Reaching lowest dose of Prednisone

Which would be fine if paracetamol worked on PMR pain - I've yet to meet anyone for whom it make the slightest bit of difference to PMR.

I have found that Doxycycline (the antibiotic helps) when going through another dose down (same dose as Lyme Disease 100mg bid).  It is an anti-inflammatory and has less side-affects than many of the other drugs.

I am not suggesting it for others, but it was coincidental that I took it and it worked.

Discuss it with your doctor.  The Rheumatologist may say no because it is not in their "medical dictionary," so to speak.

I had them all too when I was on Medrol and it didn't seem to work for the PMR either - I must ask about that because there is a research project being set up looking at pred side effects. The other preds I've used were effective for the PMR at least! 

The rosacea can be treated by the way, google it. I have an epilator and screwed up the courage to try it on my face for the lovely dark beard! It worked well. You can buy small ones designed for the face these days.

​And I have to say - I seriously dislike this format. Another forum I use is similar - bah!!!

Hi Eileen - great minds and all that...I have an epilator and have to use it daily now. I did use it oncea week before since monopause. 

I have found something that really dose help the rosacea. Well 3 things to be exact. Lavender water, lavender and aloe gel calms it. But the thing that has it under control is pure coconut oil. Its stopped the itching annd the red has gone down. I have to use it x 2 a day.

Scuse typos  - fancy forum still with no edit!!!!

Hi Jennissw - I am new to the site and just finding my way round. Diagnosed with PMR just 6 weeks ago. Not sure when symptoms started but it is more than 6months ago. Just thought the stiffness and other symptoms were due to old age, just turned 70 this year. Talking to GP during my 6 monthly checkup for Diabetes and he said my symptoms could be PMR. Took a blood test and yes raised ESR and then everything progressed very quickly from there. 

On reading your post three months ago about Rosacea I realised that my Rosacae started about the same time as my PMR symptoms started and I have noticed that other PMR sufferers seem to have it as well. Is this common? I have had antibiotic cream and oral antibiotics in the past. It has subsided at times but then returns. The Prednisolone that I am on now doesn't seem to help either so I was very interested in the things that have helped you.

Could you tell me please where you obtained the Lavender water and pure coconut oil. Is the lavender and aloe gel bought ready mixed together? I know we are all different when it come to what remedies work for us but I haven't found anything that works yet so I am willing to try something new. Can you tell me when you apply these. I don't get any itching but the redness is so unsightly. This came as such a shock to me because I had never had any problems with my skin before. Thank you

 

HI GM70,

I got Rosacea about 18 years ago, way before I was diagnosed with PMR. I suffered with it for a number of years. Various dermatologists prescribed something called Metrogel: (metronidazole) Gel, 1%. It sort of worked, but never got rid of it, so I eventually stopped using it. (It must work for other people, however, as it is the medication of choice here in the US). I never went on antibiotics. I had already stopped using cosmetics or soap on my face. I do wear eye makeup, but that is all, and use an eye make up remover around the eye area. I got rid of the Rosacea by using a face toner, the kind that does not contain alcohol; I have no clue as to the ingredients. I have used various brands; they all work. The brand I am using now is from the cosmetic company Prescriptives (They are no longer in business, but I bought up a bunch of bottles and keep them in my fridge). Not sure what I will use next, but will experiment, eventually. I put a small amount on a flat cotton pad and wipe my face with it. I was curious as to why it works. A chemist I know, who worked in cosmetic testing, told me that toners can change the PH balance on the skin and works that way. At any rate, you might give it a try, as it is not expensive and will not cause lasting damage. It has to be mild, though. Alcohol on the face will cause drying and irritation. I have been Rosacea free for over 15 years (Thank God!! and Kock on Wood!!).

Are you experiencing rosacia too?  I think it just broke out.  My forehead between my eyes and above is somewhat swollen and red, and my cheeks are red and a little rashy?

Hi seeana, I'm so sorry to read that you are into a second bout of PMR after being free of it for so many years.  I hope it may help you to know that a few of us who post here are also in touch with at least two other people on another forum who have succumbed for the second time after being free of it for a few years, but again they have recovered and are off steroids.

