Off Cellcept - tremors, steroids and asthma.

[anita]

I swear my gallbladder should have come out years ago.  I have been hospitalized with pancreatitis on four occasions...last they said it was chronic pancreatitis.  I have always suffered with GI stuff...and being that I only have a 4% empty time of my stomach showing severe gastroparesis, everyone ALWAYS attributes ANY GI problems to my gastroparesis and not something else like the gallbladder.  I had to PUSH for the function test this time.  Literally, the GI doctor did a scope, then ordered the ultrasound (which was fine) and ordered a feeding tube!!  I kid you not, he just stopped looking for the problem and decided to put a feeding tube in as I lost 15 pounds in 10 days.  The procedure was ordered and I said NO, and asked my PCP to order the function test...which of course showed the true problem!  It's like we have to be our own doctor these days!!

I haven't got the report back from the gallbladder yet.  Surgeon said all gallbladders 'look' normal on the outside unless they have scaring or cancer tumor.  He sent mine to lab for pathology to check inside the gallbladder, which is where they would find sludge, etc and signs of inflammation, etc.  The test showed it wasn't filling or emptying properly, so regardless of what they find inside surgeon is convinced it was the problem.

Have you been checked for candida?  The thick white sputum is classic of thrush.  And with antibiotics, it will only get worse.  Candida also causes a vast array of problems internally as well...as thrush/candida rages in the gut.

I have the hypermobile issues ranging from double jointed arms/hands/legs, etc and tilted organs as well.  We are like to peas in a pod!!

[MAT51]

Isn't it so ironic that we forsake so much for Sjögren's and end up doing some of the work of doctors unpaid just to save our own skins?! 

I guess I struggle with getting this awful sweet tasting goo, that has ramped up a gear or three, identified correctly because my doctors and dentist have no concept of anything relating to Sjögren's really. They just keep treating me for a series of viral infections that I have in common with their other patients.

So I present before Christmas with a foul and painful fungal infection under my breasts. Hmmm the little, clearly prudish doctor says - just a nasty fungal infection of the skin - here's anti fungal cream. But could this be that I'm very immune suppressed and shouldn't you treat me systemically for candida infection and give my body a break from Cellcept? Oh no - we see this in elderly care homes a lot - it's just a common fungal infection of the skin affecting your sweaty bits. But I'm not in care home for the elderly - nor am I elderly - and nor do I sweat much or routinely suffer fungal infections? Shrug and prescription. The gross boils go but I have to keep plying this stuff in other parts now. Hope coming off Cellcept will sort it out as the skin on my face has become so much nicer again since I stoped taking it.

So now a different GP (I have one excellent GP but she only works two mornings a week in this capacity) will phone any moment and I'll try to explain the thick goo and ask for thrush testing. He will say that oral thrush shows up as red patches and cottage cheese in the mouth and I will have a choice of saying "not in Sjögren's it doesn't always because our mouths are dry" or "well in that case could I try Carbocysteine as recommended for sticky cough for me in letter you received from Sjögren's specialist?". The goo has been bothersome for ages now Anita - but recently as internal tremors started I found my awful cough yielded sweet tasting milky white goo rather than salty!

Hmmm. Meanwhile one eye has mucin strings and some early corneal abrasions despite frequent drops and I spat out a salivary gland stone a few weeks ago after hideous intermittent oral pain - haven't been bothered since. So I have to decide whether to further confirm my "heightened health awareness" to this GP or whether to steer him towards Carbocysteine and treat myself as a systemic Candida patient at same time?

The final option is my favoured one just now. Pandering to doctor egos seems best unless it's life threatening as yours was. Xx

[MAT51]

I swear my gallbladder should have come out years ago.  I have been hospitalized with pancreatitis on four occasions...last they said it was chronic pancreatitis.  I have always suffered with GI stuff...and being that I only have a 4% empty time of my stomach showing severe gastroparesis, everyone ALWAYS attributes ANY GI problems to my gastroparesis and not something else like the gallbladder.  I had to PUSH for the function test this time.  Literally, the GI doctor did a scope, then ordered the ultrasound (which was fine) and ordered a feeding tube!!  I kid you not, he just stopped looking for the problem and decided to put a feeding tube in as I lost 15 pounds in 10 days.  The procedure was ordered and I said NO, and asked my PCP to order the function test...which of course showed the true problem!  It's like we have to be our own doctor these days!!

I haven't got the report back from the gallbladder yet.  Surgeon said all gallbladders 'look' normal on the outside unless they have scaring or cancer tumor.  He sent mine to lab for pathology to check inside the gallbladder, which is where they would find sludge, etc and signs of inflammation, etc.  The test showed it wasn't filling or emptying properly, so regardless of what they find inside surgeon is convinced it was the problem.

