I've taken Lansoprozole for 16 years ......

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Hello, I've taken Lansoprozole for 16 years due to reflux and a hernia. Following an endoscopy in 2000 I was given 15 mg which was increased to 30 mg. Over the years the strength of this medication has been between 15 and 30. I have taken it as prescribed every day. Both my father and brother died from cancer of the esophagus. I recently had a further endoscopy which revealed my hernia was slightly bigger and I had stage 3 ulcers on my esophagus (I believe it goes from stage 1 to 4). The hospital consultant increased the Lansoprozole to 30 twice daily with a further endoscopy in 8 weeks time. I'm hoping the ulcers will have healed by then and left nothing sinister. I know how important it is for me to take these tablets as they could be saving my life, especially at the moment. Although other health problems have come on whilst taking this medication I never made any connection. I've been told my muscles in my lower back, right side have dropped 3 inches and the muscles in my right leg 'have died' also the tendon in my right leg has 'died', together with painful nerves on my right side. I have no strength in my muscles and accepted this as just another condition I suffered from which is very painful and debilitating. I have had two broken feet from two falls over the last 15 years and told I have osteoporosis. I have also been diagnosed with chronic fatigue. In short I've got the worst health problems in my family and extended family, although I have a healthy lifestyle. I just acceped that I didn't hsve good health. I think the muscle weakness is the worst of my problems as this is always limiting and debilitating at times. Since my Lansoprozole was increased a month ago my muscle problems and bones have been worse (if that's possible) and this made me look on the internet to see if anyone else had the same or similar problem/s and I found this really good forum. My biggest problem is muscle weakness and I wonder if anyone else has the same muscle problems as me which also started after taking ppi's. Also problems with bones and/or fatigue once again from commencement of meds. My muscle weakness commenced after 2000 without me making any connection to my meds until it got worse with the increased doze of Lansoprozole. I'm thinking this is a light bulb moment for me as the further weakness coincided with the increased dose. Please let me know if any of you also have muscle weakness and how long you have been on the meds. I know I need to be on these tablets but am thinking although its never been suggested a hernia op might help me. So also let me know if you have had one and if it helps. It would seem a lot of people wish to reduce or stop medication completrly. Please consult your doctor before doing eitherof these things. Hope someone out there can help me because if this is a common symptom I'm going to have to see if an op is the way forward and try and get my life back.

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  • Posted

    Hello there, i hope this may be of some use to you. I was prescribed the same medication recently for acid reflux. Took it for a month and felt so ill eventually it dawned on me that it could be side effects from the drug. I stopped taking it immediately, that was a month ago and i think i am just getting slightly more back to normal. My symptoms were: intermittent shivers, fatigue, my hips kept 'collapsing' on standing from sitting and ached all the time. I had such pain in my sternum right through to my back that although i knew it wasnt a heart attack it felt like what i imagine a mild one to be. I stopped taking them and gradually improved

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    • Posted

      Thanks so much for your reply and info. My symptoms sound very similar - I'm only sorry it's taken me so long to make a connection. My hips, pelvis, and ankles are worst. I need to stay on this medication until my next endoscopy following which I'm going to see if I can have an op or different meds. You have given me hope that once I stop taking them, in time my symptoms may improve. I do hope you continue to improve and hopefully get back to what you were. Bests. Pip

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    • Posted

      Can you share more detail around the collapsing hip?  What does it feel like?  Was it bilateral?  Is it fair to assume that your hips are much better now?
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    • Posted

      My hips started to progressively ache more and more, like a nagging toothache right in both joints. If sitting for any amount of time, i.e. 30 mins, on standing my left hip would not take the weight and i have on several occasions nearly collapsed on the floor. Since i have stopped taking the drug my hips have more or less returned to normal with no pain.
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  • Posted

    Obvioulsy you've got limited options. Why don't you repalce your lansoprazole with pantoprazole. I would say that pantoprazole is the "safest one". I personally would never take ome, lanso, esome. Maybe rabeprazole would be the substitute I would make, If had to. 

    Quite honest, I've heard about muslce weakness almost never. Bone problems yes, but muslces, not really. 

