Happy at 4mg

[Tonch]

Hi, I’ve now reached my maintenance dose of 4mg for PM after 4 months taper from 15mg. I tried 3.5mg for a couple of weeks but the stiffness and fatigue started to build. I have now decided to stay at 4mg for the foreseeable as I can continue my sport and work at this level. A lot of people seem determined to continue to reduce, so is this level safe for the medium to long term as it is below the physiological dose? All my blood glucose and cholesterol results came back fine and my weight is low and stable. Only fly in the ointment is osteopenic spine -1.5 result after only 3 weeks on 15mg so unlikely to be the cause. On D3 and Mg, K, Ca supplement and are on a gym program. Life is good again.

[DorsetLady PMRGCAuk volunteer]

“so is this level safe for the medium to long term as it is below the physiological dose?”

As safe as any drug, and certainly no discernible side effects - and if it’s giving you a good quality of life - then go for it.

Doesn’t mean that one day you’ll need that much.... but for now - go with the flow!

I’m sure many will envy you on 4mg.

[Tonch in reply to DorsetLady]

Many thanks, but all else considered, I still of course envy those on zero! I still get slight stiffness, so when that goes, it will be time for a drop.

[DorsetLady PMRGCAuk volunteer in reply to Tonch]

Then, and only then !

Zero is good I’ll agree, but unfortunately is also reminds you that Pred was maybe masking other niggles that go with age! 😳

[Tonch in reply to DorsetLady]

Possibly, but surely if the Pred is only replacing natural Cortisone, then it can’t at such low levels?

[DorsetLady PMRGCAuk volunteer in reply to Tonch]

But even at low levels it’s still controlling the inflammation to some degree - and inflammation is caused by lots of things - not just PMR or GCA - so it maybe not masking completely but helping.

[PMRpro Ambassador in reply to Tonch]

It isn't only replacing natural cortisol. That doesn't have the same antiinflammatory effect pred does. But both do the other things corticosteroids do.

[ali5son]

Also stuck on 4mg but after 2 years did try 3 1/2mg but some stiffness. Also did do dead slow method of tapper and no issues until then. Also still work 2 12hr shifts a week but I'm knackered after them and take few days to recover. Got results from bone scan this morning and also ostopenia I'm turning 60 next week

[Tonch in reply to ali5son]

Good luck with the scan - I’m also due one in 2 years. I’m also but in 60 in February so a youngster! Lol 😂. We’ll have to form a 4mg club?

[PMRpro Ambassador]

A t-score of -1.5 is barely off normal and really nothing to worry about.

Remember that for many it is one MORE drug and it is very depressing looking at a dosette box sometimes Plus many are being harangued by their doctors to get off pred and a lot of the older generation regard doctors with a degree of awe!

[Tonch in reply to PMRpro]

Yes I guess I would also take that attitude and sympathise. I’ve already turned down a Proton-pump inhibitor, and a Bisphosphonate. Just the Pred to deal with now.

[Yellowbluebell]

Why are you racing to zero AGAIN. it isnt a competition or running race. Its what is the right dose to keep your pain at bay. Anything under 10mg is considered a reasonable dose to stay on for a while. You envy zero but dont appreciate you have got to 4mg a damn sight quicker that virtually anyone on this forum. Maybe you need to consider yourself fortunate rather than upset over not attaining zero after 4 months. I would, thats for sure.YBB

[Tonch in reply to Yellowbluebell]

Quite the contrary. Can I suggest you read my original post again. As for envying those who have tapered to zero, I think it would a strange PMR traveller on Pred who didn’t.

[Yellowbluebell]

Nope i can honestly say i dont envy anyone on zero because i know that most of them have fought a 4/5/6 year battle against pmr/gca and have bloody earned their zero. Its more respect than envy. Depends which way you look at it!

[Tonch in reply to Yellowbluebell]

Yes respect too, but don’t envy those who are still in pain of course. I would prefer to be on 4mg and with none or little pain than zero with lots. That is why I’m sticking on my 4mg for the foreseeable.

