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A warning about use of Lansoprazole (and possibly other PPIs)

Ballybiscuit posted a reply on another thread which we feel needs to be made more prominent:

"I have taken them for 5 years. I have recently had a CT scan for a cyst on my kidney. I got a phone call 2 days ago from a person who had looked at the scan. He said he was calling me as he didn't want me to get another appointment without him explaining why. He had seen polyps in my stomach and said they were caused by the Lansoprasol I take. I now need an endoscopy to make sure they are just polyps. He also saw what he thinks are cysts on or in my pancreas, so I must have a CT scan on that."

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My reply to Ballybiscuit was

"Re the gastric polyps:

healthline.com/health/lanso...

No doubt the average GP will allege this doesn't happen..."

and

"All the PPIs say (I think) that they should not be used over long periods and the FDA were quite adamant about it. But no-one takes any notice. I'm horrified too - but you know what sort of reception we get when we question how the stuff is used.

My husband has just spent 10 days in hospital because one of the new generation anticoagulants had reached 10x the correct blood level - luckily it was found before disaster struck but he's had a horrible month. They don't need monitoring is the USP - saying that checking now and again would spoil the company's profits. It won't be long before there are class actions because they realise how many people have died."

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Hi PMR - I am concerned by your comments re new generation of anti coagulants and your husband. I have just been put on apixiban with next appointment in July following post surgery dvt. I questioned the physician just patting me on the head and sending me away with a load of scary drugs to no avail. So am not happy less so having read your post. Side effects on the patient notes are also scary - things cited as rare are 1:100. That doesn't seem very rare to me! They are very good at distorting stats to suit themselves! It feels like I am sitting on a time bomb under the sword of Damocles and I am right to be concerned, it seems. If you have time, I'd be grateful for some more info. PM me if you would prefer not to put it in the public domain. Thanks

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I've already posted about it so I'll happily reply here:

Both of us have been on warfarin-type a/cs for years. Suddenly I couldn't control the INR, it was all over the place so I switched to Pradaxa. It is taken 2x daily and there is an antidote - major factors at the time in the choice. I had refused them a couple of years earlier, I said I'd wait until the teething troubles were over and there was at least an antidote! I notice that every couple of months I suddenly start to bruise a lot - which suggests to me the blood level is getting rather high. I spread out the dose for a couple of days, the bruising improves and back to normal dosing. But there is always a niggle at the back of my mind. Rather bigger now!!!!

OH was switched to rivaroxaban because of the convenience - no blood tests. Last year he was diagnosed with prostate cancer and treated with radiotherapy - no real problems at the time but we were warned that rectal bleeding might be a possible late consequence, usually considerably later. Over the summer he was ill and in hospital because of fluid on his lungs, probably due to right heart failure because of the lack of one lung, removed because of a teratoma 26 years ago (not lung ca). It became apparent his previous diuretic hadn't been working well and it was adjusted. As a result he lost a few kgs - obviously all fluid - but no-one thought any more about any potential implications of that either. In December while on holiday in Malta he had some rectal bleeding and as soon as we got home he went to the GP and was sent straight to hospital. There the surgeons eventually found the source of the bleeding - the radiotherapy damage - and also found the blood level of the rivaroxaban was 10x what it should be. Had he had an accident he could well have bled out before they could do anything. Normally that is treated by pouring blood in at the top while it drains out at the bottom - eventually the a/c level falls enough for clotting to occur. There is an antidote for rivaroxaban and apixiban but it was only approved by the FDA in May - I don't know if it is approved in Europe nor if it is widely available - obviously you need it there and then.

It is likely the weight loss contributed to the high level for him and it was a perfect storm of factors that all coincided to make it all so awful over xmas. Whatever - he spent most of 2 weeks over xmas up to NY in hospital, has lost a load more weight (down to under 50kg at 5'7") and is very very frail as a result, he was pretty skinny before. And he has had to have abdominal clexane injections for anticoagulation for a good 3+ weeks - ouch. The surgeons told us that they see it all the time - patients come in for surgery but it must be delayed until the blood level has fallen enough for clotting to occur. And that can be 4 days or more - not the 24 hours they claim for procedures with a low-risk of bleeding, they do suggest 72 hours for highbleeding risk surgery. So there it is no better than warfarin which takes days to wash out - but in the case of emergency surgery they just give vit K and that reverses the effect quickly. That doesn't work for these new drugs, they don't work via vit K. When OH said he'd not taken the rivaroxaban for a couple of days one woman surgeon said "Just as well - you'd be dead otherwise!" (lovely bedside manner!).

These NOACs are sold as needing no monitoring, that is the attractive aspect and that also justifies their high cost - but there are several factors that seem to lead to higher blood levels than is safe and bleeding can be a major risk. Adjustment to lower doses is known to result in a far better level of safety and reduced bleeding events - but that means recommending monitoring, thus losing their USP so the companies won't do it, and there may not be an easily available blood test, our local hospital is apparently the only one in the region which can measure rivaroxaban in blood.

Needless to say, OH is going back to warfarin and we are hoping they will let us do the monitoring at the hospital as it used to be - it was changed to being done by the GP and that was far more of a performance for us and that contributed to the decision to switch. We have to drive to the GP in a different village and wait along with everyone else. Then she has to set the device up, the finger prick doesn't bleed well enough, she runs out of strips, the machine is "down". At the hospital it is about 50m from the train station to the phlebotomy clinic and INRs get priority, you can be in and out in 20mins - (and then you go for a walk and a coffee in town before collecting the result). Or now, they email it to you later in the day.

