What are the withdrawals symptoms of Ibrutinib?

[shazie]

I called the maker of the drug and they had no ideas. I called the hematologist office and they had no ideas. Due to GI complications, I been off Ibru for a week and I been getting high fevers, rashes, headaches...none of which that existed while on WW. Anyone has any ideas at all?

[bkoffman CLL CURE Hero]

Never heard of any withdrawal symptoms from any of the people I know who have stopped the med or in the research literature. Numbers are small, so your problems could be the sign of something new or more likely something completely unrelated and just coincidental. Your symptoms demand prompt assessment by a doctor and not just an assumption they are drug related. Stay strong. Brian bkoffman.blogspot.com

[micg in reply to bkoffman]

This is the 3rd time it has happened to me. Within a few days, i get a high fever, feels like the flu. It appears reading thru this forum that different people have different reactions so all of you coming off Imbruvica for whatever reason, you should be aware but not consider this universal. After about 5 days I am back to night sweats and the disease progresses fairly quickly. I go back on Imbruvica and seem to go back to normal.

[bkoffman CLL CURE Hero in reply to micg]

We are different and sure sounds as of your symptoms are related to stropping the drug.

[canadagoose]

i stopped for 2 weeks due to rash. during that time i had fever of 100-101.5 and headaches. rash took 2 weeks to fade. doctor figured it was continued action of the drug. restarted after 2 weeks and things went a lot better and rash and fever were gone.

[greygirl in reply to canadagoose]

I had to stop ibrutinib two days after because of rash and like you I developed a high fever and felt like I had the flu. Because I had just spent 12 hours in two different hospitals as they tried to figure out how serious my rash was I had no desire to go back to the hospital for fever. I managed to treat myself as in a couple of hours I would have a dermatologist appt. to go to. What`s interesting I had the same high fever and flu-like symptoms three weeks after finishing FCR a year before. So you aren`t the only one. I had researched this and found out there is a condition called chemo fever. So I assumed this is what happened to me. They found no bacterial infection but I was put on two antibiotics and spent five days in hospital. After they gave me iv solution I already felt good but of course until tests came back they already had me on antibiotics. I wish after not taking ibrutinib for five days that I would have had same results as you but after starting again on 2 tabs rash continued combined now with joint pain and swellings in various places non stop for up to two months. Then my white count started to rise so was told go to 3 tabs again which I had tried before but things got unbearable and that ended my experience with ibrutinib. How long were you able to stay on ibrutinib?

[joann504 in reply to greygirl]

I took ibrutinib 1 day and the next day developed rash on forearms with a general itchy tingly feeling. My oncologists said to wait at least 3 days and try again. Today is the second day after 1st dose and am feeling strange. I have never felt like this and am thinking that I am still having a reaction to the ibrutinib. I do not think I will try again because I seem to be allergic. Do not know what I will do as I was hoping that the ibrutinib would be part of my treatment. Am disappointed.

[AussieNeil Partner Administrator in reply to joann504]

Talk to your oncologists about your symptoms. It may be that thye can prescribe something to prevent or reduce your symptoms. In general, side effects from Ibrutinib reduce over time.

[woodside]

Off point but I have been on ibrutanib for about 6 months. Severe rashes( petichiae), joint pain and really bad and recurring tenosynovitis ( inflammation of the hands) have been what I have noticed. Also the way the medication is processed, through the liver can interact powerfully with other medication. Some other medications, which are processed through the p450 system in the Liver can potentiate the medication up to 27 times. I have had to go off Ibrutanib used it in reduced doses , for short times while on certain other medications.

This is such a new drug that many side effects, complications are not yet known to the pharmaceutical industry, nor to docs, many Oncologists have only one or two patients on Ibrutanib.

There seems a perfect need for patient/ Oncology forum to share information, rumors or data as time passes. We are guinea pigs !!

Having said that I am so grateful to have the hope of meaningful treatment, with some preservation of immunity, especially given the jaw dropping cost of the medication. It seems well worth taking personal risk, tolerating side effects, adjusting life style. As my wife reminds me, a medication powerful enough to affect cancer, must be expected to affect other things, as well.

Perhaps Brian or another of our wonderful resources can steer us towards such a forum ??

