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Does tapering off pred down from 7.5mg to 5m... - Vasculitis UK
Does tapering off pred down from 7.5mg to 5mg cause tiredness and mood change? I have read all the side effects information but I would like
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luggsey
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Suzym2uModeratorVasculitis UK
As I remember It did affect John in this way, I think it is your body adjusting to the lower dose as your own body has to start making it's own cortisol again. if that makes sense.
Susan
Yes, the body naturally makes somewhere in the region of 7-8mg of corticosteroid. Whilst you take a higher dose than that the feedback system suppresses the activity of the adrenal glands - a bit like your central heating thermostat tells the boiler it doesn't need more heat as long as the room temperature is above what you set. Once you get down below that sort of dose the body has to start making its own cortisol - you need it for all sorts of things. Some people are more sensitive than others - the adrenals haven't "stopped" working necessarily, it's a bit more complex than that, but long term pred CAN lead to them being at least sluggish, at most they don't "wake up" when the signals are sent to them to get going again. It isn't too much of a problem until you meet a bit of stress but it can make you tired - and if you DO meet stress you can be quite ill. That's why you carry a blue steroid card to say you have been taking steroids for the benefit of the medical professionals who have to care for you in an emergency. It has always been said, and there has been research to show it is true, that we need at least a year for them to get back to working properly even after stopping pred altogether.
I don't know how long you have been taking pred or at what dose, but in polymyalgia rheumatica and GCA the top experts have said for some time that any reduction should not be more than 10% of your current dose to try to avoid this problem after being on pred for more than a few weeks (it doesn't seem to be a problem then for most people). You'll realise that 10mg that means a reduction of 1mg, at 5mg it is only 1/2mg - so 2.5mg at once at a dose of 7.5mg is 33% - a big drop percentage-wise.
After a couple of years of never being able to get below 8-9mg without being ill again I started reducing only 1mg at a time from 15mg and even then not overnight, I alternated old/new for a week before going to all new dose. From 10mg I have been taking nearly 3 weeks to get from every day old dose to alternate days old/new - and the same again increasing the number of days of low dose to get to every day low dose. It has worked perfectly - no "withdrawal" pain or tiredness at all and I have got to 5mg.
I did have a small hiccup at about 7 down to 6mg - I didn't think anything about it at the time but I had an awful morning when money should have been transferred for a house purchase and RBS were being totally useless about getting me someone from the branch to speak to. There was a window of about an hour and a half before it would have gone pear-shaped for the weekend (closing hours and time difference) and I was almost in tears trying to sort it out and felt horrendous, sick and had a mega headache. Something similar happened a week or two later when I needed insurance and it was the same performance. Then I realised - low dose pred and stress! Hadn't happened before or since.
If you continue to feel poorly and it gets worse ask the GP or try a slightly higher dose - if your adrenals are not working 100% you can suffer the symptoms of adrenal insufficiency and you can get quite ill if it goes on too long. You were obviously fine at 7.5 - but maybe an intermediate dose for a few weeks would be better. Many doctors in PMR like to see their patients stick at 5mg for a few months and it seems to make the rest of the reduction easier but loads of people get stuck at 5mg and all sorts of ways of getting round it have been tried.
Note though, it doesn't apply for short isolated courses of pred, for example 2 weeks each at 15/10/5 mg and then stop unless it happens frequently.
I read your response with interest & noted reference to a blue steroid card alerting medical services to be have been taking them
Why can one obtain this card?
You should be able to get one from the pharmacy - though something niggling at the back of my mind says they are not as easily available as they should be. I think the PMR/GCA northeast support group has developed a card they issue to members because of that.
It is also possible to buy MedicAlert bracelets with such info on them - google will probably come up with a source.
Should b available from chemist. You should have been given one when u started taking steroids. It must b with u at all times
Working with my consultant I have been reducing Prednisolone from 10mg to 5mg reducing at a rate of 1mg per month. there has been no after effects in doing so, so far. We are now reducing the Preds to 4mg but this is being done over two months thus slowing the process. Again so far no after effects experienced. I have also stopped taking Omneprazole ( used to protect the stomach while on high dosage of Preds.) During the first week of stopping I did experience higher acidity in the stomach and I did expect this to occur but that has now stabilised to normal. Come March we will be looking at Gabapentin, Alendronic and Amlodipine as these are next in line for reduction or stopping.