They say the NOACs are suitable for the patient who is not averse to risk - and the doctors too I suppose. I do wonder how clear it is to many doctors that there are such risks - and the paternalistic attitude of a pat on the head would have meant I'd have demanded more background on principle! They are aware of renal function being a factor and check your creatinine level - but one surgeon said that even a UTI can be enough to mess up the renal excretion.

So that's our story - another example of what the doctors say is safe isn't always...

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Thank you so much for such a long and detailed reply PMRpro. The amount of time you have have invested in doing this for me is really appreciated. You and your OH have had a horrid time - I am so sorry and wish you both well. Thanks again.

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Thank you - my pleasure!

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It's very easy to check an INR at home with a minimum of training. I have been doing that for at least 5 years. I just phone in the results to a recording service and later the same day someone calls me back with instructions.

I absolutely agree about the new generation anticoagulants. I was offered one once and politely declined because I would rather know my INR.

One issue I have with warfarin is that NSAID's are no longer allowed. I used to wean the prednisone as I restarted the NSAID's and that approach worked well for me in the past.

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We don't even need the adjustment instructions, we can do that for ourselves usually - no-one could get it right when mine went mad. However, the cost of monitoring it ourselves would be very high since the devices are pretty expensive to buy in the first place but the disposables are even more expensive. It all depends on the system.

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I don't buy the machine but I don't honestly know what happens to it if I no long need it. The strips are supplied and billed to insurance. The strips seem expensive so I assume they cover the cost of the machine as well. There is also a monthly service fee billed to insurance. I have a small copay. The dose adjustments are handled by a pharmacist at the hospital I go to. My doctor orders the service annually but is minimally involved otherwise. I could probably make my own dose adjustments too. When my INR goes crazy, a pharmacist evaluates medication changes/interactions and every other possible reason so that is helpful.

Briefly, I will describe how I ended up on coumadin for life because they suggested that prednisone may have played a role. There were a few contributing factors that were plausible explanations but they seemed unlikely. The factors were a recent Gi infection but I was fully recovered, a recent medication change due to PMR, and a flight to and from Europe 3 months prior.

I noticed some shortness of breath but I didn't think it was anything too serious. I walked into an urgent care center which was only equipped for minor health issues. When they took my vitals people started going crazy. A doctor showed up and said an ambulance had been called. I asked why. She said something about not being equipped and I needed to go to the emergency room. I said I would take myself but I had no intention of doing so. She said that they wouldn't let me leave and we argued a bit until the ambulance arrived.

In the emergency room they asked what was wrong and I calmly recounted what had just happened so they ordered a chest x-ray. I went to x-ray via wheelchair but I offered to walk back to the room. I was being monitored and soon alarms sounded everywhere and people were racing around. A couple people ran past me but soon a crowd formed and were they were asking if I was alright.

One thing led to another but briefly a CT scan was done and a doctor said I was going to ICU because of a PE. I protested and asked why I wasn't having any chest pain. He was incredulous and said he didn't know.

I spent 3 days in ICU for what was called extensive, multiple, bilateral, acute pulmonary embolus of unknown etiology --- a cascade of blood related events and possibly caused by prednisone. They even claimed the lack of pain was prednisone related.

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That is the basic difference - I would have to pay for mine myself! As I say, different systems.

I have atrial fibrillation which is why I need anti-coagulation and that is likely to be for life. The a/f is felt to be due to the autoimmune part of the PMR/vasculitis having damaged the electrical cells in the heart. What is certain is that the a/f is closely linked to the vasculitis as when the PMR flares, so does the a/f - verdict of the cardiologist. OH has a protein C deficiency, a genetic problem, and will also be on a/c therapy for life.

That's quite a story - you were lucky!

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Desperate we all are pro for medical fixes! Apixaban myself! Who knows! Same problem with INR.

Hope your good lad is getting some weight & strength back. ATB

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Concerns echoed by ourselves. Husband suffered a nasty internal bleed last summer after he was put on rivaroxaban after a pulmonary embolus. Would like to send details of two papers, but worried about confidentiality, any tips?

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Confidentiality? You can always use the chat function - click on Chat on the top bar and it brings up a page like you use for posting except it can only be read by the person to whom it is addressed. You enter the person's user name and press return. If you want to chat/message with more than one person, add another name...

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I questioned AA and was told I need it to protect my bones because of Pred but who is to say my bones need protecting when no tests have been done because I believe I am over 65 and bones must be weak. Got frosty reply from GP but am going to ask for private scan

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For similar reasons I booked myself into a Nuffield Health hospital for a private Dexa scan. Whilst I understand not everybody is in a position to pay, for the sake of my health I thought it was important. It is so quick and simple and I think it was in the region of £125. No referral necessary. Just rang them and told them I was on steroids. Went the following week. Two years later I did the same again. Hope this helps.

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Thank you. I am going to pay if my GP doesn’t offer me a decaf scan

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Ps did you get a good result

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Thankfully results show that my bones are very good. I am 73.

