Dilemma with medication: I have just visited a... - PMRGCAuk

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Dilemma with medication

Karendeena profile image
20 Replies

I have just visited a rheumatologist who has put me back on 5mg of prednisolone, to taper 1 mg every 6 weeks. This is after my doctor tapered me too quickly from 15mg to zero within 7 months. The PMR pain is back and I was reluctant to go back on prednisolone as I have had awful side effects (the GP couldn't work out whether it was the pred or lansoprazole). I continue to have GI probs even though a virtual CT colonoscopy shows no significant findings.

This is my dilemma - the rheumatologist says I don't need a PPI on this low dose. One GP says I do and one says I don't! I am on an anticoagulant (apixaban) for afib so I suppose my risk is a little higher. Having had the GI issues possibly from the PPI I am reluctant to go back but don't want to end up with a GI bleed. Anyone else had this predicament? Thanks

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Karendeena
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20 Replies
SnazzyD profile image
SnazzyD

What about trying the ‘old’ antihistamine type, H2 antagonist? patient.info/digestive-heal...

Or, make sure you take it with a good meal and supplement with Gaviscon at empty times.

I couldn’t get on with PPI’s either and also still needed protection at 5mg, though I was able to use enteric coated Pred.

Karendeena profile image
Karendeena in reply to SnazzyD

Thanks SnazzyD, I thought about asking my regular GP about enteric coated pred but I think I read somewhere that they are not so well absorbed? Last time I was on it my GP prescribed Famitodine which is what you are referring to I think. I didn't take this as the pharmacist said the side effects are similar to lansoprazole. I may give it a go. At the moment I am taking pred directly after breakfast. I am getting a little burping at the moment which I haven't had before, but I do feel better

SnazzyD profile image
SnazzyD in reply to Karendeena

I suppose it depends what you were reacting to. I felt peculiar on PPI’s and bloated but not with H2 antagonist. I did however get rebound acid about two weeks later but we’re all different. E/C Pred was fine for me as long as I didn’t take it anywhere near food but that was me, plus was the only way I could get the acid controlled.

Sharitone profile image
Sharitone in reply to SnazzyD

Please are you able to explain why you couldn't take E/C pred with food? I have managed (off my own bat) to reduce from 60mg Omeprazole to 40mg, and would love to go down further, but heartburn is still a problem at night. Taking yogurt with pred doesn't do it for me. I have questioned the high dose, but was just told that you can take up to 180mg daily.

SnazzyD profile image
SnazzyD in reply to Sharitone

Not everyone can tolerate Omeprazole and it’s relations, though some find a different version of the same type better. I found it quite hard to convince any doctor it was a problem for me even though the side effect list that goes with it doesn’t make it sound as benign as they said it should be. My docs were terrified of me not taking it because it was, I was told, on their gold standard that they should give it to me. I told them to write it was my decision then. Regarding not taking the E/C Pred with food was because it seemed to reduce the absorption. After I changed from non-coated in the early weeks I carried on taking it with food but found my symptoms started to return, especially when I ate quite fatty meals on a break away. I just had a hunch that my Pred wasn’t getting in and changed my routine to no food and had success within 48 hours. Further experimentation made me avoid large amounts of food within two hours either side of my dose. After that I was fine.

Sharitone profile image
Sharitone in reply to SnazzyD

Thanks, that's useful.

Karenjaninaz profile image
Karenjaninaz in reply to SnazzyD

I was told, went on a PPI or H2 blocker, to taper those drugs as well to prevent acid rebound. Could start with every other day or every third day just like we do with prednisone.

SnazzyD profile image
SnazzyD in reply to Karenjaninaz

Yes, you should. I was at one point just swapped from one to the other but it was hell. I wondered if they had different mechanisms, it wasn’t like just swapping like for like. When I came off the H2 I did tail it off even though I was already getting some acid rebound, so as not to make it worse.

Sharitone profile image
Sharitone in reply to Karenjaninaz

Good point. Rebound would explain some of it. Thanks.

PMRpro profile image
PMRproAmbassador

I have been on pred for 12+ years. I have been on anticoagulant therapy for 7. I have never taken a PPI in all that time except when I have needed NSAIDs for something for more than just single doses.

You can chose to use an H2 antagonist - used to be ranitidine, now famotidine and cimetidine (Pepcid and Tagamet) which do the same job but with a different mechanism and, as a result, different adverse effects, Many on the forum take pred with food - and often just yoghurt which seems to work very well.

If you find you suffer reflux, then maybe Gaviscon is enough. But really at low doses there is far less risk anyway.

Karendeena profile image
Karendeena in reply to PMRpro

Thanks PMRpro, this is what my rheumatologist said in terms of risk. I just wish the GPs wouldn't confuse me 🤔

PMRpro profile image
PMRproAmbassador in reply to Karendeena

They have to grab control somewhere ... ;)

piglette profile image
piglette

I take the coated version of pred and they work very well for me. If it means you do not have side effects of a PPI I would have thought that is a plus. At 5mg of pred the side effects become pretty minimal.

Karendeena profile image
Karendeena in reply to piglette

Hi Piglette I have just spoken to my GP who says that I can't have enteric coated pred as the NHS won't pay for them as there is no scientific evidence they are any better than the straightforward pred! Think it's just cost 😕

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Karendeena

Not sure that’s strictly true - particularly when you add in the additional cost of a PPI - if you want (or can be bothered) to challenge have a look costs - bnf.nice.org.uk/medicinal-f...

Just select DRUG name and then “medicinal forms” for prices…

Link is already on Prednisolone

piglette profile image
piglette in reply to Karendeena

That is total rubbish, the NHS pays for mine. As DorsetLady says if you have to have a PPI too, enteric coated are definitely cheaper than uncoated + a PPI. Looking at the BNF it looks like 2.5mg are actually cheaper coated than uncoated! Although I agree 1mg and 5mg are pricier. Your GP is lying through her teeth! Tell her to check the BNF, she will have one on her desk about six inches from her hand. bnf.nice.org.uk/medicinal-f...

Sophiestree profile image
Sophiestree

I was given PPI's straight away with pred but never took them. Instead I made sure I had a good stomach lining breakfast.I had an ulcer in my late 20s from taking aspirin on an empty stomach when I had tonsillitis ( which I got at least 3 to 4 times a year) and was vomiting blood. I do still get the occasional symptoms but have avoided taking them and am just careful. They still leave them on my prescription list though, I just don't tick them and no one seems to have noticed.

USAGCA profile image
USAGCA

Hi. You don’t need a PPI unless you’re on an NSAID or have a history of GI bleed.

Karendeena profile image
Karendeena in reply to USAGCA

Hi USAGCA, I think it's the risk with Apixaban anticoagulant they are concerned about but I am on a very low dose of pred at 5mg. I also read that the risk comes with combining pred and NSAID. It just seems my GPs don't have any consistency. Thanks for your reply

USAGCA profile image
USAGCA in reply to Karendeena

I am on aspirin and prednisone 4 mg. I came off the PPI (that was rocky). So far so good. They do have a drug to reverse bleeding associated with apixaban. I don’t like the long term risks associated with PPIs. That said I have had great results with MTX so the plan is to completely come off prednisone.

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