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Sjogrens Topics => Living With Sjogren's => Topic started by: MAT51 on March 02, 2017, 01:22:33 AM

Title: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 02, 2017, 01:22:33 AM
Has anyone experienced finger tips that itch and tingle, tingle and itch - until one day they loose sensation and become hard, shiny with some swelling, pitting and scarring on the very tips and soreness under and around the nails? Also there are red prune-like steaks/ wrinkles on the pads? I am assuming this is due to my Sjögren's related SFN? I do have Pompholyx/ eczema on one finger so it could be related? It's not life threatening I realise - but I am an artist and rely on my fingers for a living so I really wouldn't want this to progress down into my fingers and hands. These are already tight and achy with mild tendon issues in my knuckles.

Next question of the day - following monthly blood monitoring for Cellcept my Criatinine level is slightly elevated for the first time that I'm aware of - it's 83 (lab range 44-80). One of the things that is niggljng at my mind is the possibility that I may have Polycythaemia. My red blood cell count is usually a little bit raised and my Plasma Viscocity (like a posh version of sed rate) is pretty high much of the time. I have constant tinnitus and other symptoms including hypertension, periods of blurry vision and dizziness etc and I believe this form of cancer can develop very slowly. On the other hand I do have histologically confirmed Sjögren's so I'm hoping this would equally account for my slightly iffy bloods and symptoms. Hopefully the raised Criatinine is a one off and not a sign that CKD is on its way. Reassurance or even words of warning would be much appreciated because I'm on the right drug anyway and this would help me to decide it's worth sticking with the Cellcept.   

Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: Tharrell on March 02, 2017, 07:44:05 AM
Hi Mat. What you describe about your finger tips is exactly what Symptoms I have with my raynauds. Aggravating, not only about how it feels, but it causes me problems unlocking my phone with fingerprint and my ipad has trouble with it as well.
Title: Re: Two things: SFN Fingertip annoyanenougce and raised Criatinine?
Post by: irish on March 02, 2017, 10:07:46 PM
There is another autoimmne disease called Scleroderma that affects the connective tissue and causes hardening of the tissues in a lot of different areas of the body. You should show these fingertips to the doc and ask about the scleroderma. Also ask about the creatinine. Mine gets a little off a lot also and the doc says it is from dehydration. I seem to have more trouble getting enough fluids these past few years. My creatinine goes back and forth so that makes me think the amount of fluid I drink is most likely the culprit. Good luck. Irish
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 03, 2017, 04:20:53 PM
Hi Mat. What you describe about your finger tips is exactly what Symptoms I have with my raynauds. Aggravating, not only about how it feels, but it causes me problems unlocking my phone with fingerprint and my ipad has trouble with it as well.

Thanks Tharrell. Have you ever had a nailfold capilliary test to rule out that you might have Scleroderma? I'm to have this at my next rheumy appointment end of April but I don't think I have this disease because I have only had Raynauds in my fingers properly a couple of times ever. Mainly it affects my toes and heels as part of the small fibre neuropathy - which certainly also affects my hands but without colour changes of Raynauds.
Title: Re: Two things: SFN Fingertip annoyanenougce and raised Criatinine?
Post by: MAT51 on March 03, 2017, 04:39:25 PM
There is another autoimmne disease called Scleroderma that affects the connective tissue and causes hardening of the tissues in a lot of different areas of the body. You should show these fingertips to the doc and ask about the scleroderma. Also ask about the creatinine. Mine gets a little off a lot also and the doc says it is from dehydration. I seem to have more trouble getting enough fluids these past few years. My creatinine goes back and forth so that makes me think the amount of fluid I drink is most likely the culprit. Good luck. Irish

Thanks Irish. Panic over re possible Scleroderma (and yes I'm aware of this disease because I'm going to have a nailfold capilliary test at next rheumy apt and my +ANA is nucleolar) but I don't have Raynauds in my fingers very often - only in my toes. I have decided that it must be Pompholyx/ dyshidrotic eczema. I do have this coming and going on one forefinger and have a long history of severe eczema. My finger tips don't have the itchy bubbles and lesions, but as I do have confirmed Pompholyx on one finger I guess it's manifesting itself on my finger tips in this way. Too much of a coincidence otherwise? 

