CLL and blurred vision: Just wondered if anyone... - CLL Support

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CLL and blurred vision

Jooby59
Jooby59
66 Replies

Just wondered if anyone else had problems with their eyes - mainly blurred vision. This started back in the summer and coincided with my CLL getting worse (now on Ibrutinib). I went straight away for an eye test, told them I had CLL, and they did a thorough test. They diagnosed dry eyes and new glasses as eyesight had deteriorated a little. So armed with eye drops and new glasses I thought all would be well but they are getting worse. I am seeing consultant next week.

66 Replies
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Ginajetta

I have been dealing with similar for a couple years. Diagnosis dry eye and yet tearing. Frustrating.

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Jooby59
Jooby59
in reply to Ginajetta

Is your vision blurred and have you seen anyone about it?

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Ginajetta
Ginajetta
in reply to Jooby59

Yes at times it is. I’ve seen eye doctor who tells me it’s dry eye. I’ve used several different drops, soft scrub eyelid wipes. One thing that has helped at times several times a day out very warm wash cloth on eyes fir 2 or 3 minutes, then use drops and then eyelid soft scrub. Some days seems to work other days not. Hope this helps.

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Jooby59
Jooby59
in reply to Ginajetta

Thanks. Yes, that's what Panz recommended so will definitely try. X

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Panz

Jooby, yes I have had many issues with my eyes over 30+ years I have had CLL. I have seen many specialists during that time. Yes, I fight dry eyes big time. For that I do use eye drops at least four times a day and some times it the middle of the night. I have had many prescription changes thru out the years. Then one day I went to the local eye doctor in our small rural town, she was not a specialists but she should be as she treated the whole patient not just the eyes. When she saw I has CLL on the medical form I had been ask to fill out...her eyes lit up. Her nephew had CLL foe many many years and she had done some research on CLL.

This is what she told me....dry eye syndrome will follow me the rest of my life but there were a few things I could do to ease it a little. I was to the point that during the night my eye lids would become attached to my eye balls and so very painful as I couldn’t open my eyes without feeling my way to the bathroom for warm water and a wash cloth. She told me to take a white wash cloth wrung out out and placed in the microwave for seconds and get as warm as I could stand it and place it over my eyes for 15 min. Every morning and before bed and to continue the eye drops 4 times a day. Well it worked!!! However, the wash cloth routine became old hat and one day while in Walgreens, a pharmacy chain, in the States I ran across an eye thing that was filled with small blue pebbles in an aqua gel like substance. I looked at it and it could be frozen or microwaved what ever the need was. So I bought it and that ended the warm white wash cloth routine. It didn’t get things wet. I now continue the eye drops 4 times a day and the blue eye cover only at night and to be totally honest not every night.

Now as for the poor vision issue I had that was never good and I had enough prescriptions eye glasses I could have set up my own business! She told me that the eyes of a CLL person change many times on any given day making is impossible to properly the person with the correct lens at one sitting. So she had me go in once a day for 5 days and she would fit me for that day....she then took the average of the 5 days and that was what she fitted me with and I wore the same pair of glasses for eight years. Granted some days I had better vision then others but just knowing the why was huge. Now not every doctor will do this, however, when we moved I told the doctor this story and when he fits me he plays with the fitting with that in mind and I now wear my glasses forever until the frames break as I have had my baby cataracts removed and that has also helped.

This doesn’t in anyway solve your issues but just maybe a better understanding of what might be the cause. Good luck to you on your journey! 🙏☘️💕😍 Panz

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Jooby59
Jooby59
in reply to Panz

Wow, thank you for such a helpful & informative answer. I am glad you have managed to find some solutions to your problems. Not sure my optician would see me every day for a week 😂. I think the dry eye is causing the blurred vision although no one will confirm this. I will definitely try the cloth and also use my eye drops more. So much of this illness has to be worked out by us - my GP, whilst very nice, knows incredibly little about CLL. In fact, I am thinking of writing a self help book 🤣!! Keep well. X

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Ysabeau
Ysabeau
in reply to Jooby59

Make sure that your eye drops are preservative free. Some indicate that they are but there is still a small amount in them. Since making sure that they were, my dry eyes have improved a lot, not gone, they never will, but easier to keep moist without tearing and blurring. Hope this helps a little. Regards Y

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Ysabeau

Systane (Alcon) and Refresh (Allergan) are easiest to find here (California). Both have preservative free drops which come in single use vials. My specialist suggested recapping the vials to get extra use, as long as you haven't touched the top with fingers or to your eye. You do have to double check for preservative free, as the packaging looks the same as their other drops. They also make a thicker drop that works better for some, and there is an ointment for use at night. When I use that I alternate eyes. I put it in both eyes the first time I tried it. I woke up during the night to very blurry vision - not a good idea in an emergency.

