First post & Ibrutinib

[Miejaa]

Hi to all and for those who celebrate, Happy Easter!

I was diagnosed with CLL at age 39. Had my first RFC in 2003, relapse in 2006. MUD SCT in 2010.

Relapse in 2021 and since last august I'm swallowing that golden pill Ibrutinib. After my transplant I already suffered muscle, tendon and joint pain, though since taking Ibrutinib, this muscle pain is rising so high that sometimes I have to take the roof off 🙈

Does anyone else has this same problem?

As they say, a good Haelth is the first Wealth.

Please forgive me any typos, english is not my native language

[Jm954 Administrator]

Muscle and joint pain is very common with Ibrutinib and I had very debilitating, ongoing cramp in almost every muscle.

I found that keeping well hydrated and either magnesium on its own or the sort of electrolyte tablets that athluse, dissolved in water really helps. The evenings were the worst for me but the car,p and pains could happen at any time of the day or night.

You have my utmost sympathy and I hope you can find something that works for you.

Jackie

[Miejaa in reply to Jm954]

Hi Jackie, thank you so much for the info. I'm going to give it a try. Sometimes I'm ready to try anything as long as it helps, I just hate to take more tablets. The hardest thing to swallow is the fact that I will never get rid of them anymore.Mia

[Lawand1]

I was on Ibrutinib for eight wonderful years. I found so long as I was well hydrated, that my diet was more alkaline than acidic it hardly bothered me. I also freely took ibrobrufen including a brand called Flarin which I found incredibly effective (though expensive!). Always ask your Dr but know also it does ease as your body gets used to it. Best wishes

[Miejaa in reply to Lawand1]

Super THX for the info! Amazing that you've got 8 years. I'm going to do my best to follow your example, just don't dare to think further than 6 months

[Hermance]

I was on Ibrutinib for 2 years. after a year I started having leg and foot pains. At first we thought it was restless leg syndrome. But the symptoms evolved. Finally I went to see a neurologist. I have loss of nerve sensations in my legs and feet. Of course I stopped the Ibrutinib as soon as I realised it was the cause of the problem. The loss is irreversible. It did not get worse since I stopped Ibrutinib, but the nerve damage is still there.

[AmCLL in reply to Hermance]

Loss of nerve sensations in both legs, sorry to hear that. Hopefully you will see improvement now that you have stopped Ibrutinib. Are you on a different medication now? Wish you all the best.

[julieS3]

I’ve been on ibrutinib for 2+,years, last year I started having terrible back spasms that lasted for weeks . A heating pad helped and slowly curbed the pain but it remained and after finally stopping they came back. I am very good at keeping my hydration up but I noticed I was sporadicly taking my multivitamin. I asked my Dr to do a magnesium test and vitamin D test both came back normal. Seemed too easy for a cure but I started taking my vitamin regularly also adding 250mg magnesium as well as a couple Tylenol at night can’t hurt right? My spasms stopped and so far have not returned. I hope you get some relief.

[Miejaa in reply to julieS3]

Thank you Julie, at the moment I'm doing exactley the same. Heat pads but mostly cherystone pillow. Vit D, I'm already taking daily since transplant. Starting extra hydratation. I have the feeling that I'm drinking water like a camel. At least you gave me hope that maybe it will stop one day.

[LeoPa]

There's a supplement called LMNT which carnivore people take. It helps with possible cramps during the transition period from a high carb diet to a carnivore lifestyle. You may want to check it out. I mix my own but it's essentially the same.

[Aerobobcat]

Hi Miejaa, yes sadly this is a real problem. I have been on Ibrutinib for 10 years and have suffered from joint and muscle pain throughout my treatment. Only now after all this time are my doctors taking it seriously and may, after discussing this with the MD team, consider a dose reduction, I’m currently on a reduced dose of 280mg.

I should add that the Ibrutinib has been a wonder drug in controlling my CLL it’s just the side effects that are difficult to deal with.

I wish you well in your treatment.

Aerobobcat

[Miejaa in reply to Aerobobcat]

Omg, 10 year of Ibrutinib! Didn't even think this would be possible. I'm certain that my body won't survive Ibrutinib that long. It's already destroyed because of RFC in 2003 and 2010 before the MUD Stem cell transplant. During fall last year, I've tried the 280 mg because of spontanious bleedings. Problem was, my white friends started proliferate like mice. So that wasn't an option. I'm back on 240 mg and try to deal with the side effects. Thx for yr reply and wishing you a nice weekend.

[Aerobobcat]

Hi again Miejaa, just to add I also have another autoimmune condition and have managed to survive thus far so keep the faith apart from the awful side effects the Ibrutinib has worked for many of us and of course there are new treatments as well.

Good luck

[Miejaa in reply to Aerobobcat]

I'm a huge believer of survival It's just that over the last 20 years (diagnosed 24,5 years ago with the unmutated clone), my body got already so much toxic poison to swallow over time that if I would have spread it all in my garden, I think I would be free of weed for the rest of my life So I just don't know how much my body will be able to swallow. But it is what it is, there are plenty of people who haven't be so lucky to survive this, so I'm extremely grateful.

[Aerobobcat]

Hi Miejaa, Yes we are the lucky ones and I wish you well in your future treatment.

Aerobobcat

[Miejaa in reply to Aerobobcat]

Same wishes to you!