Anyone using Protopic or Elidel and triamcinolone Acetonide--Repigmentation creams

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/10/2007 8:35 AM (GMT -7)   
Hi--
I'm using protopic (which is the active ingredient in rapamune) and this other long name steroid cream to try to repigment my vitiligo.  I was so happy at the thought of getting some pigment back into my white areas which burn so easily and actually get cold and numb sometimes.  The other approach is total depigmentation, which would be fine if I lived in a cave instead of the south.  Has any tried this or had any luck?  Any bad side effects.  I think the ointment is causing some of my headaches.  I still can't go out in the sun and when I woke up this morning and someone had opened the curtains in my bedroom, I was very sick to my stomach.  The sun sensitivity and nausea started before using the ointments but the ointments seem to be making it worse.  Thanks for any help you can give.  I went to a vitiligo site and they don't understand why I can't go out in the sun or under lights.  They just say since I'm sick I should just give up on what I look like, in a nutshell, that's what I got.  I know they didn't mean it that way, but you know.
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
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/11/2007 6:09 AM (GMT -7)   
Hi Marji,

I don't really know what to say about the vitiligo. I'm sorry that you are going through such an ordeal. I don't have any words of wisdom on the topic as I don't know too much about it but I wanted you to know that I'm keeping you in my thoughts. Have you seen the doctor about the sun and nausea yet?

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


http://www.healingwell.com/donate


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/11/2007 6:35 AM (GMT -7)   
No--I've been waking up really sick to my stomach with even one window have covered and sick all day. The thought of going out and driving in this blinding sunlight just seems impossible. I know I need to schedule with him, my urinary symptoms might be getting bad again. The sad thing is that I know that part of my problem is polyendocrine dysfunction and it progresses to Addison's disease. I have the hyperpigmentation of Addisons disease and talked to a young woman with it and she said that she doesn't have extreme symptoms but has it and is being treated and her mother died from it and she said its important to be treated early. I bet if they looked close enough, except for the antibodies to my heart and probably gi, they would find that most of my AI disease involves my endocrine, which is why its so screwy. The problem is that they all compensate for each other, my TSH isn't high because my pituitary doesn't work worth a crap, not because my thyroid is working, because it isn't either. I'm sorry. I'm having problems with the vitiligo cream on top of it and think I'm probably going to have to end up not doing it because I'm getting too sick and they never fix anything, it's like pulling teeth. My AI disease isn't well managed and its not my rheumie's fault, it's the endos, because it's hard for him to put me on pred when I have reactions from 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 6/11/2007 6:52 AM (GMT -7)   
Marji, I'm overwhelmed reading all that you have to try to deal with regarding your health, so I can't imagine how you feel. It must be frustrating for you when one condition affects another which makes treating things harder. It can also be hard to tell if meds are causing a side effect or of it's one of your illnesses.

Like Des, I don't feel like I can be of much help with questions you have about some of your meds, but just know that you are in my thoughts and I am hoping that somewhere along the line your endo can treat some of these conditions successfully. Hang in there and 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 10mg; Neurontin 300mg; 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 6/11/2007 10:33 AM (GMT -7)   

Thanks Hippimom--

I really goofed up putting it on, I was off my synthroid for a thyroid scan and I really had a rough time just all the sudden quitting it.  On top of that my rheumie gave me a double pred shot from h*** and I was really a mental mess.  I could have sworn he said four times a day and I remember asking him two or three times, because I get so thick, my memory so bad.  I even had to recheck by looking at the prescription on the way to the pharmacy and I could have sworn it said qid.  So the most I could handle doing was three times a day with this steroid and twice a day with the immunosuppressant.  Anyhow, luckily I went out on a vit site and they said that seemed like way too much and I got really bad headaches, so I stopped it and am feeling better and called the dermatologist today and they said steroid cream once a day and protopic (rapamune ointment) twice a day. I'm back on synthroid and that is helping the vit more than anything, always had. I think tomorrow or the next day, once I get it all out of my system, I will start again with the right dosage.  i had only used it for two or three days and have stopped for two days already.  I know I probably shouldn't be trying to tackle it and it takes a good hour to get the ointment on, but I'll give it a try since medicare is willing to pay for it.  There is an interesting study on vitiligo being caused by hairdye and also about it being a result of too much hydrogen peroxide in the skin.  I believe both of these are true in some cases.  Mine was triggered by hair dye, bleach, that dropped on my skin and depigmented it. Then without any more dye getting on me that one spot spread.  Soon I was having other autoimmune problems.  My Thyroid Peroxidase antibody is always really high (TPOS) and this maybe has something to do with the peroxide level in the blood.  There is a company in Germany that has put out a product on these lines called PCAT and if I cant take the other ointments, I will try this.  It has virtually no side effects, is a calcium and catalase cream and is used in conjunction with dead sea salt therapy which always seemed to improve my skin when I put them in my bath. 


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


Meph
New Member


Date Joined Apr 2007
Total Posts : 19
   Posted 6/11/2007 2:08 PM (GMT -7)   
Marji,

I use Elidel on a small patch on my face, twice a day. I have had no side effects from it but obviously you are covering much, much larger area of your skin. I am so sorry you are having these problems and I hope you find the right solution soon.

Laura
UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 6/11/2007 2:38 PM (GMT -7)   
I'm using triacinolone acetonide ointment for my hands/rashes and I'm not particularly fond of it. It's a thick ointment and when my rashes are bad it stings like crazy when I put it on. So I don't use it too often.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:

Cellcept 250mg/5 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 7.5mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day

Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.

Rituxan infusions twice every six months


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/11/2007 3:52 PM (GMT -7)   
Thanks Laura, Heidi. You aren't kidding thethe triacinolone acetonide burns. I think once I put it on the right way it will be better. Its hard to put the protopic, which is like vasoline sparingly on a large area. One time a day I mix it with the triacinolone, so that works good, but alone is hard. They need to come with an applicator.
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

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 3:23 PM (GMT -7)
There are a total of 2,736,054 posts in 301,351 threads.
View Active Threads


Who's Online
This forum has 151448 registered members. Please welcome our newest member, Twingirldc.
291 Guest(s), 12 Registered Member(s) are currently online.  Details
NM12, TotesMagotes, Michael_T, mark34, Gear, summer16, Girlie, Twingirldc, brucen36, gilly2, Nomar Lupron 4 Me, lapilot


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer