Possible Sjogrens?

[Tempestuous]

Hi folks.
Something happened recently thats made me wonder if I perhaps have this sjogrens thats been mentioned on this site, and was wondering if anyone would care to offer any input.

( fyi - my eye issues that brought me to this site originally were mainly RCE, dry eye, EBMD.)

Briefly...
Took a trip to the docs about several red/black lumps that appeared in my toes.
He said they were sores possibly caused by raynauds and ordered blood and urine tests.
He then said that this could be connected to my eyes.

This had me confused. Toes and eyes are pretty far apart after all!

The urine tests came back with high protein count which indicates either urinary tract infection or kidney problems.
However, I have been taking Doxycycline antibiotics for a year for my eyes which is specifically for urinary tract infections which would surely make this unlikely.
The urine has now been sent to another lab for further testing.

I googled Raynauds and the sores imply the secondary form which lists amongst other things sjogrens.
So I googled sjogrens and ... it just seems too neat.. not only does it tie in the dry eyes, kidney problems and sores but it also explains the other problems I've started experiencing over the last 2 years i.e.
- dry skin attributed to suddenly developing eczema
- numb & tingling hands and feet

There is indication that the lungs are also affected, and interestingly enough I've suddenly developed asthma from nowhere in the last 2 years...

So whilst I wait for a week for my results, and am loathe to 'accept' a google diagnosis, I was just wondering if anyone here could offer an opinion on sjogrens and whether or not I've understood the possible associations correctly, or indeed if there are perhaps any other conditions that could link toes with eyes as the doc suggested.

Thanks

[calli66]

I have Sjogren's but I'm not very familiar with the symptoms you described.

There is sometimes peripheral neuropathy (hands and feet tingling) with Sjogren's; I don't know what the dark spots would be though.

The Reynaulds symptoms I know of are mainly having very cold fingers and toes all the time, and they sometimes turn white from the circulation problem. Fairly common with Sjogren's.

Eczema might fit, because it is sometimes caused by an autoimmune condition (psoriasis) which people can have along with Sjogren's (also autoimmune). Dry skin, ditto.

One of the main tests for any auto-immune problem is the ANA, and if that's positive, they'll test you for Sjogren's anti-bodies, which can be negative or positive. Most people are diagnosed with SjS because of the dry eyes and dry mouth, but with some it's the debilitating fatigue, or "funny" blood count, etc. The symptoms vary a lot.

Go to Sjogren's Foundation website and Sjogren's World---good sources of info.

Sjogren's is usually a difficult diagnosis---since it mimics other conditions. Studies have shown that it takes an average of 6 years from first symptoms to getting diagnosis, so definitely keep the possibility in mind and ask your doctor for blood tests.

Calli

[Tempestuous]

Thanks Calli.
I need to learn to be patient and wait for the results to see if these are Raynauds sores, and if so how the doc thought they would be connected to my eyes.
8 days to go...

[Tempestuous]

Just an update.
Test results fluctuated, however I do have 'severe' raynauds. I'm now on 30mg Nifedipine/day.
The doc believes there to be a connection with the eyes so I'm being sent off to a rheumatologist for further tests - including sjogrens.

[Lucy]

Tempestuous--
I know it is hard to wait on diagnosis, plus having the illness and feeling bad.
Don't be too afraid of a Sjogrens diagnosis. This can mostly be contained with meds and although there is alot of fatigue and dryness, it's doable. Good luck with everything. Lucy

[willwork4tears]

I agree with all the advice you've been given. Everyone else pretty much covered everything but the toe sores - so I'll take a stab at that. If the raynauds is severe enough it would restrict circulation to the tissue in your extremities resulting in blood vessel, nerve and tissue damage. This would definitely explain the neuropathy - tingling and numbness due to nerve damage. The black sores could be necrotic (dying) tissue/skin. I'm not sure what tests they would do to confirm that this is Raynauds. Maybe stain the tissue and look at it under a microscope for markers of necrosis or apoptosis (another form of cell death). Did they say what the test was or what they were looking for?

I have seen people with severe raynauds who had scabs and sores on the tips of their fingers.

