Question

I’m having joint problems at the moment and my consultant wants to inject a steroid into the joint to calm things down. I’m concerned that this could make my ME/CFS worse because I thought that people with ME/CFS should not take steroids. What do you suggest I do?

Answer

Firstly, I would point out that the use of a steroid injection, or a course of steroid injections, can be a very effective form of treatment for some types of joint problems. And the amount of steroid used in an injection is normally much less than might be used for, say, treating an exacerbation of asthma.

Secondly, the use of steroids – by mouth or by injection – is not contra-indicated in ME/CFS. In fact, low doses of cortisone have been assessed as a possible form of treatment for ME/CFS in a number of small clinical trials in view of the fact that mild hypocortisolaemia (= lowered level of cortisol) is a consistently reported research finding in some people with ME/CFS.

Steroids do, of course, have a number of potential side-effects. These are unlikely with injections but a flare-up of joint pain within the first 24 hours after the injection does occasionally occur. This usually settles on its own within a couple of days. Taking simple painkillers like paracetamol will help. Injections can temporarily improve pain in other joints, particularly those close to the injection site.

The risk of side-effects is greatest with the stronger injection mixtures. The mildest mixture is hydrocortisone. Methylprednisolone and triamcinolone are stronger and tend to be less soluble (dissolve less easily), so they stay in the joint for longer. Local steroid injections sometimes cause facial flushing or interfere with the menstrual cycle. Other steroid-related side-effects are rare unless you have frequent injections (more than a few times per year).

Oral steroids, especially when given at high doses or over a long period of time can produce more serious side-effects – including osteoporosis, diabetes, high blood pressure, or changes in mood. They can also cause weight gain, muscle weakness and lower the body’s resistance to infection – all of which are relevant if you have ME/CFS. So if you already have any of these conditions, this will have to be taken into account if long-term or high-dose oral steroid treatment is being considered.

Research into hypocortisolaemia, and a summary of clinical trials which have assessed the possible use of hydrocortisone in ME/CFS, can be found in the research and treatment section of the ME/CFS/PVFS Clinical & Research Guide 2022 Edition (The ‘Purple Book').

Basic information on the use of steroid drugs and ME/CFS

Steroids are drugs that have what is called an immunosuppressive action – so they are sometimes used to dampen down inflammatory responses in conditions like asthma, arthritis, Crohn's disease – where they can be a very effective form of treatment.

Research into immune system dysfunction in ME/CFS indicates that this may involve an inappropriate and persisting inflammatory response by the immune system, including the production of immune system chemicals called cytokines, following a triggering infection. There is also a problem with the hormonal axis that controls the release of cortisol from the adrenal glands, and this hormone may be lowered in ME/CFS = hypocortisolaemia. So there are two theoretical reasons why the use of steroids might actually useful be in treating ME/CFS.

However, no proper clinical trials have ever been carried out involving higher dose steroids like prednisone and prednisolone and anecdotal reports (including a small 2-month trial in Glasgow some years ago) suggest that steroids such as prednisolone are not of any overall benefit in ME/CFS and could actually be harmful. There have been some small clinical trials using lower doses of steroids (= hydrocortisone). However, the results here suggest that the potential longer term problems outweigh any possible short term benefits. These trials are summarised and referenced in the Treatment section of the ME/CFS/PVFS Clinical & Research Guide 2022 Edition (The ‘Purple Book'):

Steroids, especially at higher doses, can have a number of side effects – short term and longer term. Some of these are similar to symptoms found in ME/CFS. So people with ME/CFS who are using steroids for another medical condition may find that some of their ME/CFS symptoms are made worse.

Steroid side-effects can include:

• • muscle weakness,
  • increased risk of infections,
  • insomnia,
  • nausea,
  • headaches,
  • malaise,
  • vertigo.

Long-term use can cause muscle wasting, diabetes, and osteoporosis. Side-effects are minimised by using the lowest possible dose for the shortest possible period.

See also: Joint Pain, Addison’s Disease.

More information

The ME Association has detailed information available to download from the website shop:

• Blood Tests Explained
  There is no diagnostic blood test for ME/CFS – but testing your blood is essential to rule out other illnesses that can cause similar symptoms. We take an in-depth look at what blood tests should be taken to ensure your diagnosis is correct.
• Coping with Pain
  The majority of people with ME/CFS will experience pain that will likely impact their functional ability and quality of life. We discuss the various types of pain and how each can best be managed.