So we are back to the dehydration thing again!  - I'm sure it comes up in almost all of my symptoms and yet I drink so much water I have to stop for toilet breaks every hour! I did ask here if this is part and parcel of Sjögren's but no one seemed to agree that it was.

I think I recall discussing with you that the main UK arthritis charity, ARUK - has it on their Sjögren's pages that people with often have very thick blood which skews the results of their sed rate etc so these aren't useful in assessing whether Sjögren's is active or not. Not sure about this hypothesis really butmy rheumy buys it. 

To me thick blood suggests equally alarming things to high inflammation levels - strokes, Polycythaemia Vera etc. Surely it can't be good to have thick blood that isn't thinned out using blood thinners etc if most with SS do have this issue as the ARUK page states? Mine seem to be always a bit high along with my RBCs and total protein. So is this all part of Sjögren's I wonder?
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: anita on March 03, 2017, 08:06:42 PM
Are you talking about Creatinine level?  This is a kidney function test and Cellcept use can cause an increase in this level.  Any increase (if in fact you are talking about Creatinine) should be monitored as kidney function is decreased with increase in this level.

The nail fold test will help determine the finger tip problem.  It really seems more related to scleroderma vs SFN.  There are different types of scleroderma.  The limited type (CREST) is more like your symptoms, as it typically only effects fingers/face/etc.  And you have Raynauds in your toes, so this follows that type as well. 

I have never heard of people with SFN having the symptoms (hardening) you describe, but you might post this on the PN board of neurotalk, as many of the members have SFN.

Have you been checked for APS?  I think I've asked before, but can't remember your answer.  It would mean labs for anticardiolipins (aCl)?
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 03, 2017, 11:41:03 PM
Hi Anita. Yes I am talking about Creatinine level or kidney function. It could be a one off because I have been flaring and my PV (Plasma Viscocity) was especially high, RBCs slightly elevated out of range as always. I thought Cellcept was supposed to be good at improving kidney function? Isn't its licenced purpose for use as an anti rejection drug following transplant?
 
It's probably a bit neurotic of me but I'm a bit concerned about this thick blood that my rheumy attributes to Sjögren's. I've asked around and others (apart from you - and I know you also have APS, PsA and have experienced strokes/ TIAs) don't seem to have consistently high inflammation levels as I do? The Cellcept isn't reducing these in the way that Methotrexate, Plaquenil and steroids all did. I'm also worried that the consistently raised levels of RBCs, sometimes WBCs, tinnitus and other symptoms or blurry eyes and high BP might make Polycythaemia a possibility? Hopefully all can be attributed to Sjögren's but I still wonder whether I should be on a blood thinner. I did take Aspirin for a while but it gave me terrible nose bleeds and worsened my already lousy GERD.

Re Scleroderma and finger tip hardening - I only get Raynauds in my toes and have no digital ulcerations? CREST usually involves longstanding and severe Raynauds I believe - but we will see in six weeks time. As I've replied to Irish - I think it's probably dyshidrotic eczema /Pompholyx which I do suffer from already on one finger. Not sure how it's arrived on all my finger tips now as no bubbles or lesions, but hopefully the super glue pitted fingertips will resolve if it's just Pompholyx. The loss of sensation is most unpleasant, as is the feeling under the tips of my nails - not sore but very unpleasant - just as if they have all been dipped in superglue.

Re APS - I was tested 3 ways by the rheumy who said that I didn't have a CTD or Sjögren's and changed RA to Polyarthritus Unspecified in 2015. I have wondered about the results since as my ANA swung clear positive six months later once off steroids and other medications. Could steroids and many courses of antibiotics that year have skewed my APS testing also? Otherwise I suppose I can't have it although many under Dr Hughes have told me that it's possible to be seronegative. But I'm more concerned about the thick blood being associated with Polycythaemia to be honest. But I don't have a ruddy face at least!



Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: anita on March 04, 2017, 06:21:28 AM
Steroids can skew many tests, so I definitely ask for repeat labs not that you are off the steroids.

The main test is aCl (anti-Cardiolipin), but the other 2 tests they typically check are the Lupus Anticoagulant and the Beta-2 Glycoprotein.  But all just simple blood tests.

