As some of you are aware, I have gastroparesis at the moment and have eaten next to nothing for the past 6 days. There is movement according to my GP but it's just so slow and bowel sounds are present but really hard to find. My question is, should I continue to take all my sjogrens meds? I am still taking omeprazole in the hope it helps keep any excess acid from sitting in my throat and a 5mg tablet of prednisolone as I didn't want to just stop it, but I'm not sure about methatrexate. I have visions of all these meds just sitting floating in my stomach and making things worse as they are not going anywhere are they? I have stopped all the vitamin type things and any "as needed" medications but what about the mtx? Do I really need my immune system suppressed at the moment? Will it hurt to just stop it till I'm better or does it really have to be weaned off?
Thank you
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Georgie-girl
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Something to ask your specialist team I'd have thought - but they COULD offer methotrexate injections perhaps if this going to be a protracted situation.
I did Pro and had conflicting answers. My GP said take it as it will be absorbed before it hits my stomach, which I thought was a bit odd, my Rheumy said it is ok to miss it for a week or 2 if I am happy to do so, the A+E docs said still take it but that was a few days ago, and the pharmacist said it probably won't hurt but check with your GP. I think I should go with rheumies advice. Just don't want to leave meds pooling in my stomach if I don't need to especially as my sjogrens diagnosis is being questioned, yet on the other hand, if it is the autoimmune thing causing this, then I need to be medicated. Tricky one.
Blowed if I can see how it can be absorbed BEFORE it hits your stomach! Suppose it depends what you define as stomach ... Missing it seems the best idea to me if the rheumy has approved that.
I’m new to this site . I’m primary anti phospholipid Syndrome, the clotting side of Lupus. I’m not ,”full Lupus” but am on the spectrum. I’m seen at the London Lupus Centre. I live in Texas, and have a great multi disciplinary team there.
I also have Sjögren’s Syndrome. I also suffer with gastro paresis. ( but it’s greatly improved with anticoagulation- Warfarin.) Do you have dysautonomia?
Firstly, what medication(s) are you on for SS? I assume hydroxychloroquine? What others?
My gastroenterologist and neurologist found that a medication called methsopolomine bromide ( Pamine forte) was useful in helping with my gastro paresis. It’s an anti cholnergenic.
It helps the brain and smooth muscle cells communicate. ( that’s the idea anyway.) The concern can be that it can actually cause a an ileus! So it can be a double edged sword.
I was put on this drug in November 2011. I kept going in for abdominal surgeries for suspected mechanical obstruction... but it was determined it was non mechanical. So my gastro commenced this med.
2012: it was discovered I had temporal lobe seizures.
2016: diagnosis of APS.
Something to look at but I am very unfamiliar with methotrexate. And I’m unfamiliar with severe and full primary lupus- double stranded.
I’m starting Rituximab infusions on May 6th. I cannot get the clotting under control so I joined this forum . My Rheumatoligist told me I am sliding more and more to full Lupus. But I am not having the terrible full lupus problems some suffer with at all.
Hi Kelly, seems you are going through a bit of a "wait and see" phase at the moment. I think most of us with autoimmune things have been there.
I am surprised though that your clotting isn't controlled by the warfarin. From what I understand, APS does often appear with Lupus but then it can also be a primary disorder. You do seem to be having a lot going on which often happens as these conditions over lap quite a lot so you can have symptoms of lots of different autoimmune conditions all rolled into one. I tested positive to APS when I first had autoimmune symptoms and I was started on baby aspirin, but it obviously disappeared after about 6 months as I have been negative ever since.
I am so sorry to hear of all the surgeries you had to endure before they realised it wasnt mechanical. That must've been awful.
I have suffered with my tummy but not to your extent. Mine has always been just a slight dismotility or a bout of gastritis or other pains.
