I've just been started on Prednisone or Prednisolone, immunosuppressant steroids, for treatment of Autoimmune Gastritis/autoimmune PA. This has recently, within the last few years been shown to possibly heal AIG, although not entirely cure. It is also used to prevention immune system rejection of organ transplants.
Question: has anybody taken this prescription and if so have you experienced side effects?
Rexz
That is very interesting. I hope you're ok and they are just being preventive and extra causous. I have had Prednisone quite a few times for inflammation in my back and abdominal adhesions etc. Lots of things. It IS helpful, but that stuff makes my bladder leak 🙄 ugg. How do you feel? Is it helping? I didn't know it could do this. Do you know how it effects absorption? How are they administering it? I'm very interested. Good luck Rexz 🦋
Hi EllaNore, I started it three days ago. 40mg oral tablet each morning. I'm feeling not so good. Nauseous, vomiting, diarrhea and overall very grumpy. I was wondering if anyone else had these side affects?
Hmmmm, I'm so sorry it's making you feel that way. i looked it up and it says this. Some side effects, such as stomach upset or mood changes, can happen straight away. Others, such as getting a rounder face, happen after weeks or months.
Its been a while and i know I'm never excited about taking it. But it does help me. I forgot about the weight gain and puffy face. It is hard on some.
Yes, completely not in control of my mood. I've noticed wild mood swings and at times I just snap at my family over just asking me if I need anything. I don't know where this comes from but must be the steroids as it began after I started dosing. I find myself apologizing often! 🙏 It's the most confounding discombobulating thing. 🥴
I'm so sorry Rex! One time I was hospitalized because my leg was paralyzed and I couldn't walk and they gave me something in the hospital I don't know what it was it could have been prednisone they gave that to me often because of my back. But I snapped at the nurse I don't even know what she asked me she probably just said good morning and I snapped at her and I looked at her and I said I don't know why I said that at all I said I am so sorry that is not me. I don't even know why I said it or what I said but it was not nice. I was so shocked at myself. I wonder if it'll get better once your body gets used to it. Is this something that you have to do to keep your stomach cancer from returning? Or is it experimental for you? I wish I had better information for you. Hoping and wishing that you feel better real soon. This isn't so promising, except that once you stop taking it the side effects go away quickly.
goodrx.com/prednisone/what-...
It is sort of experimental for me. There have been cases where steroid therapy to tame the immune system has allowed people with AIG stomach mucosa to heal. It does not cure AIG but rather suppresses the immune system to stop attacking.Yes, having cancer once because of this AIG plus the very extensive precancerous lesions, Intestinal Metaplasia and neuroendocrine hyperplasia in all areas of stomach. I've been having upper GI endoscopies every six to nine months to screen for any of these buggers that want to progress to cancer. But Docs have suggested we may want to remove my stomach. As you can imagine my violent push back on that!!! 😳
Although I was thinking my stomach could make a nice clutch purse or wine flask. 🤣
This trial dose is for two weeks.
Oh RexZ, I'm so sorry. This is serious stuff. 😌 I hope the prednisone works. I know two people that had their tummy bypassed or reduced and they are doing great many years later. It's easier said than done of course, but it is fairly common these days to byepass the stomach in weight loss surgery. Would it save your life and end the risk of cancer for you if you had it removed? I believe they use part of the digestive track as the stomach. I wouldn't wish that on anyone, but will it save your life? At this point your stomach is hurting you, like a cancerous uterus or breasts. Maybe they could transplant a stomach? It sounds scifi but i bet they could. You have to take all the vitamins orally, since you wouldn't be able to absorb some of them. It would be very scary, but i would really consider it. This is informative. nhs.uk/conditions/gastrecto....
Its a huge decision Rexz. Its a big change in lifestyle afterwards, with meals, digestion and possible anemia, but if it's not much different than your restrictions now, it could in the long run, be better for you. Gosh, I'm just so sorry you are in this position. 😔 It is scary to think any one of us could end up there. I will be thinking of you and keeping good thoughts. Do you have to make this decision soon?
Big hugs Rexz 🌸🦋🌸🫶
If I should absolutely need a gastrectomy it will be an entire stomach ginsu chop chop. They'll just hook my small intestine to the bottom of my esophagus, I think using super glue and duct tape. No pouch so i guess I just eat soup. 😳
Good of you to be joking. But I'm sure you're scared. One of my friends was a coach, very large football coach. Tall and big boned. He put on quite a bit of weight. One day i saw him and he was skinny. At first i was so worried he had cancer, but he quickly set my mind at ease and said he had had a complete stomach bypass. They literally connected I think, his small intestine to his large intestine, something like that. He had to take a full range of vitamins every day. And he had to eat lots of small meals instead of few large meals. I think he had to chew meat really good. But he did not say he was disappointed in the surgery or that it caused him any ill side effects that he regretted. I don't know if that will help you in your decision or set your mind at ease a little bit. I just wish you the very best Rexz. 🫶
What would we do without humor. That is definitely what gets me through all this. Find the absurd, the funny, the insanity of it all. If we just not stare at it directly but rather look through peripheral vision perhaps we get another view of our circumstance. 🙏
Also, I feel with this condition, we react very unexpectedly to medications. I know I have to be very careful. And I was not careful the other day and I paid for it very very much. Taking medications is a serious consideration when it comes to us. The side effects can be terrible, even deadly.
