Now I know what fatigue is !: Have read so much... - PMRGCAuk

PMRGCAuk

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Now I know what fatigue is !

Wenben
Wenben

Have read so much about fatigue on here and I must have been lucky up until now because I didn't know what it was all about but boy it's hit me now. Started tapering from 5mg about 3 to 4 weeks ago and nearly at 4.5mg and feeling overwhelming tiredness. No energy or motivation to do anything.

Does anyone else find that their digestion is also affected at this stage. Discomfort and constant wind coming up.

Long awaited appointment with spinal surgeon this week who told me the only option for the compression problem I have is surgery.

Should I be considering surgery feeling like this? He did say I was more at risk of infection because of the steroids. Didn't make a big thing about it just mentioned it in the list of 'risks'. Feel pretty rubbish at the moment.....thanks for reading

36 Replies

I am at 4 mgs now and can certainly sympathize with the overwhelming tiredness. I am waiting for surgery on my Achilles' tendon and my surgeon doesn't want to operate until I am off prednisone. I am going to try to convince him to do it when I get down to 3 or 2 because I want to get back to work and don't want to tack another 6 or however many weeks on to my leave. Lots have people on this forum have had surgery while taking prednisone. I am sure they will be along later to advise. Good luck with your decision!

piglette
piglette in reply to Mikb

I had a hip op recently and my surgeon wanted me off steroids due to slow healing and possible infection. In the end I negotiated 5mg with him!

Mikb
Mikb in reply to piglette

Wow. You are going through a lot! You made it through the hip surgery okay? And those are the same reasons my surgeon used for not wanting to do it.

piglette
piglette in reply to Mikb

I think most doctors are worried about the side effects of steroids. At 5mg it is quite a small dose, but I suppose I sympathise as they want a perfect situation if possible.

PMRpro
PMRproAmbassador in reply to piglette

I often think a lot of medics should be sent out on an ambo or to front line/3rd world situations - then they might get it that perfection isn't always an option!

piglette
piglette in reply to PMRpro

In all fairness a lot of them actually do do a year in Africa or such place. I assume they do not get sued so often out there. They actually have courses on being sued now, I blame the US!

GOOD_GRIEF
GOOD_GRIEF in reply to piglette

Why not? Everything is our fault, right?

piglette
piglette in reply to GOOD_GRIEF

It depends how much you can afford to pay your lawyer!

SnazzyD
SnazzyD in reply to Mikb

Re infection risk, is a dose under 5mg really going to increase it that much? I’ve seen people have hip and knee ops on much higher. It’s not my call but I’d love to see their evidence. I’d say pushing someone down just to satisfy that concern risks adrenal crisis from the op. Anyway, nothing is black and white and it is a case of weighing it up, like what are the effects of you not having the op, instead of focusing on the usual suspects who are innocent at the moment.

piglette
piglette in reply to SnazzyD

Surgeons do not want to take risks and want to reduce them to a minimum. It is easy for us to say that say 5mg is quite a small dose, but at the end of the day steroids are known to slow down healing and so infection is more likely to happen. If this happens it means a revision hip which is extremely traumatic for the patient and a more difficult op for the surgeon who is always worried about being sued. So the less risks for them the better. A hip replacement is a major operation and is very open to infection as the hip is dislocated and then the top is sawn off so the replacement can be inserted. There is a lot of drilling and banging going on too! If a surgeon has had a problem in the past they are more likely to be fussy.

PMRpro
PMRproAmbassador in reply to piglette

Yes - but they don't demand the secretion of cortisol be stopped do they? 5mg is a physiological dose - less pred won't mean less corticosteroid. The lack of healing with pred is because it may suppress the inflammatory processes involved in healing - but so does cortisol to some extent.

piglette
piglette in reply to PMRpro

I think if you talked to your average orthopod they would not know that steroids suppressed the adrenal glands. All they see is a drug that could cause problems to their operation.

SnazzyD
SnazzyD in reply to piglette

I take your point but sometimes it has to be balanced with the effects of being immobile and in pain, which can also affect outcome. The system makes it difficult for surgeons to be pragmatic these days.

piglette
piglette in reply to SnazzyD

I must admit for elective surgery they are now putting off hip and knee ops, particularly if people smoke or are obese or just saying people can take pain killers or do pain management. I suppose it is difficult to imagine someone else’s pain. It also annoys me people on TV who say if people are overweight they should eat less and exercise more. I often wonder if they were taking drugs, of which there are many, that cause weight gain and also if they had pain with movement, whether they would think differently.

