I'm new here. I have been experiencing extreme anxiety and depression on Imbruvica and wonder if anyone else is having these issues.

[tootser611]

Has anyone experienced severe anxiety and depression from Imbruvica?

[Bubnojay]

Welcome to our community tootser611

How long have you been diagnosed ? I'm sure someone who has been on imbruvica will be along to share their experience with you. I have not needed treatment for my CLL yet, but be assured anxiety and depression has affected many of our community.

Don't struggle alone with this, talk to your doc and don't discount seeing a counsellor it really can help you through a bad patch.

Hope the treatment goes well,

Best wishes

Bubnjay1

[Peggy4]

Hi Tootser. Just wanted to send best wishes to you. Anxiety and depression I'm sure are quite 'normal' under these circumstances and not necessarily a symptom of the Imbruvica. I'm sure that someone on here will be able to help. Talking about it I think helps, possibly your Dr could put you in touch with someone who could go through it with you? Sometimes just being able to bring anxious feelings out in theopen can help, instead of keeping them all inside.

I do hope you'll be feeling better soon,

Peggy

[Cammie]

Tootser

There are no psychological side effects listed with ibrutinib.

However it is still a relatively new drug so things are cropping up from time to time that were not seen during trials and,of course,we all react differently to drugs irrespective of what they are.

Do you take other medications or over the counter meds? As these can sometimes affect how this drug works.

On the other hand feeling anxiety and depression can be a common condition during and after treatment as the phsycological side of us very complicated beings catch up with what is going on in our physical being.

The treatment you receive from your medical team should be holistic. If you feel this way still you must inform your specialist nurse or doctor explain that you understand they are there for you both for the medical and general well being explain exactly how you feel.

I am sure you will obtain a sympathetic response as they will have dealt with this problem hundreds of times before.

Whatever you do don't just dismiss it because your state of mind is extremely important when receiving treatment especially as in normal circumstances you may be taking this medication for some considerable time. You don't want to feel this way for any length of time,I am sure.

Let us know how you get on don't delay sort it today and you will feel much better!

Geoff

[Cllcanada Top Poster CURE Hero]

This has been recognised and there is currently a study at Ohio State, but like others have said, please get professional help...

Psychological and Inflammatory Responses in Relapsed/Refractory Patients with Chronic Lymphocytic Leukemia (CLL):

This research examines psychological (e.g., stress, depression), physical (e.g., fatigue, pain, sleep disturbance), and inflammatory (e.g., IL-6, TNF-alpha, vascular endothelial growth hormone, etc.) variables and their covariation in patients with relapsed refractory chronic lymphocytic leukemia (CLL) receiving a novel drug therapy, Ibrutinib.

wexnermedical.osu.edu/neuro...

More

stressandimmunity.osu.edu

[skinkade]

I'm on Gazyva and it makes me very anxious and having a hard time sleeping. Doc prescribed lorazepam, only .5 miles, but I think it helps a bit. The anxious feeling is probably enhanced by the steroid that give me prior to the Gazvya infusion too.

Good luck!

Sharon

[Hidden in reply to skinkade]

Be careful with the Lorezapam (Ativan). Very powerful and addictive. I took it daily for three months for anxiety and sleep disturbance. During BR treatment last year. It took 7 months to taper off drug.

[halfdiamond]

Just dropping in to say good luck ... do hope you will be able to solve this soon and feel much much better. I'm new to all of this as well. Please don't hesitate to ask lots of questions of your medical team and here as well. People in this forum are so very knowledgeable, helpful and supportive. Donna

[Ellieoak]

Yes I have my GP give my ELAVIL for the depression and I have lorazepam for aniexty but don't take that except prior to cat scans to relax.

[francc]

I am wondering if with all the other help and advice you are getting, how much exercise you get. I don't remember any depression or anxiety when I began Ibrutinib 3 years ago. But I did have an enlarged lymph node in my armpit that kept me down for several weeks. That was miserable for me. Once well, I was able to start playing pickleball again. For me at least I need vigorous exercise several times a week. Some people go to the gym. Some have yoga. Many walk and ride bikes or hike. Whether or not this is an issue for you...regular exercise can't hurt. Best of luck to you in finding the cause and the solution.

[gnlwood]

When I started ibrutinib I felt strange mentally. Can't really explain it but didn't "feel like me." kind of like depersonalization. This went away after a week or so. My depression comes and goes. With me it's from the disease not the treatment. Definitely get some help.

[mskids]

I have been on Ibruvica for 2.5 months now. I have noted anxiety and sleep problems. Perhaps the two are feeding on each other to make matters worse. I wanted to find out if your situation got any better. Anxiety is one of the listed side effects of ibruvica now. I hope that this condition will change. It is hard to focus on daily tasks. I hope that you are doing better!

[mcclurep]

See the other thread under IBRUTINIB & Anxiety Attacks--and yes, I've had a recent bout of severe anxiety (or panic) and lingering dread after taking it for at least 2 years

[mcclurep in reply to mcclurep]

Turns out IB can be effective in much smaller doses. The company charges the same for all concentrations, though. I'm going to talk to my doctor and buy a pill cutter. Also, in my case, my reaction was almost certainly due to dehydration toxicity. See: washingtonpost.com/news/won...