Other good options are Thera Tears (Akron), Soothe (Bausch and Lomb), GenTeal (Alcon), and Bion Tears (Alcon).

There are also single use eye scrubs available. I keep a couple in my purse for when I'm out and the lids are bothering me, but find washing my lids with baby shampoo and a wash cloth, followed by a moist heated compress works as well or better, and isn't as expensive.

For the cat people out there, I have found the vials handy for flushing an infected eye, or for nose drops to keep the nasal passages open (with my vet's blessing). Too small to be cost effective for a dog.

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Hidden
Hidden
in reply to Jooby59

Agree with your comment that GP don’t know much, scary lol

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Ngtinfu

I had cataract surgery on my right eye a year and a half ago and then had it done on my left eye this past spring. I was in W&W when they were done and have experienced dry eye and inflammation in both eyes that cause cloudy vision that gets better and then gets worse. Am currently on prednisolone and Refresh Tears Plus. I believe CLL is the root cause of the complications (inflammation). Just putting this out there in case others have experienced this also. Am now on ibrutinib but no change in vision.

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Ngtinfu

Ask about plugs in the lower tear ducts and / or prescription drops. I get both - plugs and Restasis drops (cyclosporine - from Allergan). There is a newer prescription drop available, but I don't know anything about it. My doctor tells me that he can close the ducts permanently, but I'm not comfortable with that idea.

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WinJ3

I am having the same problem with my eyes (blurred vision). The eye doctor said a new prescription might help, but it didn’t. The last time I saw him, he gave me eye drops for dry eye. Nothing works.

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MsLockYourPosts

Ginajetta and all - I also have trouble with dry eye and questioned the tearing when they are dry. My specialist said that the tearing, when my eyes are very dry, is caused by the dry eye. I get plugs in my lower tear ducts and use prescription Restasis as well as preservative free saline drops. I also wash my eyelids with baby shampoo (my doctor prefers Aveno) and do the warm moist compresses. I found a mask on Amazon that heats when connected to a USB port and has a cover that can be spritzed to give moist heat - removable for washing.

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Ginajetta

Thank you for info. The plugs helped?

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Yuck

Thank you for starting this thread that reveals a connection between dry eye and CLL and perhaps treatment with Ibrutinib.

Looks like we’ve just discovered a diagnosis which for some reason mystified our medical professionals.

Go figure.

~ Yuck

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Yuck

Panz’s extensive information below about dry eye and vision should interest many posters.

~Yuck

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doggers805

I do get some blurred vision occasionally. I have been trying to investigate the cause. Today I was in a brightly lit room. I also Have Ocular migraines that I didn't have before.

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Fiftyseven

I have had tearing, runny eyes for nearly a year which makes my eyes blurry. My doctor prescribed an antibiotic, then prescribed drops for the treatment of itchy eyes associated with seasonal allergic conjunctivitis which hasn’t helped. I’ve taken three different allergy products which don’t work. Sorry, that I am of no help but want you to know you are not alone.

MJ

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Jooby59
Jooby59
in reply to Fiftyseven

Thank you. So sorry you are suffering too. It's a comfort just to know other people understand all these annoying "extras" we are getting since having CLL.

At the moment, along with blurred vision, I have debilitating pain in my left arm & shoulder. Last week I thought all these side effects had gone!!

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Fiftyseven
Fiftyseven
in reply to Jooby59

Hoping your ibrutinib side effects improve. I have not been prescribed to take it yet, but there is some talk of it. All the best to you.

