Totally wiped!

[Suin555]

Hi again, I wrote a few weeks ago that I have been on prednisolone since May 2017 but after consulting with 2 different rheumatologists they are of the opinion I don't have PMR. Therefore at present I am coming down off the preds. However I am now on 9mg but I am completely and utterly flattened. I can't keep my eyes open at all and can barely get out of bed. I have no pains at all just this horrendous fatigue. I was wondering if this is normal as I have never felt so exhausted in my entire life! I am taking supplements to try and help but at the minute nothing is helping. I can barely keep my eyes open while writing this. HELP😱😰😢😴😴😴😴

[HeronNS]

You may have reached the level at which your body is demanding a bit more pred because your adrenal glands haven't started working yet. Perhaps it's happened at a relatively high dose because of your rate of taper? It would be wise probably to not taper any more until your energy levels pick up. Be kind to yourself and get as much rest as you can, and relaxing physical activity, such as a walk in a park, or whatever appeals to you. If you have no other symptoms it would be good if you can manage to resist the temptation to take a bit more pred, because the adrenals will only kick in if the cortisol is not being replaced by pred. If the fatigue doesn't gradually improve over the next few weeks, or if you start to develop further symptoms of adrenal insufficiency (I don't know them but they must be on the internet), please consult with your doctor.

[Suin555 in reply to HeronNS]

Thank you so much for your reply. I actually felt so low yesterday that I went to see my GP. He just said to keep reducing and by 1mg every 2 weeks!! He doesn't seem to understand what the preds do to me! I do think however I have been reducing too quickly as well and I haven't coped at all. So I will ignore his advice and stay on 9mg for 4 weeks this time! 🙏🙏

[PMRpro Ambassador in reply to Suin555]

I hope that one day he has a similar problem - and finds out what real life with reducing pred can be like...

[HeronNS in reply to Suin555]

Oh definitely. One mg every two weeks at the low level where you are now is much too fast. Have you looked at the dead slow nearly stop method? The short version of this gets you down by a mg in a month but because it's not an overnight drop from one dose to the next, but is phased in, it can be much easier to manage.

healthunlocked.com/pmrgcauk...

[SheffieldJane]

Hello Suin555. Like many others on here I know exactly what you are feeling. You have been here before haven’t you? Then you had a flare. On what basis do your doctors think they wrongly diagnosed you? I really hope it wasn’t your bloods.

I guess your fatigue is caused by Adrenal Insufficiency. Your Adrenal function has been held down for months and it needs to reactivate as you reduce Pred. I am glad you have no pain.

I am now on 6 mgs after 30 months of diagnosed PMR and finally my fatigue feels more normal. I am also experiencing little energy bursts. I am really hoping that this is my Adrenal function kicking into life at last. I hope this gives you hope.

Are your thyroid levels normal?

My vit D seems to give me a lift oddly.

I hope this gets sorted out for you quickly. It is awful not knowing what you’ve got.

[Suin555 in reply to SheffieldJane]

Thank you for your prompt reply. I do think I have been trying to reduce the preds too quickly so I will stay at 9mg for a month and see what happens. I just feel so useless and fatigued that it's getting to me at the moment. 😰😢😴😴

[PMRpro Ambassador]

I'd suspect that you are a person who only absorbs a relatively low amount of the pred, it varies from 50-90%. If you are a "50% person" then you are now getting the equivalent of some 5mg which is below the amount of cortisol your body needs daily to function. It isn't normal - but it is common. I'd also assume you are reducing pretty quickly? I wouldn't reduce any further until you feel a bit better - let your body catch up.

[Suin555 in reply to PMRpro]

Thank you so much for your reply and I do think I have been reducing too quickly. I saw my GP yesterday and he was no help whatsoever as he just told me to keep reducing by 1mg every 2 weeks! 😱The total fatigue is so depressing as I am lying around now for almost a week. I will stick on 9mg for a month & hopefully I will improve. 🙏

[Sorop in reply to PMRpro]

I have been told by my rheumy that I could be one of those patients who do not absorb steroids as well as others. My doctor however said he had not heard of steroid resistance so very interested in your information thank you. I initially came down too fast and had to go back up again and am struggling to get down but using a DSNS method now but it also maybe I am only absorbing half the dose.

[PMRpro Ambassador in reply to Sorop]

It isn't resistance as such - that means the drug doesn't work. It is something called bio-availability, something that applies to all drugs but in some it is a fairly fixed amount that is absorbed but in others it varies from person to person. Some patients on pred absorb 90% of the dose they take, others only 50% and everything inbetween. Warfarin is another example. It makes no difference in that the dose required is found by starting with either a too low or too high dose and then adjusting up or down to find the dose that achieves the required result. If only doctors understood the concept - pred bioavailability is quoted as 70% and they take that as absolute. Which means they get unnecessarily upset about what dose a patient is on.

