1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Newbie needing advice.

Posted , 8 users are following.

hopefulmum
hopefulmum

Hi, first time poster here looking for some information for my mum. Her health issues are very long and complex so I must apologise in advance for this very long post!

She was initially diagnosed in the 1960's when she was 20 years old with hyperthyroidism and a stomach ulcer. She received treatment for these but was never totally well afterwards. She also had anemia for which she has had iron tablets several times over the years.

Fast forward twenty years and in her 40's she was diagnosed with RA and prescribed painkillers. She was also diagnosed with hypothyroidism which was critically low by the time it was tested. Since that time she has suffered from various digestive issues.

In her 50's she was diagnosed with Sjogren's, Fibromyalgia, Chronic Fatigue Syndrome and Raynauds. She has her tear ducts sealed. She had by this time been on Kitiprofen, Gabapentin, Amytrypteline, Duloxetine and others at various times. 

She was admitted to hospital aged about 60 suffering from dehydration, malnutrition, and nausea with vomiting. At this time she was diagnosed with H Pylori for which she was treated. Because of her stomach issues the GP stopped all her pain medication and put her on buprenorphine patches which she has been on ever since at the same initial dosage.

The digestive issues persisted for the next few years and she has had regular nausea and pain together with bowel and bladder problems. She was diagnosed with a slow transit and takes daily enemas. She has been told that she had pernicious anemia but has had no treatment for this. She also has Ménière's disease.

She has always had various skin rashes which have been diagnosed and rediagnosed again and again. First it was excema, then they thought psoriasis then photosensitivity. For these she has had emollients and occasional steroid cream. She developed circular red patches on her face several years ago which always seem to be there and sometimes flare up and look like a macular type rash. GP and consultant thought it might be Lupus but tests were negative and another consultant diagnosed Jessners lymphocytic infiltration. Told to use sunscreen and prescribed tacrolimus mono hydrate (protopic) for face 2-3 times week.

For the last few months she has had chronic upper left quadrant pain and violent episodes of burping. She is constantly nauseous and has no appetite. Even water can set off the pain and nausea. Off to another private consultant who has done a CT scan, endoscopy and colonoscopy. Just back from consultation to discuss the results and apparently all is normal and he suspects Sjogren's related. 

I'm just not sure where to go from here, the GP (who is very sympathetic) has no suggestions. She has just turned 70 and has been so ill all her life it's heartbreaking. She only weighs 6st 13 and needs to put weight on. 

Current medications are butrans patches, thyroxine and artificial tears and saliva. Mirabegan for urinary incontinence, movicol for slow transit and lanzoprasole/esomprazole for indigestion. Also tacrolimus mono hydrate for facial rash. She has never been offered disease modifying anti rheumatics or B12 injections. Would hydroxychloroquine help? I have lost count of how many different consultants she has seen and how many different diagnosis' she has had. She is in BUPA and pays thousands a year for no clear answers. These individual ailments could all be manifestations of Sjogren's couldn't they? 

I would really appreciate any advice.

0 likes, 11 replies

11 Replies

  • Sue1247
    Sue1247 hopefulmum

    Posted

    Has she tried giving up gluten and dairy? I'm very sorry to hear she's so I'll. Not doing too well myself but nothing compared to that.
    • onebratt08
      onebratt08 Sue1247

      Posted

      I also was going to ask about gluten. I'm not a doctor, but have had my own troubles with gluten, and those GI symptoms sound like some of the ones I have when I experience gluten.                                                                                                   
  • pamela87113
    pamela87113 hopefulmum

    Posted

    It sounds as though she is susceptible to secondary autoimmune conditions and these are all so personal that they are hard to define accurately. I am a similar age to your mother and have experienced several of these over the years, thankfully at a fairly low level most of the time. Unfortunately people with these tendancies often react badly to chemicals particularly antibiotics and hypertension drugs. My most serious flare up came after I started taking blood pressure tablets and it took a long while to convince the doctors that I had a rare, but known, reaction to them. I always try to reduce tablets and creams to the lowest possible level. I haven't yet had to give up gluten and dairy but only have them in moderation. I'm afraid it is a matter of trial and error, we can't cure these conditions so have to manage them. Wishing her well.
  • lily65668
    lily65668 hopefulmum

    Posted

    I'm inclined to agree with Pamela here, though hesitated to express an opinion as I know many contributors to this forum have had excellent results with medications in general and swear by hydroxychloroquine (Plaquenil) in particular. I too suspect that many of your poor mother's symptoms might be due to a chain of drug reactions. My own answer would be no, don't risk introducing Plaquenil into an already complex mix of medications. But there will be other opinions.

