Any advice please

Hello, I don’t know about PMR as I have only had GCA so far. Since about 6mg reducing has been much harder. I reduce by 0.5mg and roughly do DSNS. By the time I get to three days in the week of the new dose I wake in the mornings feeling like I’ve been sat on by an elephant and feel groggy. I have pains all over my body that move about and sometimes the fibromyalgia spots are bad. I now know that I have a month of this and then I pop out the other side like a cloud has lifted. So far I’m down to 4/3.5mg and the pattern is the same, this week I feel like I’m 500 years old. If I could cut my enteric coated tabs I’d do 0.25mg jumps for sure.

So, I don’t know if it is your PMR flaring or just your body adjusting, but it was the all over nature of your pains that made me wonder.

You and me both Ventdunord. I was reducing to 5 mgs and got a chest infection which heralded stiffness and pain. I have earache this morning and what feels like my first ever flare symptoms. I think that I would have been alright without the external attacks on my immune system. Really fed up! I found 7 mgs my sticking point, I thought I was on the home stretch. Patience, I suppose.

Hi

I’m at a similar point except at a bit higher dose 9/8mg but have been down to 5mg

I think sometimes we forget that Pred also masks a lot of our other aches & pains (old war wounds) like you l’ve been on Pred 6years & we may have developed other issues in that time which were masked by the Pred. I have knee issues which have been made worse by Chemotherapy, l am still very stiff & achy in a morning but do improve as the day goes on.

I’m not a 100% of ‘Not That Great’ as my husband describes me!

Have you had any other blood tests checking for Rheumatoid Levels?

I’d be interested to read what others think?

Best Wishes

MrsN 🌺

My first thought would be RA in your case. How can they be sure that it isn’t? The presenting symptoms are almost identical. PMRPro has written about this a few times.

As long as you get the appropriate treatment. Good luck!

I would take your current dose but take your tablets as early as possible, then go back to bed and then give them time to work. Have a warm/hot shower and see if that helps.

If it does not, then I would be inclined to take 10mg for a couple of days and see what happens, in the great scheme of things, it won't hurt.

CSR and ESR are guidelines to say something it going on..........whatever it is might not be PMR. Also there are people with both PMR and'or GCA whose ESR and CRP never move.

I too have ongoing worsening pain in shoulders and knees after each drop in dose, including increased pain in right knee as my injection wears off (I have OA in both). I try and stick it out for 5 days and eventually the PMR symptoms lessen. Those first 5 days I try to get plenty of rest, don't overdo it activity wise, and go in our hot tub (or hot shower) daily, sometimes twice. I find the heat really helps. This way I avoid upping my pred. Lots of patience is required, and by the end of it all for us, we will be experts in knowing our own bodies and reading the symptoms.

Somewhere on this forum I once read that if you have symptoms directly after lowering dose (with the first 48 hours), that is more likely due to pred withdrawal. If symptoms emerge days later, it is more likely PMR as the inflammation is building up as the dose is not high enough to manage the inflammation - hence why the symptoms emerge days later.

Good luck with your continued taper, must be very frustrating with each attempt to lower. Sometimes outside factors such as stress/life events, additional illnesses, etc also impact our tapering efforts. Hoping you get some relief soon, even if it does mean upping the pred for a few days. Sometimes this is the only way to clear out the inflammation so you can move forward.

That's good to hear, hope you will eventually reach the magic Zero .

I think your husband was so right when he used the phrase ‘not that great’ Mrs Nails.That phrase really describes PMR /GCA,l often think of how l used to be,certainly not the same now.l cut a tiny piece off of a 5 mg,Pred . tablet for the last two days,hoping to start getting back to the 3 mg., dose l was on previously.Today l am feeling NTG,plus a headache and much louder tinnitus pulsing in my head.l am also feeling exhausted .l do not like being on 5 mg.,and now am not sure how long to carry on with it before l try reducing again.l have been asked to go out with friends to various groups and outings,they are so enthusiastic about getting out each day,l can only manage perhaps a couple of outings during the week,having to spend the following day taking things easy,it is so hard to explain to them how l feel .l understand howVentdunord is feeling ,and l think that pain killers can ease the pain but can have unpleasant side effects. I hope that everyone will eventually feel,a lot better,and that you will soon recover from your chest infection Jane.

You need this: Synacthen Test.

This is rarely offered to you, as I have found out over the years. I was referred without asking. It should be done when you get to 7.5mg or below, mostly done when down to 5mg.

You have probably been on pred for at least three years and are also 3 years older.

You are told to carry your Blue Steroid Warning Card for at least 1 year from ceasing to take pred. This is to alert medics if soemthing goes awry.

I could not count how many times I have posted this:

Your adrenal glands have to wake up and start working again and it can take up to a year for them to become fully functional. In some cases they never wake up , I have been told that the incidence in low.

But you need to know they have started to wake up. An adrenal crisis is not to be sneezed at...................so insist.

Put Synacthen Test in your search engine.

Ask your Pharmacy for a blue steroid card. I was sent one by the charity PMRGCAuk when I joined and another at renewal. Alternatively, search online and print your own.