Uveitus

[mush56]

hi after attending A&E on sept 1st with sore right eye was told I had scratched it and antibiotic cream was given to me to use and ophthalmic dept would ring me to see it was getting better with the cream in 3-4 days , they rang and it was or seemed to be getting better but it was like looking through steamed up glasses . I decided to ring the ophthalmic dept hoping I didn’t have to go through A&E again , they gave me an appointment for that day . I was told I have Uveitus and had it for a while I hadn’t had a scratch across my eye . Needed 2 lots of eye drops and needed to go back a week later , saw different dr and he told me it was rare for a person of my age to get this was usually young people that get it . And need to go back 10 days later to see a different dr on the 13th Oct . Told it can be dangerous. I told him I have CLL and in the middle of having treatment but he didn’t seem to have herd of it which I wasn’t surprised but after looking it up it can be because of lymphoma or Leukaemia . Has any one else got this , I will ask my consultant if it is to do with my CLL sorry long and drawn out .

[lankisterguy Volunteer]

Hi mush56,

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Whenever I deal with any medical professionals (especially the nurses or staff that is taking my vitals & entering info at the start of an appointment) I mention that I am immune compromised and will appreciate their following strict hygiene guidelines.

(This is especially true with dental, optometry, ophthalmology and dermatology staff. Those specialties don't always review or understand my full medical file before starting an appointment. )

Many of them will enter "immune compromised" with the other data they are putting in to their computer. Some will ask what is the cause of the immune problem and I usually explain CLL if they are not familiar with the terms.

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Simply put: CLL has degraded our immune system, so we are more susceptible to any infections anywhere on our bodies, and tiny injuries, scratches, etc. can develop into a more serious infection. So masking, sanitizing the surfaces and tools, and being aware of any minor signs of infections is important.

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Len

[sookieny]

I got Uveitis two years ago. My ophthalmologist said it could be a side affect of the Imbruvica or from having Covid, no way to tell. Thankfully, it has been arrested, but I still see the Dr every 6 months for an eye exam.

[mush56]

thank you for your info will ask again on the 13th see what they say if they think it’s connected to CLL

[neurodervish]

I find it easier to give medical staff a highlighted printout with relevant info. It saves time. "Leukemia can sometimes cause uveitis. According to a 2021 paper, there are at least three ways in which leukemia may affect a person's eye: cancerous leukocytes can directly enter into the tissues of the eye. leukemia may cause dysfunctions of the blood, which can, in turn, lead to problems with the retina." Aug 4, 2023 medicalnewstoday.com/articl...

According to CLL Specialist Dr. Nicole Lamanna, If you combine all blood cancers together, they add up to only 4 or 5 percent of total cancers. CLL may be the most common blood cancer, but it's still very uncommon compared to all the other types of cancer. So it's probably not reasonable to expect medical staff to know much about CLL. From CLL The Basics: youtu.be/vn_n3krfGug?t=40(Not working as expected?)

This is your health and safety at risk, so you really need to advocate for yourself. When you say you "need to go back 10 days later to see a different dr on the 13th Oct" is that another ophthalmologist or a CLL specialist? I sincerely hope you can consult a CLL specialist about this, especially since you're currently undergoing treatment for CLL.

It would really help if you could update your bio. I dug thru your posts trying to see what treatment you're on and what your genetic markers are. It sounds like you're 11q 22 -q23 and have had several treatments. All that info can help us help you.

[mush56 in reply to neurodervish]

-11q had FCR in 2016/2017 I was on ventoclax had ramped up to 400mg and had first infusion of retuximab but have been so poorly I have stopped it I’m taking a few months out and have referred back to Clatterbridge cancer hospital after going to Blackpool for a few months ( advised to be nearer home as needed to be at the hospital 3 days a week for first 5 weeks ) worst mistake as didn’t have a CLL consultant . So I’m going back to being under Professor Andrew Pettitte at Liverpool . Blackpool hospital was a very bad move they have no idea .

[neurodervish in reply to mush56]

Thanks for sharing this info. You've really been thru the wars!

If I may add, what I'm referring to, when suggesting you update your bio, is to go into your profile settings and update it there. Otherwise, info about your health history will be buried in your older posts, making it difficult for forum members to find. Here's a screenshot of how to do this. (I cobbled together a pic of your public profile, along with photoshopped pic of my own profile page. ) If you need any tech help, just say the word and I'd be happy to walk you thru the steps. I hope this helps.

How to update your HU profile

[mush56 in reply to neurodervish]

I have never asked about genetic markers I just know I’m -11q they thought it had mutated !! I now have a mass in my stomach . I will ask for my genetic markers when I go to Liverpool and see my consultant . Thank you

[neurodervish in reply to mush56]

11q is a genetic marker. You might ask them for a printout from your Liverpool doctor, just to keep all your health info organized.

[SofiaDeo]

Could this be a repeat of what you had 8 years ago? Also a others have mentioned, we need to be super careful of infecting our eyes. Have you ever had shingles, or EBV or another virus that might cause eye problems? If you have the one that "young people" get, I wonder if it's due to our immunity being compromised. Like, we are now susceptible as we were when 5-6 years old before our immune system developed fully.

aao.org/eye-health/diseases...