Hi Everyone, I last posted on here a while back. I've been in a bit of a diagnostic limbo on and off for the last 6 months. After very severe epigastric and back pain. Scans showed my pancreas has atrophied somewhat in the last year, alongside some other odd stuff. The tail of it has completely gone!! So goodness knows what happened to that. My doctor has given me a diagnosis of chronic pancreatitis. Still waiting for consultants to give a firm dx because it doesn't meet all the criteria just yet. My rheumi has said in the past it's very likely I have SS, but that not much can be done about it, apart from moisture replacement strategies. I saw another rheumi, a week ago, who's done some bloods which he says will definitively say if it's primary SS or not (I'm sure I've had them done before - maybe not - - I've had so many bloods done over last year I've lost track).
After a rather 'dark patch' mentally, I'm coping, although, it's not super easy. On pregabylin, Amitrypyline and tramadol when pain is bad. Don't sleep so well as woken either by dry mouth symptoms or pain.
Anyway, sorry for the long preamble. My main question is....Is there anyone else on here with SS and pancreas problems?
Be good to hear any thoughts or tips. Thanks guys, hope you're all ok
Chad
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Chad01
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Hi Chad. Sorry it’s all so uncomfortable and uncertain for you. I hope both change if you get diagnosed and onto proper disease modifying medication perhaps.
I haven’t been diagnosed with chronic pancreatitis but I did sufffwr from acute pancreatitis when on a drug called Azathioprine which I was given for my rheumatic disease (then thought to be RA - now rediagnosed by lip biopsy as primary Sjögren’s).
I do know that chronic pancreatitis canbe associated with autoimmunity - particularly Sjögren’s.
If your bloods don’t shed enough light on your probable Sjögren’s then a lip biopsy might be worth considering as it got me diagnosed conclusively at last. I do have a positive ANA and lots of GI problems at both ends. I’m having a barium swallow on Thursday but I think, in my case, it’s all neurological as most of my symptoms are.
That sounds pretty awful. How long had you been experiencing the epigastric and back pain before they found your pancreas tail missing?
I'm sure you have been through quite an anxious time. These things certainly make us confront our mortality don't they?
In November 2017, I woke one morning with severe epigastric pain which felt like sphincter of Oddi dysfunction pain, (which I had on two previous occasions I had IV morphine, so I know what it felt like). For the next ten days I had nausea and epigastric pain and was quite unwell. Then I started to get severe lower gut pain which is still continuing. When I saw my Gastroenterologist a few weeks ago he ordered an upper biliary tree and pancreatic scan. I will see him in a couple of weeks for results.
So although I can't help you much I do empathise with you. I'll be interested in other responses.
Thanks for taking the time to reply guys. Yes, I've had epigastric pain for several years, increasing in regularity and severity. Only found out about the tail of my pancreas missing and the atrophy changes when they did a scan last year.
I just heard back from the other rheumatologist I went to see a couple of weeks ago yesterday who said the bloods don't show Sjogrens, so he seems to think that's conclusive. Which is a bit frustrating. Especially as his profile had his interests down as SS. My main rheumatologist has said it could be sjogrens but nothing can be done apart from moisture replacement.
I guess, in my head, I want to get a definitive dx of sjogrens one way or another, because if that is the cause of the pancreatitis, I want to explore every avenue in preventing it from exacerbating the pancreas damage. Apart from which, living with the symptoms is really tough sometimes. Everything from the dryness and joint pain, fatigue, gi issues to constantly swollen glands behind ears
Anyway, unfortunately, it seems to be the case that until things deteriorate further or a connection becomes more easily identifiable no one really feels the need to do more investigation.
Do you think the lip biopsy would be more definitive than the bloods? Also, do you take any steroids or imno-suppressants that help?
Best wishes and thanks again for your kind replies,
Hello Chad01,I don't have a diagnosis of sjorgens yet but it seems to be heading this way , after the very long time trying to get help with my symptoms a rheumatologist has found antibodies and damage to salivary glands.My main symptom is severe muscle pain.In December I was put on hydroxychloroquine and given a steroid injection which has helped a lot.
Thanks for your reply. SS seems to be one of those diseases that people often struggle to get a firm dx of for many years. I had a trial of Prednisone steroids for a month. Mainly to see if my pancreas problems were auto immune. Although I felt some slight improvements generally my rheumi felt it wasn't enough to take any firm conclusions conclusions from.
