Stomach irritation most of time. : Summer in... - PMRGCAuk

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Stomach irritation most of time.

Aleish profile image
39 Replies

Summer in America leaves most patients with docs on vacation and appointments more difficult. Ironically, the ER is for acute situations. The

chronic ones are patched if they can be and then patient is always told to notify their PC or specialist.

My Rheumatologist accepts email but does not always get back. Also, without a phone call, so much gets lost in translation. The group does not have any Friday coverage presently. I’m in a recent practice change because this doc is connected with U of Miami but in my local area where they have a facility. Thought I would get better care!!! My previous doc try’s hard but is mom of two little children and also keeps short hours. I’m still looking for better Rheumatologist here in Boynton Beach, Fl.

I was wondering what otc meds are best for stomach irritation because I need something to hold me till Monday when I can get through to the docs.

My PMR pain is non stop and did better on Actemra with the prednisone but as previously reported had to get off after two years because of dividiculitis. I was down to 5 mgs prednisone and going crazy with pain was told to

up dosage to 20 to get over the current inflammatory problem. I am only allowing myself 10 mgs prednisone because of stomach issues. I like to take my prednisone early morning and usually took with yogurt.

What are most people eating before they take prednisone? I eat breakfast too late to wait to take my prednisone.

Thank you for reading my lengthy question.

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Aleish profile image
Aleish
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PMRpro profile image
PMRproAmbassador

You should be able to get Zantac (ranitidine) or a PPI (omeprazole) from the pharmacy without a script and really you should have been given them to go with the pred if you were told to up the dose. Something like Gaviscon as well would probably help more quickly - the tablets to reduce stomach acid production do take a day or so to work and if you already have inflammation something physical to calm the area down would be helpful.

It sounds as if an acute irritation has become chronic - especially if you already have gut problems. Hope someone is helpful on Monday. It does help to take pred in the middle of a proper meal - I wonder if splitting the dose would help. If you took some with dinner in the evening that should make mornings better and then you could wait for breakfast to take the rest.

Aleish profile image
Aleish in reply toPMRpro

You are all misunderstanding me.

Not in an acute situation. I was treated for the dividiculitis in January but because I had an episode at that time, I know longer could stay on Actemra, which was helping me snd allowing me to get down to 2 mgs. Prednisone. Doc needs to get me on another biologic or steroid sparring medication. I want to protect my stomach which, btw has had stomach issues since years ago with chronic dull stomachache. Just want to know what others eat at 4 am or early morning before they take prednisone. None of this is an emergency room problem. I don’t want Prilosec or anything like it. It does not take away IBS. I do use Bentyl but it’s not the best although at times it helps a lot.? Meds like Prilosec arevmeant to be a short term medication. They don’t allow our nutrients to be absorbed. I don’t have acid reflux. I have IBS. I just asked what others eat before the prednisone.

PMRpro profile image
PMRproAmbassador in reply toAleish

No, I'm not misunderstanding: You asked for advice on how to manage stomach pain/irritation over the weekend - I suggested OTC options since the way you described it it was a gastric problem. And also how to be able to take pred together with a proper meal which is the better option. I never mentioned the ER, it isn't appropriate unless you have severe pain or vomit blood.

Pred often causes gastric irritation and most people who have a problem take one of the things I suggested to reduce the risk of gastric irritation progessing to ulceration. Most are offered it by their doctor. Or they adjust how they take their dose to fit when they can eat a meal.

If you don't like my suggestions, things lots of people have said over the years have helped them - that's fine.

Jbobby profile image
Jbobby in reply toAleish

Hi, I’m on 25 mg Pred for GCA and PMR. Coming down slowly since Jan this year. . I take enteric coated Pred and eat good breakfast before taking it , usually including yoghurt and sometimes olive oil . Some docs say I shd still be on ppi but Omaprezole made me SO bloated I can’t take it. Also one doc said it was inhibiting to other nutrients we take in.

PMRpro profile image
PMRproAmbassador in reply toJbobby

I don't know if you noticed - this post is over 4 years old

Jbobby profile image
Jbobby in reply toPMRpro

whooops! Sorry, missed that. I’m relatively new to this. Only occasionally posted….Must pay more attention.