[KatieBlue in reply to mcclurep]

I haven’t even been on ibrutinib a week yet, and I feel like my anxiety has increased exponentially the last couple of days.

As an aside, there are warnings to take the pill whole— to not chew or split it,

[mcclurep in reply to KatieBlue]

Yes, it used to be in three tablets you could take fewer of, but they've reformulated it, sorry. And I never got a chance to really try out the lower dose for long--it got too bad too fast.

My experience was good for around two years except for the usual physical (bruising, neuropathy) side effects plus a cheek-biting tic which I can't ascribe to anything else. But this spring I lost my immunity to viruses and infections, my eyesight became blurry, and then one day I had an extreme panic attack which let up but hit again a week later and stayed, accompanied with high ringing in my ears which has never gone away (and my eyesight's still blurry). After the first attack I took a lower dose, but after the second I gave it up.

It took three months, but the worst of it is gone now. I've lost my base of calm and am still questioning the meaning of life and all, but I'm pretty much okay. I'm not sure how Imbruvica did this, but nothing like this had ever happened to me before and I can't afford ever to take that chance again--it was hell. If it's already hitting you like this I fear for you.

The drug company recently acknowledged that a much lower dose might be just as effective (see the WaPo article) and perhaps have fewer side effects, but then charged just as much for the lower dose (and the price was already insane, I don't know why Medicare and other insurance pays for it). I reported my experience to them and to the FDA. They're not disposed to help out with, or research, side effects, so I don't think they can be trusted. For me it was quite a good drug for a long time until it turned on me, and then I was on my own. (My doctor is looking for new drugs, but I'm off everything right now.) I hope you have alternatives.

[KatieBlue in reply to mcclurep]

I am very sorry to hear this. I don’t know if it’s any help, but my vision got really bad last August and has been a bit of a struggle at times. They didn’t find anything wrong— the aging thing, they said. Yet they also didn’t have a way to correct things. I wondered if it might be CLL related, but I have found that *Nothing* is related to CLL

(I’m 55, btw, dx 3/2017.)

In addition to CLL I have a number of other chronic worsening health conditions... chronic pain, chronic fatigue, fibromyalgia, stenosis, herniated disks and degen disk disease throughout the spine, bone on bone arthritis... etc... Just the way it is.

Over the weekend I also developed severe R ankle pain. I went to my chiropractor this am, and there were some structural reasons for it, so I’m hoping that’s all it was. Still sore, and will tell them of symptoms if they continue. My neck also had some areas he adjusted and those areas have correlated in the past to anxiety/panic feelings. I didn’t think it was that badly out, but it was. I’m also hoping that is all the problem was, and am feeling a bit calmer. Again, I’ll be monitoring things and see how it goes.

There is a prescription that starts with a V- I think it may be Venetoclax (?), that is a back up for ibrutinib. Have they talked to you about it?

They have me on an anti viral. Very concerning about losing immunity to viruses and infections. That has to be really scary.

Since stopping the ibrutinib, how has your CLL been affected? Is it staying stable, I hope? Did you have other treatment (s) before the ibrutinib?

((Hugs, mcclurep, hugs. I hope they find something that will work for you.))

[mcclurep in reply to KatieBlue]

Vision problems are a known side effect of Ibrutinib, and if they improve (40% might not) can take over a year to do so: rxlist.com/imbruvica-side-e... Phooey on the "aging" diagnosis --but Imbruvica's part in it *might* get better on its own.

I haven't heard of Venetoclax, will look into it. I don't have CLL but a much less virulent lymphoma called Waldenstrom macroglobulinemia which is incurable but milder, usually a chronic blood disease rather than an acute one. Because it's rare, the drugs that are used for it are often borrowed from other diseases' treatments. Bendustamine is one of the possible next ones, among a few under consideration.

Imbruvica was the fifth (or sixth) drug they'd tried and it brought the disease levels down further than the others, but since being off it the levels have been climbing very slowly, slowly enough to let me recover a little before starting something else. I'm weary, weak and wobbly, but both the disease and the drug do that, and otherwise I'm doing better.

I'm glad you're on an antiviral. (One of my drugs was known to cause shingles which can be prevented with an antiviral, both of which I found out too late.) My immunities were always very strong, up to this episode, and I think they're back, to my great relief. You don't need pneumonia on top of everything else, and you really don't need artificial anxiety.

And notice: Anxiety hits 16% of patients taking Imbruvica, 2% seriously. I hope your doctor can at least cut your dosage down.

[KatieBlue in reply to mcclurep]

Ah, I should not have presumed CLL. New to the forum here.

They mentioned shingles as a concern and the antiviral for that and to help fend off other viruses.

It was a bit of a surprise though, because I had a pharmacy consult directly to the appt room to go over all the ibrutinib precautions. About 4 pages of relatively fine print that I can’t read without 200 strength readers and a magnifying glass 😂... (my eyes started major vision worsening well before treatment was even on the horizon. I’ve just taken my 7th day of ibrutinib today. Vision changes worsened around August of ‘17.)

