Has anyone tried the perispinal etranercept injections?

Hello Trish and thank you for reaching out on EnableMe. This is a good question and there will likely be a few responses from others who have been part of the trials running for the Perispinal Etanercept.

 Etanercept is not a drug used in Australia after stroke, hence why there are trials currently being run to look at whether this is something that the Therapeutic Goods Association (TGA) will approve for use after stroke.    

There have been a couple of trials looking at etanercept in Australia, The Griffith University etanercept trial clinical trial focused on improving mobility and pain relief in stroke sufferers. This trial indicated one-third of participants saw immediate and complete loss of pain and the majority experienced significant improvements in their movement. This study enrolled 26 participants and 22 completed the trial.  This trial is no longer available as has been completed but you can read more about the trial and the results here.

The Florey Institute is still actively recruiting participants in line with Government advice for the PESTO trial (Perispinal Etanercept to improve Stroke Outcomes). This is the last call for trial participants at the moment depending on where you and your husband are located.  They are seeking participants who have had a stroke (any type) between 1 and 15 years ago, are between the ages of 16 and 70 at the time of the stroke (and currently under 71) and still have a moderate to severe disability following the stroke.  You can read more about the trial here and register on this page. If you or your husband  have any questions about the trial or eligibility, you can reach out to The Florey Institute on email: pesto@florey.edu.au.

Make sure your husband talks with his GP about how he is feeling if he hasn’t already, as apart from Fatigue which I will discuss in more detail below, there can be other contributors to brain fogginess that may also need to be looked into further.  This might include medications or other medical conditions.

Has anyone discussed post stroke fatigue with your husband in regard to the fogginess he is experiencing?  Fatigueis very common after a stroke and can be described as a feeling of weariness, tiredness or lack of energy.Symptoms offatiguecan include headache, dizziness, blurred vision, increased pain, aching muscles and reduced coordination and balance. Other symptoms include ‘brain fog’, impaired memory and decision-making, moodiness or irritability, anxiety and depression or low motivation. This may be one of the factors causing your husband to feel “foggy”.

An Occupational Therapist can assist with energy conservationmanagementtechniques that may be helpful to combatfatigue. Your husband can search for a local Occupational therapist by talking with his GP or through Occupational Therapy Australia (Ph. 1300 682 878) here.   

 Another way  of personally managing his fatigue is through Pacing, Planning, and Prioritising.  

• Pacing is spreading out the activities you do and using numerous shorter breaks instead of one long break after an activity.  
• Planning is understanding what activities you are doing and when, making sure not to group up too many similar activities together. Eg spread out appointments. This also means assessing which activities make you feel more, or less, fatigued for future planning 
• Prioritising mean understanding what you need to do and what can wait. If you have a limit to what you can do each day you can plan to do those things which are important and save unimportant things for other days.

I hope this has been of some help.  We would be more than happy to talk with you or your husband Trish, so do feel free to give us a call at StrokeLine on Ph 1800 787 653. You are also welcome to email us if that would be easier for you both. Our email address is strokeline@strokefoundation.org.au.  We are available Monday to Friday 9am to 5pm AEST and would be more than happy to talk with you both about what has been happening for your husband.

Warm regards

Siobhan (StrokeLine)

Hi Trish,

Here are some advice from the community about brain fog after a stroke.

Rukmani Sandrasegara

It might not ever lift entirely but it will lift - the brain needs challenge, rest and lots of time. Best wishes

Mariella Caterino

I agree with working our brains. I play games on the iPad. I used to colour in while in Rehab. Everyone is different in their recovery of course. It took me a good year to be able to absorb reading…. I could always read… but I just couldn’t absorb it or focus on the storyline. The “Fog” will lift…. The brain has been injured and needs to repair and recover. If only our Stroke Frustrations understood this. Best of luck to hubby in their recovery!

Mathew Bohner

Was definitely very bad few years after stoke but it has got better over time..it is still there but no where as intense. The brain does repair some what .in the early stages rest and no your limits.take time out quite time for your-self because everything is just so over welming early on.be kind to yourself .

Colin Cook

Like improving physical function, you also have to exercise your brain and get it working again. Crosswords, puzzles, anything that gets your brain working again.

Alison Mead

I read newspapers not on line physical newspapers, back to front. Crosswords and puzzles.

KMichelle Bay

The dreaded cognitive fatigue, the nemesis of many survivors of stroke. It lifts to a degree after an initial period of rest and recovery. Then is better in the morning when freshest. Things I find help with concentration and focus are sleep, exercise, healthy food, quiet time breaks throughout the day and avoiding sensory rich environments. Ongoing it is worse when stressed or when ill with a virus. When I need to push through brain fog, the sugar and caffeine in Coke helps. Though I'm sure this isn't what any health professional would recommend. Sometimes you've got to do what you've got to do. Be patient. Recovering from a brain injury takes time.

Trish,

I took part in the Perispinal Etanercept trial I covered my experiences in a couple of blogs, 

Blog 3 and  Blog 4

I still don't know if I received the etanercept  or placebo. I'll have to wait until the trial is complete before I will find out. It was an easy process to undergo the treatment.

Thank you fir your responses. There is so much comfort that comes from others who have survived and share their experiences. Always grateful .

My wife, a 75 year old hemorrhagic strokes survivor went to the INR in Boca Raton,Fl for 2 procedures in July 2023. They did not work for us. We tried a second shot a week after the first.   Neither was successful. I hope it works for others. It cost $8,400 for each treatment.