The end ??

[Caloo650]

This is more of a whinge than a question. I have been trying to reduce prednisone to 3.5mg for the last 4 months. I was diagnosed 4 years ago with PMR and GCA. I was happy enough with the one to two year burnout prediction from rhumatoligist. Yes I have read all your stories and realise it may never happen.

Every time I drop to 3.5, after a week or 2 I'm stiff all over again so it's back to 5 where recovery is only a day or two.

Just had a dexa scan and I have been on Prolia for 2.5 years but still there is some deterioration in the bones.

Thankfully GCA hasn't raised its ugly head again.

Still waiting for the burnout Mr rheumy.

That's my whinge for the day.

Thank you all for the knowledge I never received from rheumy!

[SheffieldJane]

It is very cruel Caloo650 especially when the two year mark comes and goes. Chin up!

[Caloo650 in reply to SheffieldJane]

Thank you . I feel better now with my chin up and not down near my boots like this morning!

[DorsetLady PMRGCAuk volunteer]

Disappointing though it may be, why not just stick at 4mg for now, and don’t think about tapering for a while.

Try again in a few months, and also use one of the slow tapering plans we always talk about [if you aren’t already]…

Couple here-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Caloo650 in reply to DorsetLady]

Thankyou yes I have been slow tapering following HU regime. I'll stay on 4 now for a while and see if I settle down.

[Orange_2022 in reply to Caloo650]

I've recently got to 4mg....took a while! It's classed as a fairly low dose so I'm staying here for a bit before trying for 3.5. Seems to be a case of the lower the slower! Good luck.

[Caloo650 in reply to Orange_2022]

Thanks. I thought I was going slowly but obviously not slow enough. I'll be joining you on 4 for a while

[Orange_2022 in reply to Caloo650]

Happy to have you in the 4mg club! 😁

[Caloo650 in reply to Orange_2022]

Thank you for having me xx

[PMRpro Ambassador]

An awful lot of people ended up here to learn the truth when they reached the 2 year Promised Land but PMR was still very much there. Right from early days research it was said very clearly in the publication that there appeared to be two populations: a version that lasted a couple of years and another that was much longer. The mean duration of treatment in the group of patients who could permanently discontinue pred was about 24 months and that seems to be the figure that was picked up rather than the median duration of 38 months - meaning half of patients needed pred for longer than three years.

I'd say 4mg was pretty good going really.

[Caloo650 in reply to PMRpro]

Thank you for reminding me of the reality of this affliction. Family don't even ask about it anymore. Four years is too much for them as well!I'll plod on taking 4mg for a few more months, then try again.

[agingfeminist in reply to Caloo650]

most of my family gave up after a year...and treat me as a malingerer...I find this v hard especially as I have tried to keep my working life going throughout...and I have not asked for any help. Adrenal insufficiency takes its toll now that I am on a low pred dose.

Keep plodding!

[Thelmarina in reply to agingfeminist]

One of the more positive side effects of steroids is smooth facial skin and unfortunately that makes us look healthier than we feel. The only time when we might welcome a few wrinkles! We are also up against the fact that our nearest and dearest want us to remain the same as always..😀

[Caloo650 in reply to Thelmarina]

I can't say my skin has improved at all. I wish

[Caloo650 in reply to agingfeminist]

Mine don't even remember the diagnosis. If you can still walk and talk you must be ok

[agingfeminist in reply to Caloo650]

Oh frabjous day! You made me larff...absolutely spot on!

[Brooklyn747]

Can certainly identify with your disappointing dilemma Caloo650 as I was told by my Dr that all would be good and the disease gone by 18 months to 2 years. I remember thinking...great...but also what a looong time. HA!!

So passed the 2 year mark and have tapered to a low dose and rely on the advice of our angel volunteers who give us all practical advice based on reality.

Best of luck with your progress.

[Caloo650 in reply to Brooklyn747]

Thank you . I certainly appreciate the help I get from you all, now that I've given up on the rheumatologist.

[Mazxstitch]

Hi, I have been reducing by a quarter of mg over 5 weeks since I was down to 5mg very successfully. Cutting 2.5 mg tablets in half gives you 1.25. Cut a 1mg in half gives half a mg.

Using that, along with 1mg tablets, you can reduce from 4 to 3.75 or 3.5 or 3.25.