I was diagnosed with sjogrens years ago but there was always a bit of a question mark hanging over it. I have a RF thats through the roof and ANA's that can be seen but not enough to give me a positive result. My complements go up and down but not drastically and my inflamation markers are seldom higher than 7 or 8. I had a lip biopsy too but that was inconclusive just showing chronic inflammation. From the start though I also had subtle autonomic features which is quite common with sjogrens so it was put down to this and was always pretty much under control with steroids. I also had autonomic testing but it was all ok. Recently though my sjogrens diagnosis has come into question and now my autonomic things have progressed, I am at a bit of a loss. So are my doctors.
I think some sort of hereditary autonomic thing fits me better than sjogrens as my mother and now my daughter had/have similar. I am going to be re evaluated by autonomic doctors soon so hopefully will get some answers then.
To be honest I'm not sure I understand the difference between an ileus, gastroparesis or a pseudo obstruction as they all seem to be the same thing to me but I have one of them at the moment.
You ask about meds and I am on hydroxychloroquine as you rightly assumed and also prednisolone and methatrexate with folic acid. I take omeprazole for my tummy although only when I start to feel a bit acidy or like gastritis is starting up.
Do you have a diagnosis of dysautonomia?
Hopefully you will find rituximab works wonders for you when you start it.
Hi. My name is Lisa. I have had Sjogrens etc for years. Last year I started a medication for it called Evoxac. The generic I get is called Cevimeline. It stimulates nerves to make saliva. When I take it I can actually hear my digestive system working. When I take it regularly I definitely have bowel movements and I have struggled with constipation for many years. I don’t like how I feel on it... nausea etc, but it does make my digestive system work. It creates saliva for u. I live in the United States in Pennsylvania. I am not sure if u can get Evoxac where u are? Or the generic, Cevimeline.? I Hope I helped u. I do still take my Omeprazole every morning and Ranitidine every night.
Thank you Lisa. I will mention this to my doctor. I could certainly use something to stimulate my nerves. Im at the point where I will try anything. Thank you again.
Six days is a long time to go without food. I am sorry you are going through this. I have suspected dysmotility and am on a small meals today and PPIs and Miralax. Right now I am doing fine, but when the system seems to stall it is not a good feeling. I am sure you know — and it sounds pretty severe with you.
I am curious if you know what tests you will have at that autonomic clinic. They want me to eventually have the « smart pill. » Are you having that? I have had the tilt table test test and would be happy to any questions about it.
Really feeling for you with these GI troubles. Hoping you get better after the tests and a new strategy.
Hi Kay and thanks for your reply. I did have the tilt table test before about 4 years ago as I was having minor autonomic symptoms but everything was fine then. Now my symptoms have increased big time my GP thought it would be worth repeating it. I'm just waiting for an appointment although I have no idea how long that will take or what tests will be done. I have had motility tests before too though they have been varied. Some normal others not. I have kind of known from the start that my issues were mainly with my nerves but no one took it seriously as nothing ever showed on a test. Even my EMG and NCS were normal. Coincidentally, I have an appointment with a different gastro doctor in couple of weeks who was my second opinion and I'm having an MRI small bowel with horrible stuff I have to drink. Not sure if I can do it if I'm moving this slowly but I'll check.
How did you get your motility issues confirmed? Do you have other autonomic problems? And what is a "smart pill". Is that the little camera thing you swallow?
Yes, it is the « little camera » that you swallow. That is amazing that you knew it was your nerves causing your GI issues. I would not say « confirmed » about the dysmotility. I did have an esophageal manometry many years ago that was abnormal. I have had variious GI issues over the years and once I had clinically diagnosed orthostatic hypotension, they suspected there was a relationship between the GI issues and the neurological issues. When I deteriorated I had a tilt table test. That confirmed autonomic dysfunction. All of these nerves are connected, so probably a lot of us have GI and neurological stuff. Do you feel light-headed when you stand? Are you affected by the heat?
I noticed we both have anti-phospholipid antibodies. They are seeing an association between those auto-antibodies and dysautonomia. It is such a new area. Good you are able to get to an autonomic center. Some people in the U.S. travel far to get diagnosed at a specialty center.
