Should I contiue with latest drop when feeling dreadful fatigue etc most days?

[Ebiker]

From previous posts you will know that I started knock out fatigue in May after some stress.I was on 6.5mg pred.

Slow tapering plan and understanding more about adrenal insufficiency from DL, Snazzy, Pmr Pro and people on forum helped me here. I increased to 7mg for 5weeks. Without going into detail there were other health issues but they have been addressed. One was low B12.

Gradually started having better days after B12 injections, so slow tapered to 6.5mg through July. I feel that my symptoms are probably a mix of B12 and adrenals trying to waken.

I was able to functon normally some days. However the B12 did not work magic and doc gave me another course of 6.

Endocrinologist tells me it can take time.

I started to slow drop to 6mg a couple of weeks ago as I understand one needs to continue dropping to prod adrenals.I don't have any pmr pain or stiffness symptoms and ESR is steadily low.

I now wonder if it was a good idea or not. I am knocked out most of day and hot flushes are more frequent all day. Today I couldn't surface... dead head, dozed all morning, weak feelings and slightly shakey hands, hot flushes after moving,eating etc.

I know we are all different and there is not a straight answer but can anyone give me an idea from their own experiences. Should I leave a gap between drops? Can one tell if the adrenals are starting to give a top up? How can I differentiate between low B12 and adrenal insufficiency as symptoms seem to be similar?

l know I will have to go through this at some point but right now I feel worse than ever.

Also next week I intend to ask GP if my B12 can be tested again.

Many thanks for all your support.

[DorsetLady PMRGCAuk volunteer]

It took me the best part of 8 months to drop 3mg (from 6 to 3) and I only had an issue with fatigue…So maybe either elongate the taper -not sure whether you are using DSNS or mine- doesn’t really matter -by repeating each stage (or week) -or leave taper as is but only step down 0.25mg instead of 0.5mg a time.

Does that make sense?

..and for now maybe return yo 6.5mg until you seen GP

[Ebiker in reply to DorsetLady]

Thanks DL. As I have had some awful days I think going back to 6.5mg for now. I forgot to mention that most days the symptoms lessen about 4pm in afternoon and can be much less by 8pm or so. When I was having some 'nearly normal' days on 6.5mg I was back to energy and spark in evenings.Maybe I should go live in NZ!

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Agree -go back to 6.5mg -and stay there for a while…... also agree about NZ - my daughter lives there -need a Tardis so I could flit between there and here -son lives here in Dorset ….

[Ebiker in reply to DorsetLady]

As I feel better by evening does this mean that the daily pred is giving me cortisol or could it be that the adrenals might have produced some? Probably unknown, I suspect.

A Tardis would be brilliant. Remember 'beam me up Scottie'. I still use that phrase.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Well the daily Pred is still giving you cortisol and will continue to do so, albeit less and less as you reduce - and your own adrenals may/will be working a little bit, but not enough as yet……

[PMRpro Ambassador in reply to Ebiker]

I think it is a common experience - and part MAY be that PMR also tends to improve through the day. I don't think anyone really knows what happens ...

[piglette]

You have been hit by the deathly fatigue. If you drop, the fatigue gets worse if that is possible! I just stayed at the same dose until I was able to actually stop being a zombie.

[Ebiker in reply to piglette]

Thanks piglette. Do you remember how long it took at same dose till you felt you could drop again?

[piglette in reply to Ebiker]

I reckon about three months. Quite a long time anyway. I did start to feel better slowly of course.

[Ebiker in reply to piglette]

So does that mean you waited up to 3 months between each small drop? It would make sense.

[piglette in reply to Ebiker]

No I was able to reduce slightly faster after the long pause.

[Ebiker in reply to piglette]

Got it. 👍

[PMRpro Ambassador in reply to Ebiker]

Rod Hughes, a very good PMR rheumy, likes to keep patients at 5mg for up to 9 months for the body to catch up and find the rest of the reduction goes more easily

[Ebiker in reply to PMRpro]

Thanks PMR pro. All this information is so helpful.

[PMRpro Ambassador in reply to Ebiker]

That's the idea!

