Hi guys,
Having had brilliant results over the first 3 weeks of treatment on 20mg predisolone my rheumatologist is dropping me down to 15mg today for 2 weeks, then 12.5 for 2 weeks and then reduce by 5mg per month. I am right in thinking this is horrendously optimistic am I not?
So you’d be done and dusted in about 4 months? A bit brisk yes. Here is a standard schedule on page 344 that hasn’t been tailored in any way, starts at just 15mg and it’s still 104 weeks.
You are right, this is horribly optimistic. Check your Rheumy specialisations on the hospital website.
Golden Rule, never more than 10% at a time.
That pathway is too fast and can and does lead to yo-yoing, which is the last thing you want to do as you are then up and down, dealing with flares and in the long run end up taking more pred than if you had been steady as she goes.
What makes your Rheumy think that 4 months is possible. During the past 11 years dealing with PMR and GCA, the fastest I have come across is 2 years.
SnazzyD has pointed out to your the Bristol Pathway. There are other reduction plans on this website.
Way to fast!! Your rheumy needs to read up on pmr. There are a couple of reducing plans on the forum from pmrpro and dorsetlady which you can look at. Would your gp be more approachable than your rheumy?
Horrendously optimistic and total stupidity.
rcpe.ac.uk/sites/default/fi...
(which I now see Snazzy has already quoted) is still probably a bit fast for some people but a far better basis - and they MUST read the sentence that says reductions must be in line with the patient's symptoms.
Any step should be not more than 10% of the current dose - and a rate of more than 1mg per month is predictive of relapse according to expert medics.
The median treatment time with pred for PMR ois just under 6 years - fewer than 1 in 5 are off pred in 1 years, about a third in 2 years. You aren't going to be the exception.
Crazy plan ....no, ultra Crazy!
Thank you all for your good advice. I saw my Rheumatologist today armed with this. She is determined to taper down from 20mg to 15 from today for 2 weeks. Then this reduces to 12.5 for 2 weeks down to 10mg for4 weeks with review at 6 weeks. She then seems to want to get me off pred within 18 months after all. She is talking in terms of using more targeted {hence safer} immunosuppressants to deal with any flareups rather than cycling back to last effective pred dose. Do you know having listened to her I think she knows what she is doing. My worry is whether my GP will be able to handle it between rheumatology visits. As this is a different approach to the norm I will feedback how it goes. fingers crossed!
What immunosuppressants has your rheumatologist discovered that no one else knows about that is a substitute for pred? Sadly pred is the one thing that really helps PMR. The average time people have active PMR is 5.9 years not eighteen months, but good luck to you.
What world is she in? Or has she decided this isn't PMR after all? There are no other real options besides corticosteroids for PMR - and if there were the charity would know about them.
There is only one "targetted" drug and it is not approved for PMR in the UK, only for difficult cases of GCA - not least because it costs £12,000 per year. The DMARDs (mostly used for inflammatory arthritis) might help get the dose of pred down, but more often than not they don't, and they are not "targetted".
Maybe I misunderstood the "targetted" nature of the alternative treatments to returning to last effective dose.
I have since found this on the arthritis.org website ""Targeted DMARDs block precise pathways inside immune cells. The biologic drugs are produced by living cells and work on individual immune proteins called cytokines. Biologics are potent and can be expensive, so your doctor may not start you on them right away"".
Even if you did, there are NO alternative means of managing PMR - you may be on pred plus a DMARD but pred always features. And DMARDs don't always work - if it is PMR, pred does.
Oh well - we'll see what happens.
Well I feel a lot more wobbly about the whole thing now. The other drugs were not going to be an alternative to pred but an alternative to reinstating the reduction to allow pred to be tapered more quickly than otherwise. I really am in her hands and it has to go pearshaped before I can question her judgments. I quoted the kind advice I have been given by people on this forum and she received it gladly. Hopefully she will turn out to be better at her job than may seem.
I had a similar rheumatologist who wanted to taper me very quickly like yourself-I ended up taking more Pred than if I had gone slowly and after each flare it seems harder to get back in control-be warned!my rheumatologist now totally agrees with my way of doing the tapering-all he asks is a copy of my daily dosing of Pred,dexa scans at intervals,and Crp/Esr bloods at intervals with occasional hba1c to check glucose tolerance
Sounds like a good one. There are 2 main things that are indicators of relapse...too higher starting dose and too faster taper. I ended up back at 15mg after tapering too fast. 3yrs in and at 6mg.
That makes me feel a bit better am only just over a year in and was getting despondent as seem to be stuck on 4.5 mg don’t feel can reduce any further at the moment!!
1 got to 8mg in the first few months following the drs orders. Then flared and was back up to 14mg again.
