Frustrated (as I expect many of you are) to be diagnosed a couple of months ago with PMR as a 55 year old fairly healthy bloke ! Always kept fit and exercised/sport weekly for years despite being often very fatigued after. Unfortunately I completely seized up March/April with typical PMR symptoms affecting mobility. Dr put me on 15mg pred which worked and recently dropped me to 12.5 (slight symptons now) but she recently also prescribed a whole host of other drugs for daily stomach protection (omeprazole) and bone protection (desunin) and alendronic acid. Seems quite a cocktail to be taking for an expected 2 years...
Question: I'm now getting stomach twinges and am concerned steroids are affecting my stomach which i gather can happen - anyone had this problem? Will consult the doc of course if it worsens but just wondered if anyone's had tummy issues?
Good luck everybody with managing your PMR !
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adeorjan
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Welcome! Sorry to hear you've succumbed to PMR, and quite young!
You shouldn't really be having stomach problems - that's what the Omeprazole is intended to combat. But you are particularly susceptible to the Pred you could request enteric (coated) Pred tablets - that would remove the need for Omeprazole altogether. Little difference in the cost, if your GP queries it?
With regards to the bone protection - is that Calcium & Vit D? If so, yes recommended.
AA - before you start taking, ask for a DEXA scan, unless you had one recently - if that's okay, then AA not required.
Expected 2 years..... ? Maybe, if you're very lucky, usually longer, although males do seem to cope better with PMR than females. But doctors will keep insisting in the 2 year scenario! That's minimum!!
Don't let your GP reduce you too quickly. That means not reducing if you have symptoms. Might be an idea to stick at 12.5mg for a while and see if they go away. Would suggest a 1mg drop might be better from now on. 15mg -12.5mg -10mg is a recognised taper, but sometimes it's too much. Get a prescription for 1mg tabs, then you have a choice.
There are a few males on here, who I'm sure will be along with their take on PMR very soon.
Good luck. And discuss medication with GP, you don't want to take unnecessary tablets.
Not much to add to Dorset Lady's excellent advice, except - are you taking your pred with a meal, usually breakfast? Some people find it's enough to avoid stomach problems if they have even a small helping of yoghurt - often the snack of choice for those who take their pred in the very early hours. I've always taken pred after eating most or all of my breakfast and haven't had any problems.
1. I can relate, having a similar health / fitness context, and PMR onset at a similarly 'young' age to you (57), and being a male (either way, a relatively small minority of PMR sufferers).
2. Yes, PMR symptoms often hit you like an express train that seem to come from nowhere, and for no obvious reason. There are various theories as to the causes.. work in progress for the medical profession.
3. Yes, it's frustrating, to put it mildly! Many here would describe the symptoms of PMR and / or the typically recommended treatment (s) for it in much stronger terms!
4. Unfortunately, a host of gastric and other physiological symptoms can accompany both PMR AND also the usually prescribed Preds ('steroids') to manage the worst of the PMR symptoms. Many describe it as a Catch-22 situation...
5. As for the efficacy of AA (Alendronic Acid) / other bone-sparing and digestive 'contingency-managing' drugs to compensate for the numerous side effects of the Preds, you'll get plenty of comments / advice from the experts and others here. I'd better not give a personal opinion on this complex topic, just watch and wait...
6. Yes, tummy issues seem to be common both with the Preds and drugs like AA. I'm fortunate to have escaped them - either because I resisted my GP's 'standard' advice to take AA alongside the Preds or just have a strong constitution. This was based on my instincts and personal health context overall. But for peace of mind, I recommend that you research the AA pros / cons further in your own context....
7. (As important?!): You're in great and trusted company here for a resource of expert / technical advice and support (better than many GPs), not to mention some FUN along the way. Us blokes are in the minority, but it's worth sharing notes from our perspective too. Feel free to PM me if you want a chat.
Thanks for the good wishes and keep us all posted on your progress!
You shouldn't have a problem if you are on a PPI - but are you taking the AA properly? It causes gastric problems too and I'd be more likely to blame it.
If you are in the UK - ask your GP for enteric coated pred (not available anywhere else) and tell him that without the PPI it won't be any more expensive and is also available in 1mg tablets now. I'll give your the further info if you need it.
Yes, as a bloke you may possibly make the 2 years - but there are no guarantees and 2 years is the exception not the rule. So don't set your hopes up too high! Sorry...
adeorjan, just an added thought to add to the excellent advice you have already received. Don't rule out the Omeprazole as being the possible cause of your stomach issue. The PPIs, including both Omeprazole and Lansoprazole, caused severe stomach problems for me and were quickly pinpointed and stopped. Instead, I ate a 'live' probiotic yoghurt with my breakfast each morning before taking the steroids and it proved a great stomach protector throughout my years on treatment meaning that I had no further tummy problems in spite of a 40mg steroid starting dose.
