Author Topic: fingernails coming off?  (Read 11816 times)

JannaLee

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Re: fingernails coming off?
« Reply #15 on: May 04, 2009, 02:39:01 PM »
Kellie,

I think the scalp thing could be a "Lupus overlap" symptom.  I have it too. 

Both my scalp and nails are negative for fungal and bacterial infection.  And my nail beds are same texture as yours.

Honestly we could be twins!!...except that I am a lot older and probably have 50 pounds on you!

Janna

KJ

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Re: fingernails coming off?
« Reply #16 on: May 04, 2009, 06:52:57 PM »
Thanks Janna,

Do you have "Lupus overlap"?  Honestly I am still waiting for results of a skin biopsy on my scalp.  The first lab said that they see an ulcer of unknown origin.  The biopsy was sent to another "special" lab, and 7 weeks later...

My skin patches just came out of nowhere last November.  At first I thought it was some form of acne because each patch would have a bunch of "tapioca".  I could ex-foliate, and get it all out only to have it come back within a day or two.  The more I messed with it the more it spread.  I first went to the doc because I had an infected back tooth, and thought that it might be related to my skin not healing, and the odd problems with my neck joints.  I was told that it was not related.  After several trips to the doctor (keep in mind that I never saw the same provider twice), 5 types of antibiotics, and fungal meds, it was still not going away.  That is when I went to a wonderful PA who ordered the bloodwork, and referred me to dermatology for a skin biopsy, and gave me hydrocortizone cream for my scalp.  By this time I was really worn down from the mental side of having two big sores on my face for 3 months in a row, so when the dermatologist took one quick look at me and said, "I am not seeing anything unusual", I thought I was nuts.  She told me to keep the sores moist and covered for 3 weeks and come in for a follow up.  She said that she thought I was picking at them, and that that is why they would not heal.  Well, I had scratched, and ex-foliated, so there was some partial truth to that, but when I told her that I knew it was not normal (in a very kind and submissive voice) she said, "The white you are seeing is how the skin repairs itself and you can look it up of you like".  So I said ok, I will keep it covered and see what happends.  3 weeks later, my skin is doing much better (I think more due to using the hydrocortizone than anything), but still far from normal, I go in for the follow up.  She said that I was healing great, but then gave me betamethasonevalerate foam .12%.  The same day I had a follow up with family practice to get the results of my bloodwork.  This pa (not the one who ordered them) told me that everything came back normal, except for ana.  He said that he did not know what to do about it, and since derm said that my skin was healing fine, he would just leave it alone for now. 2 weeks later, I go back in because the sores were still not completely healed, and thankfully saw the pa who had ordered the bloodwork.  He looked at the labs and said that I had an 80% chance of sjs, but then thought it was not because my eyes were not dry.  He did the skin biopsy right then and there, and admitted that the derm noted in my record that I was self inflickting (grrrrr), but that he knew that there was something else at play.  He was so kind, but then had a family emergency and was out for a while.  After more butting heads with the other pa, I was finally sent to internal medicine.  I still have a few spots on my scalp that have not completely healed.  Abnormal scabs form, and eventually slough off, expose tissue, reform and over and over.

Sorry about a very long and detailed post, but I am beginning to feel that the most helpful clues are to be found in the smallest of details.  Do please let me know of any more similarities.  Did anyone address your skin issues?
I should also mention that I began noticing last summer that any cut or burn on my skin took a long time to heal.

I am so glad that you enjoyed my comment about Ted Bundy.  Thanks for being soooo sweet.  I'm off to google "Lupus-overlap"!

JannaLee

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Re: fingernails coming off?
« Reply #17 on: May 04, 2009, 07:40:28 PM »
Kellie,

Now that I've scared the heck out of you, I have to qualify that overlap symptoms do NOT mean you will end up with Lupus.  It's just a term describing the overlap of symptoms from the 3 related rheumatoid diseases. (Lupus, RA, and Scleraderma)

The way my rheumy explained it to me was, ..."it's common to see these diseases morph and yours wants to look a bit like lupus..."  I am hoping to remain a Primary Sjs person, it's just that my form of this disease has presented itself with more of the Lupus features.

Because you had positive ANA you are MORE likely to have Primary Sjogren's like me.

Your rash and toe nail descriptions sound like mine.  I've had the head rash for about 4 years now (waxes and wanes but never goes away) and I've lost a whole lot of hair!  But I'm not anywhere near bald..just a lot thinner.  My eyes and mouth are only very slightly dry and do not cause me any discomfort.