You will be much better off going slower and listen to your body and not let the dr dictate how fast or when to taper. After all who knows your pain and the body needs better than you. My dr wants me down as fast as possible but is leaving it ultimately to me. I am now at ten after starting in April. I have had no pain going to ten and will probably get to 7.5 next month as I have no pain whatsoever since I started eating better and not overdoing things. I can now do 80 percent of exercise pace prior to pmr without feeling as though I’ve been run over by a train. Again I think everybody is different and you ultimately need to do what your body is telling you. This is my second bout of pmr. The first bout took 6 months to feel human again with no Pred and about a year to be symptom free. I feel this bout is taking similar time for pmr burnout. So I feel I can be more aggressive in taper. But again ultimately it is for you and not your doctor to dictate
I most certainly don't think she knows what she's doing!! Please think long and hard about the treatment she is suggesting. She's one person, Health Unlocked is about people who have and have had PMR. The Experts. Not a Jack of All Trades. Sorry but I feel really strongly about the treatment she is insisting you follow. Take Care
Thank you for your concern. Yes I know it seems absolutely barking. She is certain I have PMR and she comes across as being very confident in her plan notwithstanding her recognition it may need to be adjusted. On the bright side I now know that I am not condemned to a lifetime of crippling pain. Any setback is reversible. Wish me luck. I will share how it goes.
You may be lucky. For some reason some men seem to have a smoother journey....note I said some!
I was diagnosed in January. My Rheumatologist started me on 20 mg. I have taped to 4 mg. Oct1.....the plan is to taper 1 mg per month. At this rate I will be off Prednisone the end of January. My journey lasted 12 month. It has been pretty uneventful, I think fatigue is my biggest problem....and walking, wobbly. Hoping the next 4 months are uneventful as well. The pain subsided within 3 hrs of my first Prednisone pill.....what a huge relief.
It is wonderful and encouraging to hear from someone who has had such a successful and uneventful treatment path. May it continue to the end.
..I do not fight fatigue, am able to rest when needed. ...Leaned to Pace myself......which is very good advice,..I received here. I am usually able to do what I like, nap when needed. I learned to say NO, even to something I might enjoy, knowing it may be too much effort. I ignore a minor twinge after a 1 mg. taper. I hired a cleaning lady...and a yard man. So far this approach seems to be working. Thank you for your well wishes. Wishing you well.
Sadly, I hate to say it but until you are at zero with no issues...... Its impossible to say you have had no problem. If I remember rightly you had to raise your pred at one point. People have got to 1mg and been there for months or tapered to zero and two months later realised pmr flaring.. A member recently had been in remission for a couple of years from pmr and then was diagnosed with Gca. It goes into remission but it's not cured. I will keep my fingers crossed for you 🤞
Yes, my beloved son, Brad passed away. The burial was at a point when I was at 8 mg. I asked this group what they thought about tapering in the middle of this stressful period. The consensus was to stay at 8 mg. I stayed at 8 mg for 14 additional days, rather than taper. It worked, well. I mentioned it my
Rheumatologist and he shrugged..no problem. I would not hesitate to do it again under a stressful period.
Good. I remember that very stressful period. I am glad you would repeat if necessary. But let's face it that was one of the worst things that could happen to a parent and hopefully nothing will be so stressful. 🌻
I'd be trying to get out of her clutches and back to the GP - and then you can manage the GP using all the advice you get on here! Good Luck.
Does everyone visit a rheumatologist as I've never been referred to one? I'm lucky that a combination of GP and this forum are serving me well - I think maybe too many cooks ......!
PMR is mostly managed by GPs in the UK, only atypical cases and any that might be GCA are referred. The waiting times are discouraging anyway - 6 months is common and in Northern Ireland it can be 18 months. In the USA a lot of PCPs refuse to have anything to do with prescribing pred - so they are much more likely to see a rheumy.
I think you will suffer doing this. Negotiate for 2.5 at least, so gradually, like once a week, then twice a week etc ( initially lower doses away from each other). If this is too much then even smaller drops. Never reduce more than 10% at a time. Enlightened Rheumatologists get this.
I started on 30MG a week dropping by 5 mg a week in May got down to 10mg but pain in wrists and shoulders so went back to 15 mg am now on 13mg maybe try 12 mg in a week or so my rheumatologist appointment isn’t until December so don’t know what they say yet
My GP seems to think I should control it myself
Which I’m doing with help from this forum
This business of tapering is complicated. Having read the article linked in a couple of replies to you, and now down to 10mgs I’m interested in the suggestion that we should stick at that for a year before continuing to taper. Has any one done that?
I think so - we have had several patients who see a rheumy who trained at Bristol with that group. I'm not sure you need 10mg for a year if you use the DSNS approach and are honest about returning symptoms though.
Yeah - must admit my heart sank a bit! Also you may need to test whether or not you are approaching remission!
Pretty unlikely in the first year or so!
Bleah! 😀
Are you sure you heard right? It sounds good to 12.5, but IMO next step should be 10, then 1mg drops at most (10%), or even .5mg.
When you reach 7 or so, your adrenal glands will have to kick in, and 5 mg drops does not allow this to happen.
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