As for the Polycythaemia, is your RBC level very HIGH or just raised...there is a difference.  What is your hematocrit level?  Those with polycythaemia have extremely high (>55%) hematocrit levels.'

Haven't you seen a hemtologist?  If not, then maybe you should...to evaluate your various labs that are not within normal levels.
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 04, 2017, 06:59:31 AM
Hi Anita. My RBCs are always only slightly raised, sometimes my WBCs are slightly raised too, same with my hematocrit and now my Creatinine. I don't think I have anything really full blown but apparently Polycythaemia can develop very slowly.

Don't know which APS tests he ran but he really thought I had it so and told me he was running all available tests so I'm confident that he was very thorough.

Would all these consistently elevated results be likely down to Sjögren's with possible CREST Di you think?
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: Tharrell on March 04, 2017, 07:36:59 AM
Hi MAT. The scleroderma is actually part of my overlap disease of MCTD. MCTD has overlap symptoms, but no defined markers, of scleroderma, lupus, dermamyositis, polymyositis, ra, raynauds and mine has a side of sjogren's. I do have some visible capillaries and my rheumy always checks my hands among other things. Thankfully I do not have ulcerations on my fingertips.
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 04, 2017, 09:27:03 AM
Oh yes right - I knew you had MCTD but didn't know which combination of diseases this involved for you. Out of interest, is your Sjögren's seropositive or not?

I still feel I have such a hotch potch of symptoms - some of which just don't correspond with Sjögren's such as my fingertips dipped in superglue. I'm not sure that the pitting in my fingertips will still be around when I see the rheumatologist at the end of April. Things keep changing. I've tried to photograph them but they really need to be felt to be acknowledged - my skin is very fair and there is no real discolouration in the pitting - it's just shiny and hard to the touch. I'm spooked by it, as was my husband when he touched my finger tips the other day. He says it feels like the flesh has gone and only this hard fibre glass casing remains.

I can only describe it as being like dry superglue all over my fingertips (and as an artist I've worked often with different types of glue so I say this advisedly!). Does this still sound similar to yours?
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: anita on March 04, 2017, 06:08:55 PM
Honestly Mat, I don't know whether the consistently (but only marginally high) levels for these tests are Sjogren's related with CREST.  Those with Sjogren's usually have problems with lower blood counts, not higher.  But I do know (read) that Polycythaemia presents with significantly higher levels...not just raised levels.

When is your nailfold test?  Will you actually be seeing a rheumy that works with Scleroderma patients for your evaluation...or is this just a tech doing the test and no doctor evaluation??
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 04, 2017, 11:57:14 PM
I'll be seen by a dedicated Scleroderma doctor for the nailfold test and I think/ hope my new rheumy may be there as well - who is apparently very informed about Scleroderma as this hospital has second largest centre in U.K.

I just wonder though because of the pompholyx that preceded these hard, swollen, pitted digets - could it be dactylitis perhaps as part of PsA? The reason I'm asking is because I posted photos on a Scleroderma FB page and this is what someone, who doesn't know my history, thinks I have. It is only the top digest that are affected though and there are no lesions really although I do get swollen infected cuticles often. It could explain why my skin and tendon pain is worsening despite Cellcept couldn't it?

I'm back on island for a final month now so may have to go and ask my old GP- as no option on seeing dermatologist or rheumatologist sooner than 25th April.
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: anita on March 05, 2017, 06:02:18 AM
Dactylitis is usually the entire digit..."sausage finger" (yes, this is really how they describe it).  And YES, that is a PsA thing (I get them).  But that is not what I thought you were describing.  I thought you were talking about just the finger tips (as in just the very tip were the nail is pitted and only this last part of the finger is hard-skin).

The swelling that occurs with typical dactylitis does not stay permanently swollen.  It goes down, and then another finger may swell down the road.  The hardness also is from the swelling, not the skin hardening.

Maybe I have completely misunderstood what you were saying this whole time.  I thought just the finger tip 'skin' was hard, not the entire finger swollen hard.  If your whole finger is swollen, the yes, it may be PsA dactylitis/sausage finger

Excellent that you will have a full evaluation by a scleroderma doctor.  He will let you know what is going on.  I'm sure he sees lots of patients that have been told they may have scleroderma, only for it to be PsA or something else.  So he likely has seen many different things in his day and will look at your labs and fingers/toes and say, 'Ah, I know exactly what this is..."