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Hi,

I had same and I have never broken a bone. So I took them for 2 years and stopped 5 month ago. Will not take them again without a scan. None of the doctors have asked if I still take them or noticed that i have simply stopped ordering them on my monthly prescription.

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Not being rude but are you over 65. Seems if we are we have to beg for certain scans or investigations. I am going to ask for a decaf scan

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Only by 6 months but I still get met with an assumption I am old. I continually have to point out I still work so will not ever take anything that makes me drowsy. This usually net with surprise. We are labeled as having an old persons illness

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I’ve just been given a bone scan plus 3 other scans, I’ve been on pred for two years now. This was requested by my fourth consultant who is worth more than the other three put together. Ask for one - we should all be getting the same treatment!

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This is rather worrying.....I've been taking this for over ten years. Maybe I'll take a holiday from it .....

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Get a check just to be sure , they should monitor the effects on your body of any long term drug use.

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You will need to taper off them and perhaps have your doctor’s advice. You will probably get an emergence of gastric symptoms.

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As SJ says - don't just stop taking them. After long term use that can lead to rebound acid production that is worse than originally. They need to be tapered - and/or substituted by something like ranitidine which has a different mechanism but the same sort of effect.

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How to try a taper, I have been taking 15 mg for quite a few years. I forgot one day and by mid afternoon had terrible reflux and burning in my throat!! Perhaps take every other day? I have never been aware of such dreadful side effects☹️☹️☹️☹️☹️

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That is exactly the problem.

Possibly use a different medication on the off-days - such as ranitidine (Zantac) which also reduces acid production but in a different way. After a time on it you can try reducing the dose of that perhaps more easily.

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Thanks so much for highlighting this issue for us all PMRPro.

It's good to insist on your GP monitoring your condition , especially kidney and liver function for all long term drug use.

And if you take a long list of medications it is always good to be proactive , make sure that the new ones added to the list don't contradict with old ones they had missed in your history .

Make sure you go to those annual drug reviews or request one.

Don't miss any MOT checks that get sent from the GP , they are not just admin they are important.

If your GP or Consultant doesn't offer you a regular check of bloods , urine levels and for some drugs , tests like colonoscopy , urinalysis or endoscopy, eye tests etc. make an appointment and insist on having your function tests done.

It really can save your liver , heart , kidneys , stomach , eyes ........ Life!

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I was only prescribed them when I returned to UK in Jan 18. Don't know if was an omission deliberate or otherwise byy French GP. I didn't like the idea of them so told him theyaree nauseous. Didn't want to upset him so early on in my GP management strategy! So have relied on yoghurt .

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Never been mentioned here except when I needed a week of high dose NSAIDs. I suspect it is an English-speaking thing...

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I took 1000mg Naproxen (coated) daily for 5.5 months, but no suggestion of a PPI....probably because I luckily had no stomach issues.

Now taking my Caltrate (calcium, magnesium, vit D), it’s got to be done with food.

Bring on the plain, full fat Greek yogurt. I’ve also found a vitality mix for women comprised of yummy seeds, nuts, dried fruit and dark chocolate that gives me 50% dd calcium in 1/4 cup!!

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Ooooh - that sounds yummy!!!

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You actually chose my breakfast smoothie this morning , I agree , I was given stomach protection meds , chose the food route instead.

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Mmm OH takes this, when he was in hospital at christmas he was told he had some 'abnormality' with his kidney and liver, don't know anything else yet as he was discharged without a follow up appointment so now having to get him to docs for a referral...it was like a cattle market - they needed the beds...... He only told me what had been said when he got home! He knew what he was doing by not telling me - didn't want to stay in a minute longer..... Could it be this drug?

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There does seem to be some suspicion of PPIs leading to renal problems:

ncbi.nlm.nih.gov/pmc/articl...

renalandurologynews.com/chr...

If you google the link between PPIs and renal disease there are some very interesting reads...

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Certainly won’t ignore this - conversation with doctor next. Thank you.

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A close friend of mine who is a retired pioneering renal transplant surgeon was taking PPI for some time, he has kidney failure and ironically is now awaiting a kidney transplant, He sleeps attached to a dialysis machine and at his age a replacement kidney seems unlikely.

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Do they think the PPI was implicated?

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I don't expect "they" do, (I do though) because I have seen/heard from a reputable source that the PPIs can cause this sort of problem, but I'm not sure that I could question my friend about it - he was at the top of his field and it would feel rather cheeky for me - a non medic - to do so. I come from a medical family - my father was a highly thought of neurologist - I learned that in the obits published in the broadsheets and his entry on the Munk's Roll, but I am just a humble musician! If I hit upon an appropriate moment to ask questions then I will, and get back to you, but don't hold your breath! I think my friend is too embedded into the "establishment" to have thought about asking pre-emptive or with hindsight questions. If that makes sense. Also as a transplant surgeon he would not have thought twice about pouring anti rejection and many other drugs such steroids into people post op.

I also have a couple of friends who are pharmacists who were shockingly blase about taking drugs such as HRT and statins, for example and who are now paying a heavy price with a plethora of conditions such as Alzheimers and other distressing things.

Children of the medics were the post war Britain guinea pigs a propos anti-biotics and are now paying a high price in later life for those dubious priviledges.

Not a very well written response, I'm afraid, but you'll get the gist, I'm sure.