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Jooby59
Jooby59
in reply to Fiftyseven

Thank you very much. It’s definitely not all bad I can assure you! After 3 weeks I have the energy I used to have, my huge lymph nodes have gone and my WBC has almost halved 😊. But some days the side effects are really awful - hopefully they will diminish with time but even if they don’t then the good things more than make up for it! I wish you all the best with your treatment. x

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Fiftyseven
Fiftyseven
in reply to Jooby59

Thanks Jooby59. That’s good to hear. 😊

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SeymourB

I call my cloudy vision my Inflammation Weather Report. I get it only in one eye - the one that got keratitis from shingles. I'm legally blind in that eye now, but the quality of the fuzziness changes day to day. When under severe stress, I get PHN (post-herpetic neuropathy) on the top of my head, and the feeling there's a grain of sand on the side of my eyeball. It's extra cloudy with a chance of showers on such days.

I too have the dry eyes, and use drops. I also have really itchy eyes due to my eyelids at times. I spend all day at the computer for my job ... and writing replies like this. I use Walgreens Cleansing Eyelid Pads for the eyelids. But the latest batch of eye drops I got from them is in a different color box, and I don't like it as much. I try to compare to name brands from time to time.

I see an opthalmologist several times a year. I think everyone over 60 should see one annually.

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CAHP

Do you see any zig zags in your visions...like lightening?

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Jooby59
Jooby59
in reply to CAHP

Very, very occasionally - that sounds more like migraines. My husband gets them.

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CAHP
CAHP
in reply to Jooby59

Ok, if it was lots of zig zags then I would ask for an urgent CT/MRI scan. You don’t want to leave unexplained blurred vision like that too long.

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Beargrove
Beargrove
in reply to CAHP

I get that after I have had eye bleeds and then I got some fairly large floaters. Rather annoying in sunlight or bright lights

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meemsdream
meemsdream
in reply to CAHP

CAHP,

I have had the zig zag lines with lightening as well. I have had this for many years. They are silent migraines. Usually they last for about 20 minutes. I get a slight headache after it is done. Sometimes I get them a few in one day and then don't get any for weeks. I am so used to it now I don't pay that much attention to it. My opthamologist was not that concerned. This may be what you are experiencing. I also have dry eye. It got worse after I had cataracts removed this year.

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lindalou5

I recently was diagnosed with Macular edema, which the Eye specialist said was from the combo of diabetes and the CLL. I now am getting shots in the eyes with a drug that is or was used for colon cancer. The blood vessels in the back of eyes are leaking and the medicine is for strengthening them. Have had only the left eye done once, but the doc says that it will likely take three injections in each to get it under control. I have had dry eye syndrome for many years and had no problem like this until after starting ib and my white count soared to over 700,000+.

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Jooby59
Jooby59
in reply to lindalou5

Ouch that sounds painful. Hope it gets better soon. I too, have high WBC although not as high as yours!

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Peasblossom

I have diabetic retinopathy (which is the same thing as you, leaky blood vessels in the eyes) and 5 years since my CLL diagnosis. I am being treated with Eylea injections, in both eyes, alternately. I am due to have my 15th next Friday, with another three to follow in this course. Not enjoyable, of course, but after being told in August 2018 that I couldn't drive any more, my vision has improved enough for me to have my license back a little over a year later, so it has been worth it.

I wonder how many people with similar vision issues have been tested for retinopathy?

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lindalou5

I am very anxious to be able to drive again and not have to depend on others so much.

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Peasblossom

Yes, I understand. It has been a huge shock to my life, being unable to drive and without access to any other transport, except for the local community voluntary services. The loss of independence is horrible.

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Peasblossom

Hopefully, your treatment will work. I hope your ophthalmologists are advising you correctly. One of my consultants said they only test vision in individual eyes, not binocular vision, which is what you need for driving. Also, they don't test your peripheral vision. When I reapplied for my license, DVLA sent me to see their own approved optician to do those tests.

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lindalou5

so is your vision impaired in the center or peripheral. Mine is center vision and there is no way that I could see good enough drive yet. Did you have a problem with lights and sunshine?

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Peasblossom

It is my central vision (visual acuity) that is affected, so I struggle to see fine detail, especially close-up, but after a year of treatment, my overall vision meets the requirements for driving in the UK. I have never liked excessively bright lights and sunshine, but I don't think that's related to a medical condition. It may be why they call me Gizmo, though.