PMRpro profile image
PMRproAmbassador in reply toJbobby

Happens a lot - how did you land on this thread? Were you surfing or did you get a notification?

SheffieldJane profile image
SheffieldJane

I really think that your severe abdominal pain, coupled with your Diverticulitis and exposure to drugs known to worsen your condition, constitute an emergency worthy of going to the Emergency Room. You have chronic conditions but something acute could be going on that needs urgent treatment. Do not just put up with this, seek medical care, in spite of the difficulties - please.

I have always taken Pred with live yoghurt or Kefir. Are coated Pred tablets available in your part of the world ( which sounds as if it would be lovely by the way)? Undertreating with Pred. Is not recommended. Your doctors need to find a way through for you irrespective of their holidays and childcare responsibilities. You need to assertively insist that you receive proper care. You are worth it! 🌼

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Enteric coated pred is only available in the UK. They don't get a passport for anywhere else!!!

Blearyeyed profile image
Blearyeyed

What medication have they given you to keep your Diverticulitis in check?

Is it ongoing medication or have they given you short term treatments for acute episodes?

What other medication have they suggested , or given you , to cope with the stomach issues and IBS symptoms?

If you aren't on a PPI , like me , and can use alternative and natural means in the meantime ( or in the future) , and these things don't interact with other medications you might be on , you can take a capsule of pure turmeric , omega 3 , and garlic to help reduce the symptoms of IBS and diverticulitis, in the morning , mid breakfast , to help absorption.

IBS / Diverticulitis abdominal symptoms can also be reduced taking prescribed , or OTC, Buscopan ( or US equivalent) each day , BUT ...you do NEED to make sure it won't interact with any of your other medications , or your intolerances , or wether you are already taking a similar form of anti spasmodic . So , taking this without GP , or out of hours , guidance in your case would probably not be advisable.

Drinking more fluids like mineral water and green tea help with the stomach issues , especially in the heat. Ginger drinks like homemade juices with fresh ginger blended in or ginger tea are also soothing for IBS / gastric reflux and Diverticulitis bloating and acid symptoms. Again though , I will emphasize , that if you stomach is already very irritated , or, you are on certain meds , or , have other health and allergy issues , it might not be something you can have.

Keeping up your regular intake of Vit D , a all purpose vitamin / mineral supplement , including magnesium , zinc and selenium and the Omega 3 definitely helps reduce abdominal issues .

Having smaller light meals with lots of fluids ( 5 small instead of 3 big ) reduce the impact of eating on bloating and acid reflux symptoms too.

Eliminating gluten and sugar is also a good way to help self cure these abdominal issues.

All medications benefit from being taken with probiotic live yoghurt ( dairy or dairy free) and a teaspoon of honey ( Manuka or local) if you are not allergic , at any point in the day , and is pretty much a stomach saver if you are not taking PPI or Gastric Reflux medications .

Unfortunately , having to eat some yoghurt even if you are not hungry , or , already feeling nauseous or bloated , each time you take medication , in a "belt and braces " approach even if you are on a PPI , is pretty much intrinsic to stomach protection on long term medications .

Yet again , one of those things we have to do even though it's the last thing we feel like at the time just to stop things getting worse.

Eating and drinking as you are aware with multiple health issues often becomes an unpleasant chore rather than a pleasure , especially at those times of day when your health issues make the thought of eating turn you stomach in somersaults.

I do find that even though I hate the eating at odd times and often struggle through every mouthful at the time I do it , it does help make me feel a little less nauseated a little after doing it and I am glad I managed it.

All those maintained and consistent daily preventative measures do help keep the stomach pains at bay over time , you often realise the real benefit of it when you stop the doing it for a few days , it does more to help than you think.

I did write a post a couple of days ago of tips in the hot weather as a chronic illness sufferer which you might find useful to cope at the moment until you can get back to a Doctor , and as general help for the future. Just click on my name on the reply and you can get to it from my profile page.

It's a shame they stopped the Actemra if it was helping so much .

Was it considered the trigger for the Diverticulitis ?

Was being taken off it temporary until the DVT was under control?