Although you say you have been trying to reduce from 10mg but are failing in spite of half or quarter mg decrements, have you tried reducing by half a mg on just one day a week?  I resorted to this routine when having great difficulty getting below 5mgs (which like 10mg can often prove another sticking point).  I reduced on just one day of the first week, two days of the second week, three of the third etc, taking about 7 weeks to reach the new dose every day.  I continued in this way right down through the doses and eventually succeeded in getting my PMR and GCA into remission and getting off steroids.  In your case, you will need to make sure your inflammation is completely settled on the 10mg dose before trying to reduce, even if you have to remain at 10mg for a couple of months first.  Good luck!

What a pain Seeana (no pun intended). I struggle to come down even from higher doses. You are more likely to have success using the method Mrs O recommends. Eileen has a chart printed to follow, which I have used and it works for me. Even now I am doing every other day 13 and 13.5. Will do that for two or three weeks.

Hi MrsO. I have GCA, diagnosed last Oct and I too have found it difficult to reduce from 20mg Pred to 15mg. I had quite a number of bad days so had to go up to 17 1/2 mg. I was initially on 60mg for 2 months. I have now reduced back to 15mg and for over a week now I have been fine, apart for the usual Pred side effects. My Rheumy told me to reduce by 5mg in March but it seems 5 is a step too far for me. He did say that I could go back up if need be. As you say MrsO slow but sure is the only way. I know that if I can get to 10mg at some point I may need to stay there for a while but I'm ok with that. At least it's a helluva lot less than I was on. I have read on here that when you get to 10mg it is possible to lies weight. I am only 4' 10" tall and have put nearly 2st on so as you can imagine I'm not comfortable at all and get very breathless and get backache too, so I will be glad when I can lose some of it. Thank you once again for your very knowledgable comments. MaryJ xx

At this stage 5mg at a time is a massive drop - the top experts have said for some years that a drop should be not more than 10% of the current dose - and at 15mg 5mg is 33%! The reduction I use allows a steady reduction of 1mg a month or so - but it is far better than dropping and having to go back up again - because for some reason once you start to yoyo the dose it becomes more difficult to reduce the next time.

I'm a bit taller than you, barely over 5', but put on weight initially because of 5 years not able to exercise (no pred) and then later with medrol which I found awful. I've lost over 2 1/2 stones so far, still a bit to go but I have collarbones and a waist again! And a load of clothes that don't fit - luckily I'm a hoarder so had the "smaller" stuff in the cupboard too - despite an international house move :-)

Eileen

Hi MaryJ, you're very wise in being aware that a 5mg drop from 15 to 10 is a step too far in spite of your rheumy's advice - we know our own bodies better than the rheumies do!  It's alright for him to say that you "could go back up if need be", but we know from experience, and as Eileen has mentioned, that as soon as we start yo-yoing our doses, future reductions can prove even more problematic.  If you reduce from 15 to 10mgs in one jump and your symptoms start returning, you don't know at which stage between 15 and 10 the inflammation ran away again so you have to increase way back up to 15, whereas if you taper your reductions slowly and in smaller steps it's easier to spot  when a particular dose is a little too far for now.

Yes, some people do mention starting to lose some of the steroid-induced weight gain once they get below 10mg.  It can help if you reduce all refined carbs such as in bread and white potatoes.  I tried to include lots of diuretic-type foods to offset the steroid-induced fluid retention, such as asparagus, garlic, fennel, melon.  I also made sure to include a daily walk, even in the early days when I could sometimes only manage 5-10 minutes.

I do hope you continue to feel better on 15mg, and hopefully a much smaller drop next time will prove more successful - even if it's only 1mg, it's still a drop.  Good luck! 

 

Hi Mrso thank you for taking the time to reply ,I will try that agin in a couple of months as the pain comes back when I only reduced it once by a quarter.

I am amazed at my own stupidity that I let it go as long as I did' I just put it down to getting older as also I have got a bulging disc which was causing a lot of pain and I went onto oxycontin 20 mg a day which I have got down to just one 10 mg tablet(really scared of this drug) in the morning that helps the back pain somewhat but it did not help the PMR at all and it was only then I realised it was something else,when the test came back positive for PMR it was a relief in a way and I am so glad I did not up the dosage of the Oxycontin ,still in little bit of pain' but really it is under control ,instead of taking another Oxy at night I take one third  of a stilldem sleeper which stops the awful nightmares  I get without it .

