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alanbarlee

 

A warning from a recent personal experience with steroids :

For the past six years I've been on low-dose prednisone - and then dexamethasone - as an adjunct to abiratrone (Zytiga) to avoid low serum potassium and hypertension. (A corticsteroid is also used as an adjunct with docetaxel). One of the side effects of long-term ADT is loss of muscle mass and strength (sarcopenia), which is exacerbated with corticosteroids, so I've been slowly weaning myself off the dexamethasone (with my oncologist), and increasing my gym commitment.

A day after I stopped the last dexa dose I was hit with a bad reaction akin to rheumatoid arthritis, which caused significant pain in all my large joints (especially knees) and lymphadema in both lower legs. After a few days of real discomfort I went back onto my original daily dexamethasone (0.5 mg/day) and compression stockings, and all the problems resolved within a day or two.

It seems that long-term use of a corticosteroid like dexamethasone, which among other things is a potent ant-inflammatory, effectively 'trains' the immune system to adapt to its presence, even when at a very low level, and when it is taken away, the body quickly produces an auto-immune response that affects the large joints and the lower leg lymph nodes.

Anyone going off it should be VERY cautious and do it VERY gradually - perhaps monitoring inflammation blood markers like CRP and ESR while doing so.

(Shingles - a somewhat age-related and painful condition - is another auto-immune disease that responds to corticosteroids. High then reducing doses seem to be the the usual treatment, but there is a significant risk that Type 2 diabetes that can follow the steroid treatment).

Although life wasn't meant to be easy, it continues to be good, however!

Cheers,

Alan

 

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Kezza2

I have had a similar but much severe experience.  My problems started with discouvery of mets in the Dura, the membrane between my skull and brain.  I was put on 10mg dex daily immediately and this was maintained for 4 weeks until after radiation, then reduced to 2mg as part of the weaning process.  A secondary series of mets were discovered so the dex increased to 4mg/day while undergoing additional radiation, which I completed last Friday.

I am due to start cabazitaxal next week for the bone and lymph mets elsewhere in my body.

As a result of the high dose dex, necessary to reduce the mets prior to radiation, I have a severe reduction in muscle strength, especially in the quads.  This has resulted in my need to use a walker to stand and move around.  I initially got away with a walking stick, but5 a severity of the symptoms has increased I have had to resort to the walker.

My knees and hips are quite painful most of the time, for which I take pain meds (endone + panadol) 4 to 6 times a day, depending on severity.   I am hopefull we will be able to wean me from the dex over the next few weeks, and I may see a reduction in effects.  Currently even gym is out of the question as I can not even stand unassisted by the walking frame.  I have had a couple of falls recently as a result of the weakness and involuntary muscle spasms, but nothing broken so far. I have also had to install a dunny seat, shower chair, and a frame to help me get out of bed.  Mass of my quads and lower legs I would estimate at being less that half before we started Dex, and strength is a real problem.  I hope to be able to recover enough to start even simple exercise such as walking, but who knows ???

I am down for MRI in 6 weeks to see if the radiation had been effective, and probably PSMA PET around the same time to check the efficacy of the cabazitaxal.  I will let you all know if I am still alive and kicking

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Colin Glover

Thank you Alan for that warning as I'm just starting using low dose dexamethasone as I'm now on Zytiga. However when I took my first lot of Zytiga I immediately had a wave of fatigue which took a day to recover from. So I'm holding off over the weekend will see what happens next week. Has anybody tried using dex off and on?

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Colin Glover

Thank you for that update Kezza2. I had been wondering how you were. Obviously not good and the challenges keep coming. I finished 5 days of radiation on my pelvis with varying degrees of pain and fatigue. I hope you get some respite soon. I think the coffees out of the question maybe a phone call?

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ardee

This recently published research may be of interest comparing various doses of prednisone and dexamethasone with abiraterone. It was reviewed by our resident expert, Len Sierra - a retired research pharmacologist, on our website.

 

Onward & upwards, rd

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Patrick Turner

Hi all, I only had small amounts of dexamethasone during chemo, but was advised to continue 2 x 5mg prednisolone daily.

The chemo failed, so I had 4 x Lu177 shots and still didn't need any dexa. I also didn't need the scrip for 2 x 25mg prednisolone during time after Lu177 shots.

But a hip went bad, docs said 5mg pred was OK. I am taking 2 x 25mg Voltaren daily.

I am now weaning myself off pred which means halving the dose every month and so far, no bad reactions.

Not only that, my sore hip has got better by doing SFA for last 3 months. I nice good rest, apart from housekeeping, as I live alone.

