How long can you increase the pred dose and then reduce to previous dose safely?

That’s me trying to keep it brief...fail. 

Disgnosed 31.5.17, started on 50mg, and started DSNS once I got to 11mg in November last year. I drop 1mg per month but tried 7.5mg just before I started getting return of symptoms so stayed on 8. Increased to 15mg to try to knock them out but they are still lurking so I’m inclined to think it’s the Prolia side effects. 

THank you Eileen. It’s very hard to distinguish what is happening I have to say, and I knew from previous discussions that the only way to tell was a process of elimination using the pred as the negotiator. I’m not sure whether to give it more time or just jump straight back to 8 now. Last time I had to increase was under drs orders when I had a tooth extraction. He bumped it up to 25mg from 12mg for two days then straight back to 12 and I handled that without too many hiccups. That was before Prolia though and of course I’m lower on pred now as well. Wasn’t sure if adrenals wanted to make an appearance yet either....just too many “possibles” for my untrained foggy pred Head 

I really don't know the mechanism of the joint/muscle pain in Prolia - pred will only help if it is inflammation. Does a painkiller help at all?

A mix of panadol and codeine eases it but doesn’t take it away entirely. 

Which does reinforce it isn't the PMR but the Prolia...

Which I think I’d prefer....so now to go back to 8 mg and see how I go. Wish me luck, 

Yes, I thought that myself...is this my “new normal” for the next few years of injections. If so I certainly hope it doesn’t get worse.I see  the rheumy again on 12th, I’ll see what he has to say. I’m concerned I won’t know if I get too low on pred. It’s moderate now, but bordering at times on only just bearable. I’m back to walking like a duck...🤦???

https://www.sigmamenopause.com/sites/default/files/pdf/publications/SIGMA%20Sum%20it%20Up-denosumab.pdf

https://www.rxlist.com/prolia-drug.htm#warnings_precautions

The second is the professional page. It mentions hypocalcaemia as a side effect and that can cause muscle pain - and muscle and joint pain is something that should be mentioned to your doctor, presumably to have your calcium levels checked. Keep scrolling down that page to find several comments about musculoskeletal pain - and a few repetitions of reporting to doctor.

Sorry - we have an illness that is PREDOMINANTLY characterised by muscle pain and stiffness. So MUST we be exposed to medications that have that as a common adverse effect? 

Eileen, thank you so very much for these links. They are very informative and wonderfully easy to read. I had researched this drug prior to taking it and was so cautious. Luckily my side effects are in the minor category but given that are the same as the PMR symptoms I can see that managing my pred reduction is going to be ...um....slightly difficult to say the least. The one thing I didn’t know till reading this was they say one should stay on the Prolia for life...OMG. I had been concerned that it was noted that once the medication is ceased you’re back to being at risk again and I didn’t know why ...now it seems that while reducing the risk by 70%, it only works while you’re on it. Wasn’t told that by the drs, was told 3 years. I have to digest that snippet of information now. 😏

Reeceregan, it has only been relatively recently that the public, and one assumes most doctors, learned that coming off Prolia causes a rebound effect, so that the osteoclasts which have been seriously disabled by the denosumab bounce back and cause rather swift "remodelling", i.e. the old bone is taken away too quickly and bone thinning and microcracks appear.  I get the impression the researchers are trying to find a way to provide a safe bridging treatment so that the rebound effect is eliminated, because presumably there are people who won't be able to continue the denosumab for one reason or another.  I believe it was thought that a relatively short term on denosumab was appropriate before this was learned because it is so rapidly effective in improving bone density, so it's a great pity that this serious after effect has developed.  Somebody posted on one of the forums a few weeks ago that she was going to be taking teriparatide, the bone med which promotes osteoblasts rather than inhibiting osteoclasts, to hopefully deal with the aftermath of coming off denosumab.  I think the jury is still out on how effective this will be but it seems like the best option at the moment.  Teriparatide really can only be taken for two years so it's not another long term trap.  

It's really shocking that patients and even their physicians are kept in the dark about long term risks.  You are a very well informed patient and yet....

?

I think that is very very new - and they have only recently identifed this rebound effect when you stop. I think there are an awful lot of skeletons rattling at some closet doors at present. 

