Dramatic weight loss - Sjogren's related? (new here)

[Christina]

Greetings!

This forum is amazing & so relieved I've found it. I have a lot going on Sjogren's-wise, I believe, but no doctor who seems to get it. I have lost 30 pounds from loss of appetite -- wondering is this Gastroparesis? Sjogren's related? Anyone out there know about this?

I am a 54 year old menopausal woman on prednisone - it usually takes me six months to lose 5 lbs while trying incredibly hard! Back in November my appetite started shrinking & weight loss started, and now appetite is half of what it used to be and I get full really quickly. If I eat an apple, that's my whole lunch. My appetite is getting less and less.

It was great to lose the 30 lbs but it's  not stopping and that scares me. No nausea, vomiting or abdominal pain. Per my primary care dr, I am own my fourth week of omeprazole; it has helped with acid reflux but has not affected my appetite.

My rheumatologist said this weight loss couldn't be linked to my Sjogren's, even though I asked him specifically and mentioned Sjogren's can affect digestive nerves. I think he doesn't know much about Sjogren's. My neurologist doesn't seem to either.

Now my primary care dr. has scheduled me for an endoscopy. But I just put in a request for a gastric emptying test, because I really think that is what is going on, that my Sjogren's neurological problems have spread to my stomach, and food isn't moving through. (This happened to my late mother so intensely that she lost a huge amount of weight and had to have a permanent feeding tube in her stomach. I suddenly remembered that tonight and it has made me feel so anxious...)

I found some old posts on this topic, and something called gastroparesis. Just wondering if anyone else here has this problem currently or recently? Is an endoscopy really necessary as a first step? Wouldn't the gastric emptying test be less invasive to try first?

Any help or encouragement appreciated! This seems like an incredible forum --

Thank you!

Christina

It's strange, I'm actually feeling the best I have since this autoimmune madness started in 2008 (I have RA, Sjogren's, Graves and Meniere's w/drop attacks , plus related osteoporosis (5 fractures in 2 years), pulmonary embolism, sudden onset cataracts in both eyes, etc etc). Right now, I don't feel weak and malnourished, I feel strong and way more energetic, and not using mobility scooter or cane. This may be because I have started working w/a naturopath who specializes in autoimmunity and I'm on the paleo autoimmune protocol diet -- but I started it several months after the weight loss began, so it is not the cause of the weight loss.

[rnathans]

Before I get to the weight loss I just want to express concern that you are on steroids despite osteoporosis, fractures and cataracts. Steroids can cause all of these. With Dix of both RA and Sjogrens I am surprised you are not on plaquenil and or methotrexate or any of the drugs for RA.

Now, on to the weight loss. Yes, it does sound like you could have gastroparesis but it is not unreasonable for your GI to look for other things as well. But a gastric emptying test makes sense. Have you researched the gastroparesis diets. High fat and high fiber foods are a big no-no. Leave you feeling full sooner and longer. So your apple is going to take a long time to digest and will keep you full.

I have had 3 significant bouts with gastroparesis in 11 years and the first time I did need a feeding tube for 6 months. There is a drug, domperidone, that can help but is now almost impossible to get in the US.
I am fortunate that I have both an excellent neuro and consulted a rheumy who figured out this was Sjogrens related. I was treated with a strong immune suppressant each time. It worked the first two times to eventually stop the GP and I would have years of normal eating. I am currently undergoing treatment again. In my case I am getting cytoxan. I do not think others on the board have gone this route and your docs would need to be sure it was autoimmune in your case. Some people do just get gastroparesis for no reason, but in folks with Sjogrens with other neuro issues autonomic neuropathy ( which GP is a type of) is not uncommon.
My best advice as to what to do right now while pursuing everything is to do a search and educate yourself on gastroparesis diet recs, both what not to eat and how to sneak in more calories.
Keep us posted.

[Christina]

RNathans,

Thanks so much for your reply and your concern. To address your concern - I was trying to keep my post shorter so I cut out my medication background. I am very aware that prednisone can cause cataracts and osteoporosis. However, the doctors were quite surprised that I developed osteo so quickly after starting prednisone and at the dose I was on. And in fact, people with RA are much more likely to develop osteoporosis, shingles and pulmonary embolism, all of which I've had. There is no way of knowing what caused those three things in my case -- RA itself, or the medications I take for it. My biggest goal, shared by my husband and rheumatologist, is to get completely off of prednisone -- I had gone down as much as I could tolerate, and still be able to walk and work (rather than go back on disability). It is a risk I know I am taking. And I am about to go through another round of prednisone tapering/withdrawal horror to see how much lower I can go.

