Stomach ulcers and Prednisolone

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I really need some advice. A few weeks ago I started getting severe pains in arms, shoulders and legs which came on almost overnight. I couldn't move my arms in bed or roll over and getting out in the mornings it was like I had aged 20 years. Well you all know the symptoms. Could hardly get off the loo or downstairs. All the usual symptoms. I saw my physio who I have been seeing on and off and he thought it could be Polymyalgia. My late mother had had it too. After a blood test at doctors he has put me on Prednisolone for a week to see if things improved. Reading the contra indication it seemed like it was a no no for me as I have a rare condition called Zollinger Ellison Syndrome that means I produce excess Gastrin and therefore stomach ulcers. I have already had 2 perforated stomach ulcers and hence have a small stomach due to surgery.  I am on 40 mg of Omeprazole for life to safeguard another ulcerI also have osteoporosis although this hasn't caused a problem. Since staring the Prednisolone I have had severe heartburn so emailed my gastrointestinal surgeon and he said I have to choose between more stomach ulcers or a better quality of life i.e being pain free. What a choice is that. I am with a new partner who is 7years younger than me and suddenly I have gone from a dynamic 63 year to an 89 year old. Help x

 

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  • Posted

    Oh, what an awful choice.  There really should be more research into alternative anti-inflammatories for PMR. 

         If you chose to go off prednisone, be sure to have turmeric/ginger/garlic tea, and put  those ingredients in lots of curries and stirfrys.  And be sure to eat lots of omega-3 high fish-e.g. tuna/salmon- every day if you can.  This regime has helped me reduce prednisone pretty quickly with no return of symptoms. 

        

    • Posted

      If you choose, not chose! 
  • Posted

    How much Pred are you on? Is the dose bringing you any relief from the pain? At least it might help your doctor to be sure of the diagnosis, as that's one of the diagnostic tests. Perhaps there's some level of Pred that would give some relief, but that won't kick up your ulcers?
  • Posted

    I also have stomach/esophagus difficulties - been on Omeprazole for several years.  Once PMR started big time I chose pain free - not that I have ever reached that desired state - but I have cut down on th Omep.  Easily said, I know, but my stomach problems weren't as bad as yours.  Good luck!

    We all know the 63 to 89.  It does get better. Really!  Hope your new partner is understanding - it's a long journrey for both of you.

  • Posted

    I also have had stomach ulcers (Duodenal) in the past and two operations. I was diagnosed with PR/GCA in January and put on 40 mg pred and 20 mg Omeprazole because of the ulcersin the past, I have now been reduced to 30 mg Pred this week but do have some pain returned, not anywhere near as bad as it was, GP said if it doen't get any better to go up to 35, this is really scary he said the inflamation was his primary concern and moreimportant to get this under control. He alsoput me on Aledronic Acid and Adcal-D3, I feellike a babies rattle! as also have to take 125 mc of Thyroxine for Graves Disease. I really wish there was more research aimed at this.

     

    • Posted

      hi Freda, please see my reply below about lining your stomach with yogurt and sugar free alpro almond milk. Also if you are experiencing additional pain at the lower dose of prednisone do as your Dr says and up the dosage and stay on it for 4-6 weeks then reduce the doses in small amounts and taper down slowly. Good luck, regards, christina 
  • Posted

    Hi Hilary,

    Sorry to hear of your problem. I am wondering, whether there is a different kind of method for taking Prednisone that would bypass the stomach. I am thinking of suppositories or injections. I have no experience in the area of pharmaceuticals, but just thinking it might be something to ask about. 

    Paula

    • Posted

      There are the coated pred which get to the gut before they dissolve. I had those and they were fine and I did not need anything to sort out stomach problems. I am not sure if they would work or not as opposed to the uncoated ored.
    • Posted

      Hello Hilary yes a clash of medications or a clash of medical conditions is always a problem. From my point of view prednisone must be your number 1 medication. if the original dose of prednisone has improved your pain and stiffness symptoms considerably then the chances are you have PMR and if you do have PMR then the only medication that controls the inflamation that in turn causes the pain is prednisone. You have to reduce the dose in very small steps and taper these lower doses very very slowly so therefore you are talking long term.

      now to your stomach problem. I would eat a good full fat yogurt (the full fat helps it stick to the stomach walls) at least 10 minutes before washing down your omeprazole with a small glass of alpro sugar free almond milk, then 5 minutes later wash down your prednisone with a bit more sugar free alpro almond milk. I'm not saying that will cure all but I am saying that line your stomach first before taking prednisone and hopefully that will minimise all potential problems. At the very least try tjis and see if it reduces your heartburn symptoms. I am not medically trained but this is what I do. All the best christina 

  • Posted

    Only 89? But seriously - I know how you feel! 