[greygirl in reply to woodside]

I`ve had exactly what you describe in side effects! dose reductions for me also also. Second week into treatment I developed an infection on my right hand so was on antibiotic. The only other side effect that I was able to handle was constant yellow mucus from my nose. Except I didn`t last as long as you did. What were you given to relieve the joint swellings? What about the hand swellings? I had swelling in my feet also could barely walk, use my hands. What did they give you for pain relief? That you made it for six months? I quit after two. Since off ibrutinib what was your next choice, I`m curious.

[PaulaS Volunteer]

It's a bit disturbing that three people here have had difficult side effects with Ibrutinib - two when they were still taking it, and one when it was stopped. I'd be interested to know if you three were taking the same doses as each other, and what other medications you might also be taking?

I was glad to hear that for Canadagoose, the rash and fever did not continue when she re-started the treatment after a break.

Hope all goes well in future,

Paula

[greygirl in reply to PaulaS]

I`m glad to know I was not alone in my side effects. after I developed the rash since my cancer center was closed I called the Specialty Pharmacy for advice on my rash. It itched and burned all at same time THEY TOLD ME THAT IT COULDN`T BE FROM IBRUTINIB BECAUSE RASH WASN`T ONE OF COMMON SIDE EFFECTS. But they told me to go to the hospital anyway to be safe. I was started on 420mg for cll no deletion. Dose reduction didn`t help me. `I would like to try it again as it will soon be a month off it but I fear my side effects will come back with a vengeance.

[narl in reply to greygirl]

Was it shingles? I want to the cancer center with a rash and eyes swelling and they told me it was an allergic reaction but it was shingles. I have had shingles three times in the past but it presented different now that I am on Ibrutinib had in them I had it on both sides of my body, Back of head in my hair and On my eyelids. Other symptom was I felt like I had bronchitis because that Ibrutinib messes up your sinuses. I took amoxicillin and that’s why they thought it was an allergic reaction even though I’ve never had a reaction to amoxicillin in the past. So when you say itching and burning that makes me think of shingles

[greygirl in reply to narl]

no I was seen by dermatologist and she said it was a drug rash and reaction to ibrutinib. I actually had on my underside of my wrist what looked like a burn with a pus filled bubble that finally broke and three different types of rashes that spread as the time past. I am on venetoclax and I have swelling with rash only on left calve with swelling.

[Center]

Hey, I have been n ibrutinib a month..I did develope a rash that subsided after about a week..... Other symtoms I have had or swelling in my lips a tiny bit....but the trade of was worth it to feel this great. I'm energetic and continue to work .... I also drink 64ounces if water a day and my great doctor allowed me to take some f my standered suppliments vitamins k and c.... Hopefully after I have retuximab I can began more of them. I like to take reservatrol and viramind3.... Will keep you posted of any other side effects ... I pray this is the beginning if great strides in healing for us effected with blood cancers.

[greygirl in reply to Center]

Are you still on ibrutinib? How long? Why did you have rituximab? Were you in a clinical trial with combo rituxan/ibrutinib? I had FCR first then ibrutinib later alone but had to stop because of side effect. I have cll.

[Center in reply to greygirl]

Yes I am in a trial.. Retux 6 cycles then just ibrutinib. Been in the trial two years now continue to work and have a good quality of life.. I too have CLL. When my CLL was discovered I was stage 4 very high white count

[Graham2222]

I left off Ibrutinib for two weeks because of the need for an operation, but had no side effects in doing so. I am back on it now, and have a lung infection which may or may not be related.

[Corin850]

I didn't have side effects from stopping Ibrutinib. I did have a rash due to overdosing septrin

[suz02]

Just wondering what your diet is like?

[shazie]

Hi Suz. I just replied to your other question. I posted an updated question about withdrawal symptoms of Imbruvica.

healthunlocked.com/cllsuppo...

My diet before Imbruvica was mainly organic salads and juices for lunch. I live in US and I do follow EWG.ORG ecommendations. Unfortunately, with Imbruvica my diet is not as good as before because of my stomach problems. I now eat red meat twice a month. Only organic chicken breast, Wild Alaskan salmon. Basically, I watch what I eat And try to go for a walk at least 4-5 in a week. I love drinking coffee but with Imbruvica I had to reduce it to once a day in the afternoon. Clean water is my saviour.

I am not sure if you are familiar with Gerson Diet but I do suggest do a little research. Remember, Gerson Diet is different from Gerson Therapy which is very hard and restrict.

