withdrawing from pred

Hi

After the last eight years on high doses of pred and various other asthma related meds InDecember 2006 I was told I do not have asthma. Yeah! However the effects of long term steriod use has remained with me causing osteroporsis and catarachs on both eyes for which I have now has surgery.

I am not able to come of the pred as my poor little (well littleish) body does not make it's own. I am finding it very difficult to deal with the effects of not making my own steriods and the pred I am still on is very low. I am awaiting an appointment to see the endocrinology dept but you no what it is like. I take high doses of pain killers for the aches and joint pains any advise as to anything else that may work.

Thanks in advance for your help and take care everyone.x

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Hi ljh,

Congratulations on being told that you don't have asthma. That must be a very strange feeling after so many years of high dose meds and going through the mill with it. I know from talking to patients in similar situations that feelings can often be very mixed when things like that happen - I am sure everyone expects you to be unreservedly happy but I know it is sometimes not that simple, especially when you have significant side effects from the meds. I am sure that it takes time to adapt to the new situation - I hope it is not too unsettling for you.

I'm sorry to hear that you've got osteoporosis - I presume that is what is causing your aches and pains? Are you under a rheumatologist, and have they considered the possibility that you have another inflammatory joint disease such as rheumatoid arthritis that may have been masked by the steroids? I ask because although painkillers will work on all types of joint pain, for things like rheumatoid there are other specific anti-inflammatory drugs that are used to get the inflammation under control. I presume you are already on a bisphosphonate (eg alendronic acid (Fosamax), risedronate (Actonel)) and a calcium supplement for the osteoporosis?

Pain-wise, there are lots of other things that can be done other than just taking increasing amounts of painkillers. If pain is a real problem, it may be worth asking for a referral to a Pain Management clinic, if you have one locally - these clinics are usually run by anaesthetists with a specialist interest in the management of chronic pain, and they can be really useful. They have a great deal of expertise in the management of pain and all the associated issues and are particularly good at using drugs that are not normally considered to be conventional painkillers, and at using non-drug methods of controlling pain.

Obviously conventional painkillers can be very useful. I don't know what combination you're taking or if you are on prescription painkillers or over the counter medications only, but it's definitely worth asking your GP to review your meds if you haven't already done so. Many people don't realise that it's perfectly possible and safe to take medications from several different classes of painkilling drugs together, and that this will improve the effect (obviously, speak to your doctor before you change your regimen or take drugs together, they may not be suitable for everyone, depending on your condition and other medication that you are on). Don't forget about preparations like creams with ibuprofen in them, which can be helpful for joint pains (if you are sensitive to ibuprofen, you may still react to the cream, even though very little of the drug reaches the bloodstream).

There are other drugs which are available on prescription only that aim to target specific types of pain, for example nerve pain. Without knowing more about your history, it's impossible to say whether any of these drugs would be suitable for you, but it might be one thing that a Pain specialist would consider. If you have problems which are localised to a specific joint they may also consider a joint injection or a nerve block, to block the signals from the nerve that supplies that joint.

It's also worth considering non-drug methods of controlling pain. This can be as simple as a hot bath or a hot pad or wheat bag on the affected area. You can buy sticky hot pads from the chemist which are activated, usually by taking them out of the packet, and then stay hot for a number of hours. A TENS machine can also be very helpful - some hospitals have them available to loan, or you can buy one from Boots and other places relatively cheaply. They do take a bit of experimentation to determine whether they work for you, and they don't work for everyone, so if you can borrow one to try before you spend money, it's wise to do so. Other non-drug options include things like physiotherapy and acupuncture - again, these may be available via your GP or Pain clinic, or they are available privately.

I have joint and muscle pain from steroid induced myopathy (muscle wasting and weakness) which pulls my joints out of balance, and also have nerve pain in my feet from post-ICU neuropathy (nerve damage). I've found my Pain clinic to be very useful in helping me to get these symptoms under control. I am on a lot of painkilling medication - three different painkillers, and two nerve-blocking drugs for the nerve pain - but I am sure I would be on more if it wasn't for the alternatives that I have tried. I have a TENS machine which is very useful for severe flares of the muscle pain and the neuropathy, and have tried acupuncture, and have regular physio. As with a lot of things, it does take patience to find the right combination of things - not everything works for everyone - but it is worth it to be free of some of these drugs and their side effects.