Hi Jen could you tell me how to find the chart please,I am not much into all this new electronic and media stuff, no way could I keep up and I only belong to Facebook to go onto a Golden Retriever page to keep in touch with other owners of my pups brothers,also I only use my smart phone to make phone calls but this is where the internet is so valuable as I can seek help from people who have some of the same problems as I do,I really do appreciate the help I recieved on here.

 

Here you are seeana - your own copy:

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 a 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.

If you have a handy son/daughter/grandchild they can probably copy this and print it out for you

Eileen

Hi Seeana

I do empathise with your having a back problem to contend with as well as PMR.  I have a slipped vertebra at the base of my spine (spondylolisthesis) and sometimes it was difficult to know whether my pain was down to the spinal problem or PMR - it can certainly confuse things.  What I do find helpful when my spine suddenly throws a tantrum is to don a support girdle for a couple of days.  If you don't already wear one, perhaps it might help you too.

Hi' the pain I get with with PMR is utter stiffness in every part of my body,its worse in the morning and it took a real effort to get out of bed,after a while it loosend up but if there is rain due oh boy I just shuffle along.I will follow the instructions above and see how I go, I have just printed a copy so will start tomorrow ...oh which is the best time to take the tabs I for one take them before bed that way I dont feel stiff first thing.Thankyou everone for taking the time to reply to me I really appreciate the support.

The recommended time to take pred is all in one single dose as early in the morning as possible - but that then means you have to wait a bit for it to work. Are you on prednisone or prednisolone? If in the UK probably prednisolone, which is the active form so it acts faster. Prednisone must be processed by the liver first.

Yup - rain gets me too! The last couple of days here have been wet and I've been stiffer than usual.

The optimum time for taking ordinary white pred tablets is 2am so the peak level in the blood is achieved before the cytokines that cause the morning stiffness are shed in the body. If taking it before bed works for you I think that is fine - some people split the dose as pred tends to keep them awake but taking about 1/3 before bed avoids their morning stiffness and they aren't too bad in the evening - in some people the pred effect doesn't last as long as for others. 

Hello Eileen,

Per Dr's instructions, having reduced dosage to 2.0 mg per day over 6 weeks, does not seem to work for me! I was OK @ 4 to 3 mg/day! Would like to try the dosage reducing detail pattern for 41 days posted by you. I still need a bit of clarification: if I start at Old = 3.5 mg, New = 3.0 mg, after 21 days, am I correct that the New = 2.5 mg and Old = 3.0 mg for the next 20 days? For the heading, you did state:

"My reductions are VERY slow. I use the following pattern to reduce each 1mg:"

In my case, assuming during the course I feel fine, the reduction over 41 days would be 1 mg, from 3.5 to 2.5. Please comment/clarify, thanks for your help and caring.

Eileen,

In my previous post/question, there is error in number of days count. It should be 27 days instead of 21 and reduction of 1 mg over 52 days in place of 41 days. Sorry for the confusion & miscount!

Once you are down below 5mg the percentage for a 1mg drop is very large - from 3 to 2 is a 33% drop. If you were fine at 3mg but not at 2mg then it is possible that the 3mg is the sort of dose you need for a few months anyway. And at this level, the dose is so small that remaining there for a few weeks between is of no concern - not even if you statyed there for a few months.

However - if I have understood your post correctly - yes, you are reducing 0.5mg in the first half and also in the second half. You can repeat any stage a few times as well which will slow it even further. I did my reduction for 1mg steps as I can't cut my tablets. But if you can cut them each stage can be for half a mg. They are a bit small to cut into quarters.

But remember - it is possible you still need a very low dose to control the symptoms because the underlying autoimmune disorder is still active. The aim with the reductions is to find the lowest dose that does that - not necessarily to reduce to zero.

Just wondering how you are a year down the track ? I am recently diagnosed and looking for some positive stories. My Dr and I are blundering along with The Prednisone - dropped it by 5mg which has sent the body into a spin. I am trying to eat anti inflammatrory foods and diuretic foods too, I just seem to have a whole new set of unpleasant problems/possible side effects now. Will these new problems subside as my dose is gradually lowered ?

That is funny!  We just had 2 Nor'Easters with very low pressure and I could feel that one coming!