Prune-like finger pads?

[MAT51]

does anyone have slightly wrinkly, withered looking finger tips that always feel really dry and tingly/ itchy despite endless moisturising? They look as if I'm slightly dehydrated but I'm drinking water all the time. I'm being a worry pot because my ANA showed positive for Scleroderma although my diagnosis is of Primary SS. I keep wondering if my chalky dry, cold pins and needles soaked extremities and tingling, tight gums and lips could be this related disease. It would help to know if the prune-like fingers go with SJS too.

[keelton]

i have the exact same thing!  i also tested low positive for RNA polymerase III antibody for scleroderma,  but i dont have enough symptoms for diagnosis.  i have esophageal dysmotility, dry eyes and mouth and muscle and joint pain,  i tested negative for sjogrens,but my symptoms lean towards sjogrens .   i have told numerous rheumatologists about this problem,  fingertips look like i just got out of bathtub but havent, i even showed them photos!  this is john hopkins and NY doctors, they both said they have no idea what it means, but people have mentioned it to them before,   seems like they are missing something!  I dont have documented Raynauds, but have very cold sensitive hands and feet.  i am at a loss as to what i actually have,

[MAT51]

Hi Keelton. Sounds as if we have similar issues but somewhat different bloods. Have you had a lip biopsy? I believe that, if this is positive as mine very much was, that this is definitive for Sjogrens. Other than that my ANA was positive 1:320 with Nucleolar pattern which is indicative of Scleroderma. I googled wrinkled finger tips and diabetes, Lupus and Scleroderma all showed up immediately so it's odd that your rheumatology team at the JH don't know about this as they really are the experts!

[Tharrell]

I have raynauds and mctd overlap. My fingertips do get wrinkly from time to time, but the itching at the tips drive me bonkers! When I can't stand it anymore I use a cream that my rheumatologist had prescribed for my joints. It contains licodine and several anti inflammatories, it seems to help.

[MAT51]

Thanks Tharrell - I will ask next time I see the rheumatologist.

[keelton]

i know it is strange that they have no idea about this,  i have mentioned it to 3 rheumatologists at three different scleroderma clinics, and they had no clue about this!  but when you google it, scleroderma comes up immidiately,  I am scared to get a lip biopsy because all i hear are horror stories about it!  i know i need it though,   and as far as scleroderma , they think my antibody is a false positive , because my ANA by IFA method is negative, and they should match.  but i also found out that i am low in immunoglobulins IGG and IGA, so that adds to more confusion.  antibody testing can be wrong because you may not produce antibodies.  i know i have sjogrens,  there is no way that my extreme dry mouth and eyes are normal. 

[MAT51]

Strangely my mouth and eyes aren't that bad-but according to an article in the British Sjogren's Syndrome Association magazine some people get all the neuro complications long before it manifests as dryness in the mouth and eyes. So I'm guessing it's going to get much worse over time.

My lip biopsy was done by a beginner dentist with an oral consultant watching and directing. It didn't cause any problems in the way that other invasive procedures have for me - and I have sustained no lasting damage from it so I am fortunate. Well worth it for the positive result it yielded in my case.

Mind you I already had so much parasthesia in my gums and lips and terrible throaty cough with trouble swallowing - so I'm troubled by my mouth and throat plus awful salt and vinegar taste all the time - but it's all sensory rather than visible/ tangible.

This is why I think of scleroderma often as I know that both connective tissue diseases are very closely related and almost always overlap. I plan to request a nailfold capillary test as this is totally non invasive and pretty definitive of Scleroderma. My finger pads and palms are covered in Telangiectasias too and also my finger and toenails nails have a blue/ white hue with red halos. To me all this signals Scleroderma but hey I'm not a rheumy and I suppose I'm lucky to have a definitive diagnosis of SJS at least. I would like to start treatment sooner rather than later though. But they don't seem in a hurry as I've tried so many already.

Best of luck with your decision over lip biopsy - I know it's hard but in my case it was well worth it.

[anita]

MAT,

I think they will certainly be working you up for scleroderma.  That pattern (nucleolar) is 'common' with scleroderma...but that doesn't mean you have 'positive' scleroderma, based upon that test.  It is also common with Polymyositis.  If I remember correctly this was the first time your ANA came back positive.  Therefore, they will likely repeat it yet again to double check the level and pattern.  Then, of course, there will be more labs for scleroderma...it's all a process.  Sadly, it will all take time and test your patience...lol

I don't know if you have already read...but there can be mouth, teeth gums, etc symptoms with systemic scleroderma.  But then again, the same can be true of Sjogren's patients with neuro involvement.  So it can be from either.

I have thick areas on my fingers and side of feet, but they are thinking mine is more plaque like from the PsA.  On my fingers, they are not on the tips, but instead on the sides of my fingers, next to middle joints (PIP).  I also have times that ALL my fingers and hands start peeling.  I can pull off large pieces of skin like after a bad sunburn (but no sunburn in this case).  Very strange indeed...and no one knows why.  It doesn't happen often (maybe 2-3 times a year).