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Oh I do ...

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Thank you for the information. I took AA and a PPI some years ago for three weeks before a nurse friend said one or other was probably the cause of my brand new IBS I stopped taking both in spite of assurances from both GP and Consultant that neither of these drugs could possibly be the cause. I still have the IBS as a souvenir. 🤬

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It may not have caused your IBS , but from the experience of AA/PPI thing it's why I turned to food , it definitely seemed to make mine worse.

They appear to have an effect on the fluid / lubrication in your body.

They also affected my dry mouth syndrome.

So I preferred to go the food route and look after the things I already had , not create more .

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Was on pred at the time so used yogurt with my pred which sorted the IBS but still have problems, some foods, some new meds, getting overtired and occasionally for no obvious reason. 🤬 doctors. I’m very wary now and research any new meds before taking them.

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Have you tried Turmeric tablets and ginger , I am not a alternative guru , I only take what I try and find really helps , but I found more relief with these than all the drugs put together.

Are you on buscopan for the IBS?

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Haven’t tried Turmeric but have been to India for three weeks three times eating vegan meals and never had any problems, never made any connection, thick or what, will give it a try. My usual go to is peppermint tea and ginger. Buscopan was not a huge success. Thanks for the suggestion of Turmeric will give it a try.

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Since going vegan, my granddaughter has reduced her asthma attacks from repeated hospitalisation after hours in resus being stabilised to the occasional wheeze with a cold. Why? Who knows - probably dairy, but why it suddenly got so bad but wasn't continuous problems isn't clear. But I doubt we'll be experimenting much!

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Probably the dairy , it creates more mucous.

But it's all swings and roundabouts in finding food or nutrition that helps or is making you feel worse.

And just enviroment and weather changes or other minor infections to ' Normals' can cause odd fluctuating changes in our reactions can't it.

It's definitely not all stress as the GPs would like to excuse it by though!!

I am low dairy but on doing research found they still recommend use of probiotic or fermented dairy even if milk etc is a trigger . Something to do with the change from fermentation. But dairy free people can still have kefir and non dairy probiotic yoghurt and products to replace the dairy ones with the same good but effects.

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I believe the mucous theory has been disproved!!!! Who knows ...

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Yes , true, probably true and untrue it's all about individuals isn't it as much as patterns .

It's the Lactolose morecthan the dairy that's the issue for most isn't it?

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I take the supplements from the health shop , but also put some in food and smoothies.

I only took one , not two , at first , and only take two or more when my symptoms are really playing up , (worked better than the buscopan)

The reason for this is that it can make your bowels loose in the first few days when you first use it , and I wouldn't want you put off by this as an initial effect , give up straight away and lose the possible benefits.

If of course , you were still having very loose bowels for more than five days , it may not work for you , or smaller doses of a tsp of food turmeric in a soup , stew , juice or smoothie won't do this but will have some effect.

Lots of fluids , mineral water to replace the salts and green tea for its soothing antibacterial qualities , any natural flavour. I am also gluten free , and only use natural sweeteners like honey and Stevia , a low processed diet and red meat rarely , mainly chicken , fish or veggie meals . The ginger is soothing each day , I drink Pukka three ginger tea , really helps the cramps especially at night and relieves nausea in the day.

I also have a blob of fresh ginger in a smoothie or juice each day and the Pro biotic yoghurt and honey , to help ease all the stomach acid and nausea symptoms , keep stomach balance and prevent infections from bad bacterias.

This has helped me over the years , and my OH with his diabetes related stomach issues , it's worth a try , I only ever advise suggestions based on my own experience , and turmeric was definitely one that surprised me in its efficacy.

Let us know how it pans out.

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Only eat red meat once a week at most and its always green or peppermint tea and an occasional Bunderberg Ginger Beer which is carbonated so not often, otherwise it’s tap water or fresh fruit juice. Don’t have cramps or nausea, guess I’m lucky with that. Many thanks for everyone’s help on this. Don’t usually have a great deal of trouble with the IBS this flare started when I was given oral iron for my anaemia but once it starts it sometimes forgets to stop.

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Ah! The iron !! Didn't know about that , yes that does that to me as well.

Increases the IBS , cramps and constipation symptoms in days for me personally , don't know about others.

I have to try and keep anaemia at bay without it , and take a vitamin , mineral supplement without iron for that reason.

So it could be the iron.

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Oral iron gives me the runs (and how!) - and I have a cast iron gut!!!

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Mad isn't , just goes to show the completely opposing side effects we can have on the same medication based on our individual bodies or issues.

You can't stop , I can't go , my friend comes out in hives !

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When AA resulted in tummy problems, I was switched to Lansoprazole. Last year, that too gave me gripes, so I told GP I was coming off them. I take Gaviscon if I feel reflux/discomfort, and take natural yogurt with my am 7mg Pred.

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The yoghurt , honey , ginger is the way to go for me too

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Lansoprzole seeriouly upset OH's bowels so he was prescribed Omeprazole(/sp) which he's not taken.

Stomach and guts do seem to be settled.

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That is a very common effect - but try persuading a lot of GPs that!!!

