Predict cut back

[TINYdes]

Hi again everyone. Need some more advice. Been on pred now one year. Have managed to get to 6mg. Tried to cut to 5.5 and felt terrible after one day. Went back to six again. Have been on 6mg now for 25 days want to try 5.5 again but am worried about the out come. Was told today that pred can be harmful on the liver. Any thoughts on that. Can anyone tell me at what dose the adrenal glands start to wake up. I am feeling very low today. Maybe just feeling sorry for myself. Missing family during these Covid times. I am going to turn 71 years old Dec 7th. I wonder if it takes longer to recover from PMR at a older age. Thanks everyone for letting me rattle on. Everyone try to stay safe!!

[SheffieldJane]

You have reduced quickly. It took me about 3 years to get to where you are. You are right, it is around your dosage that things get difficult with your own Adrenal function having to wake up and produce your body’s own Cortisol. It adds complexity and symptoms to the tapering process. Taking it very slowly is good for this process of recovery and to avoid flares. I would relax a bit and take a break for a bit, then try again later, things shift. I stayed at 7 mgs for a whole year before I could comfortably get down. Statistics show that it can be several years ( 5.9 years on average) before PMR is done with you. The aim is to find the lowest possible dose of Pred meantime.I am sorry that you are feeling low, during this very trying spell. My family, including 4 young grandchildren, are in Australia. We’ve missed two precious visits and the children are growing up so fast. I was reading an article about enabling time flow to take place. It’s about finding something that you love to do and becoming so absorbed in it that you almost lose yourself because you are so involved in it. That could be crafting, walking the dog, painting, rug making, crossword s, doing bits to the garden, playing the piano, writing, reading. You name it. I know from experience that this can enable you to feel utterly content. I have made a lamp, done a Japanese style painting, written and directed a Halloween play and recorded it for the children, who loved it. Stuck in drifts of snowdrops and Narssisi for the spring. Try not to be too despondent, this will pass, the green shoots are showing.

[TINYdes in reply to SheffieldJane]

Thank you so much for the encouraging words. I have taken to drawing and working on jigsaw puzzles. I have five grandchildren. Talk to them often. We have had a lot of snow here and it is cold and dreary. It is good to have found this site to be able to talk to people with the same condition. Thanks again.

[Mikb in reply to TINYdes]

Lots of snow? Are you in Edmonton? No snow in Toronto.

[TINYdes in reply to Mikb]

Yes in Edmonton

[Pixix]

Same boat nearly!! One year from diagnosis. One week ago I cut from 7mg to 6mg & am having a bad time (worse than any other reductions so far). Like you, I’m unusually depressed & edgy, & the fatigue hits me late afternoon like it did when first diagnosed. We’ve been shielding since 1 February, except for 3 weeks in August, but I think it’s the Pred reduction that’s making me ‘low’. I’m going to stick it for 2 weeks, as it took that long for my body to accept a previous reduction, then I’m going back up 1mg & try later on. I’ve taken up crochet, we are building a model railway, I have a piano...& lots of garden work as we have overhanging huge oaks out there, dropping leaves like mad! Suddenly, I’m very critical of people breaking the national lockdown rules here, too! I have a very supportive husband so I’m lucky, but I think his patience is wearing thin!! We’ve had no visitors since 1 February, and missing friends & family. Hang in there, it will improve, I’m sure.

[TINYdes in reply to Pixix]

I want to thank everyone for their words of wisdom. Hope we all get better soon. It certainly doesn’t help that winter has arrived with a vengeance. Don’t know where u are. I am in Alberta Canada. As I said before it is great to have this site to know that there are plenty of people who are going to the same difficulties. THANKS AGAIN 👍. STAY SAFE EVERYONE!!

[Pixix in reply to TINYdes]

I’m in the south of England, & it’s unusually mild, actually! But I have friends in Canada & have fisted 5 times (different areas), also went there on business sometimes. I remember being in Montreal in February...I was in my ski suit to go shopping, even though it’s mainly under cover there! You really can do ‘cold’ out there, but it truly beautiful. I’m struggling badly, having dropped my dosage just six days ago, but I’m determined to give it two weeks & see if my body gets used to it! Take care, good to hear from you, Sara x

[TINYdes in reply to Pixix]

How many mg are you on and how long have you been taking prednisone?

[Pixix in reply to TINYdes]

Sorry to copy & paste, but I was asked this on another thread his afternoon...so here is my PMR history...Sadly, 15mg didn’t work last December, so in January i had to go up! We were away in USA until 1 Feb, so then talked to GP & started descending...generally at 1mg per month. Once I got stuck & stayed on a dose for 6 weeks...then in August I had a tooth infection that didn’t improve with antibiotics, so went up for two weeks then...now down to 6mg the past week & due to try 5mg in 2 weeks time! I’m just very fatigued this week, but very busy, too! Still managed to hike for two hours last week, but on the flat & was totally whacked when I got home...useless from 3pm onwards!! Hope this helps, sadly I can’t remember when I started to grab my clock (poor eyesight!) brain registers the time, shove tablets down with water, & turn over! These days I only eat the biscuit about 70% of the time, but on a lower dosage, I’m not so sure it’s that essential! Good luck!

