I have lupus & Sjrogens. About a year ago I was diagnosed with pancreatic insufficiency due to Sjrogens by a gastroenterologist.
Trouble is other specialists don't entirely agree.
Ive been pretty much left with my digestive enzyme pills (creon) and told to try and figure it out myself.
eg. Go off the pills for two weeks, see what happens, etc.
Has anybody else out there been diagnosed with this ? And if so, what where your symptoms? (Sorry I know symptoms are gruesome) and how was it diagnosed?
Thanks.
ps. Can anybody suggest a good Generalist specialist or Rhuematologist in Victoria?
I have the where's wally of internal organ inflammation.
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Freckle1000
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Hi, I am in uk so can't help with your Consultants but I also have Sjogrens and pancreatic insufficiency.
Have actually had it for over twenty years and yes you will find the medics often disagree. I was finally diagnosed by an excellent pancreatic surgeon.
I had loose unformed bowel movements that were difficult to flush away, pale stools, and could not keep any weight on. As soon as I went on the Creon I began to keep my weight on and the bowel movements normalised.
After many years my Sjogrens was also causing biliary inflammation and I was given Ursofalk a bile acid to take, that has helped the digestion a lot and I am absorbing better again.
Might be worth asking to try a bile acid, they are pretty harmless so no problem.
Hope you get some relief , it is a long road, we have to work so much of it out ourselves. C x
That information is so helpful. You're symptoms sound similar to mine.
I also wonder whether I've had this problem for many many years, as when I first took the Creon, nearly all of the symptoms attributed to a fibromyalgia diagnosis just disapeared. (Fatique, sleep problems, muscle aches, brain not working well etc.)
The only reason I'm a bit finicky about the whole issue is because Creon has some weird side effects for me that (again doctors can't explain) pressure in the head type problems. Sometimes a bit faint after taking it. (Sedative? But this may actually be my normal nourished mind coming back after so long ?)
Apologies, but
could I be even more intrusive, and ask how your pancreatic surgeon made his diagnosis ?
Also many thanks for the Ursofalk information.
Its so great to hear from someone who's been through this - and that you have very good knowledge about what happened to you.
I hope all you're symptoms are now under control and hope you are well !
I had been ill with mystery inflammatory type illness for years and severe digestive problems. For twenty years was told it was IBS but then they found out my gall bladder was not functioning at all. After they took it out my surgeon wondered why I was not improving and could not tolerate protein at all.
I told him about the weight loss and stools and he guessed it was pancreatic insufficiency. The Creon helped so much and I had no side effects.
I am sorry they upset you a bit. Maybe it is any fillers in them or the casing they are in. Perhaps they could try you on a different type, I believe there are others.
My illness has got worse with the advance of time, I am now 62 , so they now think I have Sjogrens and also a Lupus type thing though my blood Tests apart from ESR have always been normal.
Five years ago they started the Ursofalk which helped wonderfully for two years but in the last three years I have been on steroids. I am given steroid injections, depot Medrol every four months, and top up with oral ones when I need when they wear off.
The steroids do help a lot. They are about to give me a trial of a new drug Mycophenolate soon with the hope I can reduce the steroids.
I reckon I have been ill with this since the age of twenty!!!
I have had years and years of going to different doctors till at last they realised what was going on.
I'm sorry you've not been well and even more sorry you didn't receive an immunological diagnosis 20 years ago. 20 years of ill health and incertainty. It must have been horrific.
I've heard on the lupus posts - some people with less of a stait forward diagnosis go to immunology specialists for answers ?
I was diagnosed with lupus when I was 15. Now I'm 49.
I'm now at the point where I'm wondering whether i might be suffering more from a serious form of sjogrens than lupus.
How are you tolerating the steroids? Ive just come down off 25mg. of prednisolene tabs.
(Made me a bit manic and reved up). This was supplemented by my first try of micophenolate mofetil 1000mg. which I tolerated pretty well. In fact given the state of my kidneys, I would describe micophenolate as a bit of a miracle drug. I really thought I was heading for renal failure, but now they're ticking along pretty well.
I'm now taking a reduced dose of a slightly different drug of the same family. micophenolate sodium (myfortic). If you have any questions about these drugs, just ask !