    Since you've been on it for 16 years daily (although the dosage is not worrysome) I would do a blood test for Iron, Calcium, especially Magnesium since that mineral is muslce related. Do that ASAP, also check your B12. 

    What other meds are you taking? What other conditions do you have?

    I'm on PPIs as well for life, because of hiatal hernia, gastritis, gerd. 

    No side effects for now, have been on them 3 years and 3 years on ranitidine zantac. Maybe try to switch to ranitidine 300mg and see how it goes

     

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    • Posted

      So grateful for your advice on pantoprazole. I'm going to ask to try this. I think I need to stick to Lansoprozole until the endoscopy, but will ask to change, I'm also going to ask for blood tests and B12. My other main conditions are asthma (which came on 13 years ago) hiatal hernia, gastritis, gerd - similar to yourself. I'm hoping all goes well with the follow up endoscopy and that I can get pantoprazole. Thanks again for your valuable advice. Pip

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    • Posted

      They all work the same but pantoprazole is somehow the safest in my country. Doctor prescribe pantoprazol almost for every patient and I've heard that some refuse to presribe others..

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  • Posted

    So sorry to hear this Pip9094.  I can't answer your query but just wanted to share some info that I came across.  While I can't relate with all your symptoms, I can relate with the muscle weakness, especially in my lower back/hips.  I also suffer from tightness in my shoulders, neck and sternum (similar to max64053) and brain fog.  Like you, I concluded that PPIs were behind this.  I took PPIs for 5 years before I came to this conclusion.  I am slowly recovering from these some of these symptoms.  

    PPIs rob your body of essential vitamins and minerals especially calcium and magnesium.  Calcium itself is so important for neuromuscular and bone health.   Magnesium is paramount for calcium absorption and metabolism. Vitamin K and D also play a role.  If you are not supplementing,  I would consult your physician.  If you are supplementing, hopefully you are using a chelated version as the typical salts (Ca carbonate and Mg oxide) do not get absobed under reduced acid conditions.  Hopefully your physician has identified any other chronic meds that could be blocking your body's ability to absorb vitamins and minerals?  You mentioned you had osteoporosis.  I assume you had a work up by your physician including a parathyroid function test.  I know I am throwing a lot to think about but my doctors taking care of me were not very helpful or aware of these issues with PPIs.  Even my GI doctor told me that chronic use of these PPIs were not an issue. Best wishes and keep asking questions of your doctor.  

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    • Posted

      Hello, Its nice to hear from someone else with muscle weakness. Mine started in my pelvis and then my thighs and ankles. I too have shoulder and neck stiffness. It's so good to hear that you are recovering (because like Max64053) it gives me hope of improvement especially with advice (from esic) on an alternative PPI. I have taken your suggestions on board and will be asking the GP for various tests.Lansorazole was a relatively new 'wonder' drug when I firxt took it. I was told it was really good but so expensive that I may need to go onto a cheaper alternative which would be just as good. Luckily as it appeared to control my symptoms well I was allowed to stay on it, although as the colour and size of the capsule are sometimes different I think the content must be the same but they are made by different companies so may now be cheaper. Thanks for advice, just a thought did you put any weight on whilst taking lanso? I put on some weight, just wondering if connected. Hoping you continue to improve. Pip

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    • Posted

      I did gain weight but it's hard to say whether it was from lansoprazole or the fact it made me feel bad and I could not exercise like I normally do.  I would think it was the latter.  I used to got to the gym every other day and now it's more like when ever I feel good enough.  Also because of the lack of exercise, all my other vitals are suffering too (BP, cholesterol).  Best wishes.