[SnazzyD]

You’re not rattling on, this is a difficult time and the disconnection people are suffering is dreadful. You are not alone in thinking that after a year it should be done now. In fact you’ve been speeding down the Pred ladder and have hit the adrenal phase. I don’t know about you, but I was certainly sold the idea that it would all be plain sailing because the dose is low. The adrenal bit was glossed over as well as the fact that autoimmune conditions have their own timetable and the Pred is just an anti inflammation safety net while the immune system decides what it’s doing. You’ve done really well to get this low so soon.

I was not aware that Pred was a particular problem for the liver. Even on high doses it wasn’t an area of concern particularly. Who told you?

At this dose level a reduction was very apparent quickly because it took months for my adrenal function to catch up. What do you mean by you “feel terrible”?

At this level, just to function I had to reduce by 0.5mg every 6-8 weeks by introducing the nee dose in slowly. By 3mg it was 0.5mg every 10-14 weeks. 1mg-0mg took the best part of a year. One step dropping down would have been too sudden.

[TINYdes in reply to SnazzyD]

By terrible I mean I was barely able to function in every day actives. I felt weak and very fatigued. I still don’t feel great. But don’t want to move up to 7mg. I find it very hard since I dropped from 10 mg. Each and every drop seems to be worse then the previous one. I will stay at 6mg now till I really feel much better. Thank u. Oh yes it was my son who told me about liver problems. He read it on the internet. All my family can’t understand why I am not completely better. That does not make it any easier to cope.

[SnazzyD in reply to TINYdes]

Yes, that is the problem with chronic illness; people time out, a sad fact for many. You really have to stand up for yourself and demand some consideration at a time when you feel you can’t.

Sadly no matter how much you don’t want to slow your decent, you really do have to let your body make the calls. Personally I decided 7mg was a no man’s land of a dose and toughed it out to 5mg at 0.5mg every 6-8 weeks down to 5mg. I had no GCA symptoms though so felt confident to plough on, but I did have fluey aches and pains. I had months of feeling I had nothing in the tank until about 5mg but didn’t feel human until about 3mg. After that it reduced 0.5mg every 10-14 weeks. It still wasn’t easy.

[TINYdes in reply to SnazzyD]

Thank you for your reply.

[DorsetLady PMRGCAuk volunteer]

As others have said you’ve got to 6mg quite quickly - so maybe that is the dose you need at the moment.. won’t always be, but is now.

When you try reducing again, try a slow taper - this is just one version, there are others - healthunlocked.com/pmrgcauk...

Your adrenals should be thinking about working again, so another reason to taper slowly - eases them back more gently. That might be why you feel low.

Pred may be harmful to liver, but being on too low a dose of Pred will be harmful fir whole body - I was on Pred for 4& half years, starting on very high doses, and my liver is fine.

As for age and recovery, don’t think there’s any research to prove if the older you are the more difficult it is.

[PMRpro Ambassador]

Why the liver? My liver is fine after over 11 years on pred so stop worrying about that. It may be that someone doesn't understand something they have read: prednisone must be processed by the liver to turn it to prednisolone which is the active form. That usually comes with the comment that prednisolone is recommended for patients with liver problems - it doesn't mean though that pred is necessarily bad for the liver. There are other drugs used in PMR management that have far greater effects on the liver.

You are probably at about the sort of dose that the adrenal glands need to start contributing. Like SJ though I agree you are trying to reduce too fast - you aren't heading relentlessly to zero, you are looking for the lowest dose that is effective and gives the same result as the starting dose did. I think you have arrived - providing the PMR symptoms are managed well.

Reducing every 25 days or so is far too much after 10mg, the lower, the slower is a good mantra.

[piglette]

It is not the pred we should worry about, it is the alcohol during Covid!

[123mossie]

I can identify with this thread, I'm about the same place but learning about the adrenal aspect is a new chapter, gp doesn't seem to want to engage with it. I imagined it was just slow tapering, but this fatigue thing is something else!

[TINYdes in reply to 123mossie]

How many mg of pred r u on? How long have u been taking it?

[123mossie]

I'm currently on 5mg having tapered from 15.mgm last Dec. I tried to go down by 0.25mgm towards 4mgm a week ago, only lasted a few days before the awful fatigue kicked in. Strange though, my crp went up but I've had no pmr pain at all. What a strange disease this is, so difficult to know where you are with it!

[TINYdes in reply to 123mossie]

Yes I know. It is 3:40am and I am wide awake. I wake up feeling like my body is on fire. Have to drink lots of water and take a Tylenol then will try to get some more sleep.