I hope the micophenolate works as well for you as it did for me.
Wow. They stole your gallbladder too.
Mine was thieved about 15 years ago. I developed - what at the time they thought was a mysterious hepatitis. Thankfully it got better by itself and more thankfully the liver can regenerate.
Now when I show any Dr the medical records from this time they say it was lupus.
I've also had the lining of my stomach damaged by the lupus?
Or whatever I have ?
The pattern of my illness is a bit unusual. It really doesn't fit pure lupus. I don't have any serious arthritis or rash.
Its all giblets.
And yes ! Again thank you ! I will try another form of Creon. I think its probably quite nessesary for me to take it.
ps. I don't know whether this would be relevant to you, but just to complicate things, there is such a thing as 'sero - negative lupus', where the lupus markers don't always show up in blood tests. I'm pretty new to this concept myself, so I don't know whether it might be relevant for you.
eg. When i was having my kidney flare, my blood tests where showing my lupus was not active. It took a biopsy to show what was going on. ?
Hi Cuttysark, I know this is an old thread but after 4 years of escalating problems my theumatologist think I might have Sjogrens. To cut a long story short, after debilitating pancreas pain for the last year, an EUS showed initial signs of chronic pancreatitis, an MRCP showed it had atrophied somewhat in the last year, and the tail of it has virtually disappeared. I was wondering how you're getting on, if you have pancreatic pain and if there were any visible changes or damages to your pancreas? Sorry, that's a lot of questions to ask, I'm just trying ascertain if there could be a link between the SS and pancreas problems. My rheumi says no but the fact that both the panc and SS symptoms have run side by side seems like too much of a coincidence. Any thoughts greatly appreciated. Best wishes C
Thanks for getting on touch. I am still having a lot of trouble from pancreas and bile ducts. My last imaging was an MRCP two years ago.
I cannot tolerate fat at all nor hardly any protein. I am with a new Rheumatologist at Glasgow Royal and am also about to see a new gastro at the pancreatic unit of Glasgow Royal in two weeks time. TheRheumy wants to find out what the gastro thinks about the link with the pancreas.
I have been on a regime of steroid injections plus oral steroid for about four years but the pancreatic aspect of the condition is now worsening with pain and awful digestive problems.
I would imagine that they will do more scans now. At the beginning of all this over ten years ago my gall bladder was not functioning with an extremely low ejection fraction so they took it out. I also had pancreatic insufficiency. The pancreatic surgeons at Glasgow Royal all those years ago did link it with an autoimmune problem but my tests were negative every time . I now have a mildly positive ANA but have got to the stage that I can hardly eat at all.
I had a bad fall down the stairs a few weeks ago and landed heavily with my elbow sticking into my right side. Since then it seems to have worsened everything.
I will let you know how I get on at my appointment in two weeks.
(Just tying to assimilate some bad news at my end)
xoxoxoxoxoxoxoxox
quick ps. I think ??? (I'm not 100 % sure, but a scan during my sisters sphincter of Odi attack is a good part of why she's been told to call an ambulance and get to hospital quickly - so the scan can be done quickly and the specialist can be called to see whats going on. He kind of made an oath of honor to her do so. At the moment she's becoming increasingly unwell again. It might not be long before she's calling that ambulance. (and It doesn't hurt that her daughter in law drives one of them)
Its a horrible aspect of these illness' but a lot of the time - the symptoms have to become very bad before a diagnosis is made.
Very much hoping to contact you with a lot more detail before you go to that way too long awaited appointment !
After all these years I've been informed that I don't have the antibodies for Sjogrens, but the Antibodies I have for SLE Lupus can do 'some' similar things.
I've actually forgotten what I've said here, but I do recall one gastoenterologist saying - when I was having the dry eyes, mouth - and digestive problems that Sjogrens can - dry out the bile duct causing pancreatic insufficiency.
I don't know how the Sjogrens would effect the pancreas - but I know Lupus can definitely attack it big time. If you had SLE Lupus I'd just definitely say 'YES' its your autoimmune system doing it to you.
