Long term use of steroids

[Everett19]

Had PMR for 10+ years and taking Prednisone in various amounts over those years. Have tried several times to wean myself off but lowest dosage I've been able to cope with is 6mg. I take lansoprazole twice a day.I have now been diagnosed with gastritis following a long spell of digestive issues. Have just had a gastroscopy and waiting follow up appointment with specialist. My GP told me just to carry on with current meds until they've seen me. I also take lots of other medication for other health issues. Just wondered if anyone has experienced similar problems.

[HeronNS]

How long have you been taking lansoprazole twice a day? Although a PPI is supposed to help protect the stomach long term use can cause its own problems. Do you take it because you are on pred, or because of other meds? Personally I can't say that pred has ever bothered me. I always take it with food. However I have had problems in the past (stomach bleed) from taking NSAIDs, and many years ago my doctor said my stomach symptoms were gastritis. it appeared to be from drinking tea, although that's not been a problem for a very long time, maybe, now that I think about it, because I always seem to drink it with a meal or snack.

[Everett19 in reply to HeronNS]

I take it because of preds and was only taking once a day but ended up in hospital 18 months ago with cellulitis and borderline sepsis and they upped it to twice. Totally wiped me out and gone from fairly active lifestyle to being quite debilitated. I now take lots of different meds for other health issues.

[HeronNS in reply to Everett19]

I think tomorrow when Europe and the UK wake up you will get lots of good comments. It can be a very helpful community. Sounds like you've been having a rough time.

[Jane424 in reply to HeronNS]

only snag abut drinking tea with a meal is that it affects iron absorption.

[HeronNS in reply to Jane424]

That's interesting. I suppose the milk in the tea also is a problem, and I do know not to take an iron supplement with calcium supplement. However, there is this little thing known as quality of life, and I'm not giving up tea! I don't drink tea "with" my meals - I just don't drink it on an empty stomach, a habit unconsciously developed over years owing to that early adulthood experience of gastritis. I remember one Lent, not all that long ago, trying to give up milk in tea (that's how as a teen I'd given up sugar). By the end of Lent I was giving up the tea!

[Jane424 in reply to HeronNS]

You sound fine. It is only when people drunk it at every meal. I didn’t knife abour iron and calcium!

[HeronNS in reply to Jane424]

Calcium is the bully on the block - a number of things we shouldn't take with it: pred, iron, magnesium.... I think it's because calcium is so important. After all, our skeleton is what everything else hangs on!

[Jane424 in reply to HeronNS]

Yet they always put Cal-Mag together. Is is OK if less than 500mg at a time?

[HeronNS in reply to Jane424]

I read a book about magnesium once, and apparently the issue occurs when we are taking supplements and there is too much calcium in relation to the amount of magnesium. Calcium stops the magnesium from being absorbed in that case. I imagine if a supplement contains both it will be in a proportion to maintain the balance. When you think about it, in nature magnesium and calcium are found together in many of the same foods. Magnesium is to plants what iron is to animals, so ubiquitous in foods containing chlorophyll, and leafy greens can be a really good source of calcium.

[PMRpro Ambassador in reply to Jane424]

The only meal that merits tea is breakfast - or a full monty Scottish High Tea I don't count afternoon tea as a meal ...

[Jane424 in reply to PMRpro]

A boarding school, we had tea with every meal - must have been so bad for adolescents.

[123-go]

Hello, Everett19. I'm sorry to hear that you are struggling to reduce Pred and that you are having digestive issues.

Would you add more to your profile please? Here is a link provided by DorsetLady that explains why this is important in helping us to help you:

healthunlocked.com/pmrgcauk...

Please don't be daunted by this. Ten years of PMR carries a weighty history so the main points for now could be starting dose of Pred, its effects on your symptoms and your early tapering regimes. Also, as a point of interest, did you have digestive issues before you were advised to take lansoprazole?

Do let us know how you get on with your gastroscropy review.

[PMRpro Ambassador]

It is becoming clear that there is one form of PMR that hangs around for a long time - and it can be sub-classified into two groups: one gets to a relatively low dose of pred, 6mg would be typical though some get lower, and the other is stuck at above 10mg pred long term and causes all sorts of headaches for doctors who don't understand it.

My own version of PMR started 18 years ago and has never left the room! I finally was offered pred 13+ years ago, after 5 years of managing the pain and stiffness on my own. It took me over 4 years to get reliably below 10mg , later I did get below 5mg for a time before I had a big flare in disease activity and was back to 15mg. I managed to get to 11/12mg until just before Covid but my husband became ill and then came Covid and since then I had needed 15mg and up to 19mg since then until my rheumy decided to try Actemra. I am now down to 7mg, I tried 6mg but the fatigue was awful, I could barely keep awake!

I've been lucky - I haven't had any gastric problem despite never having taken a PPI.

[Louisa1840 in reply to PMRpro]

Dear Pro,

You have had SUCH a journey & yet you are always here for us all even after the death of your dear husband. I just want to say "Thank you".

Blessings be upon you.

[PMRpro Ambassador in reply to Louisa1840]

Thank you

[Sharitone]

With a bit of luck, your rheumy will offer some kind of steroid saver, such as a DMARD, or Actemra. I was unable to get be low 15mg, but after almost a year on Actemra, I have made it down to 1 5/8. Still wiped out though!

[bakingD]

Hi Everett

I had really bad gastritis a year ago caused by trying out a strong nonsteroidal as advised by my then consultant- I was so bad couldn’t eat much etc and had a miserable Xmas- chap who did my endoscopy advised Omeprazole but thought I’d try Enteric coated Pred and slowly my gastritis improved- take my Pred with yoghurt - am back to full diet now including curries!You can get Omeprazoke withdrawal effects in the form if rebound gastritis so if you were to try to reduce or stop do it gradually

[Whist]

Yes my reducing was hard half a man a month could you cope with a quarter of a MGM a month?steroids are so bad for long term health

[HeatherZim]

your PMR journey sounds similar to mine. I have had the condition for 8 1/2 years and have never been below 5mg of Pred. I was delighted that I managed that in October when I was felled by a horrible flare and had to up the dose to 15mg. I still have the remains of the flare (niggling aches for a few hours in the morning) but have reduced Pred to 12 1/2mgs. (Unfortunately in my country you can’t get 1mg tablets to allow a more controlled decrease)

I get downhearted when reading about PMR patients reducing to one or 2mgs so feel better to read you can’t get below 4 mgs. I’m coming to England in a couple of weeks and will try and stock up on 1mg tablets.

[PMRpro Ambassador in reply to HeatherZim]

I only got below 9mg once - and it was followed by a big flare! That's in 13 years of pred, 18 years of PMR