Re your comment about my not being on RA drugs, it almost made me laugh, because I have been on almost all of the RA drugs! I'm really sorry I didn't state that. I started methotrexate as soon as I was diagnosed with aggressive sudden onset RA in 2010. Cannot tolerate methotrexate, which is very disappointing (severe side effects). After nearly five years of trial and error, I have finally found an RA med that works and also doesn't cause severe side effects (Xeljanz). It has been very effective with my RA, and I believe it has suppressed certain aspects of Sjogren's as well. (I have asked my rheumy about plaquenil and he says it is too weak for me. However, given that Sjogren's patients seem to benefit so much from it, I want to raise the issue again. I was not dx with Sjogren's until three years after RA, so by that time I was already on the heavy duty RA meds like Orencia, Enbrel, etc.)

Thanks for the dietary advice, will definitely research and try that now, even though I don't have a diagnosis yet -- certainly can't hurt to try. It's extremely hopeful for me to hear you have been able to successfully treat it, with both meds and diet, even if it has recurred.

Can you tell me which immunosuppresants you have used to successfully treat your gastroparesis, in addition to the Cytoxan? I was already on Xeljanz when the gastroparesis started.

Thanks again for giving me some hope here,

Christina

[Nymph]

Hi, Christina, and welcome!

From what I understand, gastroparesis in Sjogren's is caused by neuropathy. I googled Xeljanz and neuropathy, and neuropathy appears to be a side effect, as with the anti-TNF drugs, too. I just wanted to raise this as a possibility in case you had not considered it. Of course, Sjogren's can cause it, too. Good luck figuring it out. Lack of appetite can have a number of causes, so it's good if your docs are exploring the options.

[Sleepy In Seattle]

I don't know much about the digestive issues, and I don't know how much Pred you're on, but Pred causes me to lose weight like crazy...opposite of how it affects most people. I was on 60mg/day for a monnth (and then another 6 weeks to taper off) twice in the last 5 years - first time I lost almost 25lbs, second time I lost 15. Felt AWESOME on it, too!

It's amazing to me how differently it affects individuals....

Sorry you're dealing with all this stuff. It sucks!!!!

[LovelyDay]

Hey I just wanted to let you know that for years I've gone through periods where as if by magic I drop 20 to 30 pounds. I try to gain it back because I feel like someone as sick as I am should aim for size 2 like that's anything more than vanity.

Usually these periods coincide with severe and lengthy flare-ups though. So I'm surprised by yours. Definitely consult a physician about it if it's the first time it has happened.

[gurs]

When I started on the steroids, I actually dropped weight? I cut down my dose in last 7 months, and I gained???
Go figure!!!!!
When your stomach starts to shrink, you eat less, causing the weight loss too. I have the gastro, and my tummy does
feel full all the time..could be part of it. As long as you feel good..good point about the steroids. I have all the horrible side
effects from them, including my fat face, osteoporosis, cataracts, hair loss, etc.....

gursie

[rnathans]

Christina, thanks for filling in more detail. I am way past plaquenil working either. When my gastroparesis gets bad the only thing that has worked is the cytoxan. I need this big gun then according to my doctors. I have been on IVIG in the past for other neuropathies,etc. we even tried increasing the dose but it did not help the gastroparesis. I cannot tolerate methotrexate or immuran and cell pet did nothing for me.

I am not necessarily suggesting that everyone with with Sjogrens and gastroparesis need cytoxan. But it is what works for me. It is a heavy duty chemo agent though, but I get it in a smaller dose than chemo patients.

[irish]

It is not unusual for people to lose weight with autoimmune diseases. I have times when I will drop about 8-10 pounds without trying and it is wonderful. lol However, that seems to run its course and back it comes. I have been on prednisone for about 10 years at the physiological dose of 10 mgm every other day for my myasthenia gravis. I went through a terrible amount of stress web taking care of my hubby when he was ill and dying. I ended up on pred at 20 mgm every day for 3 years and could not get tapered down. This winter they tried a different taper on me and the first time when I got to 20 every other day for one week every thing went to heck. I ended up back on alternating 20 and 10 for 2 weeks, then 20/5 alternating for 1 week and now 20 every other day. I did not think it would work but so far so good.

I have had some bad times but not like previously. My dermatopathologist told me that our body all tell us when we can get off. When our adrenal glands begin to wake up and take over the job  of producing the hormones then we start to feel better which is a sign that things are looking up. I had so many side effects from tapering that I spent a lot of the winter sitting down as my balance was trashed.

You night want to try taking the plaque nil with your other med. Who knows, it just might be that the 2 drugs will do more together than anyone expected. The Plaquenil is not  an immune suppressant but it is a powerful anti-inflammatory and does help a lot of people, including me. Good luck Irish

[litliwlowa]

Christina

Adding to the replies you've already gotten, I notice you mentioned Graves as one of your conditions. What is the status of your Graves/thyroid? That is an alternate possibility for weight loss and loss of appetite.

Amanda