[Hidden]

Im 75 yo ex-Englishman living in Australia. My experience has been as wobbly as yours when reducing. I started with PMR in late August 2021. It was hit with 50mg of Pred and that stopped the excruciating pain it's tracks. Then the hard part started. I initially knocked chunks off the Pred, coming down really fast from 50mg to about 6 mg in three months. I had the odd bout of neck tightness and groin niggles during that quick taper. I've now reduced it to 2.5mg after successive and long periods at each reduction. My crushing fatigues started at lower levels, around 5 to 6 mg.

My findings at these lower levels of Pred are that within a day of 0.5 mg reduction I get a "fatigue flare" but no pain at all. Just bog-eyed, brain fogged, "go back to bed", debilitating fatigue. I am fit for nothing, driving is dangerous and I cant operate machinery. (I'm retired and do a lot of wood work n welding etc).

This fatigue thing can last about a week to ten days and it varies in intensity, with tight head and headaches that I treat as warning signs that I should stop what I'm doing and just sleep it off. Its best not to fight it too much.

After ten days or so my condition slowly improves markedly but by no means perfect. I can do stuff but I have a 1 hr to 2 hr nap just about every day and it's always in the afternoon. I live with the above for about 6 to 8 weeks and then, if I'm feeling confident, I drop another 0.5 mg and the fun starts all over again. I've learned to accept it as there is no way out of it. I feel I'm doing OK but I also feel I'll never ever be what I was before PMR. These days, I'm slow, more relaxed, more tolerant of my comparatively slow pace of life since PMR and Pred. I also feel PMR cheated me of my golden years and those of my wife. But that's life and I try not to let it get me down. I've accepted my "stay at home, quieter" life. My advice is keep reducing slowly and work your way through those crushing fatigues days. Go back a step if you really, really have to. You will improve, just keep swinging. Good luck with it.

[PMRpro Ambassador in reply to Hidden]

Don't give up yet! Read Skinnyjonny's posts

healthunlocked.com/user/Ski...

PMR - from a wheelchair to (nearly) the top of Annapurna IV ...

[Ebiker in reply to Hidden]

Thanks really interesting. Having other people's experiences is useful.As pmr pro says...don't give up yet.

[Tiki15]

Unable to give advise. If you have a B12 test it will give a false reading because you are having injections. This is written on my notes from lab. I feel so exhausted and fuzzy since dropping to 7. It is a different feeling from B12. I inject once a week so know it isn’t that. A good group to join is the Pernicious Anaemia B12 deficiency one. I hope you get some help x

[Ebiker in reply to Tiki15]

Thanks Tiki. I am not anaemic apparently and as I had the last B12 in the series 4 weeks ago I might be able to have a test. My surgery apparently used to do one after 5 weeks but it could be they found it not helpful as they no longer do one as a matter of routine.

[AdoptMeow]

Since the body doesn't store B vitamins, testing would likely show that you are low again and need to continue injections for continued benefits. Of the eight essential Bs, B12 is the most difficult to absorb from food and supplement tablets. There are B12 methylcobalamin lozenges which have better absorption through the mucosa.Additional reasons that we are low in B12 are aging, damage to the GI tract and microbiome from medications and chemicals, and other digestive issues.

In the US once someone shows improvement with injections, they just continue. I've not heard of the approach that "a course" of a low number of injections would be considered to solve the problem.

If you could depend on a supplement to get what the body requires daily, that would be great. But since we are on long-term prednisone, the absorption is probably compromised.

[Ebiker in reply to AdoptMeow]

Thanks for useful information. As I have had gerd for sometime, worsened we now know, with apixaban as I had a pulmonary embolism, no wonder B12 is low. Now on warfarin as no side effects and endoscopy showed a healing duodenal ulcer. Hopefullu my body will absorb more B12 from food and if necessary I can have a regular injection.

[PMRpro Ambassador in reply to Ebiker]

Do you take any B supplements? Sublingual B12 supplements are absorbed particularly well - might be worth trying.

[Ebiker in reply to PMRpro]

Thanks Pro. I believe I can purchase these in pharmacy. Will give it a go.

[PMRpro Ambassador in reply to Ebiker]

Even claimed to be better than injections!!

[Ebiker in reply to PMRpro]

In fact I am seeing a nurse practitioner in the surgery on Monday so will discuss with her.