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I am pleased to have found this site as the discussion has reassured me about treatment questions and the possibility of coping with this disease. Isn't that the most apt word DIS Ease. I rarely feel at ease these days. I recognise the similarities in all your posts. The loss of eyebrows and body hair as well as the scalp discomfort and flares if inflammation. It has been reassuring and makes me fell less isolated. My husband says he does not have an issue with it as he is no longer an oil painting himself but he does expect a high level of presentation as we have a busy public life. I have very sympathetic hairdressers and go to the salon twice a week for shampoo and scalp treatment. The best part of this is that I do not have to look at myself in the mirror!!! The morning ritual with the topicals is torture. I can still style over the receding serrations but the clock is ticking after two years and I am holding out for burnout!!!
The most enlightening aspect of the chatline was the posts about the sweating during the flares. I thought it was just me and that I was still in menopause It does make sense though if it is an auto immune disease then it would come in flares and the sweating is a symptom of increased activity.
One issue I do have is the guilt about all the time and money I spend. I have read that the disease seems to be associated with affluence, that poor women seem less affected but perhaps that is because they cannot afford to seek treatment. It also bothers me that the treatment seems to be rather futile. Is it no better than a placebo? I feel pretty rotten and down at the moment.
Replies to This Discussion
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Permalink Reply by Classical Anne in NC mountains on
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Mareea, we reluctantly welcome you to this dis-eased group. You certainly express your thoughts well and it is good to have you to share with. Hope tomorrow is a much brighter day!
Anne
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Permalink Reply by April on
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Welcome Mareea! Sorry you are down, although all of us here know how you feel. It is pretty devastating to hear that the hair loss is scarring and there is no cure whatsoever. Ugh. It seems that there are good days and bad days with this, but I do believe things get easier after the initial shock of the diagnosis. Hope you are having a better day today: )
April
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Thanks April, I do tend to let things overwhelm me if I am not kept busy. The discussion lines on this site have been helpful and have answered a lot of my queries. Even the specialist doctors seem to be at a loss and every case has significant variations. It is not all bad though as I do not miss the whiskers on my top lip.!!!! One query I do have is about fingernais. Am I going mad or has the anti arthritic helped strengthen my nails?
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Permalink Reply by Annie on
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Mareea, I recently noticed that my fingernails aren't quite as fragile and the ridges don't seem quite as noticeable. I don't know exactly know why. I have been taking Plaquenil for almost a year as well as Biotin, vitamins, and herbal supplements, so it would be difficult to pinpoint a reason. In the end the reason doesn't matter. I'll be thankful for any small blessings that come my way.
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About those strengthened fingernails, it's almost certainly the effect of taking Biotin. My husband and I both started Biotin several years ago for thinning hair, and almost immediately were blessed with nearly indestructible nails! Fingers and toes.
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Well there has to be some positives, Is there a significant issue with taking the Plaquenil? My dermo is sendng me off to have my eyes checked. That is a little concerning.
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As I understand it, there's a relatively low risk of optic complications, including Macular Degeneration. I am not taking Plaquenil because I already have MacD. It's important for your optic specialist to view the interior of your eye with his technologically amazing equipment -- not just the visual acuity test, reading from a chart. If you Google Plaquenil and look at the adverse effects, you will see that it is a truly small percentage who experience any vision trouble; but it is a risk, nonetheless. If you are otherwise relatively healthy, and your eye doctor gives you the OK, then it may be worth trying. Good luck!
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