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This is extremely concerning since I have been taking this recently having been prescribed it following vomiting 'coffee bean blood' necessitating two emergency endoscopies. This incident occured whilst I was waiting to have humerus bone replaced following a fall. Nothing major found during endoscopies, so vomitting was put down to reaction to trauma (broke the ball joint in left shoulder), coupled with the strong meds I was taking for pain. They asked me if I had reflux issues, which I think I was having previous to incident as I had been taking gastro resistant pred without food for quite a while. Since they were gastro resistent I didn't think I needed to take Omeprazole prescribed at the time. My GP didn't argue otherwise.

So given I was just shy of requiring a blood transfusion following the vomitting blood incident, what is the alternative to Lansoprazole to help with the reflux issues which have been better since I have been taking it. Any advice / thoughts welcome. I have to add I have been having major constipation issues since being on a whole concoction of drugs since accident (prior to) and post op (op was ctually on Christmas Day - lucky me!).

Seems treating one thing, causes a different problem - vicious toxic cycle! Am desperately trying to reduce pain meds in an attempt to break the cycle, though gum / tooth infection has necessitated additional antibiotics on top of everything else. Throughout it all though I haven't increased pred which has been at 7mgs for quite a few months.

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Hi Marilyn, I was prescribed lansoprazol back in October when I first started on pred, took it for two weeks then switched to gastro resistant preds (after discovering about them on this forum) so like you I didn't think I would need the lansoprazol any more so stopped taking it. In my opinion taking one less pill has got to be a good thing, if you don't need it, and gastro resistant preds surely mean you're safe not taking ppis too? Anyway again since reading on here, I make sure I take my preds with food, usually porridge, even though I've never liked porridge and make myself eat it! I haven't suffered too much with reflux, was getting it a lot but since stopping the Adcal it's subsided, and also I have found cutting back on cows milk helps too, so I'm now on cashew milk or green tea. Hope this helps in your quest for answers. X

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From what I have read, the issue seems to be, not which PPI to take, but that you don’t take them for a long time. And regardless of what type of pred you’re on, I would always take after food or yoghurt. Never on empty stomach. Taking meds is a slippery slope isn’t it? 🙄

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I don't think you need to worry about taking it at present - these are problems that arise when it is used for years and you haven't got there yet! It is very effective for short term use.

It seems to escape the comprehension of a lot of GPs that there are varying reasons for reflux occurring - and it isn't always pred, whatever they may think. Using gastro-resistant pred reduces a lot of the problem - but there are some doctors who believe it is the prescence of pred in the blood that causes the problem, not pred in the stomach and there may be something in that, especially at higher doses. As others have said - other medication or even certain foods may contribute.

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And that's the scary point of it isn't it .

Not everyone begins on these drugs because of the PMR / GCA.

They might have been put on them

( or the docs tried to put them on them in my case ) years before PMR for other gastric related issues and then over the years as more symptoms never come off them.

A , confession , a money wasting cupboard full of them , keep telling them I don't want them , can't I come off them , still tell me I have to stay on them.

Irritatingly , wasting money on drugs I say I don't take , yet moan or withhold the drugs I need because of money?!

I realised that they were making my gastric issues worse not better years ago and on further reading that there was increase in Eye and Mouth Dryness , so not the best plan as I actually already have that condition , and I have had an endoscopy and two colonoscopies since then with no stomach ulcers or other issues , so the drugs will stay in the cupboard.

I would love to know whose Dad owns the pharma company for this one . Short bouts yes , until you get used to a drug / food regime but forever!!

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Have you tried Ranitidine? I am convinced it was Omeprazol that kick started my PMR, but of course the doctor will not agree, but he did prescribe Ranitidine instead. I also take Gaviscon as and when. I have a lot of problems with reflux and indigestion but endoscopies have shown no problems - my Mother used to say she had a 'Cheap stomach', so maybe I have inherited that! Unfortunately the yogurt etc is not enough for me and I have to take something. I haven't heard anything bad about Ranitidine yet but no doubt it will come!!

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Have you tried Turmeric and Ginger , spearmint ( in food , tea form or supplement) , along with the probiotic yoghurt and honey ( as local as possible) , yoghurt alone would not have been good for me on its own . It needs more foods and fluids are important .

Gaviscon does nothing for me , never has could have drank a bottle with no response when pregnant so I had to choose the food even back then , simple milk of magnesia or a tsp of liver salts occasionally .

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Ranitidine has been in use for rather a long time so chances are any bad stuff is already known and it certainly seems to be less problematic than PPIs.

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You do begin to get very cynical and think half the reason for the choices are money , and the other half because prescribing one thing over the other is of more benefit to the GPs in terms of what the companies would like plugged ( and the benefits of plugging it)

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Try a tablespoon of peanut butter every morning, for the constipation.

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I love peanut butter so will definitely give this suggestion a whirl. If I have it with toast I could kill two birds with one stone.thanks for the suggestion Kariols16.

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My doctor prescribed me omeprazole but because of what I've read on here, I've never taken it. I take pred with milk or yogurt and have had no trouble with that. When doc asked if I needed more omeprazole, I told her this and she piped up, oh you will need to take it eventually 😤 In my 2nd year of this caper and still haven't found the need to take it.

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4 yrs for me, but on very low dose pred for most of it. Dr prescribed same for me too - being such a compliant patient, I never took it! But I’m fastidious about having enough food in my stomach before taking pred - hopefully it’s working 😬

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Ooft I always have enough food in my stomach 😂🐷

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Haha. Well we won’t worry about you then 😁

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👍

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Yep , just said to PMR Pro , I have a cupboard of the stuff the GP despite being told still won't take it off my repeat even though they know I am not taking it.