Just wondering if anyone else has both conditions and has been given a medication to control the DVT that lets them continue the beneficial use of Actemra , as it would be a shame if you had to have yet another drug change when you were finding that biologic helpful.

Take care , and really , if you get worse don't just keep struggling on , go to A and E again , or an Out if Hours , and tell them you need some proper help , not just a quick " patch up" , even an admittance might become order so you are in the right place for help if things get worse.

Aleish profile image
Aleish in reply toBlearyeyed

Thanks. The Actemra caused the dividiculitis. That is gone. Never had it before, however with 37 years of CFIDS/Fibromyalgia, IBS is part of it.

I do anti inflammatory diet and when I’m very strict I can get stomach better. I don’t eat gluten as well as grains. I almost never have beans or rice. I was eating some very healthy foods in June but not the type that I should eat.

I was on Forteo for my osteoporosis and finished that two year deal.

I take supplements that are needed unless they are food allergy triggers.

Another problem is that my doc claims that tests are indicating possibly Lupus. I’m a very complex case with the GCA/PMR . Another Rheumatologist that I no longer see was heading in direction of Wegners and mentioned Retuxin. Unless I had positive proof I would never go on that because although it saves lives it can cause deadly neurological damage.

My goal is to stay the course with proper diet and possibly get on another biologic that I have forgotten the name but in an Irish study was promising for PMR.

Blearyeyed profile image
Blearyeyed in reply toAleish

Sounds like you really need to keep at that course of discovering if you are suffering Lupus or Wegeners , or have MCAS issues that add to the allergy and drug intolerances.

I know it's really tiring to have to keep going for test after test, I feel like I'm constantly being produced and poked myself , but in the long run it will determine exactly what Biologic is most suitable for you for all , not just PMR.

It has to be the one , in combination with the right level / types of other drugs , that controls all of your health issues and can free you from most of the pain and symptoms to give you the quality of life you deserve.

In terms of Lupus , it should have been relieved to a greater extent by your Pred dose , and some of the Biologics used for it are also useful for PMR.

When you look through the drug route for most of the AI and Autoinflammatory diseases the drugs used are virtually the same , but it's the combinations required to control a number of multisystem diseases at once that need to be properly sorted out with a full diagnose being essential to that.

But you , like me , already have a number of other health issues going on as well as the PMR , and need some extra diagnosis to help dot the I's and cross the T's. Any allergy issues or General Intolerance coming from undiagnosed problems make the process of finding the right treatment harder too.

Keep at trying get those answers , don't give up yet but maybe rest now until the stomach settles .

I know it's hard , especially keeping up the restricted diet choices , sometimes we do fall off the wagon and think , " For goodness sake I just want a week when I can eat what I really fancy and not just what I have to to take my pills".

Often , we fall off the wagon to eat some lovely fresh , healthy foods , I know I have friends whom laugh at me when I say I'm being naughty by eating a pack of strawberries or grapes or putting beans in my soup , but when you get pain and bloating from lots of different foods , that little thing can be a very naughty treat.

You can do it , xxx

Aleish profile image
Aleish in reply toBlearyeyed

The Actemra with prednisone got rid of most of the GCA. I still have some issues but the double vision, claudication, sore scalp and head blowing up appear to be in remission. The PMR came on with terrible symptoms before the GCA.

First lost 35 lbs without dieting and then became unable to rise from a chair or bending to clean or out of the car. I had to stop driving. The weight loss was 2012?and I had spent less then a year on lyrica but gained 35lbs. So when all the weight was falling off I figured because I was off the Lyrica. I thought the increased pain and physical disability was the years of Fibromyalgia .

However, it was the PMR which did not get diagnosed until 2017 and only because I started doing my own research and requested sed rates. Also was developing high blood pressure and eating the best diet. So when I called my Fibromyalgia doc and told her that sed rates were around 65 and I had double vision, she said get to Rheumatologist ASAP. I got in with the modt horrible guy. I told him immunologist said to get high dose of prednisone ASAP, to save my sight, but he was not listening and diagnosed me with just PMR.

My angel must of been watching over me and I found my Rheumatologist from 20years ago and she got me on 40 and then 60 mgs prednisone. I could not chew without crying. But when I could not handle siding down from 40 prednisone, she got me on Actemra.

