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Comment by pauliegirl on March 24, 2018 at 11:59pm

Jules Australia, you betcha and thank you for yours! I’m glad because I think it sounds like your Graham has a mild case also. Yes, pretty much just treating symptoms for these autoimmune diseases. After I figured out I really did have Crest, since the docs I had seen here had pretty much failed, I decided to go to a scleroderma center. Flew out to John’s Hopkins where years ago we had an excellent experience for my son’s rare eye disease surgery. I wish I could say I had a similar experience in the scleroderma clinic! It was pretty bad. The younger female physician who evaluated me wasn’t even sure I had sclero. Omg! Duh! And she seemed pretty bored by my mild symptoms. What a waste of my time and money to go there!

Anyways, all they have seems to be treatments as you say. What I am fascinated by via my own research, as I mentiined in that terribly long post :/ ,  is the whole relationship to gut health/leaky gut. It makes sense to me with all these autoimmune (and other) diseases on the rise. I am 2.5 weeks in on the AIP diet. While I can’t say I have had any changes in the Raynauds (and yep, I have the swollen fingers now also), my FFA inflammation at the top/front of my head is almost gone. Haven’t seen that in nearly a year. Now the Raynauds has been happening for about 34 years, so for it to resolve or reduce quickly would be less likely.   Sure, I’m on a plethora of medicines and supplements, but the scalp quieting just seems to be coinciding with this diet change. I miss lots of food and drink but am learning some great substitutes and eating healthier than I ever have in my life lol. I had listened to this Dr Amy Myers webinar on reversing/halting autoimmune issues and it was encouraging. If you’re interested, I can share what I learn at the functional med Dr appt this week on the scleroderma as well as any thoughts he might have on ffa. 

And PS for those of you who are not taking whatever meds or making whatever diet changes, I completely respect it! I am pretty sure we all feel this way. We are all on this similar journey but yet as individuals doing what is best for ourselves. 

Comment by Jules Australia on March 24, 2018 at 10:48pm

Thanks or your reply Pauliegirl. I'm sorry you have scleroderma to deal with as well as ffa; hopefully it will stay mild for you. Graham (my husband is under care of an opthamologist for regular eye checks) & tolerates Hcq well. He had mild signs of raynauds for a couple yrs (white or blue fingertips & tingling when cold)....has regular eye check with opthamologist. The Doctors seem to offer all same drugs commonly used to treat autoimmunine flammatory diseease,lupus,scleroderma rheumatoid arthritis etc for lpp&ffa, simply because it is inflammatory & suspected immune mediated, even though proper controlled evidence-based studies on the effectiveness of these drugs specifically for treating ffa/lpp patients, seems to be lacking.....!!?

Cold)prior to diag in Nov'15 (but we didn't really know of raynauds back then)...main sympton was swollen hands & espec fingers. He has yearly eye checks with opthamologist.

cold - but had not known of raynauds at that
stage)before his diag Nov/15...his other main sympton was

swollen fingers on both hands for 12 months prior
to diag, and increased raynauds, espec when cold. It seems most of the drugs offered for ffa/lpp are pretty much those used to treat lupus, scleroderma, rheumatoid arthritis (inflammatory diseases)amongst others....not so much from evidence based research,

Comment by ammie on March 24, 2018 at 7:48pm

Thanks, MJ! I appreciate the update. I will be more patient. LOL. 

Comment by pauliegirl on March 24, 2018 at 7:38pm

Jules Australia, I was put on the plaquenil when diagnosed with FFA 1/16. At that time I did not know that I had scleroderma, CREST syndrome,5 though (the “light” version of scleroderma) and actually x30 yrs. [A chicago rheumy did labs in ‘88 after my first ANA (a diagnostic test for multiple autoimmune diseases) was drawn (and way high) due to Raynaud’s; that rheumy came back and said I didn’t have Crest/scleroderma and I was like yayyyy and went on my merry way.  While I was looking at my ANA titer per someone’s request on this blog last August, I re-visited why was my ANA showing I had Crest if I didn’t?? I googled it and went through the list of symptoms and I was like yep, yep, yep and realized I DO have Crest.]