[willwork4tears]

Oh...forgot to mention. You can develop an infection even while taking an antibiotic "for" that infection. Since you've been taking the doxy so long it's possible you have developed antibiotic resistant bacteria - this could result in the infection. You would probably need an antibiotic from another "class". Doxy is a tetracycline. Fluoroquinolones (antibiotics that end in "floxacin") are excellent choices for UTIs. In the US, Cipro and Levaquin are popular brand names.

[Tempestuous]

Thanks both for the info.
Willwork4tears - your first post is pretty much what the doc said. I was also instructed to watch out for the sores bursting out through the skin, spreading up my legs and becoming gangrenous. Upon hearing that I ensured I was doing everything I could to keep my feet warm!

Fortunately I appear to have caught it in time. Now, after a month and a half, I'm just left with constantly cold, numb and tingly toes and I've started to notice colour changes in the toes.. white... blue/purple... red.

As for your second post... makes sense. The second batch of tests brought that result down to normal. ESR on the other hand was elevated hence, and in conjunction with the above, the referral to the rheumatologist.

Well, it will be interesting to see if there is an underlying reason as to why my health has gone pear shaped in the last few years!

Thanks again.

[calli66]

I heard of one person with Reynaud's who wore the thermal socks that have a battery to power heating wires in them. They don't overheat so it's not dangerous. I've seen them sold in sporting good stores for hunting. They also sell chemical packets that you can put inside gloves for the hands. It's important to keep the warmth and circulation going.

Calli

[willwork4tears]

Tempestuous:

The thermal socks are a good idea - one that I'll have to try! I've had Raynauds for 13 years and have tried a few things along the way.

1) Cayenne Pepper supplements.
--the good: it gives you a warm sensation all over
--the bad: it's terribly hard on your stomach. I would take the pills with food and lots of water and it still gave me severe heartburn. Although it did help me feel warm, it wasn't worth feeling like I had burned a hole in my stomach!

2) L-Arginine supplements.
--the good: L-Arginine is an amino acid and a precursor to Nitric Oxide which is a vasodilator. The vasodilation will increase blood flow and improve circulation.
--the bad: Vasodilation will decrease your blood pressure. Since your vessels are larger and more elastic the blood flows through more easily and there is less resistance or pressure. I have naturally low blood pressure to begin with so the L-Arginine gave me terrible orthostatic hypotension (the low blood pressure that makes you feel like you're going to pass out when you stand up too quickly). I had to discontinue b/c it got so bad I blacked out 1 time.

3) Custom compounded neuropathy cream
--the good: (There are lots of goods!) It's a cream you can rub on your hands and feet as needed. You don't take it systemically, so there are fewer risks for side effects and potentional drug interactions. And bonus - it actually works! The pharmacy that makes my custom cyclosporine eyedrops also makes this cream from OTC ingredients. It was originally developed for diabetic or cancer patients with peripheral neuropathy but the pharmacist discovered it worked well for Raynaud's too.
--the bad: You have to find someone to compound it for you.

Here's the ingredients list:
L-arginine
Diphenydramine (anti-histamine; histamine antagonists have been shown to be effective against neuropathic pain)
Chlorpheniramine (another anti-histamine)
Menthol (anesthetic)
Lidocaine (anesthetic)
Lipoderm cream (the base for all the other ingredient; provides good skin penetration)

I love this stuff. It's the only thing that makes my fingers quit throbbing (I have a little neuropathy, too) and it actually makes them feel warm again. There is enough L-arginine absorbed through the skin to have a vasodilation effect, but not enough to cause a systemic decrease in my blood pressure.

Since all the ingredients are available OTC you don't need a prescription. The pharmacy that makes it for me is in Illinois but can mail anything that isn't a controlled substance. It's kind of expensive, but it's the only thing I've used that actually worked and didn't have horrible side effects. I think it was about $25 for 60 grams. If you want the pharmacy name/number, email me and I will give it to you.

[Tempestuous]

Thanks both.
If I were to spend any time outside, then I think those thermal socks would be ideal. In the mean time I've just been jumping around indoors a lot - unfortunately it looks like I've re-broken my toe this morning doing just that!

@willwork4tears - Thanks for the info. I'm a bit of a chilli fiend so now that I've a medical reason to consume even more of it - even better!

L-arganine - I'll look out for it when I'm next at the shops, and in the mean time take my protein shakes! As my bp is on the high side of normal thats actually a benefit that the nifedipine helps with. The only issue would therefore be of a cumulative effect of meds and supplements.