Is April 25th your appt for the scleroderma doctor?
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 05, 2017, 06:14:48 AM
You are quite right Anita - as usual! It's the tips only that are hard and pitted. Struggling to type! Having to use left hand which is marginally less unpleasant. I think it has to be CREST but I find it odd that I don't have much of the Raynauds discolouration in my hands. Maybe I'm not noticing as I do wear gloves a lot of the time when out. There has to be a cause - fingertips don't just go hard and pitted like this for no reason. Given my history CREST seems the obvious one but we will see. Yes 25th April - I'll be in meltdown by then eh?! X
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: Tharrell on March 05, 2017, 06:54:01 AM
MAT, my rheumy diagnosed me sjogren's for having positive ss-b and ana. I got the mctd for positive rnp. I get sausage fingers swelling that comes and goes. My raynauds doesn't cause major color changes, but the tips are constantly numb and paining me. I do have some hardening skin on my body that my rheumy told me to watch.
I too had a bad case of pompholix twice on my hands involving both hands at the same time. It affected all of my hands including my palms. When it was done the whole hand started peeling. I had a dermatologist look at them and he didn't know what it was. My rheumy made that diagnosis.
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: Scottietottie on March 05, 2017, 04:49:49 PM
 Hi  :)

Several years ago I had a really bad attack of pompholix. I had blisters all over the palms of both hands and the soles of both feet and it was excruciatingly itchy. The blisters were quite large in some cases and they behaved as blisters do - burst -leaving raw skin underneath. The little ones that dried up then peeled - sometimes down to raw skin.

Since then I have had regular attacks of it but never as bad as that first one. Latterly the blisters have been tiny - in some cases more like roughened skin but the itch is still awful. bigger blisters seem to appear on the feet - but never as many as the first time. It was a GP that diagnosed mine.

Take care - Scottie  :)
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 06, 2017, 10:26:44 AM
Thanks Tharrell and Scottie. I'm reduced to typing with my pinky finger because the sensory discomfort in my fingertips has become so unpleasant - plus tapping of hard skin on iPad screen feels and sounds horrible - like a woodpecker!

I saw one of my former island GPs this morning to see what he thought. He clearly didn't grasp the Sclerodactyly side of CREST/ Scleroderma because he expressed bafflement at what he saw (torch and magnifier). He felt it didn't correspond with Raynauds but I suspect he was thinking of digital ulcers or calcification rather than sclerodactyly i.e hard skin and pitting. He said he had never seen anything like this and was intrigued. Wondered if it might be the manifestation of a viral infection (I've had itching and tingling in fingertips and pomphylix comjng and going for six months now so definitely not!). Otherwise he just couldn't say but suggested that I use Betnovate steroid ointment twice a day on each affected tip for a week and then review. He looked up Cellcept as only has two other patients on this in this area. But again, the tingling and itching started a few months before I began this drug so I knew this was a blind alley.

Personally I think it must be CREST because there's nothing else to explain and I do have telengecstasias over palms and finger pads. But whatever it is it's proving much more disabling than I would have ever imagined. It's sore, itchy, tingly and really uncomfortable and I do hope it relates to Pompholyx/ eczema or a virus and goes away with the betnovate or erupts into pustular lesions as part of a virus. But I'm not holding out much hope i admit.
Title: Re: Two things: SFN Ftcher.ingertip annoyance and raised Criatinine?
Post by: irish on March 06, 2017, 09:21:35 PM
I think you win the prize the past few days for having a symptom that is a hard to diagnose. I hope that you can get the answer to this soon. I know that it is a big concern for you. Thankfully you have a doc who know about this stuff. Take are and let us know what is going on when the time comes. Good luck. Irish
Title: Re: Two things: SFN Fingertip annoyance and raised Criatinine?
Post by: MAT51 on March 07, 2017, 12:41:52 AM
Ha ha thanks Irish!  I'd much prefer to get fingers back to normal over the "interesting" prize - had a dream that they were back to normal and woke up so happy this morning only to find that I've still got the itchy woodpecker tips  :-\