my eyes? 
 
Well, I'm so glad I went to the dermatologist.  It really helped my self-esteem to work on these problems, though I think the steroid cream was making me a b**** and mean and I"m glad to be off that.  Sorry if any of my posts seemed strident or anything.  I didn't realize what it was doing to me until last night when I was mad at my bf and having very bad thoughts, LOL, like Wiley the Coyote and the Roadrunner.  BEEP BEEP, at least I didn't send away to Acme for the bf destruction kit yet.
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


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 7/19/2007 6:49 PM (GMT -7)   

Hi Marji, I kind of went back a few steps today so my mind isn't functioning too weel. I did want to respond to you though. I have never been to a dermatologist but I can atest to the spider veins!!! So unfortunately you lost me on the pigmentation and depigmentation thing. But I was right there with ya on the acme company and the road runner and coyote! Gee what does that say about the way my mind thinksLOL. I am so glad you got that appt and it helped you get some answers and some possitive reinforcement. We all need that little pat on our back sometimes.

Thanks for sharing it sounds  like you have pretty much decided what you are going to tell your doctor at your next appt. But you know you can always come here and I'm sure others have derm issues that could be more help than i am.

love ya

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 7/19/2007 7:35 PM (GMT -7)   
Thanks, Carol. I know you must be having a time of it on that high dose of pred and being sick and all. Do you remember that one where the coyote fantasizes about the roadrunner on a rotisserie over a fire? You know you're mad when you start thinking of that! I'm having trouble sleeping and watching bad brazilian horror films on IFC, so that tells you my frame of mind. I pray that you dont have a rough time with the pred, and if it does get bad, maybe the narcotics will make it better, they do for me sometimes. I just try to sleep through the worst of it, like you said. Will send good thoughts and prayers and all that your way that you get well and all and get through this rough spot. I don't know how you all do it so well, with such grace.
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


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 7/20/2007 7:19 AM (GMT -7)   
Marji,

sounds like you have a great doctor taking care of you. That is great!! I'm sorry that the vit is spreading. I hope you can come to a decision whether to depigment or not... I can imagine how hard that must be for you. Please know that we are hear for you... and btw, you are still a sweetheart on the steroids :-) (and you too Carol!!)

Take Care


"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/20/2007 8:22 AM (GMT -7)   
Marji,

What you're going through sounds awful, and I know it must be so frustrating for you. It appears that you have a real good dermatologist and I hope he'll be able to help you. Let us know how you're doing.

Pat
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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/20/2007 12:17 PM (GMT -7)   
Thank you. It is a big decision. Depigmentation means constant application of sunscreens and artificial tanning products if you get too pink. It takes me a long time just to put on the stuff I'm using now, and I only apply it to part of my body to try to repigment. I will probably try to see the endo first and see if she can't get my hashis under better control because my antibodies are still very high and maybe the pigment will come back on its own. Many people seem happy depigmented and say it was the best decision they made, others struggle to go back.

I don't know if the face cream is helping, but if it doesn't, maybe I'll finally get a good diagnosis and if it does, great, either way good. You people are such good people, thanks so much for being here.
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


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/22/2007 8:45 AM (GMT -7)   
Marji, I have a question for you about all of this pigmentation stuff. Just in the last few days I've gotten brown pigmentation patches or blotches on different parts of my face. It's mostly on my forehead and one check, but have a few random blotches other places on my face too. I had wondered if it was from being outside more and taking my kids to the pool, but I stay very very covered up and put tons and tons of sunscreen that blocks both kinds of UV rays.

Do you have any idea what might cause this? I know you've gone through a lot with pigmentation, but it's very confusing to me and I don't fully understand it. I've never seen a dermatologist, but it looks like I might need to see one about this. My self esteem was already in the toilet due to my weight gain and now my face has blotches all over it.

I'd love any thoughts you have about this. I hope things are going well for you.

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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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/22/2007 7:10 PM (GMT -7)   
Hi hippi,
I have some patches this summer on my face as well for the first time. Pigmentation problems are usually endocrine related, though they can be triggered by things like hair dyes and perfumes. Mine is around the hairline so I'm wondering if me coloring my hair darker this summer has triggered it, something in the dark dye. Vitiligo is defined as only hypopigmentation, or lack of pigment. Hyperpigmentation is a different problem. Vitiligo is considered to be an autoimmune disease, though it can be brought on by hypothyroidism, and many people who have vitiligo often have hyperpigmentation. Hyperpigmentation on the arms and nipples and lips, I mean very black abnormal pigmentation can be a sign of Addisons disease--which also can be autoimmune--your immune system attacks the adrenals. It takes many years for that disease to develop and become serious. I have mild adrenal dysfunction, my ACTH and cortisol is a little low which happens when you have hashis sometimes and ai disease and all, so I suspect that is why. I imagine that prednisone does a number on the balance of your endocrine system and perhaps the rebounds from prednisone treatments might cause the extra pigmentation. It's always worth getting it looked at if you insurance pays for it because they have benoquin, Plaquinil in a cream form that you can put on it and it will even it out, thats the cream they use for depigmentation. Also, you might want to talk to the doc about how the prednisone or AI might be affecting your endocrine system and check your vitamins and all. Sometimes its a by product of sun sensitivity and possibly porphyria, which Leta knows a lot about. I also think estrogen can cause hyperpigmentation, and so can tinea versicola, a fungus women often get when pregnant. Head and shoulders apply like a lotion to the hyperpigmented area and left on for like 15 minutes and then washed off twice a day and I think lotrimin can clear it up in week or so if you have that. Funny, but many people who have vitiligo had this fungus early in life. I hope this helps and isn't too long. I would try the head and shoulders and lotrimin to see if it clears up and if it doesn't and you can afford it, your insurance will cover it, go the the dermatologist and they can better tell you and get you the right stuff. That over the counter skin bleach is not usually strong enough to work well. It also has quinine in it.
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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/23/2007 7:41 AM (GMT -7)   
Thanks for all of the information Marji. If it doesn't start to fade, I think I'll see about going to a dermatologist. It's just one more thing to have to deal with isn't it. Thanks again.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/23/2007 6:21 PM (GMT -7)   
Yep, for thirteen years I haven't had any additional hyperpigmentation, just what I got when my skin first went haywire, but this year I actually got more for the first time from my hairline to the eyebrows and coming down toward my cheeks. It makes me wonder if all the bombs we let off or something we are doing isn't affecting things somehow, making the sun worse. OUr weather has been a drought that for three years, this year is the worst.
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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