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Imatinib & autoimmune condition

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Hi there, many years ago before my diagnosis of CML I was diagnosed with an autoimmune condition called angina bullosa which I now know can be an early sign of leukaemia.

I've been on Imatinib since July, in November I was told I wasn't having an optimal response and it was agreed I try a further 3 months but if still the same id need to change TKI. My review for this is next week.

Since Xmas my autoimmune condition has been significantly triggered and I'm left unsure if it's Imatinib triggering it or is a sign the leukemia is not being controlled by the Imatinib.

Has anyone else experienced something similar and if you needed to change TKI was there a better one to try?

What is the trigger? How do you know your autoimmune issue is acting up?
I was on Imatinib for 11 years. Most of what I remember of that experience is back pain.
I switched to Nilotinib and got better responses but the side effects can be more serious so beware.
That goes for most other TKIs.
Imatinib may be the least brutal of all the TKIs on the body although you wouldn’t think that from all the bone pain.

Good luck,
JP

Hiya, in all the years I've had this autoimmune condition I've never had the blisters on my body, only inside my mouth but it's escalated and I now have them on my body so thinking it can only be the Imatinib which I researched and says can trigger it or it's the leukemia not being controlled by meds as I've now learnt it could have been an early sign of leukemia and at my last review I wasn't having an optimal response as the consultant hoped.

It's such a conundrum to know what to do next so was just interested to hear if others have experienced something similar.

For years before coming to this forum I suffered from many side effects of either the disease or the treatment not knowing they were the cause or at least part of it. What I have learned over the years that many side effects from TKIs are also exacerbated by intake. I have noticed certain foods and drinks can aggravate side effects. On Imatinib coffee was a problem. Now on Nilotinib, coffee, sugar, carbs, …. I have to watch my intake as the severity of side effects increases. For example drinking coffee and having a lot of sweets makes my eyes extremely dry especially at night. A lot of carbs contribute to constipation.

As for your blisters moving to another TKI may solve that. But if it’s just started to happen and your numbers are good on your current TKI then maybe look into the entire intake of your day. Maybe a tweak here or there may improve your situation. Before moving onto to something different I feel it’s always a good idea to do what you can before a change. Sometimes it can take a while, years in some cases, before your body adjusts. It is our way of life now, to monitor ourselves and adjust when necessary.

I have been doing this for so long now I forgot about what a care free life in terms of health is like. Now I am in constant monitor mode. But it gets easier as I am not as distressed over it as I was in the past. You get used to things.

JP

Thank you, that's really interesting. I hadn't even thought about how foods and drinks might interact with the TKI.

Let us know if you discover anything.