An ultrasound showed mine was in good nick, but I've been diagnosed with the digestive enzyme insufficiency/on Creon etc. (Long story)
I'm sorry this isn't much help to you - but my advice would definitely be for you to seek several opinion's - especially onther Rheumatologist or two - or three - a Gastroenterologist - and a good General Specialist with multiple degrees.
If you're posting from Australia - and here there are some pathology tests that are more sensitive to auto immune activity than others. (Differences are slight - but it happens)
I might be slow in responding as I'm not 100% healthy at the moment - but if you want more info on pathology and stuff - especially if you're in Victoria - I might be able to help (a little) ?
I was really so interested that you have been taking the Mycophenolate and tolerated it fine.
I have no kidney problems apart from loosing potassium all the time and having to supplement on 6grams a day of the stuff. I also have a badly eroded stomach lining and get liver pain with new drugs.
It is a total pain not being able to take many drugs. The oral steroids are awful for me but I still have to take them when I need. I get 120mg depot Medrol Prednisalone injection every three to four months then it is topped up with small amounts of either Prednisalone or hydrocortisone.
They once gave me dexamethasone after a neck operation to fuse two of my vertebrae.It seems to be the strongest steroid and it was so fantastic but they said it was a one off as too dangerous long term.
I have a good Rheumatologist now and he works closely with a Professor of immunology and they both try to help me.
Until I got to them two years ago, I got no help because of my negative bloods!
They say I have many symptoms of Lupus including neurological things, eye and ear problems. At the moment the are not sure but they say it doesn't matter what it is as I have to be treated anyway or it will cause more damage.
It is so good to be able to chat with forum friends, I will need keep in touch and ask you advice once I begin the Myco in six weeks.
I'd be really pleased if you kept in touch and would be happy to give you advice on the micophenolate as you go along with the drug.
I'm not entirely computer savy yet so if I don't respond the first time, just keep trying.
On my part, just to be obsessive -given you have damage to your stomach lining, do you have to take B12 injections?
B12's absorbed through the stomach lining and if you go without it too long you can develop neurological problems, mostly spinal I think ?
Very much hoping this has been covered for you !
I have neuro problems from the lupus, but I actually believe this last burst of immunosuppresants has actually flushed out some of the long standing immuno muck in my brain. I still have some memory problems, but I think I'm thinking just a tiny bit more quickly and broadly. I'm a lot less moody as well which helps.
It sounds like you're Doctors are really superior and are right when they say the immunosuppresants are the best cure for everything that's going on for you. Some of the symptoms can be so strange and obscure, its near impossible not to worry about other possibilities. Over the years I've learnt all roads eventually lead to lupus/sjogrens. - even when I thought the odds where low and I was certain I was mortally I'll with something else.
Its a pity steroids are such a bugger of a drug. I hope you can hold on and make it through.
(Spookily enough I can relate a bit to unhappy neck vertebrae. I was in a car accident and fractured my C2 a little. Its healed well -calcifications crunch a bit sometimes. Just enough to give me a mild case of the heeby jeebies)
Again, thankyou for your Creon advice ! A few hours ago i took a small dose after not taking it for a week and I'm just begining to feel the positive benefits now. It feels really really good.
Just wanted to add a little about the Creon . What strength are you on?
I was initially was given Creon 40,000 and they gave me a churning upset stomach. They then tried the 25,000 capsules but I took more of them to make up the dose. I had absolutely zero side effects with the smaller ones and have been taking them for almost ten years .
I take two with my small breakfast, banana and two oatcakes, two with any snacks during the day four with lunch and six with my main meal.
I am very intolerant of protein and can't eat meat at all only fish shellfish and turkey as chicken is too fatty. Even high protein vegatables like cauliflower or avocados are impossible.
I don't really eat much at all but am not hungry, despite that I am not under weight at all.I have put on about two stone with menaupause and steroids.
I hate the steroids, although they make you a bit hyper it isn't pleasant is it! You feel wired but tired and restless all the time.
What a coincidence with your neck injury. I damaged mine at the age of seven in a car accident. After all those years the vertebrae had twisted so much they were hitting the spinal cord . The operation was a great success but I have still got quite a few neurological things that they suspected were early MS but my brain scans were clear so now they think it is the Sjogrens most likely.
I do have B12 deficiency too but was allergic to the carrier in the injection so have b12 patches instead which work well.