Please let me know if you have any other questions.

{Admin - added in front of the link so it will work}

[Apeplow]

I had been on ibutinib for 4 months for Waldenstroms then started having headaches, pressure in my ears, excessive spaciness and low heart rate 49 bpm.

My doctor suggested stopping the pills. Then I developed high fever, chills and reduced energy as days proceeded. Tylenol reduced the fever and chills. Hopefully these symptoms will reduce as time goes on.

Has anyone had any experience with withdrawal symptoms or have any insight for me? Ajp

[shazie in reply to Apeplow]

Ajp. I am still searching for any answer to the same question. I emailed Patient Power and CLL Society for their help but neither have responded yet. My oncologist has never heard of any withdrawal symptoms and I am sure it is very uncommon for patients to have any withdrawal symptoms. The only rational explanation that I have been able to come up is that if you have a very active CLL and Imbruvica is working for you simply by stopping the meds your cells become very active again and you notice some B symptoms like chills, headaches, fever and so on. Again, this explanation is merely my opinion and I would appreciate it if you could let me know what explanations your physicians might provide to you.

Take care.

Shazie

[Hidden in reply to Apeplow]

My husband had to stop taking ibrutinib 2 months ago and has chills, fever, sweats and fatigue (severe) 2-3 times a week at the same time of the day each time. Milder on the in between.

[Sarahherbe]

I have been taken off ibrutinib for a week (hopefully) because of elevated liver enzymes. I have been on ibrutinib since January, 2017 with minimal side effects. However, being off ibrutinib has given me body aches, fever and sweating. I hope I can go back on it soon as I have the unlucky 17p deletion.

[tominyc]

I've been on ibrutinib for exactly one year for Non-Hodgkins Marginal Zone B Cell Lymphoma.. I found this forum as my oncologist just told me to stop taking ibrutinib during my visit yesterday, and I have the same questions about any withdrawal side effects. . One reason I was told to stop was my year's grant from PAN ended June 15th, and there are no more funds allocated to renew right now, although I would/will find the money somehow to meet the requirements for help from Johnson & Johnson. I'm on Medicare, so they aren't as generous. I have a month's supply of pills left, so I'll be covered if I need to get back on quickly. Also I cannot get rid of terrible rashes on my lower legs, and some swelling of feet and ankles occur, but not as much as before. My vision has also been affected, although my oncologist told me this would be temporary. But my platelets are still very low, which is also a side affect of the medication.

My initial dosage was 3 pills a day. It was so horrible, I had ulcerations inside my mouth and tongue which bled frequently. Then the terrible rashes and huge swelling of my feet, ankles and calves, I could barely walk. Had a CAT scan to make sure I didn't have DVT, and fortunately not. .So my dosage was cut to 2 pills a day. I'm very thin so couldn't tolerate the recommended 3 pills a day dosage. Initially, ibrutinib wasn't strong enough to combat my frightening rising IGM levels, so I had 2 sessions of plasma phereses to remove proteins from my blood, and then had six long sessions of chemo "cocktails", along with ibrutinib.

After the chemo, I seem to be on the road to remission, as my IGM levels so far have gone down to when I was first diagnosed 4 years ago during "watchful waiting. So I'm apprehensive about not continuing ibrutinib, but I think my body needs a rest, and hopefully the horrible rashes and frequent leg swelling will go away. and my platelet count will rise.

For you who haven't been on the drug very long, my side effects (which are part of the list on their website): severe rashes on legs and feet (still have them on legs, but not as bad); swelling of feet, ankles and calves; fatigue; vision problems; low platelets; high blood pressure; occasional headaches. I also had a few days of sudden nose bleeds.

For rashes, besides lotions, I occasionally take Benadryl; Headaches, I take Tylenol (cannot take Advil). My oncologist suggested I take ibrutinib in the late evening, as it can make you very tired..

So my next appointment is in 4 weeks, and I just hope my IGM level continues to go down.

Thanks for listening - sorry this is so long, and I hope I was able to help with any questions about side effects..

.

[shazie in reply to tominyc]

Hi Tominyc. Thank you for sharing your experience with us. I wish you the best. Please hang in there. From my experience things get better over time.

Take good care.

