Is all the extra medication needed?

[Stargiver]

Hello everyone.

I was diagnosed with PMR just over 2 years ago and have posted on this invaluable site a few times. After high doses of Pred at the beginning with a possible threat of GCA,, which did not occur, I have yo-yoed a bit with stresses in life. However I am currently on 7 and a half mg and hope to very slowly reduce. My last blood test was fine for inflammatory markers. I do have hypothyroidism ( years and no problems), but do have quite high BP partially probably due to steroids. So I am on 2 lots of BP medication.

At the start I was also advised to take Ibandronic acid to make the bones take up calcium and avoid osteoporosis, and also a PPI to line my stomach and supposedly prevent ulcers. I took these for a while but for various reasons - indigestion, a bit of dizziness etc discontinued them and found so long as I took my steroids on a full stomach I was Ok.

Well after a review of my BP particularly , the surgery pharmacist felt I ought to take these meds again. I have agreed but haven't got them yet and do not relish starting again. How essential do people feel they are.? All meds have side effects and bizarrly one of the side effects from long term use of PPIs is osteoporosis.

Thanks for all your support.

[Koalajane]

BP meds are important and I wouldn’t dream of not taking them without a discussion with my GP. I have had mine reviewed and one has been reduced?

I take d3/calcium along with ‘k2 but nothing else for my bones as my bone density is good as shown by a bone density scan.

[Paulagcl in reply to Koalajane]

I am no dr but I would say take the bp meds -- I do. You don't want the dangers of having too high bp.

[PMRpro Ambassador]

As KJ says, BP meds are important and I have other cardiac meds as well that I don't argue about.

I don't take AA - I had a dexascan at the start that showed my bone density was fine and subsequent scans have shown no change. I used to take a combined calcium/vit D supplement until I realised the calcium was causing cystitis without necessarily being a UTI. I stopped the calcium but continued to take just 4000 IU vit D and eat a lot of cheese ...

I have only ever taken a PPI if I needed to take NSAIDs as well for pain - my rheumy insists. I am currently taking a higher dose post and cardiac ablation - there may be irritation to the oesophagus as a result of the procedure so no argument. My daughter is a specialist endoscopy nurse - she says if you use NSAIDs, use a PPI, she has seen patients insides that can only be described as shredded because they didn't.

The preoccupation with a PPI to go with pred seems to me to be an English-speaking one. it is rarely mentioned here except for other reasons like NSAIDs.

[Koalajane in reply to PMRpro]

I was never offered a PPI and always take my pred with my breakfast.

[DorsetLady PMRGCAuk volunteer]

So are you just querying the PPIs?

If taking the Pred without a PPI is not causing you any issue - then continue as you are... many don't require them. But do monitor things..

If you've stopped Ibandronic Acid are you taking anything for your bones - i.e VitD/Calcium supplement?

Guessing you are happy with BP meds.. and you may find that improves as you lower Pred.

[piglette]

Have you had a Dexascan showing you have osteoporosis? If not you probably don’t need a bisphosphonate. My doctor has been going on for ages for me to take them even though I have positive Dexascan results. Also what type of steroids do you have are they coated or not. If they are not coated, just white tablets, they can cause stomach problems, but a lot of people solve this with yogurt or similar when they take them. A lot of medical people do seem to use a tick off list and automatically think we should be given something for osteoporisis and something for stomach problems just in case!

[Stargiver in reply to piglette]

I am of course taking my BP medication, thyroxine and calcium/Vitamin D. My only query is the Ibandronic acid - although it is only once a month, but also my main query is the PPI med, and whether that is necessary. I have never been offered a bone scan so have no idea what my bones are like.

[piglette in reply to Stargiver]

I personally would not take a bisphosphonate unless it had been proved to me that I needed it. Can you ask for a Dexascan? It would be good to see what your bone density is like.

[Sharitone]

I was given AA and a PPI automatically with pred. Ironically the AA was changed to Denosumab because it was felt it was damaging my stomach - so taking AA may be a reason for taking a PPI.

The PIL in omeprazole warns against taking it for 4 yrs. After 3 1/2 years, I had a gastroscopy that showed I had a lot of benign polyps in my stomach, and the consultant felt it was probably due to omeprazole use. I've got down to 10mg daily now, and do not have any symptoms that gaviscon can't take care of. As you say, it can promote osteoporosis, so it seems to me that if you can do without it, so much the better.

[KASHMIRI1]

Good morning, my rheumy said that he didnt care which PPI I took as long as I took one as the risk to the stomach was to high without. I have done so without any issues. I stopped alendronic acid over a year ago as my Dexa scan results were very good.

[Steal]

I also had this dilemma. I'm taking 5mg pred for GCA and a betablocker and anticoagulant for AFib. I decided to stop taking Alendronic Acid, Omeprazole and Leflunomide (steroid saver) all of which I was told to take. This forum gave me the confidence to make my own decision, which was to omit the meds that seemed unnecessary and had bad effects. I feel so much better, pretty much back to normal. So just taking what's absolutely necessary. I do my best to look after myself with a good diet, exercise and plenty of rest when needed. Maybe I'm taking risks, but so be it for feeling myself again.Good luck!

[Kendrew]

Hi Stargiver,

When I was initially diagnosed, I was going to automatically be prescribed a PPI to use alongside the steroids.

I refused to do this as I felt without evidence to support the need for PPI's I would simply be adding yet another medication to my list that potentially may not need to be there.

I take gastro-resistant prednisolone and always take my pill with food...... almost 5yrs down the line I have so far not required to take PPI's. Obviously if I began to develop symptoms suggesting I may require them then I would definitely reconsider my decision.

As for biphosphonates..... I had to take Alendronic Acid for 3yrs following a DEXA scan that revealed mild osteoporosis.

Without the proof that I required them though, I would again not have agreed to take them.

I worked hard to improve my bone health, and the medication together with yoga for osteoporosis, other relevant exercise, dietary changes and combined calcium/Vit.D supplements, significantly improved my situation.

I'm no longer on AA and like Pro I stopped taking the calcium supplements. I do however take a high dose of Vit.D3 alongside Vit.K2 and eat a calcium-rich diet.

I may of course require biphosphonates again in the future, but will only agree to them if my next DEXA scan shows the need to do so.

As has already been advised, hypertensive medication and the requirement for it is a different matter and high blood pressure is not a condition that should be ignored, regardless of what may be causing it.

[PMR2011]

I was on Pred for 7 years and never took a PPI or Alendronic Acid. I would always take Pred with a meal and took Vit D3, Vit K2, and a Magnesium/Calcium combo for my bones. Never had a problem. I do think many docs prescribe there meds reflexively and don’t consider the individual.