Hi I am on Imbruvica Valcyclovir Allopurin since Feb 2021 and recently on Sertraline for anxiety which may have kicked off when i came off prednisone without tapering. 2 months of anxiety only recently abated with Sertraline use. Insomnia is still a big problem. Lesser problem with bruising. No other side effects. Responding well to treatment i am told though not told the numbers. Bloods once a week until now. From now on once a month. Good sign. The insomnia is a real problem and its interfering with my recovery. Told get benzos to assist sleep. Did for 7 days. Worked ok first few days then declined. Dont like their addictive properties. Off them now. I sleep 1 and half hours then wake with sweaty feeling and high core temp. Ages to cool down. Listen to Hoopoono and sleep. Same pattern repeats etc. Its very distressing. Doctors say prescription drugs but i dont like them as all seem to be benzo derived. Tried rescue remedy cool room music all the usual sleep aids. Thinking of cbd or thc to help kickstart my normal sleep pattern and mahbe regulate my temperature surges. I see that cbd and thc are metabolised by the cyp450 enzymes are is Imbruviva. Is it dangerous to use cannabis. Anyone got an experience? What about the temp surge causing waking? Any thoughts?
Thanks. Bernaard
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As you have discovered, cannabinoids inhibit the CYP450 enzyme. So CBD/THC can slow the metabolism of Imbruvica, potentially increasing the likelihood/severity of side effects. One member even reported effects from topical use of CBD oil, which surprised me. There's another reason why it might be unwise to mix the two - cannabis has been found to move CLL cells back into the nodes, countering the effect of Imbruvica. See healthunlocked.com/cllsuppo...
I hope you can find some safer way to get back into a normal sleep pattern.
What time do you take the Imbruvica? When I took it at bedtime it gave me insomnia. I now take it between lunch and dinner. That works much better for me.
Hi AussieNeil. I wonder if there is any information available as to whether Insomnia and or Anxiety are known side effects of Ibrutinib and or Allopurinol or Alcyclovir or any combination of those 3? Thanks Bernard
There has been some past discussion on the above, which you can find in the Related Posts section, which you'll find to the right or below your post, depending on the device you use to view this website. If they don't cover your question, I suggest you write another post with your shortened second sentence as the title .
Neil, my husband take Calquence twice a day. And two hours before bed time he does a couple of inhales. He do it as medicine as taking a pill even he has in the alarm to do it 😃 and it really helps with insomnia. He has been doing this maybe 🤔 about 5 months. He really slept better. Now that I see this maybe the side effects of arthritis is for this?
He inhaled CBD/THC for slipping what is very important for him. He does a lot exercise so he need to have a rest night. And the CBD/THC has been working well. The calquence is working well reducing the CLL. His WBC was 130+ and now are in 5.27 I will said too low. And the platelets was 80 now are in 125. Hemoglobin is 14.5. He numbers are good. The arthritis is caused by Calquence.
Hi so sorry to hear you are suffering with insomnia. Has your doctor offered help other than medication to deal with this; I was thinking about a psychological intervention? It often helps to speak with someone when you are experiencing the difficulties you describe. As a retired psychologist myself I have seen this work from a professional perspective and have and would not hesitate to try this from a personal perspective in your circumstances.I see you are using self help aids to sleep and trying to do good sleep hygiene, that’s a very good start. Having someone objective and looking from the outside in may help you to progress.
Thank you Ann .I am to meet a psychologist on Tuesday. I will update on her suggestions re how to deal with the insomnia. My anxiety which was horrendous has abated due to Sertraline i think. This happened to me previously due to stopping prednisone without tapering but i stupidly forgot the lesson learned from that prior experience which was a bad as this this present one. Took months to recover then and hope its not as long this time.. Regards Bernard
Hi Ann. Went to psychologist Tuesday. Lovely girl but all she can suggest are sleep hygiene things am doing already. Strong suggestion i take sleepers with the sertraline for a while so can sleep and repair etc. Decided to try it. Night 1 slept 5 hours uninterrupted . Yippee. Night 2 back to old problem waking after 1 and half hour. Back to sleep after an hour. Sleep anor hour and so on. 4 and half hours total. Body needs a shock to reset itself i think is solution. Will try sleepers 3 more nights and see what happens. This insomnia is common I understand. Must be some solution somewhere🤔🤔. Will post how i go on this regime in a few days.