In the end there is no way to know what the disease will do.  Apparently there are jillions of people who live their lives out with mild disease and a relative few who have a hard time of it.  All we can do is take care not to abuse our system/body and continue to seek adequate medical care.

Bravo to you and your tenacious search for answers!
Janna

PS Your dermatologist is a boob.

« Last Edit: May 04, 2009, 07:51:19 PM by JannaLee »

KJ

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Re: fingernails coming off?
« Reply #18 on: May 04, 2009, 09:05:33 PM »
Thanks for clarifying Janna!  Yea, I agree with all of your comments!

I can't believe that your rash sounds like mine.  4 years???  I have found my soul mate! ;D  What has your doctor done to treat it? Is there a name for this rash?
Did you ever have a biopsy on it ?  I have also lost a lot of hair, but being Greek means that you would never know.  Also, how do you know that you do not have a connective tissue disease?  Does your "tapioca" ever have a brownish, black speck in it? 

Now that I know my red nose is not a side effect of lying to doctors, I am wondering if it is related to all of this.  Does your nose get bright red from time to time?

Just to throw this in, I have always been told that I have very soft skin, and I have always had KP.

I can't wait to read your next post.  Have a great night.  Kellie

JannaLee

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Re: fingernails coming off?
« Reply #19 on: May 05, 2009, 06:00:43 AM »
Kellie,

My head rash has never been named and you will find several people here have it too.  They are not posting about it here because they probably don't have fingernail problems and haven't read this thread.  My dermatologist prescribed a slew of things that didn't work and also biopsied it, so I know it's not fungal. That was before I found out I have Sjogren's (was diagnosed a year ago) The rheumatologist acted like it is just part of the disease and I have assumed (maybe in error) there is nothing to do but live with it and take the Plaquenil.

You could google something like 'Lupus scalp or head rash' and pull up some images and information.

Your nose sounds like either Rosacea (which you should get treatment for) or Reynauds.  Oftentimes Reynauds affects the hands, feet and nose/chin.  Does your nose feel cold when it gets red? (Reynauds)  Does it ever sting when it's red? (Rosacea)  Does sunlight trigger the redness? (Rosacea)

You are right, Sjogren's Syndrome commonly brings connective tissue disorders with it and Reynauds is one of them.  I'm probably wrong about this, but I think Sjogren's IS a connective tissue disease???  I am sure it is "Systemic" and that is probably why it presents with lots of other side issues.
http://linkinghub.elsevier.com/retrieve/pii/S0889857X08000835

About the brownish speck in the tapioca; I think that might be a stage in the 'rash cycle.'  Part of the waxing and waning.....I'm not sure. 

Janna



« Last Edit: May 05, 2009, 06:36:18 AM by JannaLee »

KJ

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Re: fingernails coming off?
« Reply #20 on: May 05, 2009, 08:47:05 AM »

Good Morning Janna,

Yes, your are right about the connective tissue issue.  Secondary SJS is when you have another connective tissue disease along with it.

Now I understand about the cross over thing.  Because this skin rash of ours is not listed with the symptoms.  Perhaps we need to change that!  My rash sure puzzled many docs.  I spend many hours searching the web for a picture of my rash, and was unable to find anything.  The pics I found did not show the tapioca.  Like I said before, It was the one PA who ordered the bloodwork.  If not for him I would still be sitting in the dark.

The Luxiq (betamethasone valerate) works well for me, I just don't like to use it much because I am afraid of the side effects.  It is very powerful.

 :)Kel

lindar

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Re: fingernails coming off?
« Reply #21 on: May 05, 2009, 09:01:53 AM »
6 months before I was diagnosed with Sjs, all of my finger nails lifted from the beds.  I finally had to cut them all off.  They were about 1/4" long.  (you can imagine how ugly and embarrassing that was).  A dermatologist tested them for fungus and the test was negative.  They had no explanation for this.  When I finally cut them all off they eventually grew back and I have not had that problem since then.  Perhaps it was autoimmune related.

I also developed a rash about the same time.  It lasted for 4 months.  Doctors said "it wasn't a typical lupus rash".  I finally had the rash biopsied and the mayo clinic results were "caused by a connective tissue disease".  I too looked for pictures of my rash but couldn't find one that was the same.  The rash finally went away and I have not had it since.  I have begun to itch again though when I am exposed to too much sun. 