Have you been checked for candida?  The thick white sputum is classic of thrush.  And with antibiotics, it will only get worse.  Candida also causes a vast array of problems internally as well...as thrush/candida rages in the gut.

I have the hypermobile issues ranging from double jointed arms/hands/legs, etc and tilted organs as well.  We are like to peas in a pod!!

Update:I spoke to a GP on phone (dizziness too bad to go into see them in person). He said that he didn't think the very viscose saliva I describe sounds like oral thrush. He said he would be willing to prescribe Carbocysteine off licence for me as a specialist has recommended it in a letter but feels I should only be trying one new drug at a time and I'm trying the beta blocker. He was unwilling to switch me to the slow release as he said I need to see the GP who prescribed it. He says he doesn't agree that my dizziness and vertigo and pulsitile tinnitus are viral labyrinthitis as this would be a short term thing and I've had it 24 for nearly a year in varying degrees. He thinks I need to see an ENT for assessment for inner ear disorder such as Mennieres. He summed up that we need to prioritise my multiple symptoms in terms of urgency so I need to work out which is affecting me worse and then they can try treating each set of symptoms methodically to avoid drug interactions. Sensible really but I don't know which is worse - gagging on viscose sputum goo all the time or dizziness and vertigo. He didn't believe they were all part of the same thing, Sjögren's. I do though as I'm fabulously hyperviscose always. That's just my version of this disease I think! X

[anita]

That is so sad that he won't even check/test for candida/thrush...being that you HAD a recent fungal (THRUSH) infection under the breasts...classic of candida presentation!!  You should just go online and research natural remedies...like apple cider vinegar and other treatments, being that the GP won't help.  Do a little reading about internal systemic candida.  It can get REAL nasty and cause all sorts of serious problems.   Just ask Gurs on this forum...she has endured severe thrush/fungal problems...she has a ton of experience and insight.  I know she can point you in the right direction.  Worth a PM to her.

[MAT51]

Well my fungal infection was before Christmas but I take your point. My mouth looks normal is the problem despite my first Angular Chelitis for years and other stuff. I'm seeing a dermatologist next week and can always ask my dentist but the absence of red patches and cottage cheese lumps they are unlikely to swab.

I recall Mrs D from the other forum giving me some great tips for self treating so I'll have a go. I'm already drinking a glass of organic cider vinegar with beetroot Juice daily (ugh).

Isn't it more likely that the voscocity of my sputum is like the viscosity I'm my left eye and my blood eh Plasma Viscocity was 2.00 last month (normal is 1.00-1.72)  ie sed rate (aprox ESR 100) - which, in absence of other problems such as infection or RA, PsA activity, seems to suggest my Sjögren's is making me very viscose everywhere? That's how it feels to me anyway - that Sjögren's is a disease that makes me hyperviscose when it's very active. X

[MAT51]

That is so sad that he won't even check/test for candida/thrush...being that you HAD a recent fungal (THRUSH) infection under the breasts...classic of candida presentation!!  You should just go online and research natural remedies...like apple cider vinegar and other treatments, being that the GP won't help.  Do a little reading about internal systemic candida.  It can get REAL nasty and cause all sorts of serious problems.   Just ask Gurs on this forum...she has endured severe thrush/fungal problems...she has a ton of experience and insight.  I know she can point you in the right direction.  Worth a PM to her.

PS forgot to say that I hope you're recovering well from the cholecystectomy - and more inportany - being proven right for wanting it removed?

[anita]

It makes perfect sense, that viscosity everywhere would/could be effected by Sjogren's...and the absence of saliva.

I'm recovering, but have a hard mass in the center of my abdomen.  I'm hoping it is still the pressure of the gas they used to inflate the cavity so they can see what they are doing, but it's been since Friday and it hasn't gone away yet.  I also have a rash in the same area...almost like a heat rash (tiny red dots), but of course not hot or sweating, etc.  It's been there 3 days now without fading, so I don't think it's a heat rash that would come/go with fever, etc.  And I haven't had a fever in 3 days either.

I'm sure this is what the problem was...as I can eat now!  They saw the function test was abnormal, so they were on board after see those results.

[anita]

Going to have to call the surgeon first thing in the morning.  There is signs of fresh internal bleeding in that hard area in the center of my abdomen.  The old yellow bruising now has fresh new purple bruising.  Not a good sign.

But as for the viscosity...perfectly logical since Sjogren's effects ALL moisture producing glands throughout the body.