Pro biotic or dairy free yoghurt , local honey , nuts , fruits , ginger for nausea in tea , juice ( or biscuit form!) and turmeric . Lots of fluids , and as they say , a green apple a day to keep the doctor away.

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Then I'm lucky that I have to tick the items I actually want on my repeat prescription. Would be so annoying to have a bundle of meds in cupboard not being used. Waste of NHS funds isn't it!

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But it is the patient who gets the blame usually - couldn't be the computer could it...

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Couldn't you just leave the unwanted pills on the counter and not even take them home, or are they delivered to you?

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Well that is a good idea haha picturing the pharmacists face if you do this 😆

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It does mean they can be reused if you hand them straight back. Once they have left the premises they must be chucked...

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Not in the UK .

I have been told by the Practice , checked and was confirmed , it doesn't matter if it hasn't even be touched by you , if it has been prescribed to you and put in your meds bag , even if they take it back out , it has gone through the computer system and therefore has to go in the bin. Stupid , costly but I have seen them do it because of the rules.

I don't tick it on my prescription list to prevent so much waste , but if I don't tick the surgery has a system that automatically includes repeat medications if not ticked for after a couple of months of no ticks , and you get a note on it saying refer to GP.

It's a saga.

It helps more for most I think who get their repeats sent through to a pharmacy , then you can make easier amendments with your regular chemist , tell them the score , they adjust and amend.

My surgery has its own pharmacy so makes it virtually impossible to dodge this sort of ridiculous behaviour.

But , not long now , few more tests , to get to GCA/ PMR and....., Med adjustments and I am off to another surgery.

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I’m in UK and if it is handed straight back without leaving the premises it can be reissued. Maybe it depends on the pharmacy?

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It's happened , see my reply to Heron!!

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I have tried giving them back , talking to the GP , every time I go there is something missing or substituted that then needs replacing so I have to choose my battles.

I have even said , but what if I don't want them or want to take them and I am not taking them.

I got the threat chat then , this is important Mrs.... If you don't take our advice on this , and do it , if there is a problem in future we will be less happy to treat you or organise referrals if you did not take what we advised .

Yes that does happen , choosing your battles and having your own GI meds pharmacy at home from all the meds is sometimes many patients choice until final diagnosis and resolution of what you really need are found , then you can tell them where to put all the meds they kept trying to force on you and know you won't be left hanging out to dry.

Thanks for the advice though , helps to see we , the sensible patients , as ever have more logic!!

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🤬 well doesn't your doctor sound like a charmer

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It's not just one of them.

Unfortunately , this sort of GP , Consultant , Doctor reaction is happening all too commonly for patients all over the world.

Can't wait until I have my full diagnosis for my other conditions , I have a manageable med regime , then I am changing GP getting stronger and then I want to start making changes for us all.

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If any GP said anything remotely like that to me I would make a formal complaint. That is bullying and NOT acceptable.

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When waiting for all your tests and definitive diagnosis of what you have with PMR/ GCA , it is unfortunately a choose your battles situation alot of us face until we can be in a safe position to change our circumstances.

The delays in getting things sorted as complaints are made and records moved or amended isn't a cost worth paying for many while still waiting for treatment to be fully resolved.

You learn to negotiate the system , my specialists have organised all the things they can to make sure things move quicker and we don't have to rely on my GPs involvement to get things done. Fingers crossed , not long now , and I will get my say in court!!

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I guess it depends on the system then. Certainly I've never been forced to take any medication nor threatened in any way if I refused something suggested (alendronic acid I flatly turned down). Perhaps because there's no universal pharmacare here doctors are a bit more circumspect when it comes to prescriptions because they know one way or another the cost is coming out of the patient's pocket?

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It's not even a full NHS issue , even an NHS Wales issue , the standard of care UK side has alot to do with the Practice Management of individual surgeries and the lack of transparency , also the complexity of being able to get your rights without potentially harming your ability to be taken on by another practice. The medicine club does protect itself and its members .

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The consequences of years of acid reflux can be catastrophic so I wonder what is worse? As I have posted before, I ended up with 3 stomach ulcers severe gastritis, grade D Oesophagitis and Barrets oesophagus. I had been on Gastro resistant pred and had tried the yoghurt and other dietary help. All the medics I have seen have been adamant that it is pred related. I am on Omeprazole 40mg twice daily and it has worked miracles. I was feeling constantly nauseous and had lost a stone in weight. Now eating normally and putting some weight back. Barrets oesophagus can become cancerous so which is worse? I have another endoscopy on Tuesday so hoping things have improved.

Liz.

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It isn't whether one or the other is worse - but by no means everyone needs a PPI and the warning is that you cannot assume that being on a PPI is entirely safe either. Too many doctors use too many medications without taking note of the recommendations for use. It says very clearly that PPIs are not to be used indefinitely, but authorities rather than the manufacturer - there are other options. But the marketing has been very aggressive - exaggerating the amount that PPIs are better than (for example) ranitidine.

