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Sjogrens Topics => Living With Sjogren's => Topic started by: lelole on April 28, 2009, 07:57:26 AM

Title: fingernails coming off?
Post by: lelole on April 28, 2009, 07:57:26 AM

For a while now, 2 of my fingernails on my left hand have been slowly becoming less well attached to my finger, and one is curling upwards.  I am starting to worry I may lose them. 

Does anyone else have this? Is it Sjogren's related? Is there anything I can do to reverse or stop it?


Title: Re: fingernails coming off?
Post by: Scottietottie on April 28, 2009, 08:14:30 AM
Hi Leah  :)

This is one for your doctor or possibly a dermatologist. SjS has never caused me problems with my nails but when my thyroid goes underactive, my nails get very 'flaky' and peel and split. They've never lifted away from my fingers though. I believe one can get yeast infections under nails but its not something I know much about.

I'll be interested to see the answers you get.

Take care - Scottie  :)
Title: Re: fingernails coming off?
Post by: Linda196 on April 28, 2009, 08:30:53 AM
I had this happen once with one nail, which we first thought was fungal infection. After treating for that with no effect, my doctor and manicurist both suggested Vick's Vapour Rub...which I appplied twice a day, and the nail bed gradually grew out again!

My doctor made reference to "Lupus nail", which I had never heard of and couldn't find any data on, but he said it sometimes happened that people with autoimmune disease lost nails, purely an anecdotal (non-documented word of mouth) thing that he'd heard of. I'm tinking that, in my case, what worked was a "shock" of chlorine bleach (for any fungus or other infection) followed by twice daily applications of the menthol containing rub, but I can't swear it would work for anyone else.
Title: Re: fingernails coming off?
Post by: Dolly Dimples on April 28, 2009, 10:50:56 AM
   Leah, I have problems with nails, my hands and nails are just so dry, I go through a tube of hand cream a week.
    Sometimes my nails split downwards  towards the cuticle, then i have to cut them so short, but even when they grow back the split is still int he nail..
                   I am always snagging my nails on everything I touch... Funny, but my toenails are beautiful!   Dolly
Title: Re: fingernails coming off?
Post by: babycakes on April 28, 2009, 11:10:31 AM
hi leah

how weird you have posted a message regarding this as the other day i looked at one of my toenails and the exact same thing is happening with that.  It is thick and discoloured and is coming away from the cuticule.  It also curves to the right and its almost chipped at the corner.  I was concerned about this but wondered if it was a fungal nail infection or something to dowith sjogrens.  I have heard the term lupus nail being connected with autoimmune diseases but i plan on asking the rhuemie about it.  I will try the vaporub too.

Title: Re: fingernails coming off?
Post by: JannaLee on April 28, 2009, 03:31:59 PM
We talked about this about a while back and had several like responses from people about it.

My toe nails also lifted.

The dermatologist biopsy came back negative for fungus.

I did the Vapo Rub thing for a year.  It just got worse.

Finally I cut the nail completely away from the lifted area and down into the quick.  I had less than half of each big toe nail left.  They have just about grown back now and I notice my left one is lifting again!

For no good reason, I think it is related to Reynauds.  Just my amateur logic thinking the reduced circulation has somehow made my toe nails sick.

It seems there is not even one itty bitty speck of me left unchanged from Sjs!

Title: Re: fingernails coming off?
Post by: cinmac on April 28, 2009, 03:37:34 PM
Hi, I lost one fingernail, but I was a gym member at the time and put it down to a fungus.  It just kind of got soft and sluffed off.  However, it has never grown back and it looks pretty funky so I don't know now.  Guess I'll try the Vicks-it can't hurt.

I have heard of lupus nails but couldn't find any description so I don't know exactly what it is.

Title: Re: fingernails coming off?
Post by: dwbreadbaker on April 28, 2009, 05:27:15 PM
This is interesting.  I now have 4 toenails that are thickened, pulling away from the nailbed and just plain funky.  The dermatologist said it was a fungus.  He said that I could take the antifungal meds but they're expensive, could cause liver problems and even if it worked there was a 75% chance of it coming back.  The rheumie said that it was most likely a result of taking the steroid meds to control my asthma/allergy symptoms.

Title: Re: fingernails coming off?
Post by: cinmac on April 28, 2009, 05:40:10 PM
Hi, for those with dry skin, I had a massage that left my skin so soft.  I asked the therapist what lotion she used and she said it was plain old safflower oil from the grocery store, with an herb or two added for scent.  I have tried it-its a lot cheaper than lotion and it works well.  I just rub in about a dime sized amount and either put socks over it (yes on my hands-less constricting than gloves) when I go to bed, or use vinyl gloves over it while I clean during the day.  My skin is much improved. But my fingernail is still funky!
Title: Re: fingernails coming off?
Post by: lelole on April 29, 2009, 12:56:28 PM
Hi, thanks for all of your replies, I guess that maybe it is some kind of fungal nail or something, I will make a docs appt - just didn't want the "what now" look!

