Wishing you all a happy xmas - whatever faith or none!

What dose now? And what did he say in the end?

Next week I am starting my 6th year on prednisone.  I am on 2 3/4 mgs and not having much success getting on 2 1/2 mgs......I think the cold weather is the issue with my attempted reduction. I was reducing just fine until winter arrived. I always use your DSNS method......and thank you for that too!

i think my doctor, a GP, now has other patients with PMR, or he has done some research.  He happily renews my Pred prescription, has given me a standing blood test so I can check my CRP whenever I want, he knows to check my osteopenia bone loss periodically and at one visit he basically described your DSNS to me!  He is way more on board with how to treat people with PMR and I am grateful for this. 

If only there were more like him! But you are at a dose that you can stay at indefinitely without harm.I think many top experts do appreciated that many of us may need a very low dose like this for a long time - but they make a mess of getting the patient to it. They seem happy enough once patients get to 5mg - if only they could see you can't rush down the motorway every time!

How lucky to have such a good GP....hang on to him!

​I am intrigued as to how you manage the 3/4mg do you use a snipper??  I only ask because I am in my 6th year, and VERY sensitive to any drop in dosage......

Anyway, good luck and happy healthy new year to all.........

Hi Linda,

What dose are you on?

its hard to accept that I’m in year 6.  I’ve adopted a PMR lifestyle (careful with diet and activities and stress) and the PMR just won’t go away.😡

i am like you....have to be very slow when reducing. I can usually zoom through the first half of the DSNS but then I have to repeat some of the steps, and even increase my dose a few days, while moving through the second half of the DSNS. 

To cut my pills I use a chefs knife.  Now and then I end up with some crumbles but usually I have good pieces. If I have a large half I cut it again for 2 quarters. I end up with large and small halves and quarters.....and then each day I mix and match them so I end up pretty close to the dose I want. And really, we don’t need to be super accurate because the next days dose will balance it out 😊

i tried a pill pill cutter but I have way better luck with a knife. 

Do do you have any ideas about successful reducing since you are sensitive to changes too?

I am wondering if exercise helps.  When I get to my difficult DSNS steps I tend to rest a lot but I have been thinking that a short walk on these days might help. I’ve been afraid to overdue as I don’t want a flare!

I think a gentle walk ALWAYS helps. Even if it is 5 mins out and 5 mins back. And especially if the sun is shining!

I am on 10 mg at the moment....I got off pred on instructions of rheumy after 18 months but it never really went away, and was back where I started.....struggled on.....asked for second opinion......he was worse!😕. His idea was (still is) if you get pain when lowering pred....it's not PMR!!.........so stressful seeing him, he got me to lower at 5mg from 15 every week.....the pain was intolerable.....

3 weeks ago saw lovely registrar with completely different attitude......."do it slowly my way".......and I am.....

I have always been very sensitive to meds......even struggle with paracetamol.

Today I was standing in the kitchen talking withy husband, everything for a split second seemed to stop, no heart racing but felt weird and had to sit down...pred or not...who knows....

Maybe this year doing it my way.....dead slow

I I'll be able to get to abut 7ish.......I would be happy with that.......

Well, good luck.....happy healthy new year.......and to you all?

Linda -if it happens again please ask your GP to do some cardiac testing. I have atrial fibrillation, it was caused by the autoimmune part of the PMR damaging the electrical system in the heart. That leads to the heart not beating evenly - you may not have had racing but the rate may have slowed right down briefly and left you feeling the effect.

Thank you, it did cross my mind maybe it still could be to with my heart....and yes I will tell my doctor next visit.....I am about to start onBP pills, doctor thinks it is bordering on high.....I take it quite often it averages 155/80.......it surprises me they think it's high,but what do I know......just hope I can tolerate the meds for it...perhaps that's the problem?........but thank you again.....

Hmm, yes - but WHY is it high? Mine was because of the atrial fibrillation. The guidelines for high BP get lower and lower all the time!!!!

Yes, they do keep lowering the guidelines, all my friends and lots in family are on BP pills....thought I was going to get away with it!.....does pred not push it up?.......glad I hadn`t started the BP pills or I would have put my "funny turn" as my mother would say...down to them....

Yes, pred can increase BP - although some people find their BP falls when they start on pred! In that case it is probably that arteries were inflamed, the walls were swollen and the arteries narrowed as a result. 

Before starting you on BP meds did your doctor do a 24 hour Holter heart rate or BP monitor? If you get more of those "funny turns" do ask for one - it would be interesting to know if anything happens at the time. My BP dropped like a stone after a wave of a hot flush - it was absolute coincidence we found it though as I had a flush followed by feeling dizzy just as the monitor switched on to do a reading. They only measure BP every half hour so had it happened between we wouldn't have seen.

That is what I was going to do, ask for monitor first...never been tested with that so far.....I do have lots of hot flushes for no reason that I can say.....it was quite unnerving how the "funny turn" came right out of the blue.....not after a flush or anything.......too much Christmas excitement maybe (joke of course!)......

?Well, I`m having a good start to the new year then....never mind, best to know what`s going on..... it would be awful to be driving and it happened...could easily lose one`s confidence if it happened too many times.....

?Well, hope the new year is good for you and OH, thanks for all your advice, much appreciated......don`t know why, but I go on he other Health website that you do....and find this much easier to navigate...........must be me.  Happy new year.... 

I am one of those people Eileen spoke about!  My blood pressure reduced significantly on pred.  When I was 42  (many, many years ago) I suddenly felt ill and as I had very low blood pressure I decided to go to the doctor and be checked over - the result was 240 over 160!!!  Dr hospitalised me straight away.   Even after coming out of hospital it took a time to get below 180/100, so since then I have been on bp tablets.  When I started pred (i was 72 by then)! within a short time my bp dropped and has stayed low until now (unless I forget my pred).  What does everyone on here keep saying “we’re all different”!!

Re the feeling faint!  I black out 3 or 4 times a year and the drs haven’t found out why so I have had to change my life.  No driving, fear of going out alone, no holidays, no standing still for long periods.  So, watch those feelings of faintness.  Perhaps you could try the old fashioned help of always having smelling salts with you.😏😏