[dooner6]

Being treated for Walden's as well and been off I since Thursday and have had 102* fevers, chills , headache and digestion problems. Dr told me I caught a "virus" Not sure what to think..

[Ten123]

I have stopped taking ibrutinib now for about 10 Days. I have had a sickness bug and now got severe headache , pains shooting through my head. I'm unsure if these are withdrawal symptoms , it may be a virus but my head is very painful and tender when I touch my scalp?

[shazie in reply to Ten123]

If you didn’t have rash or chills or fever I don’t believe it is related to stopping Imbruvica.

My symptoms happened within two days. Now I know they can prescribe steroids and Benadryl to ease the symptoms.

Good luck and definitely let your hematologist know of what happened and let them monitor you.

[KaterinaFinland in reply to Ten123]

My dad has the same type of headaches and swelling of feet today. Please let us know if you have any changes in this or any new information. Hope you feel better!

[Survivor1951]

Due to a petechiae rash, I was ordered today to cease my 420 mg daily Imbruvica dose. I’ve taken it daily since April with diarrhea being the worst side effect. Imodium daily takes care of that. My platelets today were at 88,000, which is the same as last month, yet the decision was to stop the Imbruvica for one week and then repeat labs. Hoping that I do not have the problems mentioned above. I was diagnosed with non-Hodgkins small B cell lymphocytic lymphoma. After three months on Imbruvica, a PET scan in June showed no trace of lymphoma. I have p17 deletion as well.

[tolliverck]

My husband has been on Imbruvica for 6 mos they are giving him a 3 mo break he is having chills headaches and has had rash on his legs the whole time his joints hurt as well. Wondering if something like a hot tub would help ease the pain

[shazie in reply to tolliverck]

Hi Tolliverck,

Have you contacted his doctor yet?

After seven years, many specialists still are not aware of any withdrawal symptoms and they don’t know how to deal with them. My oncologist suggested using steroids to reduce the symptoms. Maybe you can ask them about that. In my case as soon as I started taking Imbruvica the symptoms disappeared right away.

Good luck.

[tolliverck]

He started with the withdrawals Thursday we called his oncologist Friday he said he didn’t think it was from stopping the Imbruvica which was this past Tuesday and if he wasn’t better by Monday to call . It’s not his headache is like a migraine, the rash is no better. I wonder if he should have stopped more slowly than just all at once

[shazie in reply to tolliverck]

In my case, I had to stop twice and in both occasions I had withdrawal reaction. Both times, I reduced my dosage over three days and that didn’t make any difference. I know each of us react differently to this drug. For many in this forum, stopping Imbruvica had been like a mini vacation. For me both times had been miserable and nobody including Dr. Coutre at Stanford has any idea why this might happen.

[micg]

been on imbruvica for close to 4 years and had to drop off it. Really high fever for 4 days. As things settled, it looked like my body could not regulate temperature. Would go from normal to a 102ish and down to 100 to normal is 2-3 hours. At height, temperature was 103.9. 5 day of awful, still counting. Off to Dr.

[shazie in reply to micg]

Hi Micg.

I am sorry about your terrible ordeal. I need to extract a tooth within the next month and I am already very concerned what might happen when I stop my Imbruvica.

I have been told that steroids might reduce the withdrawal reactions. Please talk to your doctor hopefully he will offer you some relief.

Take care.

Shazie

[micg]

Imbruvica is a good drug and I was on for 4 years. I do get a severe reaction when I come off - within a few days; which is high fever and flu symptoms. Dr. explains that imbruvica and a short term effect. In other words, when you go off the drug the disease seems to come back quickly. Perhaps my fever is because my CLL is getting fairly aggressive. Don't know but be heartened that not all are affected as I am. More interesting for general awareness, I went off imbruvica because I went on venetoclax too. Imbruvica was beginning to lose it control over my disease but not totally. The plan was to stay on imbruvica and supplement with venetoclax. This was working great. Although this is in phase II trials it is looking very effective. At least my experience. My insurance carrier however, without any notification, discontinued my ability to get imbruvica which sent me into this downward spiral. Still digging my way out as I purchased imbruvica out of my pocket for a weeks dose as i appeal to insurance. They denied me again. I took my last imbruvica pill last night. Seems MagellenRX - my pharmacy carrier has pharmacists looking over drugs with no expertise in this disease and emerging treatment combinations. They are reading from a script. 3rd appeal underway.