Trying to break free from PMR and the treatment

[Mdetector]

Can anyone say weather bullrich salt is ok as a substitute for omeprazole,also is either worth using while on 2mg of prednisolone started with 20mg prednisolone two and a half years ago but only heard of bullrich salt today..I did get dosage down to 1mg then stopped for a week but the painful arms soon drove me back on them can't believe its been this long any advise is welcome thanks..

[PMRpro Ambassador]

"can't believe its been this long "

Half of patients take up to just under 6 years to get rid of pred for their PMR - which means half take even longer. Contrary to what many doctors try to tell you, PMR is not a short term illness, it can be really chronic and may last for many years. Only about 1 in 3 are off pred in 2 years.

Prof Dasgupta, a top UK expert in the field, told us in a webinar a few months ago that he often keeps patients on 2-3mg indefinitely as that seems to reduce the risk of relapses. It is a very low dose with no adverse effects, even long term, and often if you try to force a reduction you end up with a relapse and having to go back to a higher dose. Don't rush this last bit.

[Mdetector in reply to PMRpro]

Thank you I have to admit to knowing nothing about PMR till today even when it all started and thinking I had some sort of seisure stroke or whatever. just to hear there was treatment was enough at the time. then after a year started thinking of possible side effects though none were showing its not been easy getting the dosage down to 1mg from 20 then I stopped for a whole week but after that going back to higher dose left me feeling defeated, but can now see I'm not alone and its a sort of comfort reading all your stories and advice on this subject its obvious now I need. To go slow and be thankful I'm only taking a small dose. wish I'd got on here sooner...thanks everyone 👍

[DoverSole]

I have not heard of Bulrich Salz so have just been looking them up. The active ingredient appears to be Sodium Bicarbonate but there is no Specification of Product Caracteristics info available that I can find so it's hard to properly work this out, if there are other things in the product and if there is any research on how effective it is. Sodulium Bicarbonate is found in most standard antacid medications. It works by helping to neutralise the acid in your stomach. Omeprazole is a proton pump inhibitor which reduces the amount of acid the cells lining your stomach produce. I guess the questions are, what are the reasons you are taking the Omeprazole and what are the risks of stopping. The best people to help you discuss this issue and help you decide would be your GP and a pharmacist.

[Mdetector in reply to DoverSole]

Thanks DoverSole I picked up on this bulrich salts for the first time after it was mentioned on here,I then did the lazy thing I suppose by asking here till can contact a doctor.I am very grateful to all who give me feedback on this 😀

[SnazzyD]

Sodium bicarbonate is the main ingredient and works by neutralising the acid whereas the Omperazole stops it being made in the first place. You have to be careful not to take too much of bicarbonate as with any basic antacid and you can cause over production of acid. Is there a reason you want to stop Omperazole? If you decide to stop it, you should tail it off slowly to avoid rebound acid problems, so get some advice on that.

[Mdetector in reply to SnazzyD]

Hi I was reading all the possible side effects then started looking for alternatives perhaps I can reduce the strength from 20mg as prednisolone dose is going down. will have to ask the doctors first thanks...

[PMRpro Ambassador in reply to Mdetector]

Many of us never took omeprazole or its like - I think at such a low dose you would be fine without.but you can't just stop the omeprazole - you must taper the dose over weeks or you risk rebound production of acid.

[MrsChips in reply to PMRpro]

What is the best way to taper the dose please? I was taking 2 per day. I've stopped taking the Pred so thought I'd try and stop Omeprazole. How long would I take one per day and then could I maybe take one every other day?Many thanks PMRpro

[PMRpro Ambassador in reply to MrsChips]

I think the usual recommendation is to start by halving the dose, so what dose are you taking? If it were 2x 40mg, you would go to 2x20mg, I'd do that in 2 steps if it were me, a week of 2x20mg in the morning, 1x 20mg at night. Then a week of 1x20mg twice a day. Then ask for 10mg tablets and do the same. And then have days without now and again until you get to none. The slower you do it, the less likely you are to have the rebound which can be really severe in some people.

[nickm001]

I am surprised that you are still on omeprazole. I was given it only when I was at starting dose and as soon as I went below 10mg, it was discontinued. Unless you have some other ongoing problems with stomach, I would think that simple yogurt with prednisone will give you enough protection.

[Roland_Burdess]

At the outset of my PMR journey five years ago my rheumatologist prescribed Omeprazole but I found it made me feel nauseous. After consulting the GP he changed the PPI to Lansoprazole and I've been all right on that. I am now down to 2mg Prednisolone/day and some months ago I spoke to the GP about coming off the PPI, as I was on a small dose of steroids. He agreed and immediately cancelled my repeat prescription; what he didn't tell me was that I should come off them gradually. I had to go back to him to have Lansoprazole reinstated. I now take them (15mg) every other day and sometimes with a two-day break but if I take a longer break I get an "acidy" feeling in my stomach.

[Mdetector]

After nearly two and half years using prednisolone for my PMR and being stuck at one mg each day for the last three weeks I stopped taking preds for no more than three days before I had a flare up again did try cutting them in half for a while but the pain just slowly creeps back in my arms. I was told by another sufferer that I may need a maintenance dose.which was the last thing I wanted to hear,so I have been looking at CBD oil to finally get off my meds has anyone else tried this approach thanks

[PMRpro Ambassador in reply to Mdetector]

Look at the relatd posts - but I don't think anyone has ever found it replaces pred. It does help some people with the add ons.

If 1mg was holding your PMR symptoms after 2+ years you are doing very very well. It wasn't a flare- the PMR hasn't ever gone away but you needed a really low dose. You probably will get off pred but not yet and really you should be happy you need such a low dose. You are never reducing relentlessly to zero but looking for the lowest dose that relieves the symptoms. And you have found it for now.

[Mdetector in reply to PMRpro]

Hello PMRpro I just want to say how really grateful I am for all your helpful replies. there was no one else to answer my questions and we know doctor's are busy. I was hoping my pmr would just disappear after a while ..oh dear I'm starting to drone on again.. anyway thank you from me stay safe and take care 🙂

[PMRpro Ambassador in reply to Mdetector]

I think we all do - hope it will disappear I mean! It is a really difficult thing to get your head around that this thing that messes up life so much is here to stay for the foreseeable and there is nothing we can do but humour it and find the best way for us. Taking control of what you can control - diet for example - can make a big difference even if doesn't provide a cure. But do be realistic - anything that promises miracles almost certainly won't. It's one thing trying everything if you have money to burn but few of us do.