20 replies to this topic

[tazdad08]

I am just curious about different peoples Tasigna dosage and how/what the major side effects with your current dosage. Please take a minute to fill us in.  

[mariebow]

Up unrtil I injured my lower ribcage about a couple of months after I started tasigna, I only had minor side effects, dry skin,itchy scalp, but it has been two since I started tasigna and my ribcage is still tender and bothers me when I bend down.  I take 2 150 mg of tasigna a day.

[tazdad08]

I am prescribed 400mg, but I only take 200mg perday. I have a lot of pain in my neck and back, fatigue and chemo brain. My side effects seem to run in waves, I may have severe fatigue for a month and then fell decent for a week, then the pains may get worse.. I haven't out any pattern to the madness. 

[Ray99]

I have been on Tasigna 300mg twice a day for two years since diagnosed.   I have been MMR since six months ago.  My side effects are minimum, dry skin and occasional muscle cramp and joint pain.

[shelley71]

I was just diagnosed about 3 weeks ago, and finally will be getting the Tasigna from the specialty pharmacy this Friday. I'm not clear but I think I'm supposed to take 4 150mg tabs a day, so 600 mg/day. I'll admit I'm a little nervous about side effects as I don't know what to expect. My hematologist felt strongly that I would have very few and minor side effects if that, but did say everyone is different and he wants me to report to him what I feel. However, reading comments on this board tells a different story, so I really don't know what to expect!

[mariebow]

Oh yes, I have bouts of extreme fatigue at times also.

[Susan61]

Hi Shelley:  You will find a wealth of information with the group.  There are so many different TKI drugs in use now, that we did not have before.  I am on Gleevec for a long time, and I did have a lot of side effects in the beginning, but I either got used to them or my body just adjusted to it.  I think we all complain of the fatigue at times, and it could be from something else and not even our TKI drug, but in the beginning it certainly was a factor for me to have constant fatigue.  I went through a lot of different sensations as I went along, but some people have switched from one drug to another depending on how it works for that individual.  I wish you the best with the Tasigna, and that it does the job its intended to do.

     Just ask any questions you want, because there is always somebody to help you out.

Susan

[IGotCML]

I am taking 2 150 mg tablets twice a day.  I don't have any major side effects, the minor side effects are dry skin, itchy scalp, some fatigue and occasional minor brain fog.

[IGotCML]

There will be a greater quantity and possibly intensity of side effects when you first start on Tasigna, or any TKI, as there will be more leukemia cells to be eliminated. The side effects should decrease over time with the decrease in leukemia cells.  For example, I had occasional strong headaches that lasted for a few minutes when I initially started Tasigna.  After around 6 weeks, the headaches went away.

[GerryL]

Hi Shelley,

The other thing to remember is not everyone on a TKI is participating in this forum. For a number of people side effects haven't impacted them greatly, so though they may be dropping in here occasionally to catch up on what has been written, they don't feel the need to report on anything, You can only try it and see, you might find you have very little issues with any luck.

[shelley71]

Thanks. It's good to know there's a kind and helpful community, and also to remember that it's not necessarily representative of the population. It's easy to feel vulnerable at the beginning of this adventure, as you hold on to hope and are looking for positive signs, and maybe that vulnerability stays with us!

I will take my ridiculously expensive pill and hope for the best! For those dealing with bothersome side effects, I hope you can find relief.

[soundoff]

2 200 MG in AM and 1 200 MG in PM

Had just about all the listed common side affects at one point in time or another.

I would say for me the skin issues are the most bothersome.

[Frogiegirl]

Jimmy you already know the dose I take LOL 600mg a day. also the most bothersome side affects for me are the hair loss and fatigue, chemo fog and dry skin. other then that (as if that's not enough) oh yeah and the fact that I cant have a baby:(

[lizy1013]

I started Tasigna in January 2013 at 200 mg. twice a day.  Because of side effects, around May 2013 I started 200 mg. once a day.  So far, my bloodwork has been fine.

[tazdad08]

Hi lizy1013

I am glad to some ones else on 200 mg once a day. Thats what I lowered my own dose to. My dr wouldnt agree, but I done it anyways. Did your dr approve of that dose? Has the side effects eased up? I still have the chemo brain and the fatigue, but overall the side effects have decreased.