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  • Posted

    I read the answers to your post with interest.  Whilst I was not on lanzoprazole for a such a long time I can relate to a lot of what was said including the muscle pain.  After  lot of debate (diagnosis of Polymyalgia Rheumatica, followed by Osteophorsis after treatment with steroids) finally got my doctor to seriously consider that my problem was to do with parathyroids.  They operated and found 3 of the 4 glands needed to come out.  Felt much better within 2 weeks of surgery and then started problem with gerd, which I put down to steroids as I had never had any digestion problems prior to this period. Was put on Lansoprasol which was like magic but I became worried about what it might be doing to my general health so set about getting myself off all medication except that for an underactive thyroid (which I have taken for 12 odd years with no side effects).  I am gradually, working hard on exercise and diet, beating the gerd without the help of lanzo and I am coming to think that in fact my problem was always the parathryoid.  There is an excellent American site called which is definitely worth some time spent checking symptoms etc.  If you or any other forum readers end up thinking like I did that this was my problem I would just say make sure you don't allow a general surgeon to do the operation - it is a simple procedure for those that specialize. 

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    • Posted

      Hello Amber, I was interested to read your post. Like you I'm trying to change my diet firstly to help the ulcers heal, but secondly to make sure I don't do any further damage to my esophagus. I thought with PPI's and diet change I'm fighting back on both fronts. Best wishes. Pip

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    • Posted

      I think diet changes (as much as possible but don't make your life m iserable) regular exercise (I try to up my walking every day) and most importantly gradually taper off your PPI (it took me over 6 months to achieve). I currently have lemon juice in hot water each morning (around 1 hour after taking my thyroid medication) and use gaviscon after meals if I need to.  Recently introduced silicolgel - it seems to be helping.  At the moment I am only taking one dose a day before my evening meal.  I would love to hear from anyone who has used it for some time and how often - do I need to take 3 times a day as the instructions say?  Good luck with your fight back to health.

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  • Posted

    I am sorry to hear that you are suffering so much, you sound in a bad way. I used to be on some different PPI's for 2 years on and off, I stopped them completely because I was worried about the side effects. The first thing I had was a drop in my phosphate levels, then a month later, a drop in my Calcium levels, my stomach felt really sore on them, like a dull aching pain. My lower back was killing me, my joints were really sore. I was constantly suffering from fatigue. I decided enough was enough and came off all of them altogether. I found omeprazole and lansoprazole to be the worst ones I was on. I was on them for daily reflux, heartburn and indigestion. I had an endoscopy and this was showing inflammation of the stomach and small bowel. I am not taking anything for this now, just trying to introduce more Alkaline foods in to my diet, I'm amazed that you don't have a B12 deficiency on the pp's after taking them all those years. They can also alter your DNA, and yes Osteoarthritis is very common with these pills. I'm not sure what the alternative would be for you, but I'm very worried for you, if you have to stay on the PPI's much longer. You must be very worried, I wish you the best of luck in dealing with your situation. 👍

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    • Posted

      "I guess you could say, I did my homework. " Looked into as much information as I could with reference to a PPI's, If I were a GP, I wouldn't recommend them to anyone.

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    • Posted

      Ofcourse you wouldn't recommend them to anyone. Just to patients with chronic symptoms and those who really benefit from this drugs like myself for example.

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    • Posted

      Thanks Gillian. I too am trying to help myself with diet change hoping the combination of PPI's and diet change will sort out the immediate problem. Although its my intention to carry on with a different PPI and diet change as gerd is something I have to deal with. Bests. Pip

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    • Posted

      Lol 😂 When I said "I wouldn't recommend them to anyone, I was referring to people that doctors would recommend them to, 'not anyone as in anyone at all". Prevention is better than cure, but pharmaceutical drugs isn't always the answer.

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    • Posted

      Hi Pip, I take it your in Britain, the British population is purported to have a 70% acid to 30/% Alkaline balance in the body, hence, this creates a lot of disease, it really should be the other way around. Disease thrives on an acidic body. All your Alkaline fruits and vegetables should help you, I know what I should be eating and don't always adhere to it, so I guess I'm not practising what I'm preaching. Although I work as a Psychologist, I am a (reg.) Holistic Practitioner. It's often easier to help others than it is to help yourself. You should notice a remarkable difference if you introduce numerous Alkaline foods and reduce acidic ones. Don't know whether you drink alcohol, this is very acidic. Smoking is acidic, junk foods is also. Most greens are Alkaline, watch out for microwave foods, this makes foods acidic. I've introduced Barley Grass into my diet as this is Alkaline. Best of luck Pip 👍

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