Don't worry about the dry mouth/eyes getting worse.  You will likely have 'flares' of dryness as your disease process progresses.  Every person is different and they have no way of predicting who will have worsening symptoms and when...it's all guessing.  Your symptoms now aren't typical of what's written in most articles...so don't look at those articles for what's in store for you down the road.  Your treatment will change everything and direct it's course.  So just eliminate these types of worries from your mind and just focus on what symptoms you are dealing with now...that will keep you busy enough...lol  But I know it's hard to not worry about what is ahead for you...we all do it to some extent.  Just keep it at a healthy level and don't let it consume you with worry.

[MAT51]

Thanks Anita. I almost feel quite guilty, having at last received a clear rediagnosis, for doubting it or wondering if there's another one they are missing! It must seem as if I'm never satisfied and wanting to be more interesting than I am? So  resolved to keep schtum to all my medical team about my suspicions. The hospital I attend actually has a Scleoderma specialist and is the second largest centre in the UK for this disease apparently. It would be easy enough to establish if they did a nailfold capilliary test - which they apparently often do on rheumatic patients. The specialist says on a YouTube video that he carries the kit around in his bag and is often called in to consultations for this purpose. http://medicine.dundee.ac.uk/events/2016-06-23t143600/changing-face-scleroderma


My skin used to peel quite similarly to yours, when my eczema started to heal up. And the pompholyx I have just tried to see off with betnovate ointment was up the insides of my fingers and the skin peeled away exactly as you describe as the tiny blisters dried up. Now the focus of the itching and thick skin has shifted to the centre of my palms and all my finger tips and nail surrounds - hard skin on sides of fingers by each nail. It is driving me nuts - especially in the mornings when I wake because, as I'm writing this, my fingers tips can't feel the screen and the tightness in my knuckles won't allow my fingers to grip or clench so can't do much at all with them until the pins and needles and severe stiffness slowly abate.

It's also the intensity of knuckle pain, starting in my little and index fingers overnight, affecting each hand equally, that is getting me down because I can't lift my pillows or duvet without crying out  - plus the little shocks of pins and needles throughout my hands each day, but particularly affecting my finger tips above and around the nails, that is so disturbing. They feel positively electric with invisible current and so tight.

This is a relatively new symptom for me  - or one that's been evolving and matches the sensation in my gums and lips pretty accurately. I'm fairly sure it's the inflammatory process causing tiny nerves to becone entrapped for both mouth and hands. It used to only affect my feet and toes (which used to twitch and vibrate where my morton's neuromas were - leading to hard, thick skin on the top of toes that peels off every few months) so the progression bothers me and the fact it is so bilateral suggests to me it's not a localised nerve entrapment such as carpal tunnel-  but I could be wrong.

I will be explaining it to the neurologist in three weeks time as I think it belongs in her bag. Thanks for your advice not to worry and leave it to the doctors to work out for themselves. I know it could all be part of the Sjogren's that I do have and I'm relieved to know that the eyes and mouth won't necessarily get much worse. I often wonder if my sicca is neuropathic too and my very itchy scalp because there is no sign of dead skin/ dandruff or blepharitis as I used to get constantly as a child, teen and younger adult. But I do use Lacrilube and hyloforte drops and special toothpaste daily so maybe I just have learned to manage these and accept them well over the decades?

Psoriasis is a horrible condition. I have quite a few friends and a cousin with PsA. Our architect really suffers from it badly and all his finger nails are twisted and yellow. He's trying lots of self help/ dietary things before succumbing to his dermatolgist's advice to start Methotrexate.

[katie1111]

Please don't be scared about the lip biopsy.  For most of us it is more annoying than bad.  No matter what the procedure or medication you can always find someone who had a bad reaction.  The "worst" part for me was that the area remained numb for about 6 months.  As for the procedure itself, it reminded me of a trip to the dentist's office - which I do hate.  Hang in there. 

Katie1111

[MAT51]

Katie I'm not sure if this was meant for me because I've had the lip biopsy which yielded a strong positive result fur Sjogren's in my case.

Perhaps you meant to reply to Keelton who was saying that they have heard bad things about this procedure? Mat

[keelton]

Matt.   By the way in order to be sure about scleroderma you need to get scleroderma antibody panel.  There are several of them that. Am be missed.  Centromere.  Sl70 and RNA polymerase are the major but there are even more.  . 
If you have it this will give to some idea as to what to expect with symptoms and coarse of disease

[MAT51]

I'm not entirely sure about this Keeton - I think this test is specific for CREST rather than Systemic Sclerosis? I think the difference is that CREST is usually limited to Raynaud's and skin manifestations whereas systemic Sclero usually involves organs. The nailfold capillary test is the definitive one and is simple and non invasive. If you look at my reply to Anita you can see a video of a lecture given at my local university teaching hospital about it.