Are Hormones and Steroids a Secret Weapon for Chronic Adhesive Arachnoiditis patients?

Dr. Forest Tennant’s latest article in “Practical Pain Management” is titled: 3 Advances in Hormonal Pain Care. He has strongly highlighted the ability of hormones to improve neuroinflammation, reduce the need for analgesia, ie opioids. Also has brough up that certain hormone products can promote the well-being of “meningitis layer”.

Unfortunately the article lacks references that could be referred to as supporting claims. Then if the matter is of interest, you need to go to the databases to dig sources more.

Efficiency and benefits of hormone products are evident in patients with arachnoiditis based in the grass-roots experience, but there’s a rarely spoken other site of the story. Hormones have their own drawbacks, such as those who have cancer or have a certain cancer risk should not use them.

Steroids are a miracle drug for chronic arachnoiditis patients.  A steroid pack gives to you super powers and can treat pain better than any pain-killer. But how are side-effects? A steroid pack can give to us great days, a tiny sense of it what life could be when you are more healthy. Then comes the day you’re off and you end up with the growing pressure headache. Steroids interferes with already disturbed intracranial pressure causing so-called rebound high pressure. It will kick your pressure up! On the other hand, it can be avoided by selecting a particular steroid and tapering more slowly. You really may need more time to taper down.

A common known side effects of cortisone in the long run is osteoporosis and the long-term use can lead to Addison disease. However, personally I would raise the risk of DVT (deep vein thrombosis), which is rarely mentioned as a side effect. When the DVT is left unnoticed, the consequence is embolism, that can be fatal.

How you can get a hormone prescription? At first, you probably need to have a low hormone level. Women can turn to the gynecologist and men to the urologist for checking it.

With steroids you can turn to a neurologist. Before starting a steroid packet you need to know whether you have an infection in your body. Also the cause of adhesive arachnoiditis should be known. Causes like a fungus and autoimmune arachnoiditis will require their own treatments. Generally, if the original cause is not clearly known, this means you need to have a lumbar puncture and different blood tests where no other cause has been detected and arachnoiditis is a pure iatrogenic- or traumatic arachnoiditis without infections. If in the central nervous system hides a virus, steroid therapy can be a serious mistake. 

Acute arachnoiditis (an involuntary inflammatory reaction) requires high-dose steroid therapy. Otherwise, steroids are helpful for CAA-patients (Chronic Adhesive Arachnoiditis). However, benefits and risks are weighted on the individual level. Dexamethasone is my panacea. Whenever there has been a period with exacerbation of symptoms, increased pain and worsening paralysis, steroids have done its work. A single high dose steroid injection also nicely cut the pressure headache.

Part of the serious side-effects like DVT should take seriously. So while on steroids use high-compression aid socks! If the symptoms are similar like in a deep vein thrombosis, it’s not your chronic pain due to arachnoiditis. The situation is demanding immediate an ultrasound of legs. The symptoms caused by DVT should not be confused with any other pain in the lower limbs.

With all my love. Take care! 

P.S. Are references missing also from my blog posting? Yes they are. I give a challenge to you as readers to search and link as many references you can find about this subject into comments. 😉



G03.9 Adhesive Arachnoiditis in #RAREfest18 Film Festival

Adhesive Arachnoiditis (AA) is an incurable rare disease causing lifelong suffering and pain.
It is often misdiagnosed and is a poorly understood disease. Limited studies have been carried out historically and there is little active research at this time.

A great many patients are left facing a life of severe pain and disability, with little hope of help and support.

Delays in diagnosis, misdiagnosis and a lack of proper care cause avoidable distress and suffering, not only for patients but for all of the patient’s loved ones.

This situation has gone on for too long. We are calling for the medical field to work together to cover gaps in recognising rare diseases like AA and to both identify new and make available existing treatment options.

All patients and families affected by rare diseases need more support from the system; too often we are left to fight alone.

#RAREfest18 #arachnoiditis


Dr Forest Tennant , Diagnosing and treating arachnoiditis