Has Anyone Else Had This Problem With Their Eyes?

I am on W&W but I have one reoccurring problem. The skin around my eyes gets red and itchy and swollen and wrinkled. The only thing that will get rid of it is a few days on prednisone. At it's extreme the area around my eyes looks like I am 100 years old when this flares up. The area is dry and flaky. Not a good look. This has only started recently over the past year. I take good care of myself and this is REALLY annoying. I would give anything to know why I get this and how I keep from getting it. I have put protective covers on all of my pillows etc. Doc's really don't want to give me the prednisone which always brings relief. Anyone else out there get this?

16 Replies

  • Kathy

    Have the medics any idea what it is?

    Obviously with a low immune system it's common to get conjunctivitis and other infections but you describe some pretty unusual symptoms.


  • Hi Kathy, interestingly this is the very first symptom I had just before my CLL dx. I can't be sure it's connected of course, we never can be totally sure but I'll share with you how I've dealt with it (though my eyes don't sound as badly affected as yours).

    If your doctor has ruled out psoriasis and dermatitis as the cause, it might be worth treating your eyelids with less severe methods which my optician recommended. Dry, sore, red and flaky eyelids are sometimes caused by blepharitis. Minute organisms get into the eyelids and it's important to gently clean your eyelids each morning with a cotton wool bud and either bought preparations from the chemist or simply a drop of baby shampoo in a bowl of previously boiled water which has been allowed to cool.

    Sometimes blepharitis also causes a dry eye condition which strangely can cause your eyes to be runny which seems a contradiction in terms. I use hydrating eydrops occasionally when my eyes feel dry or gritty.

    I can absolutely understand your doctor being reluctant to continue with prednisolone however because of the side effects associated with long term steroid use.

    My optician said that people often resort to extreme means when gentle cleaning of the eyelids each morning can ease the problem massively. Obviously I can't possibly know if there's a more specific medical reason but it's worth a try. Good luck!

    Oh and a tip for calming redness and swelling under the eyes (works when you've had a heavy night too) is laying down and putting cooled down teabags under the eyes as soothers. Not scented herbal ones obviously!


  • Hi Newdawn,

    Thanks so much for your detailed reply. Your kindness is much appreciated. So I was just diagnosed with CLL and this condition with my eye preceded that diagnosis by about a year. I have started cleaning my eye area in the morning as you describe and am being super careful to wash hands etc. just like we have always been told but now I never miss. This must have something to do with a supressed immune system which I am going to address by improving my diet starting today with raw organic fruit and vegitables. I have also been reading it might be due to some resistant bacteria which could be lurking in my blood also due to an supressed immune system. Thanks for your reply. I am so grateful and humbled by this communities willingness to help each other.

    :) Kathy

  • Hi Newdawn,

    I wear contacts and have changed my contact solution to a better more natural one called Bio True and use sterile wetting drops to put my contacts in every day. I also change my contacts more frequently. All of this has helped the condition improve. Symptoms have gone away with this care. Thank goodness.


  • I've had all those symptoms, Newdawn. Cleaning does seem to help.



  • Newdawn

    What a great site this is for knowledge and experience!

    You never cease to amaze lol

    Any idea of the winning numbers on the lottery?


  • Oh Geoff if I knew all the answers I wouldn't be sat here with a bad chest infection waiting for the doctor to call! :-(

    But good luck with the lottery! :-)


  • Hope you're feeling better soon Newdawn.

  • Thanks Peggy,

    Newdawn x

  • Hope you are feeling better Newdawn .

    I have just read your post .We certainly get variety with this disease .Every day is different .

    At the moment I am nursing a painful lump on my shin .I dropped the shower bottle whist showering .More bruises just as I had started to wear skirts instead of trousers .


  • Hope you feel better


  • Kathy,

    Since all CLL patients are 8x more susceptible to skin cancer we are encouraged to find a dermatologist/oncologist (skin cancer specialist not a "beauty" dermatologist) for regular full body scans (annual or every 6 months). If you don't have one already, you may want to start searching now. If they are in the same hospital system and/or connected to your CLL specialist it makes coordination easier.

    That dermatologist might suggest some of the steroid creams like Triamcinolone or Fluocinonide instead of prednisone, if they believe your skin problem is an autoimmune reaction like my eczema / psoriasis. Once my flair ups are under control, I can maintain things with a daily moisturizer like CeraVe.

    Many of us have auto-immune problems that started just before or after our CLL diagnosis and wax and wane from various causes. There are many auto-immune problems that are dangerous and life threatening, and CLL seems to be at the scene of the crime, but it is difficult to prove a direct connection for many of our doctors. I am thankful that mine are on the outside where a skin cream is effective.



  • This is quite spooky seeing this post, last night my left eye was a bit puffy and when I woke up this morning it's swollen, red, not too itchy though. I do take antihistamines as I can suffer from hayfever, but the pollen count is not high today, was wondering if it was an allergy of some sort and that I should maybe get my antihistamines changed?, maybe it's got nothing to do with that, CLL sure confuses life (me anyway) 😕

  • Thanks for your good wishes everyone, I'm now on antibiotics and hopeful that they will get me back on track soon. Reading prosecco's post above has probably prompted this response.

    I certainly don't mean to hijack Kathy's post but it occurs to me from what she says and the response from others that one the biggest problems we CLL'ers face is knowing when a health problem could be related to the cancer and when to seek help. Conditions that we'd simply take in our stride can take on a different significance because these errant lymphocytes get everywhere and our response can be unpredictable. I realise that sounds very scientifically simplistic but my brain isn't as sharp as it should be at the moment! :-(

    I started with a cold about 11/12 days ago and assumed it was a fairly typical viral cold with all the usual symptoms. So I made a decision not to seek medical help but simply to treat as a cold and watch temp, b/p and blood glucose levels. It proved to be a stubborn cold but more irritating than hazardous. Then I woke with the tell tale signs of a chest infection...that tight, breathless feeling and start of a persistent cough. And I felt annoyed with myself for allowing a secondary infection to develop. But should we react to every cold as a serious threat? I'm pretty sure my GP wouldn't be impressed.

    But as with conditions like sore eyes, bumps and cuts etc. it's often so difficult to know when to react for fear of over-reacting and UK'ers will know that GP services can be difficult to access immediately for appointments.

    So I'm not sure if I could have 'headed this off at the pass' but may react more conservatively next time I have a bad cold. Maybe CLL'ers can't afford to play the 'brave hero' card so easily.

    Best wishes everyone.


  • Thanks all. I went to a doctor of the eye and he said come back when the symptoms are really evident. You are all correct hard to tell what is CLL related which is what my doc said too. I just want to make sure this is not something serious. I quite love my vision. Doesn't seem fair sometimes having so many challenges at the same time. If we figure it out I will post results.

  • I have had exactly the same problem and empathize completely with your frustrations. My problem with my eyes has been on and off for 6 months. Each time it comes either without warning or is signalled by an itch. I have spent a lot of money at the hospital eye department and have tried many prescribed and over the counter medications. All provide relief but only in the short term and the doctors have told me it's not connected to my CLL, but an allergy. Washing my eyes hasn't really helped as I do this anyway. However, drinking much more water has had some effect. I am seeing an allergist today. If I get any useful feedback, I will post it on here in case it is helpful to anyone.

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