My hairline was stable from diagnosis until 4/17 (about 1.5 yrs) when I started inflammation and more loss at the front/top. During that time of plaquenil when things were quiet I also used topical steroids in various forms on and off, mostly on. I was iron deficient so got on iron and boosted my D3. As far as scleroderma, Raynauds has been my biggest problem and it seems to have gotten worse over the past 2-3 years. The question mark will always be would it have been worse had I not been on Plaquenil? I wish I knew and could tell you. What I will say is that every physician, including ophthalmologists, has said they are not overly concerned with long-term eye issues, as long as a yearly eye exam is done to catch the rare side effects from it. 

Looking very forward to my first functional med Dr visit this week. I will let you know his take on th plaq. I wish all the best for your husband. Scleroderma is another “rare” disease whose little club it stinks to be a part of! 

Comment by Jules Australia on March 24, 2018 at 6:40pm

An article titled Lichen Planopilaris: A therapeutic management review A case Report (jaad 2015) highlights the case of a 40 yr old female with a 20 yr history of lpp & her tortuos journey of treatment regimens; I feel exhausted just reading what she has been through....if the researchers came up with a highly
effective proven drug treatment that actually worked & didn't need to be taken long term I'd be there in the front line....the disorder certainly needs more attention by researchers to find effective solutions; a difficult road for all of us whether we choose 'to treat' or ' not to treat'

need to be taken for rest of my life I'd jump on it...

Comment by Jules Australia on March 24, 2018 at 6:18pm

HBW & Illustr8r, my headspace is in same place, everything you've said is where my thoughts are....the psychological aspect of dealing with this day in day out is hard enough....and I have resisted all treatments. To go from one to the other, the next & so on, finding that it seems to be if it slows down, the
research trials say i's the drug that helped, but
noone really knows for sure...if it's the treatment or
the disorder travelling the path it would have
anyhow!!??....I understand the need for some to try all they can to stop it, but I agree, my mental energy is exhausred enough without taking treatments on offer & continual dissapointment when they don't help the proplem....I have sometimes been in a quandry over whethernto 'take or not' treatments; the whole senario can really do your head in (no pun intended)

Comment by illustr8r on March 24, 2018 at 4:51pm

Well said @HBW I’m where you are. I’m reading this blog and the ladies on the FB group. All the drugs seem like Hail Marys with the hope the patient may be one of the lucky ones that sees some improvement using this drug, or that one or this one. All the while they are enduring bad side effects now and potentially some later in life. I keep reading, “if caught early” drugs can help but this disease is insidious and it has a hold of you years before you notice. Does that qualify as early? I doubt it. I’m happy for those who have had sucess on the drugs. On bad hair days, I question whether I should have taken something but my other heath conditions trigger serious side effects with all the drugs they suggest. I had to be logical and practical. Researchers really need to pin down the how, what and why of FFA. When that is done and understood entirely I’ll take any proven treatment that they know will stop the process. Till then, I’ll keep my hair short and when I can’t hide it any longer then I’ll get a wig. Currently, my widows peak is retreating on the left side. I go to the Derm in April and I want her to evaluate the scaring and pattern of loss. I know I’ve lost a lot all over since I saw her last year, fun times! 

Comment by MJ on March 24, 2018 at 4:42pm

Ammie,  it takes a week or two to get added.  

MJ

Comment by ammie on March 24, 2018 at 4:40pm

Lynn555 it is confusing! My derm told me it is possible for the hair back but I have read on here where other doctors have told their patients the hair does not grow back. May be check with your doc and get his/her assessment on the growth? I would be interested to hear what they say. 

Comment by Lynn555 on March 24, 2018 at 2:40pm

Hi all,

Just a question. I thought with this disease u don't have any hair growing in the follicles anymore. But I have baby hairs all over. Now I'm confused and wondering if this was instead TE? I read that the number 1 way to diagnosis was no hair at all remaining in the pores at all? 

Sooooo confused. 

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