I so hope I can tolerate the Myco , I think it would help all those weird but worrying symptoms.
So glad we got in touch, is so reassuring to find someone so similar !!
Will let you know how I get on. Will be starting the Myco in a month or so.
Thankyou for sharing how you resolved your drug creon reaction. When I was taking too much I ended up in the ER with excruciating sharp abdominal pain, twice.... I'm only on 10,000, and I divide that in half now.
I tend not to feel the stomach upset in digesting proteins, although protiens do seem to sit in my stomach way way too long and without the medication I just end up producing too much poo. I think at this stage I might be a mild sufferer - although a year ago it was pretty full on.
Yep. High dose steroids are awful. On the high doses, I sometimes flatlined with high anxiety for days, alternating with a bit of bi-polar type ups and downs,.... - while simultainiously feeing trapped in a void - emotions becoming less nuanced for want of of better way of putting it. At one stage when I should have been resting my fragile kidneys, I was digging holes at 100 miles per hour outside because of a very bad manic idea. I look at that bad idea now and think - what the hell was I thinking? and how am I going to fix that? I'm meant to be resting !?!
Having said all this, I am renowned for being extremely drug sensitive, and as I've been taking the stuff since the age of 15, (33 years) I believe some bio feedback systems might be a bit mis - aligjned.
On 5mg pednisone tabs now which is theoretically supplementing my switched off ? adrenal system. I feel the mild effects of it for a few hours in the morning, but then get my mind back.
Can I ask you about neurological sjogrens?
I'm seeing a neuropsycholgist to try and figure out what's what in my brain after my last flare.
About 11 years ago
I must admit I was convinced I had MS for a good while, but I was just de-myelinating from undiagnosed B12 deficiency. I believe in the end it effects the spine more than the brain although I certainly felt the effects perceptually/brain wise. I still have some balance and coordination problems. It took 4 years of scary symptoms to diagnose in my case however. I am beggining to think the standards of medical care is better in the UK than here. (Or perhaps the sexism in the medical profession is less)
: [
On that light note, I will stop.
Oh, ps. Just to be obsessive & pedantic. According to one lupus post, low pottassium can be caused by too much B12. Mind you, I think I would rather flood my system with B12 and take a potassium supplement.
First of all my potassium deficiency was pretty bad, was in hospital with severe arrhythmia and coronary artery spasm just like a heart attack six times .They were so useless till my good gastro guy noticed each time my potassium was under 2 and realised the trend related to the heart. It was years later I went on the b 12 as it was rock bottom.
The neuro things have been going on for years. Main thing is tha I loose almost all power in my muscles if I get hot. I fall over and can't move. I also loose bladder control, water just pours out when it feels like it!!!! Can't go out at those times at all.
I get blurred vision in my right eye with pain and floaters, flashing lights also.
Deafening tinnitus in left ear and dizziness and ghastly brain fog.
I get what I can only say is "stupid". I loose coordination when get tired and am liable to cut myself or burn myself making tea at night if I am tired.
I can't organise anything at those times , if I have to tidy a room, I freeze.
Going on holiday I have to increase the steroids or I can't pack because it is impossible to work out what to take. Sometimes even dressing on the morning causes this and I stand in a complete fog on front of my wardrobe unable to move.
I was an English teacher, taught in schools and later adults in further education so to feel my brain was going was scarey but with extra steroid it does return. I try to keep reading but some days I have no concentration at all.
My heart is set on the Myco helping though I do also have adrenal issues so will likely have to continue the steroids low dose.
My problem with drugs is that even a small amount of many drugs causes very severe biliary and liver pain. They honestly don't know why. I seem to be a bit of an oddity!!,
I take a PPI, Ezomeprasole for my stomach for gastritis and it works fine so the issues with the drugs seem to be liver related rather than gut related. I dont tend to get constipation or diarrhea just the malabsorption that is sorted out by the Creon and ursofalk.
Sorry so much info but I have learned so much myself on the forum from other people who have similar, the medical world just haven't a clue about our type of disease.
With me being seronegative it just throws them, thank goodness for my great Rheumy!
Those times where you loose muscle & bladder control sounds absolutely terrifying.