Although I would have thought my panc pain could very likely be down to nerve damage, in which case steroids wouldn't help the pain. Generally, whilst on the steroids I don't remember being as dry and I don't remember the fatigue being as bad. I can't remember how my joint/ muscle pains and all the other troubles were, although my memory is so bad these days that's no surprise
Very useful to know what has helped you though.
I'm currently on a mixture of pregabylin amitrypyline ranitidine and tramadol for when the pain is bad
A little frustrating to be in this limbo without a dx after several years of all this.
Anyway, hope your symptoms improve along with everyone else's.
I don't understand when Rheumatologists categorically infer that you don't have Sjögren's because bloods have come back negative. Wouldn't it be better for them to take the wait and see approach because it is well documented that positive ANA's and ENA's may take time to develop. In my case ten years.
I know they have the ACR/EULAR guidelines to follow for definitive diagnosis and some doctors more obviously than others, follow it. However I've heard there are doctors who say...."all the symptoms point to this, so let's treat you as if you have it even though the bloods don't show it.....yet".
Twitchytoes suggests that the lip biopsy may be the way forward as it was for her. I would have had one done if I knew what I know now.
I'm a bit taken aback by the attitude that 'moisture replacement' is the only thing that can be done when one has a definite diagnosis of SS. I think being under a Rheumatologist who does monitoring of the whole condition and how it is impacting other organs in the longterm is one benefit of knowing. No one is going to do this without a diagnosis. Although there are no specific drugs for Sjögren's yet there are some available that can help SS people to various degrees. These may need to be tried.
I know for me, the difference in how I am treated is worlds apart since having a Sjōgren's Syndrome diagnosis. Before a definite diagnosis, all my SS symptoms were managed by separate specialties and 'never the twain shall meet'. Now there is discussion and liaison between my Gastroenterologist, my Pulmonologist, Ophthalmologist, Rheumatologist and GP.
Now I can say with confidence that I have Sjögrens Syndrome and expect respect that I am not ailing or 'nuts' but have an organic basis for these many disparate symptoms.
I agree although I have an awful neurologist who still treats me like I’m nuts despite clear diagnosis and I’m still under many different specialists without a clear treatment plan. I’m on Mycophenolate for now and suspect that I have stage 2 CKD due to Sjögren’s rather than essential hypertension as they have me down as. Older diagnosis are hard to shake off. Ignorance about Sjögren’s amongst health care professionals and doctors, including rheumatologists and neurologist’s, is still very prevalent. And the more knowledge we acquire about it the more we are viewed by doctors as having “heightened health awareness”.
It’s not a win win thing but the lip biopsy is actually the only truly definitive test for Sjögren’s I believe.
Yes Twitchytoes, S.S. to me falls into the camp of those inventions of the past which were decried by their contemporaries such as the Western Union regarding Alexander Graham Bell's telephone invention, where officials said "We do not see that this device will be ever capable of sending recognisable speech over a distance of several miles" and in 1934 Thomas Watson, chairman of IBM, stated, "I think there is a world market for maybe five computers." Oops!
May I prophesy 😀 that sometime in the future S.S. and other obscure conditions will be taught in medical courses with intelligence and honesty based on research, patient evidence and yet to be devised testing. Unfortunately those awful neurologists and rheumatologists who have dismissed us as nuts may not be around to see the day or more likely we won't be.
May I just ask regarding your statement that "the lip biopsy is actually the only definitive test for Sjōgren's". Do you mean even more than ANA'a and Anti Ro's & La's etc?
The lip biopsy, so my oral medicine consultant, former rheumatologist and the Sjögren’s expert in Swindon have explained to me - is the only definitive test. You can be Ro and La positive but have Lupus rather than Sjögren’s. However being only lip biopsy positive makes a person seronegative for Sjögren’s - which is a great disadvantage where it comes to being ruled out for clinical trials and treatment options.
I do also have a positive ANA but it’s a very non specific antibody test - even a percentage of healthy people have this. The pattern of mine is actually more associated with Scleroderma - which I don’t have thankfully.
So is the pain of lip biopsy worth it for someone like me who has now (since 2015 at least) had consistently raised ANA's (lowest to date 1:640 otherwise 1:1280 titres) and positive Anti Ro and Ro52, simply to prove a point? I'd have to check my results for the pattern as I can't confirm it off the top but I think it was 'Speckled'.
My Rheumatologist seems to be more and more on board with the Sjögren's diagnosis now.
