Reducing pred: dead slow and nearly stop method
Posted , 122 users are following.
Copied from Eileen's post in another discussion.
A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX."
Further comment from Eileen in original discussion:
Can I add a codicil to the very slow reduction plan in the above post:
When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increases the proteins being measured for the blood tests to rise.
Someone has asked this question:
"I'm at 7mg going down to 6mg, and I'm at the point where I'm starting to shift from more 6mg than 7mg, but I can tell the pain is returning. So...do I jump up big to say 10mg, or try 7mg or 8mg? I hate the very idea of going up at all, but it is what it is."
My reply was:
No - you go back to the last dose that worked well immediately and stop the reduction. This isn't a "flare", this is your body telling you that you have got to the dose you are looking for: the LOWEST DOSE THAT MANAGES THE SYMPTOMS. It doesn't mean you won't get lower, it just means not yet. However slowly you reduce, whatever scheme you use, you will not get below that dose without a return of symptoms because of left-over inflammation that hasn't been removed by the amount of pred you took. It is if you ignore these warnings that you will allow a build-up of the inflammation to the stage where you will have a flare on your hands.
To comment on something someone else said - you have differentiated between steroid withdrawal and a return of symptoms by using DSNS. If you were going to suffer with steroid withdrawal you will notice it the first day you use the new lower dose. That is the idea of DSNS - you go back to the dose your body is happy at for a few days and then show the new dose to your body again. For me it usually takes about 3 times for my body to accept the new lower dose and stop complaining.
37 likes, 145 replies
david64576 Emis_Moderator
Posted
This is an interesting discussion and one that I probable should have applied to myself. My inflammation, which is measured by: Erythrocyte Sediment Rate was in February 24mm when on 3mg of Prednislone. I had no feelings of pain or stiffness, this only occurred on 1mg. Since finishing it has increased to 27mm. So in theory I should re introduce the Pred to 3mg and then apply the slow taper
shyminx Emis_Moderator
Posted
Hi
This topic is very interesting and I would be very interested in doing this method but one thing worries me.....I have read lots of posts on this forum and other forums for FMR/GCA where people are upping and lowering their doses of Pred, are they doing this with their Rheumy's/GP's knowledge and agreement or are they doing it by themselves?
I am seeing my Rheumy in a weeks time and will ask her about this method as I have gotten down to 12.5mg from 20mg but the symptoms returned almost immediately so I went back up to 15mg every other day and this seems to work (even though I don't like doing it without GP/Rheumy backing), I don't think that it is withdrawal from the Pred causing the symptoms though. Hopefully she will agree that this method will be of benefit to me so that I can try it at least, I'm not sure what I'll do if she doesn't because I don't think I could put up with the pain it's causing (I'm disabled and am in pain 24/7 because of it so any extra pain makes life pretty hard to say the least!)
Anhaga shyminx
Posted
shyminx Anhaga
Posted
Hi Anhaga
Thanks for replying, I do understand that only people following this post will see it but as my post is related to the OP I thought it best to post here. I do see your point though and as I have also said about changing dosages of Pred I should post a new topic regarding this.
To answer your question, yes I am taking 12.5mg one day and 15mg the next and so on. I could probably get 1mg tablets if I asked my GP but knowing him he will probably read me the riot act (in a nice way) for meddling with the dosage without talking to him or my Rheumy! lol As I said in my last post, I'm due to see my Rheumy soon so will take it up with her.
Because I was already disabled when I was diagnosed with FMR it's hard to know what is causing the pain in the first place, and now I have been diagnosed with Pulmonary Fibrosis which also causes pain it really is hard to know which of the 3 is causing the most pain and when. Phew, it doesn't rain but pours eh!!! :-)
judy68207 shyminx
Posted
I was on 20mg of Prednisone to begin. Stayed there about a month. Then I began the DSNS method with my Rheumy’s approval. I never missed a dose and dropped all the way down to 3mg before I thought some pain was returning. He said that in his experience, 3 or 4 mg is about the spot for trouble if one is going to have any. My Rheumy was adamant about only going back up to the LEAST possible dose that would stop the pain. I only went up 2mg and resumed the DSNS method from that level. I had PMR from June 2016 to June 2018. I think this method allowed my adrenals to resume working slowly while controlling the pain. Knock on wood, I am still pain free. My Rheumy monitored my blood work every 3 months. The SED rate, and the other one I can’t recall right now, fell slowly and steadily back to normal. He did a bone scan in 2017 and again in 2018. I had no bone loss! Which is amazing for my age, 67. I went to OsteoStrong, osteogenic loading, weekly and took Vitamin D3 and calcium supplements throughout. I had no other diseases or disorders other than PMR. There, I think you have it all. Always follow your Doctor’s advice??