In terms of the problems with your body not making its own steroid - I presume you have had a Synacthen test to prove this? If not, I am sure the endocrinologist will want to do one. It's not uncommon for people to run into this problem after several years on steroids, and there are a number of other people on the boards who are in the same situation.

You may find that the endocrinologist wants to change you from prednisolone to hydrocortisone tablets, or add in hydrocortisone, depending on what dose of pred you are currently on and whether there are plans to further reduce it. This is because hydrocortisone is more similar to the body's own natural steroid, cortisol, than pred is, so if you are needing steroid as replacement therapy, hydrocortisone works better with your body. Many people find that the symptoms they are getting - typically headaches, nausea, dizziness, tiredness and so on - get very much better once they are switched to hydrocortisone. If you are taking it at the sort of doses that are designed to act as a replacement for your body's own steroids, rather than as a treatment for asthma, you shouldn't find that it causes side effects like worsening your osteoporosis.

One thing you do need to be aware of - I am sure that your doctors will already have explained this to you, but I'm mentioning it again, because it's important. If your body is not producing its own steroids, then this means that you will be unable to mount a stress response to illness or other stressful events, as this involves the production of cortisol. This means that if you cannot take your steroids for some reason, for example if you are vomiting, or if you develop another illness that is putting your body under stress, or sometimes if you are just going through a stressful event, your body will be unable to respond appropriately and you may become steroid deficient. This is known as an Addisonian crisis and it is potentially life-threatening. It is easily treated if it is known about - just by giving you IV hydrocortisone - but it is occasionally missed because the symptoms and signs can be quite vague. Generally to begin with it causes you to feel generally unwell, with dizziness, nausea, vomiting, and headache, and have low blood pressure which drops on standing up, and sometimes low blood sugar. In severe cases it can cause complete circulatory collapse.

The golden rule is that if you are vomiting and can't keep your steroids down, or if you are feeling very unwell generally, you need to seek medical help sooner rather than later, and tell the medical staff that you are at risk for Addisonian crisis. If you don't have one already, it's also worth getting a Medic Alert bracelet saying the same thing.

I don't want to scare you - as I say, it is very easily treated if it does happen, and many people with adrenal insufficiency never run into these sorts of problems. It is something that you don't want to miss, though. I am sure the endocrinologist will give you some guidelines about how to prevent and treat crises - they will probably suggest that you need to increase your steroids if you do develop another illness such as an infection, to prevent you from running into problems.

Hope this helps, and that you hear from the endocrinologist soon. I am sure once they have got you on an appropriate regimen of steroids you will feel much better. I know from speaking to other people who have the same problem with their own steroid production that it can make you feel really very unwell (and I know a little what it is like from past experience of being unwell and unable to keep my steroids down, or forgetting a dose (d'oh! I know, I know, I should know better). Not having enough steroid in your body can make you feel really rough.

Take care

Em H

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I'm in very similar circumstances to you in that my lung problems have stabalised but I still feel ill due to other problems caused by pred!

I'm due to see endocrinology next week to be switched to hydrocortisone as my adrenals are utterly asleep!

The really annoying thing is feeling so ill when your initial problem is fixed and the anger that you may not have needed all the steroids in the first place! I now have osteoporosis and non healing leg fractures as well as problems with my pancreas, stomach muscles and joints. I am under the care of a rheumatologist who is brilliant and hot on the osteoporosis side of things. With regard to the adrenals the hardest bit is waking up feeling so ill its like having permanent morning sickness and having no energy until the steroids kick in and then suddenlt running out of steam with no warning but i'm told once my hydrocortisone levels are correct this will stop.

There is lots more helpful advice on addisons.org.uk They class steroid induced problems as secondary adrenal insufficiency but a lot of the advice applies.

Good luck with your appointment.

Marmite