You have gotten a lot of helpful replies but I just wanted to add that I had been taking cannabis oil prior to starting ibrutinib two weeks ago, and my care team told me not to take cannabis with ibrutinib for the exact reasons stated here - cannabis can interfere with the metabolism of ibrutinib. Have you tried melatonin? I was told I could try that if needed.
Thank you I am considering taking Circadin which is a melatonin drug . Anyone any experience of it or is it allowed with Ibrutinib? I wonder if my insomnia was kicked off by the Prednisone 9 weeks ago or is it a side effect of the Ib and or a combination of the Alcyclovir and Allopurin?
My hematologist said alopurinal is only supposed to be used for one month when starting Imbruvica, which I did. She still has me taking acycovir 2x day with the Imbruvica. Are you of menopause age? That is when I began having horrible insomnia. One of the nurses I worked with recommended a Tylenol PM and it did work. You may want to visit a sleep clinic, but I agree about not taking anything addictive. Have you tried melatonin? Both my husband and sister are prescribed trazadone to help with sleeping. Hope any of this helps.
Thanks Phyllis am 64 year old male no meno thank god. I dont envy women who have tough menopausal symptoms. Am coming off Allopurinol i am now told. Lets see if makes a difference. Regards.
Good luck with solving the insomnia problem. I think I've tried all the above suggestions without success and ended up with a prescription for Zopiclone (Imovane) with subsequent relief. I take a half dose on bad nights. It is molecularly different from the benzodiazepines and is an approved drug in NZ . But I have a feeling it might be banned in the USA?(I'm on Ibrutinib too but have never had prophylactic drugs prescribed to take alongside them)
I am on acalabrutinib and had severe insomnia. Drugs for sleep did not work and made me feel awful. I was referred to a sleep psychologist who walked me through simple steps I can take to get better sleep. CBT-cognative behavioral therapy, (not CBD). It is been ridiculously simple and effective most of the time. On rare occasions I take a small dose of bezo, but generally avoid it due to the risks associated with regular use. Insomnia is largely learned behavior and can be unlearned.
You just started your treatment and still on Allopurin so don’t expect normal. Your doctor is not going into the numbers because everyone obsesses about them. Your anxiety sounds high enough but only you can decide which is a bigger problem knowing or not knowing. As for your side effects you need to drink a gallon of water a day. Tea, juice and milk don’t count. Your goal is to flush out all the cell waste from your body. Water is essential for getting your medicine into your system. Your goal is clear pee in the morning. Then keep it clear all day. You should find a positive thought or mantra and focus on saying it in your mind I have a couple: “What doesn’t kill me, makes me stronger “. “I am getting stronger because I am still here.”
As I've mentioned before, tea, coffee, juice, soup and milk, etc., do count. A US gallon is nearly 4 litres, an Imperial gallon just over 4.5 litres. I was just today talking to a doctor friend who knows of two people who have died from drinking too much fluid. Just recently we had a member posting regarding symptoms from excessive fluid intake. As you noted, a good guide is your urine colour, which we should aim at keeping no darker than a light straw colour.
Neil
Hi,
You are in phase one of Ibrutinb treatment, the purging of your body. So drink water, lots of water. Clear pee all day is your goal.
You one gallon a day. I start with 14 oz(.5 l) to wash down the morning pills followed by another class before coffee. Then a glass an hour for the rest of the day. You could be on
Allopurin for one to three months depending on how much cellular waste you have to purge. After you come off Allopurin you should be trained keep it up. We have in common drug induced anxiety so medication can help. But using your inner voice to compare how you feel about something now and what you know to be your normal response should be. We all have emotional response to stimulation we can also choose to look at our response and choose to think about what is our appropriate response. Having a mantra that calms you is a good bridge to self analysis. Mine. “What doesn’t kill me makes me stronger. This won’t kill me. “
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