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lindalou5

My father also had CLL. he was fortunate that he had some genetic power-as well as my grandmother-his mom-so they never needed treatment and lived many years (dad over 30 yrs) without any treatment. I remember that he had terrible problem with watering eyes. So I think it definitely has some connection with the CLL. You give me hope with the shots and outcome. I have some webby floaters in the one eye that got the first shot-is that something that is common or to be concerned about.

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Peasblossom

I do get small black floaters associated with the injections, but you get used to them, and they're not that bad. I wouldn't call them 'webby', though, and they do go. Eventually.

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Madlily

I am on Ibrutinib and also have dry eye. As well as the drops prescribed by my doctor the nurse told me to steep a camomile teabag in one litre of warm water and then bathe my eyes regularly throughout the day. Camomile, or Manzanilla as it is in Spain, where I live, is used here for a multitude of medicinal purposes

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Jooby59
Jooby59
in reply to Madlily

Oh that's definitely worth a try - I have chamomile teabags in cupboard. It will be a good use of them as I dont like to drink it 😂

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Robbob71

Hi

I have not had blurred vision but have had watering eyes since being diagnosed

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Jooby59
Jooby59
in reply to Robbob71

It's funny but in the 18 months prior to being diagnosed (no one knew what was wrong with me - I just felt permanently unwell) I suffered really badly with watering eyes. That has passed to be replaced with dry eys 🙈

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HappyCatUK

I too have had problems with dry eye , MGD and blepharitis on and off fairly frequently for a few years. I used the various drops, gels, wipes and heated masks recommended by my optician, which all helped. However, about a year ago I had to see my GP about another issue, and at that time I was having quite a bad episode with one eye, so that it was very noticeable. After discussing the reason I had gone in to see her she commented on my eye and said she also had that condition. She recommended all the same things as my optician, but then said I should be taking Omega 3 supplements as well. Although I am sceptical about taking supplements I decided to follow her advice. I have to say I have not experienced any eye problems since that last episode a year ago. Of course, the ever-sceptical voice in my head tells me it may be nothing to do with the Omega 3, but I haven't done anything else different that I think would affect my eyes, so it appears to have worked for me and, on that basis I will continue to take it.

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Jooby59
Jooby59
in reply to HappyCatUK

I will keep that in mind if things dont improve. If it works for you then dont over think it - just keep taking them! x

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hazelton
hazelton
in reply to HappyCatUK

Omega 3 is contraindicated if you are taking ibrutinib - you may not be taking it but for future info.

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HappyCatUK
HappyCatUK
in reply to hazelton

Thank you, I'm still W & W at the moment, but that is good for me and others to know for the future.

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Miller1960

Thank you for this post. My eyes went blurry days after I started Ibrutinib. Had my prescription changed in April and started Ibrutinib in May within a month of my new glasses my vision became blurred. After a month on Ibrutinib I had another eye exam and my whole prescription had to be changed.

I'm settling in now but do experience dry and irritated eyes,its a puzzle as its not a talked about side effect!I definitely lost vision.

Chris

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Jooby59
Jooby59
in reply to Miller1960

Yes that's why I put up original post to see if others suffered and it seems like they do! The information given to me when prescribed Ibrutinib was "basic" and without this site I would be at a loss. I will be returning to opticians to get my eyes checked again. Hope your eyes improve and you keep getting better!

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kavidacat

I am seven years in watch and wait and my eyesight gas deteriorated. I was diagnosed with Macular Degeneration when I went for my assessment for cateracts!

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Jooby59
Jooby59
in reply to kavidacat

Ooo that's rotten for you. My father had that but was treated with injections into his eyes which really helped. Good luck. x

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JackieMcC

I put drops of castor oil in my eyes every night which helps with dryness; I need to have a cataract removed in my left eye next month and my eye specialist has said that after approx 4 weeks I'll be able to continue with the castor oil. I make sure to use organic, cold-pressed oil of the best quality.

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lumdor

Had/have vision problems & dry eyes with Ibrutinib, Duvelosib & Venetoclax... ‘nature of the chemo beasts’?