When I look back, the fibromyalgia was a walk in the park. I also get gamma globulin infusions for CVID aka PID. I got my IGG antibodies up to 1400 from 400. I get a 6 hr infusion every three weeks.

Rather scared about the fact that there is a shortage in some of the states. People I know in Boston are having difficulty getting this life saving medication.

Sorry for writing so much. Nobody wants to hear my stuff. Most of my family live out of my area and people here are into there own thing.

I’m 75 and can’t believe all this has got to where my husband is my caregiver.

He had a cerebral hemorrhage 3 years ago, but only has a slight bit of brain issues which he dies not believe he has. He has no physical limitations and can drive and take care of the house and me.

I’m a warrior and my son has a two year old and a two month old. I need to be around for a while.

Blearyeyed profile image
Blearyeyed in reply toAleish

Actually it was good to hear your whole story and circumstances and I'm so sorry to hear what you have been through.

I know how people have read your history they might be able to help you with more advice , and understand why your treatment is very complicated.

Unfortunately , many of us with various multisystem health issues can tell very similar takes about the long road to a full diagnosis and the delays in proper treatment over the years because of having things missed during diagnosis.

You are getting there though , slowly though it may be , and as you say you are a warrior and have a reason to keep on fighting to get better care.

Hopefully , we can keep giving you our support and a hand hold as you go through it , even if it is quite complicated or sometimes not possible for us to give you alot of more practical advice.

Take care xx

Aleish profile image
Aleish in reply toBlearyeyed

Actually I can thank this group for my heading down the correct road. I got lots of information at John Hopkins site and then joined your group. The information here was all the validation I needed.

Thank you for reading my story. A bit choppy at almost 9 PM in Florida.

Also just started trying medical marijuana and will post when I find a kind that works for me. Who knew at this age I would be looking into it!!!! 🌺

PS/ also have schrogrens Syndrome.

GOOD_GRIEF profile image
GOOD_GRIEF in reply toAleish

Well, we don't always have answers for you, but we do listen.

Just a thought, but you might want to schedule a consultation with your pharmacist, who would review your current prescriptions and might have some suggestions on how to take your medications and reduce your negative reactions. Some meds don't play well together when taken at the same time, and adjusting the dosages by a couple of hours might help. What you eat, when you eat it and whether your meds should be taken with food or not can effect reactions too. A pharmacist does more than just count out the pills, and their knowledge in these areas is extensive.

You might also investigate urgent care centers near you so you have a spot to go to when it's not an emergency, but your regular docs aren't available for one reason or another. There are a few in your area with xray and blood test facilities on the premises. I've had good experiences with an urgent care near me - much faster wating times than the ER, reliable recommendations as to what to do right away (like get to an ER) or what to do in a few days (the doctor called my GP and set up an appointment for 3 days later as a follow up).

Blearyeyed profile image
Blearyeyed in reply toGOOD_GRIEF

Excellent suggestions GG!

GOOD_GRIEF profile image
GOOD_GRIEF in reply toBlearyeyed

Bleary, if you're in the UK you need to get to bed!

Blearyeyed profile image
Blearyeyed in reply toGOOD_GRIEF

Leg throbbing is preventing any quality sleep at the moment.

I'm trying to do what my Grandma used to do and convince myself that it's a sign that it must be getting better!!😋😂😂😂

My brain isn't as amused by the suggestion as my sense of humour!

in reply toBlearyeyed

Throbbing neck and back for me.....it'll be fine tomrw

GOOD_GRIEF profile image
GOOD_GRIEF in reply toBlearyeyed

Sorry to hear that.

Aspercreme? Freezer gel pack? Heat patch? Whiskey?

Blearyeyed profile image
Blearyeyed in reply toGOOD_GRIEF

Trip back to the Fracture Clinic on Tuesday , and the odd few hours removal of the giant boot is the best I can do just now.

Trust me to fracture my ankle on the hottest week so far !😋😂😂😂

Aleish profile image
Aleish in reply toBlearyeyed

Feel better soon 💕

Blurry62 profile image
Blurry62 in reply toAleish

You'll find, as I have, that people here are always willing to hear your "stuff."

