GCA after biopsy

[lennysmummy]

hi I got put on Prednisolone just before Xmas waiting for a biopsy that was positive 2 weeks ago. My question is, I feel like I have a gastritis feeling, never hungry. In fact I’m forcing myself to eat anything. I’m currently on 20mg which even at this dose I’m struggling with. I always thought steroids are supposed to make you feel hungry. I take Omoprazole am and evening which I had to have for years due to ulcer. Funny I got the all clear and healed from endoscopy week before Xmas. Is it these steroids? I am fine at the moment with pain. Markers were only raised to 34 crp so wasn’t drastic. The insomnia doesn’t help which is now causing my anxiety to go loopy. Any advice would be appreciated. 🙈😩

[PMRpro Ambassador]

In some people they don't cause hunger. I had been craving carbs in the afternoons for ages before I was finally offered pred. I took the first dose at about 10am, they were taking effect by 4pm - and I realised I wasn't desperate for carbs, just the tea! My appetite was back to normal. I was switched to methyl pred at one point - permanently hungry with that and I gained shedloads of weight. Switched to prednisone and lost the weight. I also was always hungry when I was on methotrexate and gained a kg in a month. With methyl pred and methotrexate the methyl and the MTZ are supposed to intensify the pred effects - making the antiinflammatory effect greater. That didn't happen for me - just the bad parts of pred which I had never had before turned up!

[DorsetLady PMRGCAuk volunteer]

Hi,

‘I’m currently on 20mg which even at this dose I’m struggling with’.

What are you struggling with? Your GCA, your gastric issues or the Pred?

Maybe have a read through this link for general info- healthunlocked.com/pmrgcauk...

..and this on sleep -

healthunlocked.com/pmrgcauk...

[lennysmummy in reply to DorsetLady]

hi. I think at the moment the stomach issues. Through the night I woke up with acid that had come up and burnt my throat. I watch what I eat, have done for years. I just don’t know what else I can take apart from the 2 doses of Omeprazole a day. I sleep on raised pillows. 🥴

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

As said by others it may actually be the Omeprazole - it does seem to affect quite a lot of people….perhaps you should discuss with GP and look for another option.

[lennysmummy in reply to DorsetLady]

Haha talking to or getting an appt with Gp is a no go in my area. I have also noticed my stools are a very lighter colour now. I’ve got paperwork for bloods every 3 weeks so maybe I will just get that done this week.

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Does surgery have eConsult? Usually better service than a telephone call, and it’s then on your records…. Not sure?

econsult.net/nhs-patients

[PMRpro Ambassador in reply to lennysmummy]

If 2 doses of omeprazole are still leaving you with reflux I would be very suspicious that you are amongst the quite high percentage for whom it doesn't work at all. You need a different approach - H2-antagonists are back in favour amongst doctors as the downsides of PPIs become apparent.

[HeronNS]

I wonder if you should consider that the 'prazole could be a problem? It wasn't designed to be taken for a very long time, although often prescribed that way, and it may be starting to have some adverse effects on you. Just a thought.

[Sharitone]

I didn't get hungry with pred, and in fact, now I am on a low dose, I have started to get hungrier again. At first, I got a very bloated stomach, though I am also on omeprazole. Enteric coated pred helped. Are you on any other meds that could cause a problem, such as Alendronic Acid? My GP felt that was also causing the stomach problem, and switched me to Denosumab. In the end it did improve a lot.

AS for the insomnia, I believe there is plenty of advice in the FAQs. Personally I got a great dal of relief from the mild sleeping tablets which were prescribed, and did not end up dependent on them.

[KASHMIRI1]

Like you l have had a lot of insomnia issues taking pred, it's much better now l am under 10mg. I started at 60mg in 2020. I slept when I could quite often in the afternoon and still do when needed. Like you say it drives you loopy. After nearly three years l have got used to it and have a lot less anxiety issues as l am more familiar with what is going on.

[Makmar]

Hi, yes I can relate to the insomnia and lack of appetite. I am 10 days post biopsy, waiting results, and have been put on 60mg daily prednisone . It can be irritating to the stomach and I had been advised to take my dose with food. I try to eat more protein and vegetables, have increased my dairy consumption in hopes of staving off osteoporosis. I've had PMR since 2016 and have really never been pain free until now, never thought it was possible. Had been down to 2mg before developing GCA and came close to loosing my vision.

[lennysmummy in reply to Makmar]

yes I always take 1st thing with breakfast.

[HappyDiamonds]

I had the same thing, it started in November when I was on 3mg Pred after starting at 60 for GCA. although I have been on 15mg Lanzoprazole since diagnosis. I took an extra 15mg at night asked for gastro resistant Pred, slept almost upright and followed all the eating guidelines without success. GP increased Lanzoprazole to 30mg in the morning 15 at night and advised Gaviscon Advanced 4 times a day after meals and before bed. Still no joy so added in an H2 antagonist twice a day, only then did I start to see an improvement. Its now 7 or 8 weeks and Im just beginning to eat normally but very very carefully and I have lost 1stone 4lbs. Its a horrible thing and gets you down so I do hope you get something that helps you very soon.

[lennysmummy in reply to HappyDiamonds]

Thank you. Yes it’s awful, I just don’t feel hungry, stomach bloated and full feeling. I will get some gaviscon. I’m getting frustrated and impatient I know. Early days but this forum certainly helps. 😊

[Karenjaninaz]

The omeprazole is notorious for bloat; I cannot take any drug in that class(azoles). I had so much bloat it affected my breathing.

I can take an H 2 blocker like ranitidine(Pepcid). Great that your ulcer is cleared. I add acid blockers interfere with B12 absorption -which is needed by the brain; deficiency can cause dementia.

[PMRpro Ambassador in reply to Karenjaninaz]

You can't be using ranitidine now surely? What do you use instead?

[Karenjaninaz in reply to PMRpro]

It’s famotidine(Pepcid). For some reason I had the other name in my head. It’s corrected.