Net

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Re: fingernails coming off?
« Reply #22 on: May 22, 2009, 12:54:11 PM »
Hi Lelole- Here's an update on my fingernails in case it helps you. Rheumy thought it was fungal so I had a new Derm referal today. Because I had been trying otc fungal treatment she couldn't do a fungal scrape til next month. She thinks it will be negative and that it is an inflammatory response (to maybe Sjogrens I guess). So the plan is if the scrape for fungal is negative she can try a topical steriod that you would inject under the nail (owch.. I'd think) or rubbing vitamin D oil on them. I have cut them down and they do seem better to me or maybe it was the antifungal stuff. I'll keep you posted next month what becomes of the test and what's next. --Net
Sjogrens,Chiari 1 malformation, osteoartritis of feet and hands,chronic sinus inflammation

Meds: plaquinel,etodolac,sertraline,restastis,clortimizale troches, pulmicort,predisone(bursts)

JannaLee

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Re: fingernails coming off?
« Reply #23 on: May 23, 2009, 08:34:04 AM »
I am interested as well.  It would be so nice to know a treatment.  I've been dealing with this for several years.

Janna

Net

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Re: fingernails coming off?
« Reply #24 on: July 01, 2009, 10:07:11 PM »
Hiya lelone and JannaLee and all---Was gonna keep you updated on my fingernails . Well...Took a little advice from one of the replies and I basiically started trimming away the double growth and tips of my nails. And...they are actually improving, slowly tho. They are about 3/4 growth of decent nail now and the 1/4 is basically numb and no nail tho. Was supposed to go back to the Derm last Friday but $$ is awful with no relief in site so I called and cancelled the week before and said I'd reschedule if things flared up again. She had talked of a fungal test and possible injections of steroids under the nail. I kinda have the atttitude,"why mess with a good thing" if they appear to be improving. It does seem like all my nails have really slowed their growth and are all brittle on the tips but at least they are not double growing and soft like before. I've been trying to take plenty of calcium and biotin cuz I've nixed milk out of my diet cuz it appears that really upset my irritable bowel probs. Is jello still good for nails too or is that just old wives tale stuff. Any other supplements any of you recommend. I'll let you know if I end up back at the Derm. Take care all---Net ....P.S....Had thyroid checked again and appears normal even tho my antibodies are elevated and I sure "feel" on the hyper side the last few months. .....Net
Sjogrens,Chiari 1 malformation, osteoartritis of feet and hands,chronic sinus inflammation

Meds: plaquinel,etodolac,sertraline,restastis,clortimizale troches, pulmicort,predisone(bursts)

sikalot

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Re: fingernails coming off?
« Reply #25 on: July 03, 2009, 08:54:29 AM »
this post leaves me in s :ohock. 2 weeks ago m :o :o :oy big toe nail came completely off. i was shocked i have no clue why it was healthy looking i never thought it could be anything other thn my luck. since reading this i  am just curious is this is related

Poochie

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Re: fingernails coming off?
« Reply #26 on: July 03, 2009, 11:24:08 AM »
I know this subject came up a long time ago, but I don't remember the out come of it.  I have had to have 4 toenails removed completely because they folded in half lengthwise.  In doing so, they cut off the blood supply to the toe tissue and had to be removed. 

Other than having 4 naked toes  :D, they don't bother me at all now.  My foot doctor told me the name of this, but I couldn't pronouce it or spell it.  It was about 2 inches long when written out.  My great granddaughter looked at them over Memorial Day and said "Ooooo Me-Me, hurt?".  I had to show her that they didn't hurt.  She was so cute.  ;D

Pooh

Net

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Re: fingernails coming off?
« Reply #27 on: July 27, 2009, 09:29:53 PM »
Hi all, another quick update. My pter and 2nd fingernail have totally grown back now and look normal. My thumbs still have alittle wierd growth on the ends. All nails are growing slowly. I see my Rheumy in two days for a re-ck but I never did go back to the Derm cuz they seemed to finally be getting better.  My flares are shorter lately and I actually stopped eating most dairy and my stomach probs are lots better. Also eating lots of bananas cuz a while back I noticed on my bloodwork my potassium was low. Hopefully my nails continue to thrive, slow but sure.--Net
Sjogrens,Chiari 1 malformation, osteoartritis of feet and hands,chronic sinus inflammation

Meds: plaquinel,etodolac,sertraline,restastis,clortimizale troches, pulmicort,predisone(bursts)