[DorsetLady PMRGCAuk volunteer]

Re HeronNS’ comment about adrenal insufficiency have a look at this -

nhs.uk/conditions/addisons-...

- but like others I think it’s more a case of reducing really slowly to enable them to start working again.

[Suin555 in reply to DorsetLady]

Thanks for that. I really do feel that I have reduced too quickly but the fatigue is so severe I have never experienced anything like it before. I have now spent over a week lying down either in bed or on the settee. It's cracking me up to be honest. 😢😰😭

[PMRpro Ambassador in reply to Suin555]

Did you reduce a whole 1mg and overnight from every day 10mg to every day 9mg?

If so, one of the slower approaches might help - DL has one and this is a link to mine:

healthunlocked.com/pmrgcauk...

By challenging your body to the new dose just one day at a time it isn't such a shock to the system. It also helps to do just 1/2mg at a time once you are down to 10mg. I find the first 3 or 4 times I take the new lower dose I feel "strange", then it's fine - and at the end I feel better on low dose days than higher dose days.

[GOOD_GRIEF]

So if you don;t have PMR, what do you have?

And what are they doing about treating it beside rushing you off steroids?

[Suin555 in reply to GOOD_GRIEF]

Hi there! They haven't given me an explanation for my original pains but have said they could be muscular which is so vague and no help at all. They have also said I need to get off steroids as they could be masking another condition! All very frustrating. They seem to think that getting off steroids should be easy enough! I'd love them to try! 😢😭😴

[GOOD_GRIEF in reply to Suin555]

Steroids decrease inflammation. If most of your body hurts, they're not going to magically find the source of the inflammation by taking you off steroids.

They need another theory.

[Singr in reply to GOOD_GRIEF]

Exactly

[Mike1964]

Hi Suin555. Just wanted to send you sympathy and a virtual hug, the extreme fatigue is truly awful. Really hoping things improve for you soon.

[powerwalk]

You h ave my total sympathy re the fatigue!! I have found it to be totally overwhelming - and thats from someone who has had ME/Chronic fatigue for 20 years!! It goes to whole new level of fatigue. Trying to "humour" the pred dose - its just never ending! I hope you feel better soon and rise from this tired fog. I hope we all do!!

[Suin555]

Thank you powerwalk, I have been so fatigued now & hardly out of bed for over a week! I decided to go back up to 10mg (from 9) at the weekend. So I am hoping that will help soon. Could anyone advise me on how long I should stay on the 10? My gp said 2 weeks but I don't have any faith in him any more at all! Any suggestions welcome! 👍😢

[PMRpro Ambassador in reply to Suin555]

At least until you feel as well as you did before your failed reduction attempt. And then go slow on 1/2mg...

[Singr]

Sorry to hear this I am in a very similar circumstance. The last rhematilogist now says possible PMR, I mean make up your minds I think. They suspect fibromyalgia. My fatigue and mood swings seem to be way beyond what I’m hearing on here. The medical profession are indicating the same in terms of PMR. I’ve been looking at the symptoms of ME which seem far more like what I’m experiencing right now. I’ve managed to pull forward an appointment with my new rheumatologist. I want to make sure we discuss the possibility of ME. I’m also going to write her a letter ahead of time so that I can set out all of my current medical issues as I always feel rushed and that they are too much thinking on their feet rather than reading between the lines. I’ve had to go up from 8 to 10 as I was a meltdown mess 2 weeks ago. The nurse told me I should not have done so and to stay on same level until my rheumy appt. Well I wonder what I was expected to do with no rheumatologist and a GP who admitted he did not know what to tell me. Also, was I supposed to take up camp in my bed. Cancel my life and arrangements and suffer like that. Going up by 2mg it’s like night and day. I feel almost normal. If you can get someone to help you get properly assessed and press for answers. My sister has just told me about advice on arthritis website to help people coming off steroids and relapsing . I’m going to check this out. I know it seems dark and hopeless now but move through it as best you can. To the next bit of blue sky. Shake that tree. Get the help you need. Big hug.

[Suin555]

Hi Singr and thank you for your kind words. I am waiting for another appointment with my rheumatologist soon so I'm keen to hear what he says. I too suspect I may have fibromyalgia though to be honest I have very little pain just the fatigue. I am now on 10mg since last Saturday having gone up from 7mg so I haven't seen a great deal of improvement yet. Still extremely fatigued but I am hoping the larger dosage will kick in soon. It had better as I'm just lying around like a zombie! 😱We have a trip to Italy booked leaving on September 30th so I just hope I have the energy to go!😭😢