[Caloo650 in reply to Mazxstitch]

Thanks. I'm going to try that. I have a pill cutter

[Purplegloss]

I was disappointed to read that after 2.5 years using Prolia for your osteoporosis your DXA scan shows some deterioration in your bones. After my recent diagnosis of osteoporosis I am about to start on Prolia (I have the injection in my fridge waiting to be taken to the nurse on Monday 15th April. ) I am having it reluctantly, but my GP said it would be likely that I would end of with a very curved back without it, as did both of my sisters. I am currently going from 3.5mg to 3.25mg prednisolone, after having a flare twice when going straight from 3.5mg to 3mg by the slow method, so hope this works this time. Had PMR for 6.5 years now!!!!

[Caloo650 in reply to Purplegloss]

Oh gosh 6.5 years. Well (sigh) it will probably be my story too.There was also some improvement in the spine and femur but for some reason a deterioration my left forearm. Looks like I'll need to take up boxing !!!

[HeronNS in reply to Caloo650]

My last pred dose (at least for the time being) was Feb 1st 2024. The first dose was in June 2015. Fortunately I was at a very low dose for most of that time, but for what seemed ages I needed 1 or 2 mg.

[Purplegloss in reply to Caloo650]

That doesn't sound quite so bad then if you had some improvement in your spine and femur. Forearms don't get done here, so no idea if they are ok or not. I checked my medical record online yesterday, and noticed that my GP has put me down for a fasting blood test two weeks after my first Prolia injection which is on the 15th April, blood test on the 29th April. Testing for 2.5 OH vitamin D, Bone profile, and Renal profile. Anyone know why it is to be a fasting one? Is this normal practice?

[PMRpro Ambassador in reply to Purplegloss]

Not sure that fasting is the main concern in terms of the bone profile:

"Fasting before a bone profile test isn't necessary. If you are on calcium supplements, ensure you inform your doctor because you may need to stop for a few days before your test. You also need to inform your doctor if you take any mineral or vitamin supplements as they may affect your result.

blood.london/blog/bone-prof....

This

testing.com/tests/renal-pan....

says you need to fast for some components of the renal profile - I'm having a mental blank as to what it includes that needs to be fasted. Creatinine possibly - shouldn't have a high protein meal the nght before either. If glucose is included that should be done fasting,

[Purplegloss in reply to PMRpro]

I saw my GP last week and he knows I take vitamin d 2200 iu and k2. I had a vitamin d check the week before I saw him and it is ok.

[Purplegloss in reply to PMRpro]

Just checked via email with my GP and it shouldn't say fasting apparently. Good job I checked.

[HeronNS in reply to Purplegloss]

Interestingly I learned a few months ago that things like iron supplements shouldn't be taken on the morning of a test. As I usually get bloodwork done within a couple of hours of breakfast I wonder how much that has skewed certain results all these years? Probably not enough to be of concern, but still....

[PMRpro Ambassador in reply to Purplegloss]

Not that it matters - here they say that all blood tests should be done fasting, then you know where you are and it doesn't matter what is being done!

[Caloo650 in reply to Purplegloss]

I think maybe because the bones in forearm are thinner than else in the body and to be fair it was the arm and wrist that was broken 3 years earlier

[HeronNS in reply to Purplegloss]

Have you been doing anything in particular to help your bones? Have a look at my story in case there are some ideas there for you. Prolia is a bit questionable because once you start it, and I hope your doctor told you this, you will not be able to stop unless you switch to another medication.

healthunlocked.com/pmrgcauk...

[Caloo650 in reply to HeronNS]

Yes unfortunately I was told that but I think I learnt it once I'd started it and from HU. I have as much calcium as I can in food each day, trying to stay above 1000mg. I walk a lot which is probably why my femur reading was an improvement. I'm trying to lift weight for the arms but not very motivated. I figure I wouldn't even know I had it if I hadn't falled and broken shoulder and wrist 4 years ago xx

[Caloo650 in reply to HeronNS]

Gosh that's a lot to take in. I take vitamin D of course but will look at getting vitamin K2. I'm not good at taking supplements. I don't have other health problems atm as yet.I do try and pretend there's nothing wrong and pretty fastidious about diet!

[HeronNS in reply to Caloo650]

Vitamin K2 is important, especially because so many of us are deficient in it. And what a pity doctors don't get more training in nutrition, or at the very least that patients with any disease affected directly by nutrition (diabetes is obvious but others like bone thinning are not) get some direction from a qualified dietitian. Not that even the dietitians always know about K2. My daughter, at the time a newly minted registered dietitian, didn't - but she does now!

[Purplegloss in reply to HeronNS]

Actually I told him that I knew I would have to continue with it, but pretty sure he knew anyway.