GP update

[Middleton22]

I am now into my 3rd week of taking 15mg Pred and feeling much better. Spoke to GP this week who seemed much more knowledgable about PMR than when I spoke to her before. She told me to stay on 15mg until middle of March and then try to reduce to 12.5mg by end of March. Does this seem doable? Getting myself a bit anxious. She is prescribing 5mg and 2.5mg tablets for me to order online. Discussed going on AA but declined unless a scan showed otherwise so she agreed that maybe have a bone scan in 6 months time to check bone density. Any thoughts?

[DorsetLady PMRGCAuk volunteer]

She seems to be leaving you at 15mg for a reasonable time (4-5weeks) - that’s good - how do you feel on that dose?

The drop to 12.5mg is recognised-and achievable for some, but not all, so you’ll have to see how you go.

If you are unsure after about a week on reduced dose you need to contact her -don’t leave it too long.

But remember after any reduction you may feel a bit off colour for a few days whilst your body adjusts to new dose so don’t panic.

However, I would request 1mg tablets as well on prescription. That way you have more leeway when reducing -although 2.5mg can be cut to give smaller dose - provided they are plain white version.

Good luck

[Middleton22 in reply to DorsetLady]

Thanks for a quick reply. She did agree to prescribe 1mg if I needed them in the future and I am having my Vitamin D levels checked tomorrow...calcium levels are fine. Also having my blood sugars checked as I am pre-diabetes but not on any medication for diabetes. Should I just start on 12.5mg every day and see how I go or alternate.

[DorsetLady PMRGCAuk volunteer in reply to Middleton22]

Personally I'm not a great fan of the alternate day regime...l think it confuses the body - and no matter how long you stay on it, you don't appear to be any further forward at the end than you do at the beginning... still on 1 day high dose, 1 day low.

With any slow taper you may have days when you have a lower and/or higher dose sandwiched, but you are gently increasing the number of days on lower doses as you go along whilst gently decreasing the number of days at higher doses.

With an alternative day taper you are doing one high, one low all the way though … slower one you are introducing the lower dose every few days, so I think easier on the body.

Hope that makes sense…

Slower tapers to chose from here if you want to go that route - healthunlocked.com/pmrgcauk...

You can try "overnight" drop, I found it okay at that dose, but I had GCA and was well into my journey. As you are new, having PMR and it being first reduction it may not work for you.

[SnazzyD in reply to Middleton22]

I found alternating was too much change when I tried it at lower doses, so I kept getting withdrawal the next day. With Pred, one’s diet needs to be very much lower in carbohydrates than it is with just healthy eating alone. This is because the Pred forces the liver to randomly convert glucagon into glucose which raises the blood sugar. That is before you even eat a thing. I started on 60mg Pred for GCA but until I got to below 3mg, I had to cut out rice, pasta, bread, potatoes and maize. People do differ in how much carb they can eat, but on Pred you don’t get away with much. Also, until you get below 10mg you may need to cut out most of your salt if you find you are getting fluid retention. Again, it’s individual and you need to experiment.

[SnazzyD]

Well it makes a change from, “you must take Pred, get off Pred now it’s going to kill you!”, so you’re getting a good month on 15mg. You might want to ask for 1mg on the grounds of just in case you find withdrawal a bit of a struggle. 2.5mg may be fine and you get no withdrawal or flare of symptoms (two different things as you probably know) but it’s good to be ready. As for the scan, well done for demanding it. I did the same and had one a few months later and didn’t need AA. The doc said not to worry it wasn’t straight away because the Pred effect would take a good 3 months to start to do anything on the bones if it’s going to. Have you got your vitamin D levels checked. A low level will make even AA less effective and any dietary support a bit pointless too because calcium needs it to do it’s thing. My levels were in my boots it turned out and to a large extent I felt an improvement after a course of high dose vitamin D for three months. I know it was that because the vit D test was in the January and I had already been on treatments 6 weeks before Pred started.

[Middleton22 in reply to SnazzyD]

Having my vitamin D levels checked tomorrow...calcium is fine. Many thanks for replying

[PMRpro Ambassador]

Seems reasonable - but I would ask to be put on the dexa waiting list now - the sooner the better. Some experts say the greatest bone density loss is in the first 3 months of pred - presumably because that is the period with the highest dose. Certainly mine was done 3 months in - and it has barely changed in 11 years since.

DL has covered the rest - I don't like alternating days of a dose unless you approached it via one or other of the slowed tapers where you do have alternate days at some point.

And Snazzy has covered the dietary carbs bit.

But yes - hallelujah, not someone rushing you down the dose before you are ready!

[piglette]

Sounds like you have a sensible GP, I wish I did! You should be offered vitamin D with calcium to guard against steroid side effects.

[Hidden]

Good morning I am not expert but do have access to a PMR specialist and researcher she is adamant that if you are on steroids take AA. The 2.5 reduction should be ok ( based solely on my experience) it took me 10 months to get from 15 to 0

After a fairly swift reduction to 10 mg I reduced on average 1 mg a month. I have been off pred entirely for 10 months now good luck

[PMRpro Ambassador in reply to Hidden]

I do too - and he doesn't think I need AA. My bone density with a dexascan was fine 3 months after starting pred, I've had 3 more dexas at intervals, the last 18 months ago showed almost no change in t-scores in 11 years of pred. Even the local osteoporosis guru told me to keep doing what I had been doing. I took 4 AA tablets right at the start, nary a one since.

[Jazz77]

What is AA please?

Just reducing to 5mg of Pred but as taking full pain relief for headaches and have double vision now.was clear of stroke ct scan at A&E and sight seems ok but focussing bad and terrified of falling.

Oh how our lives change!

[DorsetLady PMRGCAuk volunteer in reply to Jazz77]

Alendronic Acid - a bisphosphonate taken to protect bones. Not required for many, unless you are have/or are susceptible to osteoporosis - but there are plenty of other ways to protect bones - see ROS site - theros.org.uk/

Not sure what illness you have, nothing on profile - but as you mention headaches and double vision do you know what's causing them... if not, think you need to find out.

[Jazz77 in reply to DorsetLady]

Thank you so much Dorset Lady.I’ve had PMR for 5 months, scoliosis , but compared to those in Ukraine ..I try not to moan as I see the suffering of people on this site.

[DorsetLady PMRGCAuk volunteer in reply to Jazz77]

Ok, agree others in a lot worse situation than us, but bit concerned about the headaches/eyes, could be Pred, but could also be GCA, so do get it checked please.

You cannot do anything about Ukraine, but you can look after your own health. 🌸