I expect that with all medications there will be side effects associated with them and also with the reducing and stopping thereof as the body adjusts. In this respect it must be paramount to work closely with your doctor/consultants and pharmacist as to what to expect and for how long bearing in mind that individually we are all different in our needs and responses.
Thanks all of you for your helpful replies. It's my Mum tapering off pred. She has been very tearful and really tired for a couple of days so I linked it to pred withdrawal. It makes her feel a bit better to hear others have had similar experiences so thanks again.
I did not notice any difference when I tapered off prednisolone to 5mg per day. The steroid information card was issued by the renal clinic. It is important to carry with you at all times in case of accident.
I put on huge amounts of weight initially when on 40mg a day, I know it is controversial but as a diabetic I have been on a low-carb diet to reduce blood sugar and in the process have shed kilos without ever being hungry. However, one should never start a diet without consulting your hospital team or GP. My GP offered to monitor me while I tried this diet. Guess I am very lucky! Hope you get over your symptoms soon.
Exactly the same experience as I have had Cat! There is low carb and then there is low carb! I eat large amounts of non-root veggies and salads but almost no bread, pasta or potatoes - just as treats and certainly not every day. I'm not diabetic, but the American Diabetic Association has recently admitted it is an excellent way of blood sugar control and of losing weight - but say only for a year or so, mainly because they seem to think it is difficult to stick to. I really can't see why! I never did understand why diabetics are told to eat a minimum amount of carb - if I ate what is usually recommended I'd be the size of a house! Plus - why eat carbs when that means you need more medication to control your blood sugar?
The body should already be making its own cortisol and it's essential to have your level checked before you start tapering. This is done via a simple blood test taken before you take your daily dose. PMRpro's comments about percentage drops are very valid and in my case I took over 6 months to get from 5mg to zero. For me, rather than reduce the daily dose when it got down below 2.5mg, I changed to an every other day regime then every three days etc. I was fortunate not to have mood changes but I'm aware it can happen in some patients. Healthy wishes.
Mum's temperature is up very slightly as well, did anybody else have this?
I have been on steroids for over 30 years because of eosinophilia - during that time I tried everything (believe me, everything) I could to come off them but found I had to stay at 5mg a day. I suspect the adrenal gland may have atrophied after all this time. When reducing too fast, I experienced flu like symptoms, depression. nausea and tiredness which all went away in 24 hours on increasing the dose. My skin is very thin and cuts easily, giving rise to many a murder scene in various places! I don't have many other consequences of this yet (I am 68) and have always taken the view that I am still here which is better than not being here!
In the last three months, I have been diagnosed with Churg-Strauss which I understand is a rare progression of the above, wonderful!. I lost the use of my feet and left hand but as it was diagnosed so quickly, they are now coming back to life, and don't I know about it! I live in France and the French Neuro doc was amazed I'd never heard of this. I have been on 60 mg of steroids for 2 months and am now very slowly reducing - I was told to go from 60 to 40 straight away which was madness. I was told to go on a salt and sugar free diet which is no big deal, and I've not put any weight on, having lost two stone whilst ill - a silver lining indeed, have to buy a new wardrobe.
I am so glad to have found this forum, so informative and helpful, and I just posted the above in case it helps anyone with the same problems, and actually, I'm not afraid of steroids, they are lifesaving and liveable with. It's amazing to not feel so alone, as I have for the last 30 years, and as I said, I'm still here having a good life in spite of everything - just need to improve the walking to get round those shops! Sandra
I have been on steroids 50 years and can't get below 5mgs. Am on higher dose at moment because of A.S flare up. Tapering down now. I have Takayasus
Mum's. Symptoms seem to have calmed down now, took two weeks but her mood, appetite and temperature are all normal again thank goodness. What's the normal taper from 5mg going to be?
