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Cough medicine and vitamins

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Hi alL

First post on here so hello. Diagnosed with CML in late July 2021, currently taking 400mg Imatinib.

I have a chesty cough which is annoying and so just wondered if anyone is aware of whether I can take cough medicine while on Imatinib, or whether I should call my consultant instead? It’s not too bad so over the counter medicine is what i would go for initially.

while I am on, I’m interested in views on vitamins that people take. It’s not something I have discussed with my consultant so any views welcome.

Thanks,

Dan

Hi Dan, welcome to this forum. I would check with your doctor about cough meds... have you had the cough for very long? Have you had a covid test? Also, you might want to ask your doctor about your Vit D3 levels - they should have this easily available. If your level is low you should really consider taking supplements... see the thread below about how Vit D is crucial to general health. Most of us that live in the northern hemisphere are quite low in D3. 

Before I started supplementing with D3 I regularly had chest infections - more than annoying! After getting my level up (I like to keep it at around 90-100 ng/ml (nanogram per ml of blood) I have not had a chest infection in over 2/3 years. It also helps with other issues like joint pain etc.

But do check with your clinician about that cough.

How are you responding to imatinib?

Sandy

 

Hi Sandy 

Thanks for replying. Only had the cough for a day or so and did a lateral flow yesterday which was negative. Feel a bit better today it’s just annoying! 

That is really helpful about Vit D and I did take a look at the other thread which kind of prompted my question. Will speak to my doctor about that.

Generally been okay on the Imatinib, my blood levels returned to normal after about 3 weeks and I’m not due to see my consultant until November for the BCR-ABL, so hopefully it’s going ok. Did get tired easily initially, and had swelling in my ankle/foot last week which has now gone, but other than that I feel ok.

thanks again,

Dan

Hi Sandy 

Thanks for replying. Only had the cough for a day or so and did a lateral flow yesterday which was negative. Feel a bit better today it’s just annoying! 

That is really helpful about Vit D and I did take a look at the other thread which kind of prompted my question. Will speak to my doctor about that.

Generally been okay on the Imatinib, my blood levels returned to normal after about 3 weeks and I’m not due to see my consultant until November for the BCR-ABL, so hopefully it’s going ok. Did get tired easily initially, and had swelling in my ankle/foot last week which has now gone, but other than that I feel ok.

thanks again,

Dan

I got all sorts of weird cramps on imatanib at first. Magnesium helps, i take 300mg a day but do read up on the types of magnesium supplements as the cheaper ones can give you running stomach.

Light weight training, when you feel ready, also helps with cramping.

Lastly try to get 2-3l of water per day. Its great for general health but helpful with tkis too.

Welcome to the club! ;)

Ps: I've had a few b12 crashes so i take supplements regularly. And i started with d3, cause Sandy and Scuba said so.

Excess b12 is eliminated by the body but the same isn't true of d3 so you need to watch your levels if you supplement. I take 5000Ui d3 a couple of times a week.

My GP mentioned she's seen several cases of d3 toxicity in the past year because ppl went crazy taking it during covid outbreaks.

Hi Eva,

D3 toxicity is very rare, but maybe people are so scared they want immediate protection and take too much at once... however what what I've read toxic levels take a long time to reach. Maybe your doctor means she is seeing higher plasma levels rather than actual toxicity?

See snip below from Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

"....The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typi- cally due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years)...."

If you are worried about taking higher doses, the addition of K2 with D3 helps guard against possible toxicity but if you read the above paper in detail you might be less worried about the risk.

I am a big believer in taking charge of my own health as much as is possible and questioning everything/everyone including clinicians, who by the way  are not well known for their general interest in nutrition etc. ;o)

This is my personal choice so please do not take what I say on this forum as a reason to take any supplements (including D3) in the amounts I take. We all need to take responsibility for our own health, but I know you do your own research. As you know, there are many excellent and trustworthy resources online.

Sandy

So it turns out my cough was actually the onset of Covid, and I tested positive over the weekend. Currently in self-isolation with mild symptoms so far - cough, very chesty and a bit of aching. 

Has anyone else had Covid while on Imatinib, and were you able to take anything to help?

Hi Dan,

Sorry to hear you've tested positive for Covid. I suggest you supplement with high dose Vit D3 for at least a couple of weeks and take high dose Vit C. I hope you symptoms remain 'mild ' and you recover quickly. Do you have details of your blood counts? Particularly white cells?

Sandy

Thanks Sandy, that’s really helpful. Will order some vitamins online as I can’t leave the house - do you have any suggestions on which to get as I’ve not bought them before? 

I don’t have any details on my blood counts. The last time I had my bloods taken was on 16 August and they were normal so I haven’t had any done since then. Not due to see my consultant again until mid November either…

Dan

Dan, Vitamin K2 helps absorb D3 so if you are doing the latter I would suggest the former as well. 