So I felt so good I have been able to cycle, no pains during or after, but the SFA solution meant I lost fitness and average bike speed has dropped 2kph. But that does not worry me because I might get a lot better if I can keep it up.

My docs have told me that drugs like Zytiga shut down part of adrenal gland that makes the normal level of cortisone. The 2 x 5mg is taken to replace this. But after no 2 Lu177 shot, and for 3 weeks before No 3 shot, I cycled 960km in 3 weeks after having quit the pred cold turkey. I felt just great. One doc was horrified when I told him. Then I used the scrip I had for 25mg pills and didn't bother to realise I only needed 5mg pills, and for 3 weeks I was taking 2 x 25mg daily. There were no side effects I could identify.

But when I realised what happened, I broke each 25mg pill into 4 bits, and took the largest bits first and smaller bits last, and am currently on 2 x 2.5mG daily by breaking 5mg pills in half.

I cannot identify any withdrawal bothers, maybe my adrenal glands are back working, but I don't know.

Adrenal glands also make a small amount of testosterone. Maybe Xtandi I am taking now is playing games with adrenal glands, I really ain't sure WTF is going on, but I am cycling again, and spring is coming, and days are now very nice cycling weather. 

The cycling forces my body to say "Hey, get your lazy self back into some sort of order, or else..."

OK, I feel much better being active. The only thing I had to make sure I did when doing SFA was to NOT eat more, but to eat less, so over winter I did not put on any weight, and I have GFE DNA - its the one that means "Get Fat Easily." So just eat 1,200 cals a day, and voila, no weight gain, but with wonderful array of vitamins from plenty green raw vegies, low carbs, medium proteins, not meat, and reduced olive oil.

So far so good. Maybe I cycled 100km last week. One ride was 42km. I'm doing craft work in shed, working on an old AM radio, happy as Larry.

I am coping OK with the certainty of uncertainty. Psa is still going down after Lu177.

So far so good. To survive another year, I won't be surprised if I have to spend 50 grand for treatment at private hospitals with hardly any Medicare help. But I cannot take $$$$ when I begin to un-live.

Take care, and do whatever you can, no need for heroics, but something is far better than nothing.

Patrick Turner.

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alanbarlee

Thanks for the responses, Guys. It's so useful to compare notes like this.

Even though dexa at 0.5 mg/day seems, on the balance of probabilities, to help Zytiga to do its job a bit better than prednisone (two small trials, one of which has been quoted above), I'm forming the opinion that the possible benefit to me as an individual  is not be worth the apparent increase in sarcopenia,  so...I'm planning to revert back to prednisone, at 2 x 5 mg/day as per the long-standing Janssen label. With my PSA down at 0.01-0.02, that seems to me to give the best ratio of cost and benefit (including bone density, which, while still OK, dropped noticeably during my 18 months on dexa).

Increased exercise and watching my naughty food a bit more closely should give me a good chance of balancing the scales. 

This reasoning will be discussed with my docs next week. 

It's an interesting conundrum for all of us, balancing quality of life (immediately measurable) with overall survival (long-term probability at best).

Best wishes, Kezza - stay as comfortable and as positive as you can - we're all here for you.

Alan 

 

  

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Charles (Chuck) Maack

Hello Alan et all, I had a short use of dexamethasone at 0.5mg daily but returned to prednisone at 5mg twice daily.  I am trying to determine in my mind how I (or anyone) could wean oneself off a 0.5mg tablet of dexamethasone.  It would appear splitting the table in half would be the first try and continuing that 0.25mg daily for a couple weeks. Then splitting that even smaller (running out of tablet) to 0.125mg daily for another week or two, then reducing to taking that 0.125mg every-other-day for another two weeks - then stopping would be the safest. Yes, weaning over couple months, but less likely to experience side effects.  Weaning of Prednisone 5mg twice daily provides an easier manner to do so because of the dosage: 5mg only once a day for a week or two, then split the tablet to 2.5mg once a day for a week, then 2.5mg every-other-day for two weeks, then stop should provide a safe weaning period.  As you experienced - and you didn't explain how you weaned off the dexamethasone - can have serous side effects if not stretched out over a longer period of time than one might want to do.  

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Don Bradfield

1.5 mg of Dexamethasone is roughly equivalent to 10 mg of Prednisolone. Weaning off Dex may be easier if one first converts to the 5 mg Prednisolone tab ratrher than the 25 mg.  Be aware there is also a 1 mg prednisolone tab which can be used . If weaning from high dose prednisolone   ( 50 mg prednisolone = about 8 mg Dexamethasone) it is MUCH easier to use the 5 mg tabs and drop 1 tab every day or so and then use half tabs or the 1 mg . ( Scripts also contain 30 x25 mg or 100 x 5 mg tabs) 

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