Ibrutinib, is it working for me?

[Mick491]

Hi all

Let's start with the good news, I found 5p in the road lol.

My update is that I'm quite poorly and we are trying to identify the cause. Like many at my age I have a number of health problems as well as the CLL. One is psoriatic arthritis and prior to going on ibrutinib I was on subcutaneous methatrexate 20 mgs once a week. It was stopped as a precaution to go on ibrutinib. Within 11 days almost all the CLL symptoms had gone. Later I had general surgery to remove a 5 inch infected cyst on my back. I came off the ibrutinib for two weeks. Everything went well. However the arthritis began to get worse. My consultant's communicated and I went back on the methatrexate for 7 weeks. During this latter time I began to get very unwell and within a couple of weeks both the WBC and lymphocytes doubled. On return from seeing the consultant today, who has taken the bull by the horns, I'm having a bone marrow biopsy this week CT scan next week and I'm waiting for an MRI on the brain for headaches. The consultant doesn't know if the ibrutinib is not working or it's the methatrexate. But theres a plan. Now for those reading, we are all different but we need to share. We collate the info on the 30th and will let you know the score.

Love and good wishes to you all

Mick x

[Newdawn Administrator]

I feel for you Mick because you’re fighting ‘a multiple headed beast’ and being a fellow arthritis sufferer, I know how difficult that can be. We need meds which can then negatively interact with the Ibrutinib in order to maintain quality of life but sometimes they don’t play well together!

NICE guidelines suggest that methotrexate and ibrutinib can increase the risk of myelosuppression (also referred to as bone marrow suppression).

I’ve had to resist immuno-suppressive drugs and anti-inflammatories whilst on I&V and it’s very tough at times.

Thanks for sharing this and I really hope they can uncover the reasons for these issues and sort them for you. Let us know how your scan goes.

As for that 5p you found in the road, don’t be running amok with it! 😉

Newdawn

[LovecuresCLL in reply to Newdawn]

What about a TNF -alpha blocker? I know you aren’t a doctor but what about NICE guidelines on a drug with that mechanism of action for the arthritis while on IB. Or maybe you are a doctor? I need to know too as I am getting arthritis too.

[Newdawn Administrator in reply to LovecuresCLL]

Hi,

My severe flare ups seem largely due to the impact of my Ibrutinib therapy. It’s arthralgia in overdrive it seems and sadly it seems to affect certain people more profoundly. Especially those who had pre-existing arthritis and cannot have anti inflammatories whilst on immunotherapy.

I’m not a doctor and am responding simply as an informed patient who has been unfortunate enough to experience these difficulties and had the interaction of these meds discussed with me.

TNF has not been discussed because I don’t have RA and I’m not aware of it’s use in osteoarthritis presently certainly in my area.

Mick needs to discuss his unique situation with his own specialists. They are the only people who can truly give us the individualised advice we need.

Regards,

Newdawn

[Smakwater in reply to Newdawn]

I do not know if it is a coincidence or if there is a quantifiable relationship, however, my RA and arthralgia decreased significantly at about 3 months into Gazyva. I had some minimal flares about two months into venetoclax, and now I rarely notice pain or inflammation.

I should mention as well that now that my fatigue has diminished, I have been able to put forth the effort to eat better, hydrate, and exercise.

During my progressive disease it seemed that nothing made much difference, and aggravations occurred at random without any apparent reason.

JM

[Mick491 in reply to Newdawn]

Fortunatly i have a good CLL specialist and Rheumatologist whom ive been under for many years. There are many CLL sufferers who are taking both ibrutinib and methatrexate without symptom. But there will always be an exception to the rule. My hope is that it is a reaction between the 2 drugs and not a rejection of ibrutinib, hopefully i will have the answers on the 30th. We did discuss option and the next step, if i cant tolerate ibrutinib, will be iv rituximab and venentoclax. But i believe the remission times are not so good. I see my rheumatologist on 27th July and hes already stated there are alternatives but the methatrexate had been working for a number of years.

[Newdawn Administrator in reply to Mick491]

Glad to hear you have good medics around you Mick and hopefully this can be resolved quickly.

I’d thought Ibrutinib was your second line treatment so should you need a third line alternative, Venetoclax could be given as a mono therapy if suitable. However, don’t quote me on this.

Venetoclax certainly is doing the business in achieving long term durable remission and I’m really hope it does this for me! 🙏

Best wishes,

Newdawn

[Mick491 in reply to Newdawn]

You are right ibrutinib was second line treatment. My consultant was thinking through options when we know more.

[jane1301]

We need to have humour on this forum. It’s always important to share our news and offer support to each other, even when we don’t have the answers. Hope that you will be sharing good news on the 30th.

[LovecuresCLL in reply to jane1301]

Humor for today: This man and woman go to the doctor and the man says “Doc I have to get up in the middle of the night to pee and I open the door and God turns the light on for me.”

Well naturally the Dr thought this was strange so he told the man to wait in the waiting room while he talked to his wife. The wife came in and said “what did he do know?” The Dr relayed about the man “getting up to pee, opening the door and God turned the light on for him.” The wife said “Darn it Doc! Is he peeing in that ice box again?!?!”

[AnneHill]

I hope you get good news and problems sorted. Also hope you feel better, Anne

[DaveGH]

Good luck on the biopsy and scans. Hopefully they work this out quickly!

Dave

[Kokobean]

My husband is also on methotrexate and Enbrel for RA. He has been on ibrutinib for 3 weeks and has done well so far. I’ll be watching for your results. Best Wishes!

[very]

5P wow, what are you going to spend it on?!! sorry, you're having such a rough time hope you get some answers on the 30th.

jenny uk

[Mick491 in reply to very]

Someones already asked to borrow the 5 p lol

[Psmithuk]

Hope the lucky penny (5p) works!

[LovecuresCLL]

What about humira for your arthritis? Isn’t methotrexate a chemotherapy? Maybe common sense thinking....should you ask your doctor if it’s interfering with IB mechanism of action? I think it seems like not a good idea to be on both. Just common sense thinking here.

[Mick491 in reply to LovecuresCLL]

Yes methatrexate is a chemo. Have look at my reply to newdawn above. My answer is there. But as i have statedvthe majority can tolerate both drugs with success. I dont know yet whats the cause, but thebpresumptionmis i cant tolerate both. Thanksvfor your reply.

[LovecuresCLL in reply to Mick491]

My mom had osteoarthritis and late onset RA and she was bedridden until she took Humira. They gave it to her and she walked until she died of a stroke at 82. They are giving it out for OA if it’s in your small joints too! . Try it ....you have everything to gain if it works but there is a risk with TB infection . If it’s ineffective you will know right away. There is Enbrel too, I think . New Dawn will correct me if I am wrong. Both TNF-alpha. . I think it’s costly . It was 5k per month 12 years ago. The drug company may help individuals .

[Hectanooga]

thank you for sharing. Its so important to have other to muddle through this maze of unknowns together.