[Arflane97G]

Well done you, so good to hear good news 🙂

[Hellyowl]

I was well on 5mg for 6 month last year with a diagnosis of GCA 3 years ago. I reduced dead slow to 2.5mg and was very tired and in pain. Consultant decided I have PMR as well. I am now feeling well on 8 mg. I discussed trying to slowly go back to 5 mg and then stay there for for seeable future. Consultant agreed saying it' s better to have a life.

[PMRpro Ambassador in reply to Hellyowl]

Another to be cloned!! Where's that?

[Hellyowl in reply to PMRpro]

Peterborough, it was my Ophthalmic consultant, but Endocrinologist agrees and Rheumy is a bit of a fence sitter.

[PMRpro Ambassador in reply to Hellyowl]

Yes - I know you had a super endo! I can cope with a fence sitter as long as they don;t force me off pred

[Hellyowl in reply to Hellyowl]

Greek doctors, I love them

[Yellowbluebell in reply to Hellyowl]

I could live with anything under 10mg tbh but 8mg is great. X

[Bern435413]

I am also at 4mg using the DSNS method to try to reduce to 3.5mg. It seems bizarre when I split a 1mg pill that a crumb can cause so many problems. GP wants me off by spring next year but I will go at my own pace.

[Hidden in reply to Bern435413]

Bern, are you in the U.K.? As we can get 2.5mg Tablets so just add 1mg & you have an accurate 3.5mg dose.

Lots of people split the 1mg tablets but personally l prefer to use 2.5mg tablets.

Kind Regards

MrsN

[Bern435413 in reply to Hidden]

Hi - yes I'm in the UK and didn't realise there was a 2.5mg option, thanks very much I will ask my surgery.

[Hidden in reply to Bern435413]

The Chemist might have to order them in, but it only takes a day AND they are pale yellow colour so easy to identify 😉

[BonnyQuine in reply to Hidden]

Mine are a v dark colour - I think blue. Different brands vary quite a bit.

But I certainly agree that 2.5mg is the way to go.

ATB.

[Hidden in reply to BonnyQuine]

Depends on the manufacturer, my Amitriptyline can change from a pale blue to a rather unnatural electric blue 😉

[Yellowbluebell in reply to Hidden]

My amitriptyline varies betwen dark cream to a rusty brown!!

[Hidden in reply to Yellowbluebell]

Higher Dose?

[Yellowbluebell in reply to Hidden]

Mine are 50mg!!

[Hidden]

Comments have been Removed to this Post as they could cause unnecessary worry or concern.

MrsN

Moderator

[PMRpro Ambassador]

Pred maybe does increase risk of some cardiovascular disease - but GCA certainly does if not treated. PMR isn't quite so clear. The increased risks associated with higher doses of pred must be balanced against the risk of leaving the vasculitis untreated which would lead to blindness which is life-changing - and stroke or MI which are life-threatening. Glaucoma is far less of a concern - there are multiple ways of managing that,

[Hidden]

I would prefer you to remove the word deadly, without the evidence to back it up.

[Hidden]

I am appalled by your remarks. I know personally that the prednisone saved my life in so many ways! The pain I was enduring for the 5 months before I was properly diagnosed was enough to make one not want to live. I couldn’t do much but eat NSAIDS and use constant heat pads. Sleep was nonexistent. I couldn’t dress myself without help. And I was a young strong 60. Never any health issues. It just struck me down outvof the blue. When I went on my 15 mg dose within days I had my life back. I could walk again. I could sleep again! I could be independent and not ask my husband to help me pull up my jeans and put on my shirt!

My depression lifted.

I have tapered carefully and am on 10 mg. After 10 months. I taper carefully and pay attention to the affects. So I have come this far and it bugs me you will make some people compare themselves and feel at the same time afraid of using Prednisone. Yes every drug - including Vitamins have side effects if used inappropriately. Used properly and for a good reason there is no reason to fear. There is much more to fear if the PMR/GCA are not treated!!!!!!!!

You should retract your fear creating comments and perhaps reflect and reconsider why you feel the need to do this.

[Hidden in reply to Hidden]

Comments have now been removed.

MrsN

[Grannychristine]

Glad to hear this. It gives me hope