Anyway, the pharmacy team left and rn set up all the labs and a follow up appt. She left and that’s when there was another rap on the door and one pharmacist poked his head around. They may have neglected to mention that in addition to the Ibrutinib, there were 3 other meds I would need to take. One was for just a week. The other two I would need to take 2x a day for the duration.

Not exactly thrilled. Nor by the potential serious adverse effects, which I knew of since about June, when it looked like treatment was around the corner.

I was given the choice of BR chemo or ibrutinib. Hematologist was pushing BR a bit. I have unmutated ighv, so FCR chemo was not a good option in her view.

I didn’t get an official second opinion, but rather did research and talked informally with a few other docs. The info that I got that way led me to push back against BR and for ibrutinib.

The main things. My interpretation/ take away was BR would only give a short window of remission (~3 years) but with unmutated ighv, when the CLL comes back it would likely be a more aggressive form. My Hem. didn’t mention that last part. After trying to ask her through protected email about any other concerns with BR, she still didn’t mention it. When I asked her directly in an appt, she said that wasn’t necessarily so. But isn’t that the gist of it all? Generalities and individuals all react differently, and no guarantees? I felt that was a piece of info I should’ve been given by my doc as part of the decision process. All the damn side effects are also not necessarily so, and they tell you those (with apparently the exception of anxiety/panic and the like, that is.)

Another doctor I spoke with would’ve preferred FCR to BR, but neither with the option to use ibrutinib. But that was 2 outside docs saying if it were them or a loved one, ibrutinib was the first choice.

My Hem said there isn’t enoght data yet on it. (Ibrutinib trials)...

Ibrutinib platelet drop potentials, concerning because my platelets are already bouncing around in the too low area. Bruising / was getting mystery bruises for sometime.

Ibrutinib causing muscle and joint pain, concerning as I already mace midrate to severe chronic pain in muscles, nerves and joints.

Fatal bleeding events, not particularly something you want to experience...

Fatigue has been bad for a long time, but they had said it’s not CLL related ... repeatedly and resoundingly so. They didn’t even want to attribute a fraction of the fatigue to CLL. I revisited after my regular lab work wasn’t all that terrible but my bone marrow biopsy showed 90%. At that time there was a grudging acknowledgement that a small part of my fatigue might be related to the CLL.

When I was possibly having fluid retention— not CLL related.

Vision issues - not CLL related.

There’s more, and hence my comment in an earlier reply that evidently nothing else wrong with me is related to the CLL. Lol...

I’m working on my sit-down comedy routine.

I have heard of Waldensrrom. I never thought of it as a less virulent lymphoma. Rare, yes. But the other.. iall in all it’s very serious.., And if they get to bone marrow transplant— idk, that’s really risky

Appreciate your alliteration and empathize as well.

I hope I haven’t hijacked another’s thread here Does this place have a chat feature?! And a way to stay logged in? I clicked a box for that, but it keeps kicking me out.

[mcclurep in reply to KatieBlue]

(This is a CLL site, I'm the hijacker.) So did they address your non-CLL concerns at all? Swelling, aching, yep--can be Imbruvica specialties. (My feet got big and purple, scaring others but not leading to anything terrible in themselves.) If you had that before, Imbruvica's not going to make it better. If you weren't already reacting badly to it though, I know it's considered one of the more benign drugs and maybe the others would be worse. The fact that it messes with your mind, at least yours and mine if not everyone's, is the one factor I can't get past--it literally made me seek God for relief, which may not have been the worst thing but was a desperate move on my agnostic part.

[AussieNeil Partner Founder Admin in reply to mcclurep]

Hi mcclurep,

Give you have the much rarer B-cell condition Waldenstrom's Macroglobulinemia, may I suggest that you alert other community members about that in both your profile and in your username? That will hopefully prevent you receiving well meaning, but not helpful information from other community members who will otherwise automatically assume you have CLL.

You can edit your profile via this link: healthunlocked.com/profile/...

and you can change your username as covered here: support.healthunlocked.com/...

I'd suggest adding Waldenstrom (if it will fit) to the end of your current username.

You are most welcome to remain a member, given the overlap of treatment drugs and shared side effects and I hope that you'll find other benefits from your community membership. You'll obviously have to be far more careful in regards to determining the relevance of shared experiences to you, however.

Neil

[AussieNeil Partner Founder Admin in reply to KatieBlue]

Here's how you use this site's Private Messaging (Chat) facility:

support.healthunlocked.com/...

support.healthunlocked.com/...

A common reason for getting logged out is inadvertently using a private window/incognito tab (the naming varies per browser) session. If that's not the case, email HU Support at [e-mail] for assistance.

Neil

[KatieBlue in reply to AussieNeil]

Thank you!

[Lola69]

Hello I have been on imbruvica since February 2016 and if I do ever get anxiety it’s due to some major event or stressor in my life and nothing to do with a pill. Am grateful to be on imbruvica and enjoying life to the fullest. Only side effect I have is easy bruising