    Where are you? If you are in the UK you can ask for enteric coated prednisolone which passes through the stomach before being absorbed - that may help. In mainland Europe and the USA there is a form called Lodotra (in Europe) Rayos (US) which is also coated so it doesn't release until 4 hours after taking it at 10pm - well below the stomach. It is also fantastic for preventing morning stiffness - which was why it was developed. I use it, brilliant!

    It is also possible to use depot medrone where oral corticosteroid is not feasible - it releases over a period of a couple of weeks. I'd give you a link but this reply will disappear until it is approved (or more likely, not...). Just use your search engine to look for depo-medrone.

    Whether these options will work OK alongside ZES I don't know - some believe the gastric problems are also associated with systemic pred, it isn't just the irritant effect of the steroid tablets. I do know though that many patients manage fine with enteric coated but get pain immediately with ordinary white uncoated tablets despite omeprazole. It is worth a try at least - even bi-weekly injections is better than PMR pain!

  • Posted

    Thanks for all your advice and support. For the first time in a few weeks I have been able to get out of bed fairly easily today so the Prednisolone is obviously working. Yes I live in the uk so will ask about the coated pills when I see the GP on Tuesday.and try your suggestions re lining my stomach. Does anyone have experience of injections? I really don't think I can cope without the medication.
    • Posted

      People in the uS have said in the past they have had injections - the effect lasts for a few weeks. However, some have said their doctors wouldn't repeeat them which suggests to me that they are the usual local cortisone injections used for joint problems. The depomedrone is different as far as I know since it is injected into muscle and the steroid is then released slowly. My granddaughter was on them for her asthma for a while as a consultant decided her problems were due to non-complinace with oral pred - it wasn't, but the depomedrone did work well for her. 
  • Posted

    Forgot to say I'm on 15 mg of Prednisolone 
    • Posted

      I have only had the direct kind of injection into the shoulder, and it was pretty useless for me. A friend of mine however had a large dose of Pred delivered by IV I think, for MS. He said that it made him see colors brighter, and made everything taste better. I've experienced things tasting better with oral Pred, but I never experienced any visual enhancement! He's an artist, so he thought that was great.
  • Posted

    Hilary, I hate to tell you this, but I had been taking the prednisone for awhile a few years ago (about 6 yrs),  and I am called by my doctors now, "A LIVING MIRACLE"...

    I had a HOLE BLOW INTO MY STOMACH and started screaming with every breath...took them an hour to get me to the hospital, and they knocked me out, and were taking tests, and found that there was AIR IN MY CHEST, so they knew they had to operate to find where the hole WAS......they cut me all the way open, and i had 37 clamps to close the surgery, and my surgeon told me then ,  DO NOT EVER LET ANYONE EVER GIVE YOU PREDNISONE AGAIN!!!   so, I pray you do not have an ulcerative blow out of your stomach....It is truly dangerous....the doctors now give me only 2 mg of  MEDROL, and so far it is holding the pain off, and I am doing some better.....GOD BLESS YOU, and wishing you well!!   Claudia

    • Posted

      Thank you Claudia. I have had that happen twice and nearly died the last time ending up in intensive care for a week. I am so frightened this will happen again. On the other hand my pain has reduced about 50 % since starting the Prednisolone on Wednesday. I really don't know how I will cope without it. What is Medrol? Could it help me and is it safe? Back to my GP tomorrow when I am going to ask to be referred to a rheumatologist 
    • Posted

      Medrol is simply a slightly different structure of prednisolone. It is prednisolone with an extra chemical group added to it. This is felt to make it a more effective antiinflammatory agent.

      All I can say is that I took it for about 9 months - it is the only form of corticosteroid that caused me side effects: massive weight gain, muscle wasting, I grew a beard, and it didn't really work for me, I needed a much higher dose to get the same effect as with either prednisone or prednisolone.

      These days pred is usually given together with anti-acid medication such as omeprazole or ranitidine to protect your stomach from the irritation pred causes in some people. If you have a delicate stomach you should always take your pred in the middle of a meal - eat something, take your pred, finish your meal. Don't take it on an empty stomach or with just a biscuit. Yoghurt has helped a lot of ladies have no problems at all.