Leah xx
Title: Re: fingernails coming off?
Post by: irish on April 29, 2009, 06:03:48 PM
I took care of a rheumatoid arthritis patient years ago when I was working as a nurse. She had those crippled up hands and also the red lumps on the joints and around the nail beds. She had drainage from them plus she was losing her nails slowly.  Part of the autoimmune issues I think.

Just last week I had a big red lump on the side of the middle joint of one finger. It stuck up like a little mountain and was very painful. For some reason I pressed on it and it just sort of depressed. I have no idea what was in it or where it went bit I am still alive.

Those darn fungus come to all of us. I hate it on my toe nails. That Vicks vapor rub is the lates treatment I have heard about and it does work good accord to what I have read.

The best thing we can do is to wear shoes with cotton socks and air our feet and also soak them and dry them well. They love the damp, moist places. I know that my feet sweat terrible now and smell some if I don't watch it. Darn, I hate this!!! Irish ;D
Title: Re: fingernails coming off?
Post by: watoozie on April 29, 2009, 08:05:35 PM
I have Lupus and Sjogrens and my toenail lifted away from the nailbed and the nail on my left little finger did the same.  Only partial and then finally grew out.  Didn't happen again for a long time, but now the nail on the other foot is doing the same thing.  I didn't know anyone else had this problem, my doc just pooh poohed it, like everything else!!
Title: Re: fingernails coming off?
Post by: Net on April 29, 2009, 09:00:57 PM
Had just one bad one I futzed around with fungal otc and tried Vicks. Rheumy said it was probably cuz of my pred, it just wouldn't grow back.In Jan. I went off the pred. and 3 nails went real bad now. Got referred to a Derm, he said Beaus lines and Trach. and Kolynichia and said use 2 1/2 bioting a day and laquer. Thought it was working  but now it seems all it does is cover them til they decide to split and break away from the nail bed. You'd think it would hurt but it almost seems numb. Am having some thyroid bloodwork done from my new Rheumy cuz I asked for a panel and my antibodies are elevated. He is referring me to another Derm cuz he thinks it's fungal, I don't think so though, I think it's either thyroid or sjogren related but...I wish I knew how to fix it so I could pass it along to you.Keep us posted or anyone else that finds an answer.(I use "nail life" and at least it protects the nail while it at least trys to grow)---good luck--Net
Title: Re: fingernails coming off?
Post by: Wynter on April 30, 2009, 01:08:51 PM
I haven't had any nails come off yet. I usually let my nails grow out just a little, then cut them back short. When I cut them they get soar for a couple of days. Also, my cuticles don't look to bad, except the upper cuticle is shriviled. My feet aren't as bad, but I try to wear socks during the day.
Title: Re: fingernails coming off?
Post by: KJ on May 04, 2009, 01:02:02 PM
I am still waiting on my lip biopsy to come back, so I do not know if I have SJS or not, but I am having this issue on some of my toes.  I know that I do not have a fungus because I was on Lamisil for 2 months for a fungal infection on my scalp that I did not have (biopsy came back neg for fungus, but was instructed to finish out the med).  At first I thought it was an ingrown toenail and felt relief when lifting up the side of the nail, then I noticed that it would just keep coming up if I pulled on it (so I stopped).  The skin is like a white, soft yet thick texture under the nail, and is not very sensitive.  Similar to what is going on with spots on my scalp.

You are not alone ;)

Title: Re: fingernails coming off?
Post by: JannaLee on May 04, 2009, 02:39:01 PM

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!

Title: Re: fingernails coming off?
Post by: KJ 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"!
Title: Re: fingernails coming off?
Post by: JannaLee on May 04, 2009, 07:40:28 PM

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!

PS Your dermatologist is a boob.

Title: Re: fingernails coming off?
Post by: KJ 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
Title: Re: fingernails coming off?
Post by: JannaLee on May 05, 2009, 06:00:43 AM

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. (

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. 


Title: Re: fingernails coming off?
Post by: KJ 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.

Title: Re: fingernails coming off?
Post by: lindar 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. 
Title: Re: fingernails coming off?
Post by: Net 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
Title: Re: fingernails coming off?
Post by: JannaLee 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.

Title: Re: fingernails coming off?
Post by: Net 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
Title: Re: fingernails coming off?
Post by: sikalot 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
Title: Re: fingernails coming off?
Post by: Poochie 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

Title: Re: fingernails coming off?
Post by: Net 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