Sorry to read you are feeling awful Rexz. Poor you sounds horrible. I do hope things settle down. If not you can go back and discuss dosage or see if another steroid has less side effects.
This is just anecdotal. I found my grandmother in bed, took one look at her. Then bundled her into the car to the Emergency Department. She was put on a high dose of Prednisolone because she had Temporal Arteritis. Inflammation of the arteries around the temples. So, it is rather serious. She responded well but obviously, she was poorly.
Firstly, though my grandmother would only be in bed if she was extremely unwell. It is unheard of. Secondly, she still wanted to drive to the hospital. I gave her the ‘look’ and said, Oh !! Doris behave. It is my pet name for her. Then, when she started recovering, I ensured that she was tapered off them.
I hope others understand you are just rather physically ill and also the treatment. So, can make allowances. Everyone is grumpy when they are vomiting and have diahorrea. A person’s inner dialogue on their umpteenth trip to the bathroom is Oh no, how much more ? I am so exhausted. And many a time, I have nearly fallen off a toilet because I felt like I did not have the strength to keep myself sat up. So, pleasantries and politeness to others is not a priority.
😘
Hi Narwhal, so sorry to hear about your grandma. 🙏I think the family does understand though and it most likely bothers me more than it does them. At moments the anger that rears its head surprises me. Immediately after I am sitting wondering what?, huh, where did that come from? What drugs, steroids can do to ones mind us both scary and fascinating.
Best wishes, Rexz
These steroids will make you grumpy! My Dad has them for asthma when it can't be controlled any other way. But he only takes them for a few days...he gets filthy tempered! I hope they will taper them down soon, but with these drugs, if you are on them for more than a few days, have to be tapered down slowly...often over a year or more. The last 5mg are the hardest to come off without a relapse and must be done slowest. Some people find it best to stay on a few mg. permanently because when they stop altogether they relapse and have to go back to the 40mg dose and start over. Side effects are initial grumpiness (should wear off), puffy face, increased appetite, sometimes initial difficulty sleeping.
Thank you ottolinebear for your helpful insight.My trial dose is for two weeks and there is a number of days where I take much less dosage so that is the tapering off.
Best wishes, Rexz
Massive doses of steroids are what caused my Pernicious Anaemia.
Hello Rexz, before I tell you a story, let me say that I know everyone's story is different and yours has its own particular facts, etc. That said, I'll share a story about my wife. It was back around 2006 or so when both of us were NOT gluten or soy-free. She was feeling rather poorly for several months when we went to be tested for allergies. They said she had no apparent allergies, but they did find that I was allergic to 4 different trees. So while there, the doctor referred her to a rheumatologist. This was a well-known and respected Dr. in the area who was known to be especially sharp. So we went to see this specialist. He thought maybe my wife might have celiac disease, so he tested her for that, but it came back negative, so after a few more visits, he said he believed she had Sjogren's disease. He placed her on steroids, which she was on for one entire year. In the following December, she had progressed to the point of being so ill that I took her to the hospital and she was diagnosed with pneumonia and admitted. She was in the hospital for 2-3 weeks. She was so weak and poorly that I thought I was going to lose her. She became so awfully ill. Eventually, she did recover, but it took about 3 weeks for her to come close to being able to work, cook, etc. again. After that, we decided to go gluten-free which has helped her to not become that sick since. The ironic part about this also is the fact that every time she saw that specialist, I was with her, and my wife would sometimes mention how I always drank when I ate. Just this month I was diagnosed with Sjogren's, so the specialist never caught the fact that it was me who had Sjogren's, not my wife, but she had to endure the terrible steroids for a year that almost caused her to die. Yet once we went gluten-free she has been better since and now with Sjogren's, Rheumatoid arthritis, and several other conditions along with PA, it turns out that gluten is bad for me, so going gluten-free helped both of us. We're now also soy-free, and high fructose corn syrup-free as well. I don't know if this story helps, but I know I am not a fan of steroids. I have also had two separate rounds of steroids, that seemed to help some, but I would always feel nauseated and irritable as well when I was on it. Not trying to convince you to get off it, but just be aware that steroids are some serious _ _ _ _ (meds let's say). Again, hope this helps, and good luck. MJat.
Wow MrJustatip
Thanks for sharing your story. So sorry you and your wife had to sort your way through all that.
Most all of my diagnoses have come from me...my own research and then telling doctors what tests to order. Those that wouldn't order them I simply said goodby and went to another. My first year I went through 14 doctors. I went completely gluten, dairy, and sugar free during that first year, 2020 and it definitely has helped. I'd never considered steroids and don't like them but now am in a quandary. I now have AIG/PA, Hashimoto's Thyroiditis, and most recent diagnosed with Sjogren's. I am one of the fortunate ones that AIG progressed to gastric cancer. Thankfully they found it early enough they were able to excise it. Now four years later my stomach is full of pre-cancerous lesions. So we are doing a trial of Prednisone to tame all this.
But doctors??? I've finally figured out the white coat. Why do they wear it? I've decided it is analogous to the "curtain" in The Wizard of Oz" hiding behind it the true little man who had no power but through fear and intimidation of the loud, fire. Through the wearing of that coat doctors hide all their insecurities. It comforts them like a child with their favorite blanky!
Again, thanks so much for sharing your story.
Best wishes, Rexz
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