    For 40 years I watched a dear friend go the same route after developing acute RA at the age of only 19. One illness after another, seemingly moving further and further from the original auto-immune condition, each treated with yet another new medication or surgery, which in turn seemed to produce its own problems. She died eight months ago and though I mourn her, I can't help be glad that her sufferings are at an end.

    I really don't know what to suggest, other than trying to reduce your mother's medications (very slowly) rather than introducing new ones.

    You could also try varying her diet to see whether there is anything she's eating that makes her condition worse. Some people on here swear by gluten-free, others avoid dairy, some find they're helped by a strict vegetarian or even vegan diet, while others go the other way and favour paleo.

    Whether it's a question of medication or diet, there seem to be no rules, only individual responses. I hope you can find a way to ease your mother's suffering.

  • jordan58854
    jordan58854 hopefulmum

    Posted

    This is important. Is your mother on steriods. The gas or burping and upper quad pain could be a side-effect of steriods. It would not show on tests but to get relief she need to see a very good digestive doctor who can repair the damage from steriods. I also agree thay your mother should be eating a very strict diet with no sugar, wheat or anything with spice. Fresh peeled apples, plain organic yogurt (a probiotic and calcium) with fresh blueberries or strawberries, well-cooked veggies, brown rice, baked potatoes and yams, salad greens with no dressing but just olive oil and a little syrup mixed as a dressing, probiotics can be given as a liquid, fish oil for omega 3 and vitamin D, an organic gummy vitamin she can enjoy chewing and easily digest, miso soup is also a probiotic and soothing for the stomach, lightly squeeze a few drops of organic lemon in her watch which she will digest and increase her alkalinity and reduce acid, plain hummus with organic tumeric added for inflammation, no soda, no sweets but pure maple syrup when she wants something sweet, dairy is fine like sour cream on her potatoes because she needs the calcium and it is soothing (does not produce acid like once thought, NO BLACK TEA WHAT SO EVER (IT IS TO HARSH ON THE STOMACH), just add a bit of organic no sugar cherry, blueberry or cranberry juice to hot spring water or cold spring water with a squirt of lemon depending on the weather. These things will help her, I promise you. My friend had all of the same issue your mother is having including the terrible pain and gas and it was the medicine strip the epithilial cells from her stomach. A doctor diagnose the problem in the ER because the doctor had read books written by writers with MS who very kindly described the reaction to steroids and other drugs on his stomach. 
  • barbara98940
    barbara98940 hopefulmum

    Posted

    I'm really sorry to hear your mum is poorly. Has anyone looked into foods allergies and intolerances? Or Crohn' s disease

    Be wary of hydroxychloroquine as it can cause macular problems - the last thing she needs is to go blind too. Not everyone gets this side effect though. Sorry, no idea if it would help. Someone on this site said it helped them a lot. Everyone's different.

  • christine_73623
    christine_73623 hopefulmum

    Posted

    First of all your mum is a true suvivor of everything that she has been through in her life, and i bet she is an extremley strong person mentally to have gone through what she has, i would suggest like others to look at diet, i am no sugar, no gluten,nothing basically if the sun does not grow it i do not eat it 

    , I am sending your mum all the best, and as a daughter it can be soul wrenching when someone we love goes through things in their lives and we cannot really do anything to help them, except just by you  being with her,  will be a comfort to her  all the best for the future chrissyxx 

  • hopefulmum
    hopefulmum

    Posted

    Thanks for all the replies and advice regarding diet. I had been thinking gluten intolerance but as even water brings on these symptoms thought it might not be that. She has a very healthy diet, has been a vegetarian for 30 years and never eats sugar or sweets. She just eats yoghurt, wholegrain rice, fruit, porridge, salad etc. She never has fats such as butter or cream. She takes vitamin D3 and B12 supplements.  She doesn't smoke or drink alcohol and takes regular excercise at a gym. To look at her you wouldn't believe there was anything wrong, she looks at least ten years younger than her age. 

    The biopsies she had two weeks ago showed nothing untoward so no Crohn's. I think she may try a gluten free diet for a few weeks and see how she gets on. Failing that, it's back to the GP and another referral. 

    • barbara98940
      barbara98940 hopefulmum

      Posted

      If it is an intolerance are you aware symptoms can be delayed and can appear a day or two after eating the food? Intolerances can't be picked up by any tests. The only way to do it is by an exclusion diet. Have a look at allergyuk website for more info.
    • joycemadine
      joycemadine hopefulmum

      Posted

      Sorry about your mum bless her I have slow bowel motility caused by the SS. MY rheumy has just given me some tablets called creon . dont seem to be helping much

      .good luck to your mum x

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.