I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episodes, some are more severe than others. The doctor prescribed a course of steroids, Prednisolone , they took a bit of time to resolve the gout but the impact on my energy levels was awesome. I almost felt normal. I asked for a course of steroids on a more permanent basis and was refused. Does anyone have any similar experience and been prescribed either steroids, testosterone etc for an extended period of time?
Thanks in advance
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Tomaljoe69
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You were refused longer term steroid use for very good reasons. Read about the risks associated taking corticosteroids by mouth, particularly over a longer term here:
Thanks for your response, I can accept the refusal for the steroids, the reason I ask is the improvement in energy levels has been significant, I wondered if other CLL patients had been prescribed either a certain type of steroid, hormone therapy, testosterone or similar, to help with energy levels.
As well, if long term steroid use is dangerous, what about mid term managed use. During which time I can exercise build back up the muscle I have lost, and improve my cardio fitness.
Was there any reason you were not started with Alopurinol , or were you previously. I agree with AussieNeil about the dangers of longterm steroid use, weakening bones for starters. Have you tried following a low purine diet. Finally a friend who suffers has found Acupuncture helpful with attacks.
Thanks for your response, I can accept the refusal for the steroids, the reason I ask is the improvement in energy levels has been significant, I wondered if other CLL patients had been prescribed either a certain type of steroid, hormone therapy, testosterone or similar, to help with energy levels.
As well, if long term steroid use is dangerous, what about mid term managed use. During which time I can exercise build back up the muscle I have lost, and improve my cardio fitness.
The gout is currently under investigation and it is likely that I will be prescribed Alopurinol
You are right. They would disagree. Because they got it wrong. I was following that incorrect advice for 20 years, never really getting better, on and off Allopurinol. Till I found out the truth and fixed my problem. It's a shame they still did not fix the wrong advice . If it wasn't for the internet I might be still in the dark 😔.
When I take them my energy is up, it is notable in my breathing and strength when I walk, which is different to when I don’t take them, I’ve took them on two occasion when I’ve had a flare of gout and the change in energy levels as been similar. Anecdotal evidence but. I’m confident it’s the steroids as everything else as remained the same
So when inflammation is decreased, you feel better. Stopping the inflammation by means other than steroids may also help. Dietary changes to be less inflammatory, plus a gout medication may get you close to the effect steroids have.
Some people get testosterone therapy as they age, you maybe can check that out. A number of doctors think bumping up natural hormone levels is helpful, it's done with thyroid, for example, But not Rx steroids, which aren't naturally found in our bodies.
I'm the one who posted about the Exercise Study from the University of Surrey. Do read what I wrote and the various responses. I don't how far from Guilford you are, but you only need to go twice and then can do all the other exercises from home. We went one evening and stayed overnight, and then did all the testing the next morning. (The M25 was fine except for the junction at the A3 where there are major roadworks.)
CLL and other things wrong with us certainly do age our muscles. Dr David Bartlett who set up this study writes "‘We believe that while patients are treatment naïve, their CLL cells use energy that the heart and skeletal muscles would typically use. As such, over time, this deprives the heart and skeletal muscle of fuel, making them weaker. If we add treatment to this, it becomes increasingly difficult to repair the damage done by the CLL cells. We believe exercise training redirects this energy away from CLL cells and back to muscle, or in the case of treated patients, it repairs some of the damage caused by the CLL cells and the treatment.’
What I've personally found good about taking part in the study is that the exercise is adapted to my body---and works to build up muscle. It is like having a personal trainer for 3 months.
This may help you get back some energy and strength. It certainly does so for me. Eleanor
Thanks for the response, Guilfords a fair old way, and I couldn’t afford a hotel so I’ll have to give it a miss unfortunately. I would be interested to know what exercises are believed to be most beneficial then I would be confident in building myself a program
First of all, all the exercises I have been given, are given in the context of inital ECG tests, blood tests, breathing tests, etc. It is important that one is all right physically to undertake them.
I've begun with High Intensity Interval cycling on a stationary bike for 30 minutes 3 x a week--the heart rate to be reached and the level is set by the study and changes as I progress. Twice a week, I do strength training. I go to my gym and do leg presses, arm exercises (on a seated neutral grip row) and do wall press ups. Again, the weights and repetitions are set to my level and increase as I get stronger.
As I said, it is like having a personal trainer. Perhaps you could find one? I think that is may be important that a medical practitioner says that it is all right for you to do this exercise.
Of course, there are lots of other exercises one can do to begin to gain strength. I do an excellent zoom Pilates 3 x a week --one day the teacher adds in stepping, and another day, weights. (I could private message if you are interested.) I also do aqau aerobics at my local pool weekly. It is usually is best to start slowly and build up, methinks.
Thanks for the offer, and I really do appreciate it , without sounding rude all I needed to know was if they are prescribing resistant training and what type of cardio, which you’ve kindly answered, the rest I’ve got covered. Thanks again
Sounds like you are knowledgeable about exercise! Forgot to mention that now that I am half way through, I now do the interval bike training 2 x a week with a continuous cycle (mid heart rate) for 45 minutes once a week. I think that it will change again too.