Custom compounding - I'm based in the UK and its not something we have here, but I appreciate the offer. Additionally one of the medications I'm on apparently doesnt go down well with anti-histamines.

What I have been tempted to try tho' out of curiosity is a product we have called 'deep heat'. Its typically used for muscle sprains and warms the area its rubbed on which is surely what we are after? Although it may just burn like hell though!

Actually, could I ask you if you have ever heard of something? The doctor thinks it may be related to the raynauds but told me to wait to ask the rheumatologist and well... this thread is all about how bad I am at waiting! My fingers do not change colours or get sores like my toes, however one thing I have noticed happening is that after my fingers have been exposed to the cold and then warmed up again one or two of my fingers will swell and burst at one side of the nail. I dont think that would happen to 'normal' people so was just wondering if its connected.

All the best

[willwork4tears]

L-arganine - The only issue would therefore be of a cumulative effect of meds and supplements.--> I would definitely contact your doctor first prior to taking it. Especially since you are taking nifedipine. Nifedipine is a calcium channel blocker which results in vasodilation. So you may want to be very cautious about using them together. Sometimes doctors don't always know all the drug interactions and contraindications (how can they??...there has to be more than a million permutation/combinations) so double check whatever your doctor tells you with an online drug interaction checker. You can find a reliable one sponsored by the US National Institutes of Health here: Medline. You have to create an account but it's simple and fast.

Additionally one of the medications I'm on apparently doesnt go down well with anti-histamines.--> Good call. Blood pressure medications are usually contraindicated with most antihistamines.

What I have been tempted to try tho' out of curiosity is a product we have called 'deep heat'. Its typically used for muscle sprains and warms the area its rubbed on which is surely what we are after? Although it may just burn like hell though!
--> Many of these topical creams contain capsaicin which is the natural compound in chilies that give them their hotness. So it will work very similarly to the cayenne pepper supplements except in topical form.

Actually, could I ask you if you have ever heard of something? The doctor thinks it may be related to the raynauds but told me to wait to ask the rheumatologist and well... this thread is all about how bad I am at waiting! My fingers do not change colours or get sores like my toes, however one thing I have noticed happening is that after my fingers have been exposed to the cold and then warmed up again one or two of my fingers will swell and burst at one side of the nail. I dont think that would happen to 'normal' people so was just wondering if its connected.
--> Well while I certainly agree that this doesn't sound normal, I must admit - you have me stumped here. I have no idea what that could be. Does it happen repeatedly or occasionally? Is it like the skin is separating from the side of the nail? Swelling, tingling, aching, warmth, and/or throbbing in the affected area is common as the blood begins flowing again, but I've never heard of a finger bursting at the side of the nail. I have never experienced this and so...honestly, I don't know.

All the best to you as well! Stay warm!

[Tempestuous]

Apologies for the delay in getting back to you - been having a rough time with the eyes recently.
All sound advice you have offered. My usual port of call for info on medicines is rxlist, but I'll have a look and see what else medline has to offer.

Regarding my fingers...
-Does it happen repeatedly or occasionally?
At least one side of one finger will develop symptoms whenever my hands get cold. I currently have 5 fingers affected over both hands, and only the first was infected briefly. The skin does separate from the side of the nail with a hard, tender lump forming (perhaps whats pulling the skin away from the nail?) which typically takes 2-4 weeks to subside.

Whatever it is, I've lived with it for years and never bothered about it. I was just curious as to whether or not it was related, but it looks like I'll remain in the dark for a little longer.

Thanks again for all your advice.

Take care.

[willwork4tears]

No problem at all. I usually check the posts for a few days to see if any new replies have popped up.

The only thing I can think of to explain your finger is that maybe the poor circulation is affecting the health of your skin/cuticles. If they're becoming dry or cracked or separating from the nail this could create an "entry site" for bacteria. The hard tender lump could be a result of a minor infection. (Which you mentioned the 1 finger had). I would inspect your nails/cuticles/fingertips daily for signs of skin breakdown, cracks, or tears and if you find anything, clean the wound thoroughly with peroxide and cover it with antibiotic ointment and a bandaid.

If it's ever red or hot these are futher signs of infection.

Other than that hypothesis I have no other plausible suggestions. I would definitely mention it to your family physician or rheumatologist. If they don't have an explanation a podiatrist or hand specialist might be helpful.