      One lady on this forum can't take omeprazole and was very worried about taking pred because of stomach problems - she had GCA and pred is the only drug that can prevent blindness if the GCA attacks certain arteries. Her rheumatologist told her that in all his years of practice, using pred in many rheumatology patients, he had never seen this happen.

      It happens, I'm not going to deny that, but it is not common.  Do you take NSAIDs for a headache? They too can cause bleeding of the stomach. You have to balance the pluses and minuses and that is something to discuss with your doctors. There are other forms of pred that cause less irritation of the stomach.

      I'm afraid Claudia that there are a lot of people on this and other forums who take prednisolone and are extremely grateful for it: without it they would probably be blind. I appreciate it was a horrible experience for you - but you can't tell the rest of the world not to take pred on the basis of your uncommon experience.

    • Posted

      EXCUSE ME EILEENH.......I do not believe I told the rest of the world NOT TO TAKE PRED.....based on my UNCOMMON EXPERIENCE....Wait until you experience what Hilary and I both experienced before you write something like that. What are you??? a big authority on this? I am sorry you took what I said that way, I was talking to hilary with my experience, and i see she has been much worse off with it. Yes, and I know about omeprosole, and am on that to protect my stomach. I did read from others on here that there are some enteric meds that can be taken so that the stomach is not put at risk with the ulcers that form. So, my dear, be careful who you try to harass with all your knowledge.
    • Posted

      Hi Eileen, I do think you are being a little unfair to Claudia.  My question was re stomach ulcers and Prednisolone and she answered my question.  My gastro surgeon said almost the same thing as her surgeon did and this reinforced my view that it is dangerous for me to take this drug.  However one has to weigh up the pros and cons.I explained before I am taking the maximum amount of Omeprazole - 40mg and have for the past 6 years due to my previous perforated stomach ulcers.  If you had ever been through this you would understand what we are both talking about.  I do know that Prednisolone is a life saver for all of us but unfortunately some of us have other medical problems that it may exacebate.  I don't feel she was telling the rest of the world, just empathising with me.  I am unable to take any form of anti inflammatory NSAIDS either as they have the same effect and long term use of those because of a back injury caused my first stomach perforation.
    • Posted

      Claudia, please don't take offence to any of Eileen's comments. This forum is about us all expressing our thoughts and passing on to others our experiences and knowledge. This PMR journey with all its twists and turns, with all its medication complications needs us all to pass on our experiences, and everyone's experiences are as valid as the next person. From  what I know of Eileen she would not have dismissed your experience. She pointed out that for every situation there are numerous remedies and that's what makes this PMR journey so frustrating for us all. All the best, christina.
    • Posted

      How right you are Christina. It is a journey. You guys have much more experience than I but I do know something like this takes over your life. I have made a decision this afternoon that I will just have to accept no Prednisolone unless the rheumatologist comes up with something else as it is a toss up between dying and I'm not saying that lightly given my previous experiences or having PMR and being here. I am just so pleased you are all here as somewhere to vent my anxieties 
    • Posted

      Hi Hilary, don't forget to speak with your rheumatologist about alternative medication. I think Eileen spoke of the coated prednisone that is not absorbed in the stomach but further on down the gastro track thereby less stomach problems. Also, I take my medication with yogurt and alpro almond milk and of course food. All the best, christina 
    • Posted

      I've been taking it as you prescribed last week but still had the most horrendous heartburn this afternoon. Thank you all for your advice and support. Will ask about the coated pills tomorrow. The worst thing is that my younger partner just doesn't understand this and thinks a few weeks of Prednisolone will get me better. We've been together for two years and getting married on 18th April and then honeymoon in Madrid. I can't even see me walking down the aisle at the moment 
    • Posted

      Hey, come on now, you will walk down that aisle. But, yes seriously it is very hard for non sufferers to even remotely understand the recovery process which could be years. If I'm correct there is a DVD that  you can buy from the PMR north west forum site. It is aimed at drs, helpers and family to understand exactly all about this frustrating, annoying condition. Perhaps a copy of that could be your wedding present to him! No, seriously i think it might be of help. All the best, christina 
    • Posted

      Thanks Chtisina, guess my lovely high heels will be replaced with some sensible flattiessad
    • Posted

      You can get some lovely flat ballet pumps, I think that's what their called. They would work a treat. Christina
    • Posted

      I agree with you  Christina.  This was rather like an attack. Claudia has had the most dreadful experience, butl there are other ways of expressing ones disagreement.  Eileen has helped hundreds of people to understand PMR - for that alone she deserves ALL our thanks.
    • Posted

      Constance, PMR is just about the scariest condition I've ever had to deal with. When I was first diagnosed and I looked up the condition on line I thought to myself, oh so this is what I've got. Now I'm on the medication I will be well in no time at all! How wrong was i? This condition has so many twists and turns, the medication we have to take just to keep it under control one day makes us feel we're on top of the world and then the next day that our remaining life is full of worry, pain and uncertainty. 