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I had ranitidine initially but it made no difference to the acid reflux. I persevered with it alongside Peptac for a year but it wasn’t helping. I still had the burning pain. I am now extremely concerned about being on a PPI long term. The comparison I was making was which is worse between possible oesophageal cancer from a Barrets Oesophagus or taking the PPI.

Liz.

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I appreciate that - but you do need the PPI and I assume you are also kept an eye on because of the Barrett's. The use of all medications is a balance of benefit versus potential harm - and the PPI used unnecessarily could well lead to gastric cancer, osteoporosis and a few other things. Many of us do NOT need a PPI and do not need to be taking them.

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Absolutely. It’s very wrong to prescribe medicines unnecessarily. I am hoping I may not need them long term or that the dosage will reduce. I have read my leaflet which mentions fracture as a very rare occurrence. Have had a dex scan and my bones are good. I’m only sorry that it took three years of suffering with the acid reflux before I was sent for endoscopy. Maybe the damage would have been less. Thank you for your wise words. I have things more in perspective today.

Liz.

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I get it , I took it at first , and for a couple of years , but when eased asked why I was on it or needed so much. I was like you went down to under 8stone and constant nausea.

I know like with many things , especially depending on your conditions other than PMR the medicine is better than the results.

But also sometimes when you system has had chance to heal or balance it is possible to reduce or even stop certain drugs with the right advice.

I asked for their guidance with food , no help , they no nothing about diet, I researched and tested foods and supplements before removing the drugs in case they made me feel worse , then tapered the meds slowly , really slowly, like six months per reduction. It gave lots of time for my new regime to come in and my system to heal.

I don't take it all the time now , if I took it as long as I had been told , would have been nearly 12 years now , as it is I took it for 3 and a half , I have had colonoscopies and endoscopies since , no return of stomach issues like the ulcers , and I have actually stopped the increase in IBS and constipation and dry mouth that happened on the drugs , even with the very occasional spoon of milk of magnesia or liver salts .

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I would recommend looking at what Sarah Myhill has to say about the symptoms called acid reflux - it can also be due to too little acid in the stomach - she has a simple, cheap diagnostic test involving apple cider vinegar.

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Hope all goes well on Tuesday

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Dear Marilyn. Thank you so much for the good wishes.

Liz.

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As a PS - long term use of PPIs is also a cause of osteoporosis. They make a fuss about pred - but not a PPI. So if you are taking both - which is to blame for the loss of bone density? Or is it the combination? I don't take a PPI, I don't have bone density problems...

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Crikey. I have osteoporosis so really do need an alternative sooner rather than later. ANY SUGGESTIONS,?

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I have been on omeprazole (a PPI) for 10+ years after being diagnosed with oesophagitis and Barrets Syndrome. Haven't noticed any side effects.

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Thank you Ziggy. Sorry you have the same malady as I have. You have made me feel a little more positive.

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Polymy, like you I have taken lanzoperazole for many years. I began the steroid journey then with ulcerative colitis ( always managed to get off them with a flare). I suffer with terrible acid reflux and possibly a hiatus hernia and am in dire straits if I take nothing. Gaviscon helps short term. I see the gastro consultant 6 monthly and have regular colonoscopies. These statements put the fear of God in me!! Am I going to get polyps in my stomach and oesophagus??? Just another thing to fret about along with this blinking polymyalgia!!🤔🤔🤔🤔🤔

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Don't panic , like me you are having regular colonoscopies , and you can request a chat with the GP about your concerns .

Not everyone is the same , not everyone gets the same issues because they take the drugs for different reasons.

For some , long term use may be far better than the effects of not taking them.

It's the same with Pred , it causes issues but is a necessary evil on PMR/ GCA , but the PPI may not be needed for those especially who do not already have gastric issues.

Guidance and going the natural food route first is always better but unfortunately Doctors have neither the time or knowledge on diet to do it.

It always concerns me that the drug is used first before natural guidance , because what then when symptoms actually come in or get worse where are you meant to get the relief if they put you on the drugs already .

With your GI issues , like mine , you need more advice , but even so , a reduction of the dose of the drug is possible with the right , slow changes .

But if you are on them , keeping an eye on any new symptoms and having regular drug reviews and checks is important.

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Yes York. I can identify with the fear. I am now afraid of getting other problems from the PPI.

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Thank you for highlighting this issue..

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What issues was Ballybiscuit experiencing before she had the CT on her kidney?

I have pain in my left flank & going to see GP after l get this Fibroscan tomorrow.

Thanks

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I’ve just found Ballybiscuits post.

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Can you tell me more? I’ve had left side pain for some time now but all tests and scans inconclusive

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Good luck , let us know what they find xx

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Thanks, they are checking to see if my Liver is ‘stiff’ or not & if it is, at what level!

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Not specifically for the pain on your left side ?

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No, the Liver wasn’t giving me any issues, it was ALT Blood Tests that picked it up so then l had a scan, l have a severely fatty liver & pancreas, hence the Fibroscan.

The pain on my left has been intermittent until recently but now I’m getting it everyday, sometimes its subsides quickly, other times it’s constant & very wearing 🙁

There’s always something!

Hope you’re doing OK?

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It's a urine test for you then.

Perhaps you can ask politely when you go to your scan if they could just do a strip test as you are there , they have the stuff( take a bottle , first morning , mid stream urine with you) .