Anhaga shyminx
Posted
I'm sorry to hear this. Wouldn't prednisone also help the pulmonary fibrosis, however? In which case maybe it's too soon to be tapering at all, let alone by these large steps. But I really don't know, I have no medical training, but maybe a question to ask the doctor.
carol_ann35477 shyminx
Posted
If you are concerned about changing your dose without the knowledge of your rheumy., what I do is contact his/her office, and leave a message regarding what I have done and why. Then if they are unhappy with what you are doing they can call you or give you an appointment to go in. I have not had any problems with this and have perhaps done it twice in one year.
john220 Emis_Moderator
Posted
Anhaga john220
Posted
John, you need to make a new post for this. The moderator is for the entire Patient site and not actually a fellow patient who will chip in with his experience - at least I hope for his sake he isn't!
DPV john220
Posted
My docs tell me to up the dose when ever I'm ill or have a proceedure. Hope you feel better.
DPV Emis_Moderator
Posted
Do be VERY careful. I managed to get to 7 mg, thought I had a real victory. Had a bit of very minor surgery, did not increase my dosage, a few days later started to feel really bad! No energy, hard to breath, racing heart, nearly fainting...just a host of terrible symptoms. hospital emergency room four times in three weeks, No one...not the rheumatologist, the cardiologist, the nuerologist or my primary gerontologist could figure out the problem. Finally went to an endocrinologist and she quickly said I had adrenal insufficiency from coming off the prednisone too quickly after the surgery. I doubled my dose and within two days was almost back to normal. I'm trying hard to get back down, reducing the dosage by 1/2 mg every two weeks, Good luck to you all.
DPV
Posted
exactly the same thing happened me!!
such a surprise that none of the docs.. not the internist, rheumatoligist, gerontologist, cardiologist, Er doc, gastro guy... none if them could figure out why I kept crashing . finally i went to an endochronologist and she diagnosed me within five minures with adrenal insufficency . i upped the prednisone for a few days and have been fine ever since. every physician that prescribes prednisone should warn their patients about this possibilty as they decrease their dose and they should instruct them to increase the dosage whenever the patient is having any type of surgery thanks so much for your post.
Heron82 Emis_Moderator
Posted
Thank you this is very helpful, I'll give it a go and see how I get on. I started taking Tamoxifen in Feb and one of the side effects is arthralgia, this could confound the PMR symptoms. Hoping this schedule works for me. Now had PMR for 18 months.
D_J Emis_Moderator
Posted
I posted a few months ago to say my new GP said I must come off pred as 6 years too long.
I thought OK time to try again, have come off twice before and flared up.
I was only on 4 mgs and felt fine. re reading your or EILEEN'S post above I know I should have not allowed the pain to get so bad but I told myself it was withdrawal symptoms. so I'm now off (5 days) and feel ghastly, bilateral pain down arms, groin, across neck and feel really down. My private Rheumatologist just confirmed definitely PMR still but will tell GP to do all tests as I refused to have them done privately as GP made me withdraw the pred.
I must survive on ibuprofen and paracetamol until blood tests although I think I will have to put myself back on pred.
GP has greatly wronged me and not understood PMR in my opinion. one question! I have a very itchy back of neck with lumps, worse in the morning. Has anyone else suffered this when withdrawing from pred?
D_J
BettyE D_J
Posted
I had eight years on steroids altogether with all th usual ups and downs of reductions and some of the side effects but I was fortunate in my GP who listened to and advised me but let me judge what I needed to keep comfortable. I have now been clear for six years and, apart from being six years older, don't seem to have much to complain about.
If you are comfortable on 4 it's hard to understand why your GP was in such a hurry to get you off altogether. Many of us have found that the final stretch has to be timed and monitored especially carefully.
Is there another GP in your Practice that you could ask to see? Also, I don't think I'd be too shy about letting your doctor know that you take a personal interest in your health and have read advice and opinions contrary to what you have been told to do. I'm sure cut and dried regimes and schedules would save a lot of GPs' time but they are not always appropriate as you are finding.
Itchy red lumps sound like an allergic reaction.... but to what?
Anhaga D_J
Posted
Please post this as a new message. This is a very old thread which is here to help people find a good way to taper pred. Hardly anyone will see your post, unless they've "followed" it, and those followers may include many people who are no longer using the forum. So you may get more help if more people see your post. Sorry, I can't help, but it sure sounds like you need more pred.