Just re-read the part about MRI of small bowel. I remember my GI doctor saying this smart pill can give lots of information more efficiently than the old tests. The manometry was awful. The old small bowel test was bad too. Where are you located? Maybe you could get the smart pill instead of the MRI.
I am going to call the secretary tomorrow as it doesn't make sense for me to waste anyone's time swallowing some nasty gluppy stuff that might not pass through in time for the MRI an hour later, and that's if it doesn't make me throw it up beforehand. I will ask about the pill. Seems a lot better.
Funnily enough orthostatic hypotension has never been a issue with me and I think that's what has throw everyone off. I keep being told its the most common symptom and usually the first one to show itself but in my case, it isn't.
I have recently started to have episodes of shakes, dizziness, sweats, blurred vision, breathlessness, lightheadedness, heart racing, nausea, etc and didnt make the connection at first but Im thinking now that it was blood pressure related. Next time I have one if Im home, I will check my BP.
I do have a problem with temperature regulation and I have periods when I sweat buckets for no reason. I had a sweat test which was abnormal and due to be repeated but never was as it seemed to go away by itself for such a long time.
I did test positive for APS a few years back but that too seemed to go away by itself and I have been negative for many years since. It's all very strange and left me wondering now if I do actually have an autoimmune condition at all or if I do and this is the way it affects me. Every time I think I'm getting closer to some answers, something else happens and throws it all in turmoil. I'm in London, UK.
Today my tummy is a lot better and I have started eating small amounts. It still hurts but I guess it will ease and at least I'm eating.
Oh, I can certainly see why your doctors suspect autonomic dysfunction. Those nerves control a lot. You seem to not be auto-regulating. The GI doctor will know if the MRI is better for the information she needs. But if it means you have to travel to get the smart pill, I would consider it.
My blood pressure never was low in the doctor’s office. But I was out in twenty minutes on the tilt table test with no blood pressure. The tests they do on you are much more sensitive.
Also, the anti-phospholipid antibodies come and go. Do they view it as negative or just episodic?
I know the feeling of frustration of not knowing what is actually causing these symptoms.
I noticed your sweat test was about. So do they see that as a sign of autonomic dysfunction?
No apparantly not. I was told it was just slightly abnormal and probably nothing to worry about. I had a bit of a fight on my hands to get retested which they agreed to but then the unit went under refurbishment and I never heard back. I'll get my GP to get onto them.
APS wise I'm viewed as negative. I have been tested quite a bit over the years and its always still negative so it was assumed I had an infection when it was positive.
So what's your story Kay? Do you have Lupus and the autonomic issues that come with it or primary dysautonomia?
I have UCTD with episodic low level anti-cardiolipin antibodies, ANA low positive, positive anti-LA. The neurological issues are presumed to come from the autoimmune disease. Apparently the autonomic dysfunction is rare. It may be more common with Sjogrens, though. Is that what your doctors say?
I am surprised they did not see your abnormal sweat test as significant. The doctors at the autonomic unit may view things differently. Doctors with a lot of expertise can diagnose without tests. They knew I had orthostatic hypotension even though my blood pressure was normal in the office. It was eventually confirmed.
Sounds like you have had a frustrating time. I am here to help with the autoimmune issues if you have questions or want lifestyle advice.
Thanks kay I appreciate that. I believe you're right about autonomic issues being more prevalent with sjogrens. That's what I was originally diagnosed with but just recently it is being questioned as to if I actually have it. I have an extremely high RF and visible Ana's but not enough to give a positive result. I have the occasional complements up and down but thats it blood wise. And no matter what, my ESR is seldom over 5. I'm told my disease is not sufficient enough to be causing so many autonomic things. But why then does it always worsen when they taper my steroids? I just can't wait to see the autonomic doctors and hopefully get some kind of answer to my questions. Hope you're all under control at the moment and are relatively pain free.
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