Question for those with gastroparesis

[Cmeeker]

It looks like I'm likely going to be diagnosed with gastroparesis. Rheum and GI both think I have it, just waiting on emptying test. I've had tests to rule pretty much everything else and my symptoms all line up with gastroparesis except I don't vomit. This is hitting me very hard. I've learned to deal with my sjogrens symptoms but this feels like too much for me. I can barely eat anything without feeling uncomfortable. Even water sometimes feels bad. I'm afraid I'll never be able to go get pizza or ice cream with my son, who is 4. What will he think growing up with a mom who doesn't eat regular food?

I'd like to know from others with this along with sjogrens- Have your symptoms improved, gotten worse or stayed the same over time? My rheum says it can come and go but the GI did not seem to agree when I asked her about that. Have you found any of your autoimmune meds have helped with gastroparesis? I'm only taking plaquenil but I wonder if I should be on something stronger? I plan to ask my rheum but now I can't get in until August!

[Cindy]

I'm so sorry you are going through this. I would do tons of research and present it to the rheumatologist. If I remember correctly, there was a post of a member who had gastroparesis and once he did Immunosuppressive drug he was better. I'm sure more people would have better input than I do. Don't lose hope, I will be praying for you so you learn how to manage this.

[rnathans]

I get rituxan infusions every 5 months and that has helped my gastroparesis a great deal. Like you I almost never vomited, except once or twice in the very beginning.

[Cmeeker]

Thanks for the responses. Rnathans, I have been curious about rituxan and will ask my rheum about it. I'm just wondering if I can get approved for it without trying something like methotrexate or imuran first? I really want to just jump to a bigger gun med right now to try and reverse/stop my GI misery as much as possible. Are you able to eat somewhat normally now?

[rnathans]

I had been on those drugs but could not tolerate either. With my first bout of GP back in 2004 I was so sick I needed a feeding tube for 6 months while I underwent cytoxan treatments. That is a very strong chemo agent which I would not recommend. It helped me but was tough to tolerate. Rituxan is much easier to handle but did not exist in 2004. Some docs seem to be able to get it approved, others not. Partly it depends what they write, partly it depends on your insurance. I was very lucky. I am going on my 3rd year of rituxan and doing quite well. It also has helped with other things such as my walking. I can now walk a mile on good days. Used to be 3 blocks was my max.

[Cmeeker]

Thanks for the information! And I'm glad to hear you're doing so much better on the Rituxan. I have an appointment with my rheum today so we'll see what she says. I still have not met with the GI to hear their suggestions, but I want to address it from an autoimmune standpoint first anyway.

[rnathans]

CMEEKER, How did your rheumatologist appointment go?

[Cmeeker]

Thank you for asking! I think it went well, my rheum is awesome (but sadly will be retiring this year). She put me on 10mg of prednisone daily for 2-3 weeks to see what happens. We're going to talk once that is done and she mentioned cellcept as the next step. I'm already feeling better from the prednisone, I was having a flare for sure but also my stomach seems a little better. I can't tell yet if it's just the side effect of steroids making me more hungry or if it is actually making the gastroparesis go down a little bit.

She did also say that gastroparesis can improve so that was nice to hear. She said she's had patients that she thought would need a feeding tube soon and then they just get better. I'm not thinking this will just magically disappear but it would be nice to know it could improve and then wax and wane like the rest of my sjogrens symptoms do. I'm 36 so potentially could have to deal with this for a few decades... 

Did you ever try reglan? My GI wanted me to try that and rheum also says it's worth trying, but I am very hesitant due to the neurological side effects.

[Cindy]

Im glad you feel more confident. Please keep us posted, I hope steroids calm down the flare. I'm 36 years old with 3 kids and having the same fears you do, the future. I have been struggling with this for 8 years (sjogrens)

[rnathans]

I am glad you had a good visit with your doctor and you are feeling more hopeful. I would avoid raglan due to the side effects for sure.
Domperidone is another drug for gastroparesis. Unfortunately it is not approved in the US but can be obtained from Canada or Vanuatu ( except right now with COVID at least the Vanuatu shipments are not getting through. Many with gastroparesis find it helps.

Steroids can be very helpful for a flare but taken long term it also has side effects.

Keep us posted on how you are doing.

[SjoDry]

Cmeeker,

I do not have Gastroparesis, but a friend of mine does. My friend does have SJS and we share the same GI doc. He recommends to all of his patients, a supplement that can be purchased on Amazon (maybe other places also). It is called Iberogast. It is a proprietary blend of supplements. You put drops in your water. She absolutely swears by it & said that nothing else worked for her. Just thought I would share this with you.

Hope things settle down for you.
SjoDry

[meirish]

I am glad that rnathans gave you the name of the drug. I tried to but the spelling came out weird. Ill try again. Domperidone found in Canada according to nathans,,,worth trying. I ordered some meds for about 5 years from Canada and had good luck. I did a lot of research and then called and interviewed the pharmacy and chose the one I felt was the best. There prices were rally reasonable then but I have checked prices more recently and they have increased. They are definitely still cheaper than the US. I don't know if the pharmacies are all the same and just how rules and regs have affected them recent years. Good luck meirish

[rnathans]

Just a quick update. Shipments are once again getting through from In House Pharmacy in Vanuatu ( for domperidone). I pay $147 for 900 pills (shipping is included).. Not sure what Canadian pharmacies charge.

[jazzlover]

I tried Reglan too .. but had bad side effects.

I hope you get help from the prednisone.

I wonder if cromolyn sodium would help you? Many mast cell patients take it and LOTS of them have gastroparesis.