As they say , you can only ask , if not an appointment at the GP as soon as you can , if it is on your left , it could be a stomach thing , it could be a kidney or urinary infection , it could be muscular or part of PMR weakness . But best to cut out all infection possibilities , as I have experienced , tis the season of snow and being fixed up on antibiotics😂😂😂

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Thanks, will do x

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I have been on Omeprazole for 3 yrs. I am taking pills for a slight heart attack in October as well as Pred. Ramipril, Bisoprolol and 80mg Atorvastatin I think I will stop the PPI and see what happens, I am down to 6.5mg Pred this week. Touch wood pain is only slight in the mornings, just weakness in thighs.

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But slowly - not all at once!

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Marcy

You need to discuss stopping it with your GP as you can get a kick back of stomach acid, you need to reduce & have it replaced by a different type to ensure this doesn’t happen.

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Tell you GP first , even if they try to dissuade you.

Ask them to have you checked for possiblec ulcers , gastric issues with an ENT outpatients or endoscopy.

If you have no current issues , there is no reason that you could not slowly taper off the PPI , but don't just stop.

And you do need to adjust your diet , portion size and add things to the diet to prevent the issues of acid reflux or stomach issues that the drug was meant to help first.

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Mmmm, that's interesting. I've been on Omeprazole for 4 years now, 20mg a day. Have had to up it to 40 mg on occasions and had to take Gaviscon around the time I was on the AA. Touch wood, no problems in the last year but this does make me think. Maybe I'll try and wean off it and see how I go. Good job I like yoghurt, but I hate ginger!!!

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Not even in a cake 😋

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Haha....no, not even in cake. Perhaps ginger ale with Jamesons and lime though!!! 😂😂

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Hi

Ii am so sorry to hear of how you have all suffered, my heart goes out to you. I've been on many drugs for years including omeprazole, I had gerd and a hernia 5 years ago , both were fixed but still advised to take omeprazole. Anyway, 2.5 years ago I was diagnosed with non alcoholic steatohepititis with fibrosis caused by all the meds I was on!! I hadn't had had any meds reviews until I saw the best Dr at our surgery who organised for all tests to be done. My consultant said I will need a liver transplant in the end- not what I wanted to hear!!! I get so much pain with it cos my liver is so large and fatty that it has stretched the capsule around it which is what causes the pain as this had all the nerves in it which the liver doesn't. My spleen is also enlarged so I get pain on that side too. Like all of you I have other issues with pain. I only take omeprazole as and when I need it now. Sorry to rabbit on. Lots of love and hugs to you all Lynne xxxxx

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So sorry to hear about your terrible treatment.

Have you been advised to take further action against your surgery , doctors about this.

It certainly seems like a case of negligence if it can be proved from your tests that the cause was your medication and you have not been regularly reviewed or monitored by your GPs.

Perhaps the PMR/ GCA UK website may have some information about how to get legal advice on these matters of you could contact a patient advocacy service for some initial advice in your area.

Please keep is up to date on your progress and I am sure everyone will be thinking about you in the months ahead.

Take care , and come and chat and rant with us anytime , we will want to support you , bee xx

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Thank you so much. I know I have fibromyalgia but my symptoms are also very similar to all of you on here. I'm going to mention it to my GP. Thank for all your support. Love and hugs Lynne xxxx

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I think fibro is very often a lazy doctor's diagnosis - the symptoms of the two are very similar and the only real differences are that some people with PMR have raised inflammation markers - not all, 20% of PMR patients have ESR/CRP levels that are still "within normal range" although it is possible they are raised for them. My normal ESR is in low single figures and at one point it ran at 16-18 for several weeks but no-one remarked on it as that is still well in the normal range. And PMR pain responds to a moderate dose of pred because it is inflammatory. Fibro isn't inflammatory fo neither of those apply.

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Hi

A rheumatologist diagnosed it and then didn't want to know!! My Dr is going to refer again. Take care Lynne xxxx

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Why doesn't your doctor try a couple of weeks of moderate dose pred (15-20mg) and see if that improves the "fibro" symptoms? If it does, it isn't fibro, if it doesn't, you have lost nothing and can stop straight away.

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Thank you everyone for your very informative and interesting posts.l often suffer from acid reflux,l manage to relieve that with over the counter indigestion tablets,sometimes just half of one eases the problem.l stopped taking Adcal months ago,it caused so much bloating and flatulence.The GP said to take one every couple of days but l have not .l have not had a blood test for over a year now,my other GP always sent me every six months for them.l am finding that they are cutting down on those,or perhaps it is my age ,seventy four. I always try to eat healthily and hope that my bones are OK..The pharmacist suggested l ask for coated pred and l am going to do that although l doubt l will be given those if they are more expensive ! Take care everyone ,some of you really do have some worrying health problems and l hope that everything goes well for you .ATB xx.

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Insist on coated Pred , and if they say no request the reasons why.

Most importantly , tell them you have not had your blood or urine tests to monitor your kidneys and liver function in over a year and you are on steroids and concerned.

You deserve the right care , no matter your age .

Take care , bee xx

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Yes, I agree. Don't be fobbed off with excuses, stay out until you are happy. Love and hugs Lynne xxxx

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I’ve recently been diagnosed with microscopic colitis - I suspected lansoprazol was a contributing factor and consultant agreed. He suggested that I take ranitidine instead.

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