Wenben
Wenben in reply to Mikb

Thankyou for your reply. I am not working now so I suppose I am lucky in that respect. Best of luck with your surgeon

Oh yes indeed. I’m on 4/4.5mg and debateably feel worse than when I was on 30mg. Got the can’t be bothered feeling too. My intestines have also got confused and are easily upset. Body feels weak and unfit even though I am still doing the same activity as before.

Wenben
Wenben in reply to SnazzyD

Thanks for your reply SnazzyD. Only fellow sufferers understand. Some days are better than others - can't wait until the good days outnumber the bad !

I have had three ops this year and was on prednisolone dosages between nine and seven mg. no surgeon had a problem...And no infection.

Wenben
Wenben in reply to Mary63

Thankyou - that's good to hear

Hidden
Hidden

Hi Wenben

The Fatigue is spectacularly draining isn’t it!......

I think all Surgeons are ‘concerned’ about us being on Pred when they operate so have to point out the risks & the convent form you sign these days is pretty comprehensive!

But if your appendix burst they’d have to operate not ask you to reduce & come back!

Mention to the Anaesthetist that you are on as they will know/decide if you need Hydrocortisone Cover in theatre.

I had Hydrocortisone 100mg in theatre & again Post Operatively during the night; they rang my Rheumatologist for advice & she increased my dose of Pred from 7.5mg to 10mg for two weeks, then back to 7.5mg

And, l healed up very well!......

Good Luck 🍀

Best Wishes

Mrs N 💅🏼

Wenben
Wenben in reply to Hidden

Thankyou for your very helpful reply MrsNails. Does that mean that perhaps you are actually better off being on a higher dose if you have to have surgery?

Hidden
Hidden in reply to Wenben

No not necessarily, if you were/are used to a certain dose to maintain your PMR then an ‘Operation’ is classed as a ‘Stress’ on your body ~ if you weren’t on Pred your Adrenal Glands would react & deal with that ‘Stress’ but we don’t have any reserves so we sometimes need extra to cover us in a situation like that.

Hope that helps, your Anaesthetist is your best person to chat to regarding this.

Mrs N x

Wenben
Wenben in reply to Hidden

Got it....thanks a lot x

PMRpro
PMRproAmbassador

You'd feel a darn sight worse and be at far more risk during surgery if he said you had to get off the pred to do it quickly unless you waited about a year. They operate on patients on pred all the time - it's an excuse when they say they can't and it is always worth shopping around for one who realises that PMR lasts an indefinite length of time. If they insist their hip patient must be off pred they may be in a wheelchair for a long time which makes them far less fit for post-op recovery. One lady was told when she was still on about 10mg she couldn't have it done until off pred - she looked around and found a surgeon who did it within just a few months. Afterwards she actually had less trouble getting off pred.

And yes - an upset stomach can be due to poor adrenal function.

piglette
piglette in reply to PMRpro

I don’t think it is an excuse in all fairness to the medics. They will go for line of least resistance and if someone thinks they can reduce pred to x or even zero fine. They want to minimise problems and not be sued. Some will operate at higher doses than others, probably the ones who will not, think they have had a problem with pred in the past or know of someone who has. I personally would be worried on doing an operation when someone is taking a medication that might limit their healing time and thus could cause infection. I think I would ask for zero too!!

PMRpro
PMRproAmbassador in reply to piglette

Yes, I do appreciate that. But it depends why someone is on pred - and you know as well as I do that in PMR there is NOT a timeline you can predict. And THEY need to be aware of that when saying they won't do something until the patient is off pred.

piglette
piglette in reply to PMRpro

I think I told you an orthopod friend of mine does not know the difference between fibro and PMR. I am not sure most of them would know much about the reason for taking steroids! In fact a gynaecologist friend of mine seemed to know nothing about steroids when I mentioned I had started taking them. I think as patients we think that doctors know all. In fact most of them seem to remember very little. They can always look it up but I think a lot of them think why bother! Say to the patient you need to get off pred, patient either says yes or it is not possible and they negotiate. It is like GPs, people go to them with something, if they are not sure they may give them a tablet or whatever. If they come back they may look at the symptoms in more detail, otherwise thank goodness they have not come back.