Clarification:

Vitamin K2 does not help absorb D3. Vitamin K2 uses D3 in the carboxylation reactions which transport calcium from soft tissue to bone. Vitamin D3 and k2 work together.

Bile (from fat digestion) helps absorb D3 into the blood (fat soluble). This is why is it recommended taking  D3 supplements with food that has fat in it. K2 is also fat soluble requiring fat digestion for best absorption. This is why D3 and K2 are often taken together.

Additional reading on vitamin D and cancer:

A review of 25 trials published in the British Medical Journal in 2017 concluded that vitamin D supplementation clearly protects against acute respiratory tract infections, especially for those deficient in D3.

Researchers found that daily or weekly dosing was more effective than a large one-time dose.

The review indicated that for every four people given vitamin D one case of respiratory infection was prevented. Vaccination typically must be given to 44 people to prevent one case of respiratory infection. Based on this, it appears that Vitamin D supplementation might be 10 times more effective at preventing the flu than a flu shot.

A randomized trial which gave vitamin D3 to Japanese schoolchildren found that those who were given 1200 IU of vitamin D per day from December through March had nearly half as many cases (10% vs 18%) of influenza A than those in the placebo group. The children taking D3 also had fewer asthma attacks (2 vs 12).

Supplementing with 5,000–10,000 IU per day of D3 may be necessary to reach protective blood levels, depending on multiple factors

Regarding Covid - I know of no data, example or report documenting hospitalization or death due to Covid for anyone having a high level of vitamin D (> 55 ng/ml). None. All patients with severe Covid had low vitamin D levels. (< 40 ng/ml). Seems to me, the best way to protect yourself from Covid (and flu, colds and other respiratory infections) is to make sure your vitamin D level is in the "sweet" spot and to supplement to get it there.

Keep in mind, vaccines stimulate an antibody response, but without adequate vitamin D, your T-cells which must be released in large numbers to fight the virus, are hampered. T-cells need vitamin D to activate.

(When I was diagnosed with CML, my vitamin D level was 17 ng/ml - and I had colds, flu every season. No more)

Dan,

you could try SmileAmazon.uk (if you choose us as your preferred charity they donate a small % to this group).

Amazon is one place you can find high dose D3+K2 tabs. (see the thread to Christine)...

I order 4000 iu with K2 included. I take 2-4 tabs per day depending on the season and how much sun exposure (with a meal - usually b/fast) which = 8,000 to 16000 iu (larger dose in winter).  I like to keep my plasma level quite high at 90 -100 ng/ml (US measurement)

I assume you do not know what your current D3 plasma level is so you might need to take  a high dose just to get your baseline at least up to and over 75 nmol/L (30ng/ml) . Check out the other posts on this subject... there are many!

Given you have an active infection it will help to get you level up asap, although it does take a few weeks to get to the higher plasma concentrations.

Ask here if you get confused by all this. 

Sandy

That’s really helpful, thank you all.

That’s right Sandy, I don’t know my plasma levels unfortunately. Therefore, is there any suggestions on what I should start at? And is there a risk I could over supplement?

Sorry for all the questions, new to all of this and if this is all on another thread please point me to that.  
 

Thanks again,
Dan

Additional information:

Not knowing your baseline D level, consider starting at 7500 IU's per day (5,000 one day, 10,000 the next). And get tested within the next week or so.

If your base level is below 50 ng/ml - supplement with 10,000 IU's per day for 3 weeks which should raise your level by 50% perhaps more. Since we're heading into fall and winter - stay at 7500 IU's per day after the 3 weeks until spring. In December test your vitamin D level again. You may find you need more D3 supplementation.

Also - take vitamin K2 each day as well. I take a minimum of 200 mcg per day. I also eat Natto which has as much as 400 mcg K2 per serving.

 

Hi Scuba, 

My suggestion for Dan to start supplementing with high dose for a few weeks is because he has an active COVID infection. If I were him I would want to raise by level as much as possible because it is highly likely (given the stats in Northern Hemisphere) that he, like so many of us, is deficient in D3. 

Dan,

It is highly unlikely that you will 'overdose' ... D3 toxicity is extremely rare and would mean taking excessive amounts over a very long period. For the worried/cautious amongst us, please see this paper here, by Michael F. Holick, PhD, MD, Section of Endocrinology, Diabetes and Nutrition Department of Medicine Boston University Medical Center Boston, MA, which discusses the topic of D3 toxicity.

".......The evidence is cleat that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years...."

Do try to watch the YouTube videos as Scuba suggests. 

Sandy

 

 

 

That’s great, thank you all so much for your help and advice. 
 

Dan