This site has been an invaluable resouce for me practically, medically, and emotionally. You are in the right place.

PMRpro profile image
PMRproAmbassador in reply toAleish

Ustekinumab?

Aleish profile image
Aleish in reply toPMRpro

????

PMRpro profile image
PMRproAmbassador in reply toAleish

The drug used in Dublin. Which also works in Crohns as well as GCA.

Aleish profile image
Aleish in reply toPMRpro

Thank you. Do you know anyone on it?

PMRpro profile image
PMRproAmbassador in reply toAleish

No, only the results of the Dublin pilot where it looks promising. In the UK there might be problems getting funding since it hasn't been approved for GCA so would be off-label use.

Aleish profile image
Aleish in reply toPMRpro

It’s been approved for psoriatic arthritis and I was diagnosed with that a long time ago and on humara although I believe it was inaccurate diagnosis but Rheumatologist believes she can get it through that diagnosis.

PMRpro profile image
PMRproAmbassador in reply toAleish

I knew there was something else - that is very handy. In that case - will you have a go?

Blearyeyed profile image
Blearyeyed in reply toAleish

Definitely might be worth taking up the Rheumatologists offer to get you on trialing that drug for your conditions even if it isn't from rubber stamping your forms with the full proper diagnosis . The Rheumy may be trying to do you a favour there.

You wouldn't be the first person who ended up getting the treatment they really needed by having the wrong diagnosis on the chart.

I would be going through alot less suffering now and less delays getting the biologics they want to put me on if they weren't so obsessed with the red tape , and which department be footing the bill !

Aleish profile image
Aleish in reply toBlearyeyed

I’m able to get away with seeing two different Rheumatologist because I purchased the best insurance and now I’m waiting to hear what sed rates and all the ANA results and others labs come back with and what this highly recommended U of Miami doc comes up with. The one that wants to try the Dublin tested biologic is the other Rheumatologist. I will weigh it all and decide how to get this going. For now I feel very worn out.

You must of been up all night your time. Did you ever sleep?

Blearyeyed profile image
Blearyeyed in reply toAleish

Not much , I have , however , from the non GCA/ PMR related symptoms spent much of the day having a heart to heart with my toilet , and as yet have not been able to swallow anything but the odd sip off water .

Adding insult to injury , so I bet I'm going to be in a great state for the Fracture Clinic tomorrow with possibly 24 hours without my medication on top of the rest.

Honestly , I believe I've been dropped into some sort of Dark Fairytale and fallen victim to a Witches Curse.

I would just like someone to tell me which Frog I need to kiss to snap out if it!😋

😂😂😂😂

Let us know , either by post , or still feel free to PM me anytime what they suggest when all the tests are in , we might be able to at least help put the paperwork and suggestions in some order with you to make your choice a little easier to make.

In the meantime , any problems of the sort of side effect illnesses you are having post it in and we might have some tips to make that easier until you get the real help you need .

Take care , Bee xx

Blearyeyed profile image
Blearyeyed in reply toPMRpro

😂😂😂😂 I thought you might be saying the equivalent of " bless you " ( or swearing 😋) in some form of Italian or Austrian rural dialect !!😂😂😂😂

PMRpro profile image
PMRproAmbassador in reply toBlearyeyed

Moi?????????????????

Blearyeyed profile image
Blearyeyed in reply toPMRpro

Love you Brains!!😘😘

Aleish profile image
Aleish

Possibly!!!

Blurry62 profile image
Blurry62

Hi there!

I've been on prednisone for 16 months. At the beginning, the rheumatologist said I had to stay on OTC Prilosec as long as I am on steroids. Sometimes, I skip a day or two to avoid side effects. Here in the US, we hear alot about this medication, don't we.

I eat a full on breakfast so the pred isn't sitting on an empty stomach lining:Toast, eggs, hash browns, fruit. I swallow the pred with a glass of almond milk.... substantial....I will also share that when I skipped prilosec for more than two days-- stomach irritation was/is the result....NOT ACID REFLUX.....gut pain.

My advice is change your ways. Eat your breakfast early and get that pred into your system. These conditions are so intrusive. Life and schedules pretty much go out the window.

Take care

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