To say its devastating to have neurological problems is such an understatement, as the one part of the body you cannot escape from is your mind & brain.
p.s. no such thing as too much information !
(Although I'm about to do it to you)
When I said I had some balance and co- ordination problems, I was understating it a bit. I actually suffer from mal debarquement syndrome. MdDS). For me having sticky blood probably helped this one along ? But in truth, nobody knows.
It came on really suddenly about 9 years ago and of everything that has ever gone wrong with me, this has been the most frightening. (More scary than an immune drop where the odds where good that I was going to die)
The symptoms have gradually softened, but the first 4 years were horrific. It gives me the sensation of 'me' sometimes bobbing, sometimes quickly jerking up and down - like a bottle floating in water.
I also have the constant sensation of waves inside me, like I'm wobbly jelly. When I walk its like being on a trampoline. It took me years to actually disconnect my visual system to what my body felt like it was doing (hard to explain) The weird thing about this condition is as soon as you get in a car, train, swim - anything that supports me while in movement, the symptoms utterly dissapear. If I was a millionaire I would live on a train.
The problem gets worse as the day go's along. eg. If I haven't pre - prepared a third meal earlier in the day I go hungry.
Thankfully it's now at a point where I can live with it. It's only when I have days that are very fast and jerky that I panic. At this point I know to just have a hand full of Valium and go back to bed. This usually sets thing back to tolerable.
I really believe the last burst of immunosupressants have helped eased these symptoms also.
I have problems with planning and organising myself - takes me a day - day and a half to pack a suitcase. I tend to phase out when faced with a task too taxing on my brain.
I'm very good at walking from one room to another and not knowing why I made the trip. (I have a small house)
And then I have to deal with the constant stress of being re- reminded over and over during the day that I'm essentially brain damaged. The brain fatigue and frustration mix just accumulates as the day progresses. This used to build to rage, but thankfully I can control that 'most' of the time now.
They tell me my verbal reasoning is in tact - one bonus - sort of.
I can relate a bit to you're distress of not being able to do the one profound thing you love - reading.
My attention span is not great for anything, but if i have a real equivalent grief, it is the loss of ability to paint. I'm a trained artist and I just can't do it now. It's the loss of the deep suptle joy of doing and appreciatng this (and other creative things) that for me adds to me feeling blank and shallow.
Having gone on about this, I think putting some hope towards the micophenolate is really reasonable although I know everybody's experience is different.
I'm kind of coming out the other end of treatment and I feel I've regained some perceptual clarity for want of a better way of putting it ? I spend more time with a clear head than I have for many years.
And during these longer clearer patches, I can at least look at a painting and feel the full range of emotions I originally did.
Its something !
OK. I've droned on now.
ps. I did a grad dip in secondary education, but I 'never' had the ability to multitask. Add feral Australian teenagers...... I pretty much ran away really quickly.
And thanks so much for explaining the profound affect your illness has had on your life!
You show great resilience in being able to have worked through those horrendous neurological symptoms . I doubt I could have coped with the loss of so much that is simply part of everyone's life , that they take for granted.
To be able to move without feeling you are in a roller coaster all the time will be a great relief and I am so glad that you find perceptual clarity returning thankfully.
That has at its core the basics of whom we feel ourselves to be, and it is tragic that you can no longer paint.
I do hope your digestive problems will settle soon with the Creon and life will be brighter for you.
You have indeed suffered so much due to this disease and to have survived intact is a victory in itself!!
Frescoes I think you & cutty are FANTASTIC...just discovered this thread...it's exactly the info I need right now re these investigations of my chronic peritoneum/abdominal stuff which has been flaring since early October
But I'll be ruder and ask what you're symptoms are? Don't have to answer !
As an aside to 'aforementioned pancreas' I had chronic stomach ache for ages. Turns out the SLE was attacking the lining of my stomach. Hence the inability to absorb B12. and protracted pre - neuro problems over 4 years. I felt like I was curdling myself to death. It was an awful sensation. In the end my heart rate went up and I was utterly bed ridden.
Without B12 you're neurons de-myelenate. Although I've never had an MRI of my spine, I think this is where the B12 deficiency effects you first. Hence - possible contributer to vestibular stuff. Especially myclonic jerks.