I've been taking Pred since March 2016, now down to 8. I started with stomach problems fairly early on when I was taking 10. This was despite taking them with breakfast and eating yoghurt. I don't take AA and the Pred is the coated version. I can't take Omeprazole, makes the symptoms worse. When it started I first spoke to our very helpful pharmacist, she suggested Zantac, but to go back to doctor, which I did. The Zantac did help and I went back to see the doctor. He prescribed Ranitidine, which I understand is an older version of a PPI. This has worked for me no problems. I take two a day, night and morning. I have tried to reduce to one a day but symptoms return. As for the Pred, I'm reducing very, very slowly. On 8, no pain but the fatigue is bad. Will stay on 8 for a couple more weeks then reduce again but using the very slow reduction recommended on this site. I don't know how I would have coped with this dreadful disease without the help and support of these wonderful people.
No, ranitidine is not an older version of a PPI - it is a completely different drug with another mechanism of action. It is sold under the brand name of Zantac but the doctor will prescribe it as ranitidine, the substance name, and then the pharmacist can dispense it from any supplier and cheaper.
For some reason (marketing by the reps probably) many non-gastro specialists think PPIs are the best thing since sliced bread and SOOOOO much more effective than ranitidine. In reality, the difference is minimal but ranitidine has fewer and different side effects. PPIs are renowned for their side effects - and they don't work at all for about a third of patients.
Thanks. Doctor told me it was an older version of Omeprazole so presumed he meant it was PPI. Back to what I've said previously, check and check again. Still it works for me, Omeprazole just made it a whole lot worse.
Hello, another youngster here (54, GCA only). I just could not tolerate Pred without the enteric coating. Taking Ranitidine instead of Omperazole (can't tolerate it) worked for a bit, but after a lot of faffing, I'm now happy on enteric coated plus Gaviscon. It took about ten days for my stomach and oesophagus to settle and now I take it just at night. I have also had to watch fats in my diet because since taking Pred, I don't seem to digest them as easily which causes indigestion. There are lots of posts covering this topic too and you'll see some are quite happy with Omperazole.
I refused AA's at least until I had had a DEXA scan to prove I actually needed them, which showed I don't but only just. I am taking prescribed VitD/Calcium and having another DEXA in two years as a compromise. I was also found to be very low in VitD which is needed to be able to utilise calcium amongst a host of other uses. It is quite common, so it might be worth asking your GP to test for this if they haven't already done so. If you are low, you need some weeks of high dose therapy before a maintenance regime.
You'll find there is a standard approach by the medics to all this and it suits many. However, one size doesn't always fit all and individuals often have to work out what is best for them. My advice is learn as much as you can so that if you do have to stick your neck out, it is properly informed as there are risks with everything. The main areas of 'discussion' with docs seem to be the bone protection, stomach protection and how fast people taper their Pred.
I was prescribed AA for GCA. Severe tummy aches. I stopped it, without even telling the doc! I now take 1 Ibandronic Acid Mylan tablet, once a MONTH, and it works just fine. Don't be forced to take AA. There ARE other options.
It's a different bisphosphonate so it has different side effects. And is only once a month orally or once every 3 months as an injection. Still a bisphosphonate - with all their downsides otherwise.
I am 58 year old male and have some relevant experience. I am a terrible writer so please excuse this ill structured chat. Being a Kiwi I never learnt to write or read that well. I was diagnosed in early Feb with PMR and started on 15mg. I had a very sore stomach and was often taking the pred before breakfast. In early March GCA was diagnosed so I went to 60mg which on the first day I took the catch-up amount on an empty stomach in the afternoon, the stomach didn't like that much at all. I then read the instructions which said take with food so since then I take them straight after my breakfast of gluten free weetbix with yogurt and egg on gluten free toast and haven't had any stomach pain since.
I have read the PMR GCA survival guide by Kate Gilbert which is excellent and have made quite a few life style changes, like going gluten less, always have a nap in the middle of the day, no hard exercise, I use to be a serious mountain biker. My "rumey?" as you call them is pleased with progress and has me down to 10mg a week ago. I have mostly good days. Sometimes it feels like I have taken up rugby again. I am enjoying being on a lower dose that allows me to think straighter and do a productive mornings work as well as getting a better night's sleep.
I use to eat at least 6 big slices of bread a day and quite a few biscuits. My sister is a bit of a health nut and reckon it might help/lower the inflammation. I am not gluten free entirely I would describe myself as gluten lite ie not doing the 6 big slices of bread or eating museli like I use to but still more than happy to eat some gluten every now and then. I have replaced biscuits with raw nuts.
Not so sure about gluten-free - but low carb, low sugar is definitely anti-inflammatory. So if you frequent the Free-from aisle you won't really help yourself since manufactured gluten-free is definitely sugar-heavy!!
Thanks PMRpro. I am trying to go low sugar as well. I have given up beer and wine in favour of whiskey especially since it is winter here now.
Also thanks very much for all the advice you Aunties have provided to everyone. I have found it very helpful reading other peoples posts and having your informed comments it is very much appreciated.
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