Thanks. Yes I really don't want to be rushing it at this stage and I understand it can take sometimes another 12 months to stabilise after Pred is finished.

I wasn't overly impressed with this consultant and have been looking around online this week.

I have been told there is a shortage of spinal surgeons in Gloucestershire. Looked up one name that has been recommended to me by two different people and find that he left the employ of the NHS in 2015 and now works privately. Not sure what to think about that - good or not good ?

Thanks for your reply.

I'm not a doctor, nor a medical expert of any kind, but I would ask the surgeon why, if pred is so dangerous to a good surgical outcome, is it true that pred is prominently used in organ transplant surgery.

Here is a typical pred schedule for a kidney transplant patient:

500mg of intravenous methylprednisolone on the day of transplant, followed by the following doses of oral prednisone: 160mg on day 1, 120mg on day 2, 80mg on day 3, 40mg on day 4, 20 mg days 5-9, 15 mg day 10-19, 10 mg day 20-24, 7.5 mg day 25-29, and 5mg from day 30-on indefinitely.

Now I know the purpose of this treatment is to reduce the likelihood of organ rejection, but it seems it's not all that dangerous for pred therapy to be used in conjunction with other types of surgery.

But, I am not a doctor nor a medical expert of any kind. I'd just like to know why low doses alongside hip surgery can be so frightening to them when it isn't for transplant surgeons.

piglette
piglette in reply to GOOD_GRIEF

Steroids are given to kidney transplant patients to prevent rejection, although they are doing their very best to find a non steroidal method. Also they are usually only given for a very short period of time.

Hip surgery is prone to infection as the bone is open to the air. It seems if you have an accident for example and the bone is open to the air the chances of infection and even death are extremely high compared with soft tissue injuries. A & E are always worried when a broken bone breaks the skin, which is actually what happens in a hip op.

GOOD_GRIEF
GOOD_GRIEF in reply to piglette

I understand. As I said, I'm no expert.

But given the dosages and length of time in the example I provided, including "5 mg indefinitely", I think there is some reason to question a requirement for 0mg pred, especially since 5-7.5-10mg is at the level that would be naturally produced by the adrenal glands if they were fully functioning .

piglette
piglette in reply to GOOD_GRIEF

What I was trying to say is that infection of the bone can be extremely nasty, while with a kidney in general it is either rejected or not, so large amounts of steroids to stop the rejection. My mother had a hip infection after a hip op, she had to have her hip removed. She then was put on a broad spectrum antibiotics for many weeks. During this time she had no hip. Nine months later she had a revision hip, which is a much more difficult operation and will never be as good as the initial hip. This is why orthopaedic surgeons are so worried. A lot of dentists do suggest you have antibiotics if having some treatment and you have had a hip op. I can understand an orthopaedic surgeon’s worry about pred. In fact most will do an op up to around 7mg, they probably don’t understand the effect of tapering or of adrenal problems, they just see if the patient will disagree. Hip surgery is very invasive and that is the reason surgeons may turn down overweight people and people who smoke, both of which are more likely for the patient to have infection, plus of course other things such as DVT.

The fatigue! Yes. I’m at 4mg and have held there for many months. There are ok days and awful days. In fact, I just woke up in my office chair where I was sitting trying to edit a few photo files. Boom. Fast asleep in seconds. Yes also to my stomach and intestines being very persnickety. I’m often a wind machine now :)

Gosh my intestines play up regularly no matter my diet .....didn’t think to put it down to our condition and/or adrenals....my cataract ops are taking for ever to settle and the fatigue has been worse ever... my body is obviously objecting to this op even tho it’s supposed to be an easy one! But we are rather delicate flowers it seems ....

Hello Wenben,

I was reading through the leaflet which accompanies every box of Pred

(which I confess I hadn't read for a long time) and came upon Cushing's Disease. I, too, have extreme tiredness every day in the afternoon. I have to lie down or I would fall down. I then sleep for around two hours, and wake feeling refreshed and able to cope with the rest of the day. Age related? That's one explanation. But read up on Cushings's and you'll see lots of very familiar symptoms.

Good luck

Greenheath

Wenben
Wenben in reply to greenheath

Thankyou...…...will do

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