[lizy1013]

Jimmy Walker:  Yes, my doctor did agree to the 200 mg. once a day on the condition that if my counts started to elevate the dosage would be increased.  Yes, the side effects have lessened.  Good luck!

[LLawrence]

I am sorry to take so long to reply (sign in problems).  I began on 300 bid of Tasigna a year ago, things were great at first with minimal side effects.  After 3-6 mos, the fatigue and bone/tendon pain that developed on Gleevec happened with Tasigna.  It worked great on the CML, though, with PCRU 3 mos after the change.  My doc and I agreed that rather than trying another TKI, we would try a reduced dosage if my numbers stayed good.  I am now on 150mg twice a day.  The side effects are still there but MUCH less severity.  Of note, my Onc (a cml specialist) told me that of all her CML patients, only 2 tolerated the full dose.  So far, I remain PCRU after 6 months of reduced dosage.

LL

[shelley71]

All good information and good news for you! That's interesting about your dr only having 2pts that have tolerated 600mg/day, since that seems to be the dose a lot of people start out on. Do you know the time frame she was referring to, like tolerating it initially or over the long term?

Since starting my 300mg, twice a day, on Friday 4/4, I had headaches right away and for 4 days, then they disappeared. Now I have a bumpy rash over my upper body which is minimally itchy but a super duper itchy scalp that is also tender. I'm wondering if this means my hair follicles are protesting and possibly planning on ejecting my hair at some point?!

I am hearing that some side effects are worse at first then get better, and also that some side effects come on because of prolonged use. All true? It's hard not to know what to expect, but I see that everyone has a different experience so it's impossible to know what to expect.

[LLawrence]

Shelly,

Certainly people's bodies respond differently to these TKIs.  I am only 1 1/2 years into this, so I am far from the most experienced on this forum.  I see that for many, the side effects are worse in the beginning, then settle down with some random worse times.  The opposite has happened for me with both Gleevec and Tasigna.  I had a honeymoon period where I had few side effects, then after 3-4 months the side effects worsened steadily (fatigue and bone/tendon pain). With Gleevec, I told my Onc that I was going to have to limit my work hours due to fatigue.  She immediately changed me to Tasigna.  Again, several months with minimal side effects then worsening fatigue and pain.  I did not want to burn through all my options just to see the same side effects develop after a few months.  The side effects kept ramping up in intensity, though, despite physical therapy, lots of rest, good nutrition, etc.  When I went for my routine follow up visit, we talked about our options.  I confessed that I had gone off my Tasigna for 5 days while on vacation (not recommended) and the pain completely resolved after about 36 hours off.  The only other thing that had worked to eliminate the pain was a 5 day course of prednisone (also not recommended).  My onc listened and only commented that "neither of those are long term options"  and reduced my dose.  At my next visit, I asked if I was making a risky choice in decreasing the dose.  That's when she said that Novartis is starting to study patient responses at lower doses.  She also stated that of all her CML patients, only 2 had been able to tolerate the FDA approved dose long term and that it seemed to be still quite effective at lower doses.  Of course there will need to be studies before this can be recommended.

I do have itchy rashes that randomly come and go.  My hair is actually better on Tasigna (better body).  The rashes get much worse with sun exposure.  

Take home point: we all respond differently. For some of us the side effects are worse at first then level out, others develop side effects that build with time.  I would give it time to settle in to see how these drugs effect you.  Sorry for the wordy reply!

LL

[Frogiegirl]

Just got the ok today from my doctor to try 300   mg today! Yay! They did a BCR-ABL test to establish a base line and will evaluate me in six weeks to check my progress/labs. I hope this helps with my hair falling out the fatigue and occasional muscle cramping:) I'm nervous and will go right back on the higher dose of it doesn't work out. My doc also suggested putting me on sprycel.... which I'm a little scared of because of the sacs of water that can develop around your lungs that need to be drained or diuretics are used. They all have side affects. ... so it's like pick your poison. .....I'll update my findings on this new lower dose in 6 weeks:)