      This forum is helping me through it all. As I said we all learn off each other, we get to understand that that terrible new unexpected pain is quite normal given PMR is not normal and we are instantly comforted. We get to know that our gps haven't got the answers to everything. And we all definately know that this condition does sometimes make us react in ways that we would not normally react because we are scared, anxious and feel very insecure as just around every corner there pops up yet another challenge. This episode was just that. I agree with you 100% Eileen's knowledge and experience has helped me through some very, very dark days. Thank you Eileen. All the best constance. Christina 

    • Posted

      I'm one of the long term sufferers (now 3 3/4 years).  Never really been without pain (probably take too little pred - Eileen has already warned me about this - but I'm scared of the stuff!!!)

      Greetings from Germany.  Constance

    • Posted

      Were you put on any other tablets at the same time? Like alendronic acid for bone protection?

      A pilot study was done with leflunomide in the Southend rheumatology department which achieved remission of PMR in 22 patients and a I know a couple of people for whom it worked instead of pred although one has had to come off it for other reasons. Perhaps you need to get your GP to send you straight to a rheumatologist or even see one privately for speed. There are a couple of particularly good ones, the one in the south does private work I know. 

      I hate to have to say this, but your partner must understand that whatever medication you can find that may work for you, it is going to be more than a short course. PMR typically lasts at least a couple of years, more often longer. 

      I had PMR for 5 years without pred (simply wasn't diagnosed, not through choice or need like you) and found that aqua aerobics in a warm pool, Pilates and, above all, Bowen therapy, kept me upright and reasonably mobile. Once you can start to move in the morning you can get increasingly mobile just by that movement - then that leaves the bursitis and there local steroid injections may help more than oral pred. 

      The DVD that Christina mentions is available from the northeast support group and you find their site via the first link in the post at the other end of THIS link:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      I'd put it in directly but we have to get permission for links other than within the site. When you join the group you get a pack with information in it and that also explains a lot.

      You aren't the first person to develop PMR just before or soon after a wedding and I do realise what a strain it puts on both partners in such a relatively new relationship - I've been with my partner for well over 40 years and HE struggled to start with with what I couldn't manage any more. And the pain tended to make me resemble a bear with a sore head.

    • Posted

      Ah ha! I am a little first generation English girl (well 53 years old) and my mother was german. Thank you for your german greetings. I hope all is well over there and the weather is fine. Christina 
    • Posted

      Hi Eileen. I have had annual infusions of zolendronate for the past 4 years because of osteoporosis as I couldn't tolerate the oral medication, again because of my history of stomach ulcers. I have seen my GP again this morning and he won't let me continue with the Prednisolone. He has referred me to a local rheumatologist who has a special interest in PMR. I phoned his secretary on returning from the surgery and have an appointment this Thursday. Fortunately I still have BUPA cover although I was going to cancel it in April when it's up for renewal. They have also covered me for 8 physio sessions but not sure if this will be helpful or not.

      thank you and everyone else for all your help and advice. Hilary

      Thanks for the link, I'll get on to it. 

       

    • Posted

      If you do use the physio appointments be very careful - some physios won't touch a patient with PMR. At the most very gentle stretching and massage - and maybe ask if they think there is anything else going on such as hip or shoulder bursitis (part of PMR) or myofascial pain syndrome which often happens alongside PMR and can cause some of the pain we have. Neither respond particularly well to oral pred and GPs aren't too hot on them either. But physio as physio often makes PMR worse - your muscles are intolerant of exercise and even if you can take pred remain in that state. You can increase the amount of exercise you can manage by working on it SLOWLY but don't expect to be able to go to the gym for a while!

      I mentioned leflunomide - there is also a toxcilizumab trial going on for GCA and I think there is talk of there being one for PMR. In all the trials it is used alongside pred but if they think it might help PMR it may help without pred too. Sometimes the trialled substances are used to reduce the pred dose rather than replace it but I imagine anything like that is worth trying - but I think it has been shown methotrexate doesn't work on its own in PMR!

      Do keep in touch and let us know how you get on - because anyone finding an alternative to pred has interesting information for the rest of us. Not long until tomorrow! Hope he has some ideas.

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