Gut troubles

[genius64]

Hi, this is all new to me. I've just been diagnosed with PMR have been on 15mg prednisone but found it has given me weird fuzziness plus gut ache. Saw a Doc yesterday and now taking coated prednisone along with omeprazole 20mg twice a day. I have to say that the ache and pains etc have gone but now I am faced with this medication and it's side effects which scare me. Any advice and support on how to live with this condition would at least let me know I'm not alone. Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Fuzziness is a side effect of Pred, especially initially until your body gets used to it.

Now you’re in the coated Pred you might find you don’t need the Omeprazole as well, but see how it goes.

Have you been prescribed a VitD/Calcium supplement - should have.

You are not alone, and Pred is not as scary as some doctors nor the patient information paperwork might suggest.

Have a look at this - it might be a bit scary first read, but it’s a realistic view of what’s ahead - and please feel free to ask anything, no matter how trivial it may seem - someone will have the answer -

healthunlocked.com/pmrgcauk...

PS - can you put a bit more info on your profile.....helps us to help you, thanks.

[genius64 in reply to DorsetLady]

Thank you for your advice and support, nice to know someone's out there listening to my woes, how good is that. I have a phone consultation with my gp in the morning and I'll be sure to ask about vit D and calcium replacement. Maybe I may not need omeprazole after a while. Tganjs again.

[genius64 in reply to genius64]

That should read thanks 👍

[PMRpro Ambassador]

Which medication do you mean - the pred or the omeprazole?

If you have been given enteric coated pred it is very likely don't need the omeprazole, especially if you take the pred with food. That would remove the layer of side effects due to the omeprazole.

The data sheets list over 80 side effects for pred - no-one gets them all, many people have next to none or only mildly. I have been on pred for well over 11 years, at above 10mg much of the time. I have no identifiable adverse effects - no diabetes, no loss of bone density, my skin isn't bad for my age and any bruising or raised BP is more due to the anticoagulant therapy and the atrial fibrillation I have than the pred!

Most adverse effects of pred can be mitigated or avoided when you know how. A good start is to cut carbs, especially processed carbs, and added sugar and that will reduce the risk of weight gain and developing steroid-induced diabetes. It cuts simple carbs and salt at one stroke - salt often increases fluid retention, causes puffiness and contributes to weight gain too. Ask about specific things and someone will make suggestions that have helped them.

You are certainly not alone - there are over 2000 currently active members of this forum!

[genius64 in reply to PMRpro]

Hi PMRpro, my concerns are with pref and I didn't know about side effects of omeprazole so I'd better look into it. I shall try to cut back on carbs especially after Christmas. Thanks for the advice. I will update my profile, just finding my feet at the moment. This is a great forum for me.

[Kendrew]

Hi genius64. As I know through personal experience.... that is very reliable advice from 2 of the most experienced members of this community. I've been on pred almost 18mths now and was terrified too, and although there have definitely been moments of anxiety and confusion around certain symptoms I've experienced....it's been much less scary than I could ever have anticipated. I've asked for help many times and always received it here so these are just a few things I try to do to minimise any potential side effects :-

- eat at regular intervals throughout day to stave off hunger pangs.

- eat a healthy diet rich in protein with fresh fruit and veg and wholegrains where possible. Keep very mindful of carb intake (and calorie intake) though.

- have regular eye checks

- take care of skin, nails and hair... moisturise regularly (don't need expensive brands...I use Aveeno and buy it when on special offer but whatever suits your own skin is fine)

- keep gut healthy with things like natural yogurt and fermented foods if you like them. I have enteric coated pred so don't require omeprazole and always take them with food.

- regular exercise daily....but always within your own individual capability

- drink plenty of water to support kidney health and minimise any possible tendency to develop fluid retention.

These are just a few things I'm mindful of when on pred and I'm sure there are many other things I could add, but you'll discover your own strategies in time and I'm sure you'll be ok.

This community will support and look after you as it does me. We're all here to help each other and you can ask anything and there will always be someone who'll respond. Don't be afraid. You've got this, and we're all holding your hand for as long as you need us to.

[herdysheep]

Hello and welcome. I am another long timer with pmr but nothing like as knowledgeable as those above. However, I would add that keeping a diary, or at least notes on your own calendar is really helpful. At the most basic - dose taken each day and for the beginning, what time of day if it varies. Add to this how you feel, as it will change and it becomes more difficult to remember what, when! I now add what length of walk I do, as that also varies. Sometimes it is like walking treacle, other times much easier and you realise you are more upright!

Key to survival is to take it slowly, learn to 'read' your body and rest. Keep in touch with the forum - you can learn so much from the experience of others even if it is 'only' to realise you are not alone. One unit energy expended often means at least 2 recovery.

Pred may not be a friend but is a saviour.

[genius64 in reply to herdysheep]

What a great idea to keep a little diary, I've just had a phone consultation with my gp, she has suggested due to my gut problems I reduce pred 12.5mg to 10.5 after two weeks then down to 10mg and so on. She also said not to start vit D or calcium just yet to see how I go. So yes it's very important to write things down, or elce I'll forget what was said.On another note does pred make you constipated. Thank you

[PMRpro Ambassador in reply to genius64]

It can do, yes. Are you on anything else besides the pred? A PPI for example?

[genius64 in reply to PMRpro]

Hi PMRpro, not sure what PPI is.

[PMRpro Ambassador in reply to genius64]

Omeprazole and similar stomach protection medications.

[genius64 in reply to PMRpro]

Yes I'm now taking 40mg Omeprazole, helps a lot, but I do feel light headed, it's like I've been drinking without the pleasure xx😑

[PMRpro Ambassador in reply to genius64]

If it helps - good. But it too can cause problems!