Thanks

[Guffy]

Thanks for everyone's concern re Shingles. The doc says hubby is healing nicely. His case is mild, no pain. He also prescribed me Shingrix, and that'll be in my arm in four days. We have such a great GP, nothing is too much trouble for him. But 300 AU$ for a shot! It's free for over 71s, but I'm still a spring chicken. Well, OK, maybe a spring goose! I'm going to write to the Department of Health. It really should be free to all the immunocompromised, or at least on the Pharmaceutical Benefits Scheme (in Australia a lot of common drugs are subsidised). I'm lucky, but what about all those people who can't afford to be immunised? Not right! Take care, everyone!

[AussieNeil Administrator]

Good to read that your hubby is healing nicely and that you've booked your first Shingrix shot. Good on you too for writing to the Department of Health about the needs of the immunocompromised with regards to shingles prevention and management.

Yes A$600 for the two Shingrix shots sounds a lot, but believe me, you burn through that cash extremely quickly if you get shingles and Post Herpetic Neuralgia, what with weekly GP visits to manage prescriptions for the opiates that you hope will help dull the excruciating pain*, while you hope and wait for the pregabalin (Lyrica) to kick in, then the even steeper pain specialist bills (bulk billing is becoming increasingly scarce in Australia). That's before considering the huge impact on your life of struggling to sleep, the quite unpleasant side effects from the pregabalin and other pain meds and so on. One of the challenges with pregabalin is that it takes a few weeks to become effective - which isn't a given by the way. The amount your kidneys can tolerate reduces as you age, which means that you can end up in a quandary of trading quality of life for kidney damage. When you try to reduce the amount of pregabalin you are taking to reduce the unpleasant side effects, you can get by for a day or so on a reduced dose, only for the post herpetic neuralgia to come back, after which you face a couple more days waiting for the pregabalin's pain management to kick back in.

Did I mention pregabalin can knock down your platelet and neutrophil counts?

Consider the Shingrix shots bargain insurance. I just hope that they work more often than not when we have CLL. I didn't get the chance to find out, because I didn't have any B cells post CLL treatment when Shingrix finally became available in Australia and then I got shingles just on a year ago now and I'm still on near a full dose of pregabalin though I was eventually able to get by without the opiate pain meds.

* One of the repercussions of drug companies strongly pushing opiates for profit, followed by the shockingly high overdose death rates from nearly always recreational drugs being laced with fentanyl, is the reactionary lock down on long term opiate use for chronic pain by the CDC, with other health agencies following suit. Gaining access to prescription opiates for longer than two weeks requires close GP management.

Neil

[Guffy in reply to AussieNeil]

Thanks Neil, and thanks for your advice in bold case to get the vaccine! Sounds like I've dodged a bullet. Even if it's not 100% effective I guess I will avoid the worse. So sorry for your pain and trouble. Take care!

[SycamoreN in reply to AussieNeil]

Neil, we’re so lucky to have the benefit of your knowledge and that of the admin team here. I’ve posted previously about my post herpetic neuralgia following a gruesome bout of shingles on my face some15 months ago. I remember all the helpful replies I got from you and others you’ve suffered from shingles and PHN which gave me a lot of comfort. I’m still battling with PHN and have been on pregabalin for almost a year (after Gabapentin failed to relieve my pain). A recent blood test has revealed that my kidney function is not great, which has left me baffled (as I’ve been CLL treatment free for almost 15 months). But on reading your post above, I realise it must be because of the long term pregabalin use. Would I be right in thinking so?

[AussieNeil Administrator in reply to SycamoreN]

That hypothesis is worth exploring with a pharmacist or your doctor. My doctor allowed me to temporarily go to 900mg per day of pregabalin after I too found gabapentin not that effective and my CLL specialist recommended pregabalin. I've managed to get down to just under 600mg per day of pregabalin for most of the past year. In the last couple of days, I've been trying combining Panadol with pregabalin and I'm hopeful this can now allow me to drop the pregabalin dose. It didn't seem to help in initially, but back then oxycodone didn't help either and tramadol only marginally assisted with the pregabalin.

Neil