(B12 defficiency fixable with injections)
Having said all this, the creon has helped just as equally as the myco - re wobbles. It's also helped the brain fog. If I wake up and find I can't shake a perceptual concussed feeling I know I'm due for some red meat & creon.
I really really hope there's an answer for you somewhere in this line of investigation.
(Again if I drop in and out its due to family stuff. I will respond eventually)
Am v glad you've offered to be a sounding board on this freckle! Will get back to you (& cutty) very soon. Over the past few weeks I've been trying to concentrate on objective observations of these particular flaring symptoms. am not leaping to any conclusions re pancreas dysfunction, but it's a possiblity. My GI conditions symptoms (some time ago, gastroenterology investigated & diagnosed my upper GI conditions, but the lower GI stuff has been pretty much ignored, barring 2 colonoscopies over the years). I know I have enough stuff in common with your & cutty's conditions for me to want my doctors to approach my current flare with open minds.
As with all my chronic issues, I've spent a a lifetime coaxing my GI system to function via conscientious lifestyle management. Which is good, in that it's helped minimise pharmaceutical treatment up to a point. But this is bad, in that I become so accustomed to managing significant but relatively mild symptomatology that dysfunction becomes chronic...then once a dysfunction is finally recognised & tackled by doctors, treatment can be much more arduous than it might've been had the problem been caught before becoming entrenched. Catch 22 + deja vu all over again!
Hi Freckle, I have been reading up about my Sjogrens and pancreatitis as it appears that the immune system can attack the pancreas in primary Sjogrens patients and only just discovered your post.
My pancreatitis diagnosis by a gastro came about after tummy pain and blood tests showed continued elevated lipase and amylase indicating inflamed pancreas. An endoscopy showed duodenum damage. Now 2 years later on after taking Creon 10,000 (2-3 with meals) my pancreas is rested but I still have slightly elevated lipase and problems with fat absorption so I keep on the Creon. I have been told that I acn continue taking it as long as it helps. Some other pancreas related things that have worked for me are -
Taking Lecithin with any oil based supplement such as Omega 3s, sea buckthorn caps etc. I buy non gmo lecithin from Iherb.com. It stops gastric symptoms from taking oils alone. Eg I can't handle fish oil caps.
Always accompanying animal proteins with greens and salad/veges, having smaller meals more often and 1egg instead of 2. I also found changing to more easily digested foods, lactose free milk, gluten free and reducing grains in diet helped while still eating nutrient dense food and small amounts of protein with each meal. I always take the Creon after my first few bites so it goes to work at the right time.
Hope this is helpful. Best of luck with all the other symptoms too.
I think you just answered a lot of questions about diet that have been bouncing around in my head for some time - this is one area where i need some serious help right now.
I believe I will go get some lecithin right now also !
'Thankyou' and also thank-you for explaining the lipase/amalayse blood tests that helped with your diagnosis as I think my diagnosis was a bit more of a guess and contravertial with some Doctors - although once I started taking the Creon and felt the desperately needed energy and life come back to me I now see I did have a mis firing pancreas.
I wouldn't ever advise this as a treatment for Sjogrens, but because of some more recent kidney problems due to Lupus, I've since had my system blasted with high dose immunosuppression for a year. Within weeks of this the first thing I noticed was the strange sensation of having tears and saliva. Now I'm over the worst with the kidney flare, Doctors are telling me I'm absorbing enough nutrient to get by on without the creon and are encouraging me to see what happens if I stop taking it. Recently I've only taken micro doses - eg a third of a 10,000 pill once a day & I've had a couple of tries at it - cold turkey but have quickly felt very tired, achy and foggy headed without it. It might be that the pancreas secretion isn't perfect and the creon is still needed to maintain a healthy gut balance - bacteria and endocrine feedback stuff ?
Anyway, thank-you for responding with so much really helpful detail. It's all been a bit of a mystery saga for me.
I'm really happy to hear that you seem to be over the worst of your pancreas problems and you are on the mend. It's good that the problem was caught and didn't turn into something scarier - as I get the impression it's not a thing Doctors often think of.
ps. Very much relate to the one egg instead of two. I recklessly had a go at bacon and eggs not so long ago - afterwards I thought It was possible that I might die.
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