Only you can decide that but if I were you then I’d say no not worth it. The DMARD treatments are all much of a muchness so if you want to try these then you only need to be symptomatic and Ro positive.
It was worth it for someone like me who was wrongly diagnosed with RA and was only ANA, IgG, IgA and inflammation positive - plus suffering from small fibre sensory and autonomic neuropathy with ataxia - which no doctor could previously account for or include as part of my autoimmune profile. This has changed with my lip biopsy result.
And more to the point, a lip biopsy could be a very useful way for Chad to get more clarity?
Thanks for all the comments. Unfortunately my father has become very seriously ill and so I've been at the hospital for most of the weekend. I will properly digest and reply when things are a little calmer. Thanks again everyone. C
Please let us know how this appt goes as sometimes it is quite supportive to us all.
I had no idea that so many of my problems were related to my Schogrens. Brain fog and sudden weariness I have attached to my R.A. and my neurological condition Orthostatic Tremor.
Hi Sekka. At the moment the dr I’ve seen is not keen on the Sjogrens dx. I’m in and out of a specialist Behcets clinic where they’re looking for any other assosciated ai conditions I might have. Fingers x’d.
Hi Chad01 I have had SS for 20 years now and more recently have been diagnosed with Pancreatic Insufficiency and Gastro Parisis. I recently had an oesophagis spasm which was not very nice and quite out of the blue after eating a small meal. The Dr at the hospital here in New Zealand said that it can be quite common with SS people. Can't say I have ever heard of that explaination at all. You probably do everything right with your diet and balancing out food with enzymes (Creon) It is not easy to always it 'it right' Good luck and keep searching for answers.
Thanks to COVID Immunisations x 3 I now have full on pancreatic flares...all my organs were scanned over 9months ago now to address in changes or serious issues with my abdomen area/lungs & heart as thanks to the original immunetherapy medication I now have multiple organ issues and tissues attacking the tissues etc. Crazy times with Sjogrens and Doctors experiments!
It is a full time job taking natural options like probiotics/prebiotics (when belly swells/gets hot) and various food/drink options to keep flares at bay as they take so much longer to calm down. Lemon/Tumeric/Ginger drinks with Rain Water. Beetroot/Celery/Carrot/Apple and Mint are allrounders. I am back on my Raw Honey & Lemon drinks at least once a day...so decreased the amount of lemon I put in my other drink. Cabbage based meals are good for the gut...period! Natural Calmatives have been a godsend! Exercise is also essential to keep everything moving/functioning. I'm limited to only 2 laps in pool now...one lap being Swan Float using just your arms which is good for relaxation/Spine and does not put pressure on the respiratory area. I have an electric bike...very early morning before traffic on bike trail..power wade in ocean very early morning (easier to breathe and blood oxygen still doable) I even fit in some hoops which helps with balance/eyes/cognitive function/reflexes etc etc....naturally I live close by to all of these options for it to be possible near the coast in Albany W.A.
Last appointment last year 2023 with Specialist who deals with Gut issues and who at one time was going to cut me open to investigate what was happening with organs from the medication...which I prevented!
He said I am still standing..Recommendation was no more tests/experiments..no more antinflammatories like Ibrufen etc .."Keep Self Managing"!.(was originally told 24 years ago... 18months and I would be in wheelchair ....got myself off of those drugs Steroids..Methotrexate/Plaquinil asap! Note Plaquinil was destroying my sight and effecting my eyes in general......Eye Specialist 24 years ago (2000) recommended it be stopped asap. My natural options ended up healing and improving my sight...Specialist was most impressed!
Its a case of use it or lose it and maintain your independence the best way that works for you.
Hi Chad I havent been on this websit for a long time. However 6 years ago my sjogrens moved from primary to secondary and has slowed down my pancreas and my stomach. I now have gastro parisis. It has been a long time of trial and error to work out which foods I can digest. I have a good ordinary GP Dr and a good Dietitian here at New Plymouth New Zealand. I have to take Creon envymes to assist with digestion. My Sjogrens has also slowed down my Thyroid. I cant take orthodox slow release medications so I have to send away for the pure extrack of thyroid taken from pigs and proceessed into a capsule by a compound lab
in Auckland. I am on an even keel at the moment for which I am grateful. It takes careful management and timing throughout the day. I don't have any fancy medication for my pancreas. I find a small amount of baking soda in water helps also lying on my left side for awhile. I also lean back on a hot water bottle to cloke pain. Not sure if any of this helps.
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