Advice appreciated: I’m currently on 7mg Pred which... - PMRGCAuk

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Advice appreciated

Windy183 profile image
19 Replies

I’m currently on 7mg Pred which is controlling the PMR symptoms to about 75-80% I would say. I take Omeprazole (first thing in the morning) plus VitD3 and Risendronate.

Over the last two weeks I have suffered diarrhoea attacks about 2 hours after eating my main meal but not EVERY time. These are quite severe with stomach pains but quickly subside. I had previously successfully reduced to 6mg with no attacks of diarrhoea but had a flare so am on second taper.

I had a phone consult with my GP who said the diarrhoea is likely a result of adrenal function starting to work and didn’t seem concerned. I am more of the opinion reading posts here that it’s adrenal insufficiency but do I just have to work through this phase until the adrenal function picks up sufficiently?

Any pointers greatly appreciated

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Windy183 profile image
Windy183
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19 Replies
Bcol profile image
Bcol

Morning, quick question. Are you taking all your tablets/medication at the same time?

Windy183 profile image
Windy183 in reply toBcol

I take the VitD3, Omeprazole & Risendronate at about 6am and then the Pred at 7-ish with my breakfast

Bcol profile image
Bcol in reply toWindy183

I could be wrong but I'm pretty sure you are supposed to take the Risondrate on an empty stomach at least 30 mins before anything else and on its own. Think Omeprazole is similar. Maybe taking them together is causing the problem.

Windy183 profile image
Windy183 in reply toBcol

Ah ok I’ll look at that. The info on the drugs packets themselves is minimal so I’ll try and come up with a new schedule. Thank you

Bcol profile image
Bcol in reply toWindy183

If you need it, link below to NHS info on Risondrate which has quite specific instructions.

nhs.uk/medicines/risedronate/

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toWindy183

Each pack should have a patient information leaflet inside -with full instructions on how to take.

piglette profile image
piglette in reply toWindy183

I was told I should leave at least two hours between the pred and the vit D/calcium or are you only taking vitamin D by itself?

Windy183 profile image
Windy183 in reply topiglette

Oh crikey. I take the VitD with the Omeprazole on an empty stomach and then the Pred an hour later with breakfast. To be honest apart from the dosage and with food/empty stomach instructions on pharmacy label I’ve had no other advice (in a year seen Rheumy 3 times plus GP on the phone twice).

I might try sorting out another regime over the weekend.

Thanks for your kind reply

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Your GP is partly correct in that your adrenals are having to start working again - maybe have a look at this link, especially the paragraph about nudging your adrenals back into life - but only way is a very slow taper, small steps [so adrenals are given time], resting if you get fatigued which is very often main issue, time and patience -

healthunlocked.com/pmrgcauk...

Windy183 profile image
Windy183 in reply toDorsetLady

Thank you. I’ve definitely got the irritability!! 😂 Fatigue is quite a marker so think I’m probably in that phase as you highlight with the link. Many thanks 🙏🏻

SnazzyD profile image
SnazzyD

It might be your Omeprazole beginning to irritate. As Bicol asks, are you taking everything at once?

I think the GP means it is the adrenals needing to work, not that they are starting to work. Under 8mg is when it hit me. Very very slow but continuing reduction to a lower dose helped because it became clearly low enough for the body to realise action was needed.

PMRpro profile image
PMRproAmbassador

Like Bcol, I'm concerned about how you are taking the risendronate - that is just once a week isn't it?

It could be the lack of adrenal top-up as yet - I have slightly wobbly gut function at these lower pred doses.

When you say the pred is controlling the PMR 75-80%, was it better in the past? You should never feel worse at the end of a taper step than you did at the start of it and increasing discomfort is a sign you are no longer on enough pred to manage all of the inflammation. If that is the case - it COULD mount up until you are back where you started. Pred doesn't cure, it manages the inflammation which relieves the symptoms until the underlying autoimmune condition that creates it burns out and goes into remission.