What is perhaps most upsetting is that there are patients who have been querying this for a while and accused of scaring others. 

And Anhaga - I think you are being a bit optimistic in thinking most doctors are aware!!!!!

Older, tried and tested for me................... I always ask now. 'how old  it it'.

I became wary when i needed (because of A/F) to be started on Warfarin and I asked the cario guy for the new kid on the block, he said, OK but we know all about Warfarin and can reverse it quickly,  the new kid on the block, no can do.    I went with the Warfarin, even though it means visits every so often.  

O a;ways have taken to wondering a trials to limited and fast...................or am I an old cynic. In my old days, you never heard of new medication through the media.............now we hear on them all the time and think.......................

I'm on a new generation anticoagulant now - but the only one with an antidote and you take it twice a day so it is quick to stop!!! The first time I was offered one I said I'd wait until they'd had a bit more practise!!

No, I was saying the public and doctors have only recently learned, I guess it does sound as though most doctors have learned; what I meant to imply was that the doctors are in the same boat as we are most people not knowing and those that do only recently having found out.  I'm not optimistic at all about what doctors know about bone meds.  New info like this about Prolia makes me feel even more strongly that OP meds should only be used in the most extreme cases and everyone else should be given nutritional and exercise treatment/advice first.  

I had rivaroxaban one of the NOACs. The side effects looked a bit rough, the good news is you can drink with them! They are a great improvement on Warfarin in my opinion. I suppose there is probably a downside somewhere.

Absolutely - and I meant I doubt it has percolated through to many doctors yet. 

I think that is what David is on - tiny tablet once a day which is good for him (swallowing problems) but no antidote despite it being promised a couple of years ago. And since he is blood group Bneg it could be interesting if they had to get lots of blood! I have to say, I do like not having to have the blood tests...

Need to know name, have to make appt with Cardiac guy after the last hiccup.  Sounds interesting, particularly if I don't have to visit the Rat poison people, lessens their load.

Ask him which he likes, they all seem to have their favourites and it does depend on why you need it. Mine is Pradaxa (dabigatran etexilate mesylate is the substance).

http://www.pdr.net/drug-summary/Pradaxa-dabigatran-etexilate-mesylate-100

which says it is better than warfarin at preventing stroke in atrial fibrillation.

It is a capsule taken twice daily and there is an antidote if needed. I have had absolutely no problems with it.

They reckon here that it pays for itself compared with the warfarin-type in 10 months because of not needing blood tests though we are tested monthly here so that is more than the UK. They had switched from us having to go to the hospital to the GP doing it which was a pain because at the phlebotomy clinic you timed when you went and got preferential service, 15 mins done and dusted. At the GP you turned up and waited. Then the machine might not work or the strip was messed up (the test strips costs about £4 each!) and you had to come back. Waste of time and money. This is so good - don't have to think about having the test early if you are going away and no sore fingers!!!!!

Ta muchly:

No strip now, just a swipe and a prick and in it goes, in an out in less then 5 mins.   But guess what, they are now in the process of 'outsourcing' it.

Luckily not at my GP yet.   So the Phlep at the hospital does not have direct access when you appear at the hospital - no IT communication with the various 'outsourcing' locations.   The NHS is going to hell in a stealthy handcart. Only a few of us are awake to what is going on, I just wish the rest of the UK would wake up and start yelling......... before the pirates complete the burglary.

I would not mind paying money into it..........again, even though I paid for 45 years, what I have had out of it in the last 10 years means I have had that money back in spades. 

PS:  I go 9 weeks at present.................yippee, after the glitch it was down to two weeks. So I don't see them till late May.  

Yes yes tiny tablets, I think the first side effect was death, on reading the other side effects death seemed to be preferable! 

I think it is beginning to sink in - even JH seems to be getting the message. Just hope it isn't too late. 

And I THINK the penny is dropping about outsourcing too - the Carillion vileness is getting that through to a lot. Branson is doing the same - subsidising his bids... Here they have finally realised accepting the lowest tender is a recipe for disaster - they always run out of money and come cap in hand for more. And in the end it costs more than taking the highest tender who'd have done it properly and on time. We FINALLY have fibre optic broadband - just 3 years late!