If you doing low to mid intensity stuff as well, sounds like they are covering the three main protocols. From a personal point of view and knowing how the deterioration of my muscle mass has affected me, I complete a lot of mobility exercises. I’m lucky enough to have cousin who’s a physio, he has completed several screening assessments and I working towards achieving the goals he sets. This is a precursor to the strength program I will be completing once my body is functioning and moving as it should. Thanks
You can read about my gout by looking at my profile. I was on alopurinol for several months as part of a trial - Majic trial - and taking acalabrutinib and venetoclax. Just after the end of the "ramp-up" I got a terrible case of gout in both big toes. It could have been started for a few reasons; 1- there was a mix up in the strength of alopurinal. I was taking 100mg and it should have been 300 (more than one doc prescribing). 2- As CLL cells die they give off purines which turns to uric acid. 3-I had a couple of beers just before the onset - that is a big no-no. I finally (while on the trial) I was approved to get a cortisone injection. I've had cortisone a few times before and all the arthritis in my back went away but I know you'll pay for it in the future. I was in Guildford for a conference many years ago and the put beer there is great.
Thanks JD, I too love a beer and the two most extreme episodes of gout were preceded by lots of drinking, in my defence I didn’t know it was a contributory factor. The gout has only just been diagnosed and Alopurinol has not yet been offered.
By experience I will attest to posts here that say not to be dependent on the steroids. They are a temporary quick fix and will eventually cause you much grief. Avoid them as much as you can. Many of the side affects are irreversible.
I have had chronic gout since my late 40's. If you read the studies they will confirm what I have experienced to be the most effective way to manage it. That is through a low purine diet, drink adequate water, minimize alcohol consumption or quit it altogether. Stay reasonably fit through activity and exercise and if you are not allergic to allopurinol, it is the current gold standard for efficacy and low side affects. Allopurinol is a daily dose drug.
Another effective drug is colchicine which expedites the reduction inflammation during extreme flare ups. Colchacine worked the best for me in those circumstances, however, it is another long term side affect enemy. It is easily overdosed and has reactions with many other agents.
Studies show that uric acid is a by product of B cell apoptosis, and having cll means that we have a high probability to become uric acid factories, especially those whose kidneys are predisposed to poor uric acid depleting. One of the reasons that allopurinol is used during treatment is to prevent TLS which is the extreme toxicity from dying cells experienced with treatment and uric acid is part of that toxicity.
Consider the conversation about diet, hydration, and allopurinol with your doctor. I have been taking allopurinol daily for over 15 years, and it appears to have very little unpleasantness.
I experienced higher energy levels on prednisone and asked if I could keep taking it and I was denied. I was on it a second time for sinus infection and got a severe case of shingles. I was told by a different doctor that prednisone lowers the immune system and coupled with CLL it was the perfect storm for shingles. That’s my experience. Now I work out 3x a week and it helps with energy and muscle soreness .
glad it helped your gout I’m not sure how it helps your energy levels.
Although sometimes people get a bit of a steroid high at the start of taking prednisone.
on a long-term basis, prednisone has pretty significant side effects and causes significant problems
also if testosterone is low when can consider testosterone injections and or patches. For some people they work wonders. My testosterone was low however testosterone injections. Haven’t made much difference in my energy levels.
Did they check your uric acid level?
Also Colchcine issues in combination with an anti-inflammatory or prednisone and Works I think more quickly than prednisone alone.
I can definitely relate to the fatigue, joint pain & feeling normal on prednisone. 150mg in 12 hours because I'm allergic to contrast dye for a CT scan. Even the addition of a high dose of 50mg benadryl couldn't stop the pain free, energetic feeling of normality. Half that dose of benadryl alone, a glass of wine and I can sleep the atlantic on a red eye flight!
I hate to be a Debbie Downer but there's no magic pill for the systemic effect that CLL has. Plenty of excellent responses have covered prednisone. Here's a link to thinking on testosterone replacement, it's worth a read:
These questions are rhetorical. Have you talked to your GP? Your hormone levels can be tested. Do your bloods show anemia or have your ferritin levels been checked? Fatigue is multifactorial. Gout is an inflammatory arthritis & you mentioned building muscle mass. Is the loss of muscle mass due to the inability to exercise or is it muscle wasting? They're not the same. I read your last post. Maybe a referral to a rheumatologist would be a good idea? Your blood can be seronegative and still have some form of inflammatory arthritis, as gout shows.
I have peripheral neuropathy & cervical radiculopathy, plus lymph nodes in my neck, I'm waiting for an MRI and appointment with rheumatology. None of the doc's know what is driving what and I've been told I should have release surgery on both wrists for carpal tunnel, despite a neurologist & plastic surgeon specializing in hands talking about cervical spine surgery in the same breath. I can't let myself be bumped into a quick fix which can cause other long term issues.
I sincerely hope you find answers, it's so frustrating and I'm still looking for solutions.
Thanks for the response, very interesting response and your experiences are very similar. Let me digest your answer and if you don’t mind I’ll send you a message
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