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Wetumpka

I have the same problems with blurry vision. Went for 7 yrsand eyesight worsened and eyes became became burnt and itchy. My eye doctor said problem was membrane developed ov cataract surgery, and I need to use drops 4 times a day and return to ophthalmologist for a laser treatment in each eye, not on same day. He said this is very common after cataract surgery, and the laser and drops take care of problems. I have researched this, and it all seems to be true. I have my first laser shot Nov, 1. My eye doctor feels that I will be back to 20/20 again. I am not on therapy for CLL.

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vog292

Aside from this specific problem, it may be useful to get information (by medics or in internet} about exercises for the eyes. The muscles operating the eyes and the surrounding facial zone may benefit from exercising the eyes. I use a simple exercise in which I look to the far left, far right and different directions WITHOUT moving the head. It seems to relax and stretch the involved musles and generate some additional circulation and oxygenation.

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lumdor

Let’s face it... if ‘we’ were told of the actual side effects of oral chemo, I for one would think long & hard. And you?

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Jooby59
Jooby59
in reply to lumdor

I would have liked the option of knowing, in greater detail, of what I was in for when taking Ibrutinib. For one thing I had no idea I would be taking Alluprinol and antibiotics every day as well - along with their contra-indications as well. I personally would have appreciated a booklet setting out clearly what I could expect well ahead of getting the various pills from the pharmacy!

Forewarned is forearmed 😊

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karenrge

you having problems with your balance? headaches when you are trying to do computer or concentrating

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Jooby59
Jooby59
in reply to karenrge

No, so far at least, I haven't had either of those!

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karenrge
karenrge
in reply to Jooby59

My husband has Cll. he had some blurred vision, eye specialist couldn't find anything wrong but he had other problems too.

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narl

I haven’t read all your replies yet but I have had a lot of trouble with my eyes not from CLL since I’ve had it since 2005 but I thought it was from the allopurinol they were giving me since they started me on Ibrutrinib in February. I stop the allopurinol in September 1 because I thought I had taken it six months and that was supposed to be all I took it for my numbers were low but now I have gout. I’ve never had gout in my life my eyes got better. I kept getting styes and things I’ve never had in my life before. Plus just feeling a lot of itching and burning in them. I still feel allopurinol has caused a lot of my problems and I’m wondering if I’m going to take that forever now also since when I stopped it I got gout. They ignored it at first but my foot doctor said for them to check my uric acid again and when they did it was high.

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Jooby59
Jooby59
in reply to narl

Poor you - hope it improves soon. My blurred vision started before I commenced treatment so I don't think it is medicine related.

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narl
narl
in reply to Jooby59

That’s good because I have found the doctors really don’t like to admit things are medicine related.

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lumdor

I have been on allopurinol for over 2 years (3 pills/day)... without any side effects. I have had problems w/the oral chemo.

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Jemorgen

Hmmm seems like a running theme. However I believe it may be more a CLL issue than ibrutinib. I was diagnosed with dry eyes and my eyeball was sticking to my lid every night then ripping off in the morning. This was a year before I was diagnosed with CLL/SLL. The periodic blurred vision is also an issue - since then, during W&W, and now during treatment with BR.

I use gel drops at night which are very helpful. I use a make up eye primer during the day which helps with the blepharitis. I really appreciate the suggestions others have made, particularly Panz.

I’m not sure how to manage the ever-changing prescription. I’m glad (in a funny sort of way) to hear others have the same issue as I was thinking it was my optometrist or the company making the glasses. Guess I’ll have to cut them some slack.

Thank you Jooby, for the post and rich discussion.

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Jooby59
Jooby59
in reply to Jemorgen

I have had so much help and learned so much from everyone’s posts - I think this was a subject that hadn’t really been discussed much before. Hope all your problems improve. X

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GrapeGrower1

Sjogren's syntrome is common in people with CLL. Newdawn is an expert on this subject and there are several threads related to this. I have not been diagnosed but have all the symptoms. Dry eyes, dry mouth and dry nose. My saline eye drops and my bottle of water are always on my night stand. In the winter it gets severe. We're going to expand our business to Florida where we can spend a couple months of the cold dry weather in the warm and humid.

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