Windy183 profile image
Windy183 in reply toPMRpro

My Risendronate pack says take one daily (5mg). Re the ache/discomfort level it’s really hard to tell what’s residual PMR and what’s general age pains (I’m 67). I’m so much better than before I started Pred and think I’ve found a good balance between dealing with the inflammation and the side effects (anxiety/jittery/mood swings/sweats). It’s just this stomach upset now that’s appeared.

PMRpro profile image
PMRproAmbassador in reply toWindy183

If it were me I'd be protesting about the daily dose!! It can also be taken once weekly - same performance of taking it 30 mins before any other food or medications but 6 days of normal mornings!

medicines.org.uk/emc/produc...

says

Posology

The recommended daily dose in adults is one 5 mg tablet orally. The absorption of risedronate sodium is affected by food, thus to ensure adequate absorption patients should take risedronate sodium:

• Before breakfast: At least 30 minutes before the first food, other medicinal product or drink (other than plain water) of the day.

In the particular instance that before breakfast dosing is not practical, risedronate sodium can be taken between meals or in the evening at the same time everyday, with strict adherence to the following instructions, to ensure risedronate sodium is taken on an empty stomach:

• Between meals: risedronate sodium should be taken at least 2 hours before and at least 2 hours after any food, medicinal product or drink (other than plain water).

• In the evening: risedronate sodium should be taken at least 2 hours after the last food, medicinal product or drink (other than plain water) of the day. Risedronate sodium should be taken at least 30 minutes before going to bed.

If an occasional dose is missed, risedronate sodium can be taken before breakfast, between meals, or in the evening according to the instructions above.

The tablets must be swallowed whole and not sucked or chewed. To aid delivery of the tablet to the stomach risedronate sodium is to be taken while in an upright position with a glass of plain water (>120 ml). Patients should not lie down for 30 minutes after taking the tablet (see section 4.4).

Supplemental calcium and vitamin D should be considered if the dietary intake is inadequate.

The optimal duration of bisphosphonate treatment for osteoporosis has not been established. The need for continued treatment should be re-evaluated periodically based on the benefits and potential risks of risedronate sodium on an individual patient basis, particularly after 5 or more years of use.

The weekly dose works just as well - I suppose the fear is that the patient might forget their weekly dose. But taken properly so it is absorbed on a daily basis results in many patients either not taking it or taking it incorrectly. I suppose you aren't so far out though.

I would put the change in bowel habit down to adrenals too - but your GP should be investigating if it persists as there are other reasons and they are red flags.

SnazzyD profile image
SnazzyD in reply toWindy183

Do you mean the label from the pharmacy says daily or the information leaflet with the Risedronate? Could there have been an error, in other words?

PMRpro profile image
PMRproAmbassador in reply toSnazzyD

Just to add: The daily dose should be 5mg, weekly is higher at 35mg

"Adults—5 milligrams (mg) once a day or 35 mg once-a-week at least 30 minutes before the first food or drink of the day other than water. Alternatively, you may take one 75 mg tablet per day for two consecutive days each month or 150 mg tablet once a month."

mayoclinic.org/drugs-supple....

Windy183 profile image
Windy183 in reply toSnazzyD

Label from the pharmacy definitely says 1x 5mg daily

LucilleG profile image
LucilleG in reply toWindy183

My experience with Risedronate: I've been taking 35 mg Risedronate DR (delayed response) since July 2022 weekly. I take my prednisone between 5-5.30 am with some apple sauce. Then I take the Risedronate DR with a large glass of water after I've eaten, around 7.30 am (and have to remain upright for 30 min). I haven't had any issues at all. You must be on the regular one that needs to be taken before a meal.

Windy183 profile image
Windy183 in reply toLucilleG

Yes I am. It’s weird because I’ve been taking it for just over a year with no side effects that I can identify so I’m loathe to think that these digestion issues are down to that to be honest.

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