very itchy skin

Hello wetfish

What causes the peripheral neuropathy ? Do you take anthing for it or just is it just 1 of those things

I'm not sure what causes the peripheral neuropathy but I do know it is fairly common in sjogrens.

One website example is: http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

I take nortriptyline for it, I was on amatriptyline at first but it just meant that I couldn't function at all from the side effects but nortriptyline seems to help a bit but I can only take one tablet as with more I get side effects. There are other medications that can be used. Maybe it's a trip to the doctor to see what they think.

Regards.x

 

Peripheral neuropathy is one of the symptoms of Sjogrens. I get a lot of tingling and altered sensation in my hands and feet. My doctor says it's just one of those things. However, if you insist that it's a problem, I'm sure your rheumatologist would agree to put you on steroids, which might well help. The problem with that is that over time, you'd get a lot of other things happening as a result of the steroids. Bear in mind that doctors - being only human - often prescribe steroids or other potentially dangerous drugs just out of desperation when faced by a patient who constantly complains!

Don't know about the itching, though I've a feeling a lot of people have mentioned it on this site. I don't suffer from generalised itching, except on my arms and legs when getting out of the bath - but that's quite a common condition, and not SS-related. However, I'm currently in a flare-up of RA, and I've noticed that the skin over the affected joints sometimes gets hot and itchy.

THe ENT man put me on Amitryptiline (5mg per night) as I had migraine like pains which were only on left side of face and head (including left eye)....after 4 days i stopped the med. as i was waking up feeling totally spaced out ( I had to ask my husband to remind me what I was diagnosed with..) I was put on Plaqeunil before I had the lip biopsy (I had positive blood tests) however after 6 weeks or so after Plaq my  swellings disappeared and my dry mouth went back to normal and my nose was constantly running (without a cold). I also have a burning tongue (every day and every night) but I also have Barretts Esophagus and GERD. the Rheum mentioned perhaps I had nerve damage (so my burning tongue) and suggested more blood tests...i chickened out about the lip biopsy (had a most painful skin biopsy to diagnose Pityriasis).and unfortunately forgot about the blood tests

​currently I dont live in the UK and we dont have GPs here...have to go to private hospitals and see specialists...and all hospitals dont have all specialties so 3 hospitals have my different records and no coordination between them.

Is the peripheral neuropathy progressive ? If it is not progressive , I can live with prickling skin, scalp, tingling feet and 1 or 2 other places.

I will try Claritin for the itchy skin....thanks Mandy.

​I supposed I went into remission as my saliva returned and my swollen knuckles, wrists returned to normal ( opthamologist said I didnt have dry eyes but had secondary cataract in my left eye) ..I was just fed up with taking 8 different meds for various things including predisolone  (also recently diagnosed with osteoporosis)..some of them 3 times a day...so I stopped everything (except Adcal for osteoporosis) 

Just to clarify something, as I'm a former nurse. You say you stopped everything (which I think is an excellent idea btw!) However, to anyone else out there who's thinking of doing likewise, I'm sure you all understand that if you're on prednisolone or any other cortico-steroid you should tail it off very gradually rather than stopping suddenly. Just wanted to make that clear.

The only exception to this rule is if you're on a short-term burst of steroids. In this case, they won't have knocked out your body's own steroid production so it's safe to stop suddenly.

I'm currently considering going on short-term prednisolone myself. Some days the pain in my arms, back and shoulders from the combination of RA, polymyalgia rheumatica and now (somewhat mysteriously) tendinitis, is really disabling. Anyone else get tendinitis as a symptom of SS? Never heard of that one before.

Anyway, I've rejected NSAIDs. They can cause terrible side-effects, they only mask the pain and not only do they not cure the condition, there's increasing evidence that they further damage the joints. My doctor has therefore suggested short-term prednisolone in an attempt to reduce the inflammation. Although I've never taken it before, I think I'd actually prefer it to NSAIDs. We're going to wait till the latest blood results come back.

Hi Lily,

I currently have tendinitis in my shoulder, had it for months now waiting on Physio appt.  This is to do with the connective tissue disease that goes along with Sjorgrens.  I take a short low dose course of prednisolone when Sjorgrens affects the lungs..

Regards,

Mandy

Thanks Mandy - I learn something new every day! I think I've had it in both upper arms for about three years now, but it's only become unbearable during the current flare-up, and the spread to my shoulders has been fairly recent. At least I won't have to wait long for a physio appointment if that's what my doctor orders, as our NHS works differently.

I'm sorry to hear SS affects your lungs too. I thought it was only scleroderma that did that. As you probably know, that's another of the trilogy of connective tissue auto-immune conditions, the third being lupus. I suppose I shouldn't complain about being in pain, as at least SS has never affected my internal organs.

Hi Lily,

My eyes are the worst at the moment though.  Lungs are fine.  Sharp stabbing pain like someone is sticking a needle in my eye.  Had it checked out thought and eye Dr confirmed that it is the nerve of my eye being exposed to the air that is causing the pain.  Just advised to use more drops.

Regards,

Mandy

That must be awful Mandy. I've only had a few episodes of that stabbing pain, but it was always associated with attacks of conjunctivitis during the period when I was suffering from really dry eyes. My doctor used to prescribe chloramphenicol drops for the infection, and they worked very well.

I rarely get seriously dry eyes these days, apart from a little attack a few months ago. Ditto dry mouth. My mouth often feels uncomfortable, with my lower lip sticking to my gums, and I wake unable to even swallow in the night. But I haven't had problems eating for years now.

I'm always intrigued as to how the symptoms of Sjogrens move around my body. It started out more than 20 years ago with severe dry mouth - split and bleeding at the corners too, so I could barely open my mouth to eat. Then that more or less cleared up and I had 10 years of peripheral neuropathy. Once that subsided, the Reynaud's syndrome kicked in - at age 60 and for the first time in my life. Then came the dry eyes, after which I more or less went into remission for about six years. During this time, I only had occasional assorted symptoms, and even the rheumatoid arthritis - which had started 15 years before the SS, when I was only about 35 - settled down to a few background aches and pains.

Then, just when I was starting to congratulate myself on beating the thing, it comes back in yet another form - polymyalgia and tendinitis this time! This thing is a kind of Hydra, isn't it?

I had a clear colonoscopy..all my blood tests show normal blood counts (maybe slightly low on the red...but nothing to worry about)