Dismissed my request for a slow taper. Wasn’t even prepared to listen to how it worked . Wants me on 10 for another 3 weeks ( done 10 days up to now ) 4 weeks on 9, 4 weeks on 8 etc. He said if I get stuck I may have to go up a bit for a while.
I was desperate to discuss the tortoise/hare but he was having none of it.
He said he had not prescribed the AdcalD that the surgery gave me but the AA and he wants me to start that . He said he thought it would be the AdcalD that’s upsetting my stomach . I asked him for a dexa scan and he has agreed so that’s booked.
Hey ho..... I will further discuss with my GP if I can get an appointment when I’m back from Portugal next week.
🤷♀️🤷♀️
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Depends on your skills! They are small but lots of people manage fine with a pill cutter. But don't cut enteric coated/gatroresistant ones! It is possible to get 2,5mg plain as well as the 2.5mg e/c - so cutting may only be a need after 2mg.
Do you mean take a dose one day and not the next? Or to take alternating doses, one day higher, next day lower? It is specifically recognized that alternate day dosing does not work well for PMR/GCA although it can be effective when reducing in other conditions. It's in this article somewhere:
By alternative day I mean for example: if you are on 4.5 you would take 5 one day and 4 the next rather than cutting a 1 mg in half. I think it is matter of opinion. I still cut mine because my pill cutter seems acurate
Okay, that is one method of tapering. As PMRpro says alternate day dosing is generally understood to mean taking a dose every second day. it is confusing! I tried taking the high/low thing and found it simply too hard. I felt generally unwell all the time, but it works for you, another example of how we are all different!
No - there is a difference: ADD, alternate day dosing is taking a double dose on alternate days, taking no pred on the days between. It often isn't good in PMR, the symptoms return on the day without pred. I used it for a long time but couldn't get below 18mg per 2 days - which COULD have been due to the ADD.
B*££*$%s - it doesn't matter if it is accurate or not since all you want is less than the last dose, doesn't matter if you take 0.45 of a tablet or 0.55. Anyway, isn't any different from alternating old and new providing you use the crumbs as well, you will take the same dose over 2 days, But your poor body often doesn't like the days the dose is such a lot lower.
Having said that, that is the principle of the DSNS reduction but you only ask your body to cope with the new lower dose one day at a time at first.
While I think about it - have you tried taking the calcium with meals? That often helps. And if you are on it, drop the omeprazole as a first try - that's even more likely than AdCal to cause problems. Whatever doctors think ...
have been taking Omeprazole and turmeric for quite a while and haven’t had any previous problems. In the past I’ve only taken the Ome when I know I’m going to eat something that’s going to give me indigestion. Curry or fried onions for example. Oh and Champagne 😁😁
I’m going to abandon the Adcal until after my scan . I have been taking it straight after eating and at least 2 hours after eating.
I find I need to take my calcium with some sort of food. In the late evening it can be as little as a large tablespoon of yoghurt (preferably with fat content) or small glass of kefir. Seems a little ironic as Tums are calcium and they are used for indigestion! But perhaps the dose is smaller.
If you do decide to try dropping the PPI remember you have to taper off it as otherwise you'll get rebound stomach acid.
Atleast you have got your dexa scan booked. So that’s a result from the appointment I guess, still very frustrating. Going back to your previous post I had awful problems when I took Omeprazole and wasn’t great when I tried turmeric capsules either.
I have been taking Omeprazole and turmeric for quite a while and haven’t had any previous problems. In the past I’ve only taken the Ome when I know I’m going to eat something that’s going to give me indigestion. Curry or fried onions for example. Oh and Champagne 😁😁
Everyone is different and I gave my left over Omeprazole to a friend that can’t survive without it and her GP is understandably a bit stingy with it-please don’t do this folks!
Oh curry, fried onions and champagne 🤗-definitely worth the pain🥂
PS an online supermarket (name begins and ends in O ) has some vg deals in champagne atm(I’m sure other online suppliers have as well) supposed to be stocking up for the daughters wedding next year but may get finished before then.
This is one of those occasions when you know you are right but need your arrogant Rheumy to catch up.
You know a slow taper is better , if you need to do it , you can go to see your GP and tell them you feel better doing so if you can feel you are struggling rather than Flaring up and needing to up the dose instead in a few weeks time.
Take the positives from these sorts of appointments , you had a win by being booked in for the Dexa and you don't need to take the AA until you get the results from that , if the Rheumy objects to that , tough , it's medically responsible to do it that way.
You could choose to stop your Adcal for a week and see if your stomach issues improve or not then post back and tell us your results , even if it is that medication you may find it is affecting your stomach because of the time you are taking it or what you take it with that has caused the symptoms.
Thank you . Arrogant is correct . I don’t dislike him but he’s not easy to discuss questions with. I am taking the Adcal at least 2 hours after the Pred and straight after eating . I am going to stop the Adcal until after my scan
In all fairness I think he is suggesting a reasonable taper, although I personally think .5mg a month better. You can reduce the 1mg how you like over the four week, if you want to use the slow system you can. If it is too fast he has says you can change it. If you are with the NHS I can imagine he would not want to know about various systems of reducing, as it would just take up his time, all he wants to do is suggest how much you should reduce!!
Hi, my initial reaction was to say "find another rheumy"... I get angry about the arrogance and lack of individualised care often shown in medics' determination to follow a one size fits all plan. But, keeping in mind that monitoring of pmr really depends on the symptoms being experienced, which only you know (unless you're being blood tested very frequently), you may find it's relatively straightforward to manage your dosages between appointments.
I think I'd be even more angry with the rheumy if I was actually paying for him myself though!
Although Vitality insurance are paying they want to increase next years premium by almost as much as they paid out this year so in effect they have only lent it to us !!
I did ask my Rheumy if I could transfer my care to my GP but he said he wanted to see me again after my dexa scan which I suppose is fair enough.
As much as my Rheumy says as little as possible I can’t stop my GP from talking 😂
Good luck with the battle! (and whether it's you or the insurance company, he's being paid privately - and as you say, you pay in the end through premiums). I just wish they'd sometimes have a bit of humility and recognise they may not know it all! I've found this forum invaluable and it's helped me to feel that I know a bit about the subject.
I have taken Omeprazole intermittently in the past and I haven’t had any problems . I’m giving up the AdcalD3 until after my dexa scan to see if that makes any difference. I think my system is objecting to being suddenly bombarded !
Read the Tips and Tricks, Acid Reflux if you do get it............ It is quite possible you do not need any PPI.
Yoghurt and a Teaspoonful of Manuka Honey in it - breakfast time. Not alone, just eat what you normally have for breakfast with your Pred just add the plain joghurt and honey.
Been there heard that, lived and recovering from it! I gave up with my consultant, he appeared to have hearing and learning issues. My final moment with him was when he told me without examining me that the illness was over and any pain was due to muscle myopathy because of the steroids. The PMR and GCA had gone in his mind because I was nearing 3 years of medication and that was long enough! This was private health care so I couldn’t even blame a too overworked NHS
I didn’t go back, and just self medicated following the guidelines here. I am now medication free, well for the moment. I have no intention of ever suffering the pain and worry of this illness again, and keep a supply which I will take if needed.
For me , working with what my body told me rather than listening to a doctrine worked, good luck in finding your path through illness, it can and does go away in and at own time which makes it ok to think it may return, it will then go away again 😊
Where do they get the idea it is over in such a short time for everyone? I know an early study claimed it lasted 18 months - I'm just left to ask what their cohort was. At that stage it was very much a disorder identified in the elderly - over 70 maybe. So was the end-point for many death perhaps?
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