Why do I feel so bad?

[Wes73]

Hello. It looks like no one has posted for 6 yrs so not sure if anyone will see this.

I've had lymphoma in my eyes which has been treated with methotrexate injections and thankfully is now in remission. I have to have regular Ozurdex implants in my right eye to keep the fluid down. Although it's not a problem actually having the implant, though not pleasant, my problem is after. I don't feel well in myself for weeks after. I cannot find out why I feel like this as the only side effects listed anywhere are only for the eye itself. I wondered if anyone else has this experience after having Ozurdex.

[Koalajane]

I have an Ozurdex implant in my right eye for macular oedema. I didn’t find the injection unpleasant, in fact the first one I had I didn’t realise it had been done. I have never had any feelings of discomfort or illness.

[thom3patty]

I have not had that but wish you the best. Last year was a particularly bad year for my eyes. I had vitrectomy done in both eyes and the out come was not good. All because my dr then refused to believe my eye pressures were up and my vision was failing. He kept telling me for 2 months I needed to be patient. I finally went to Cleveland dr and this has left me legally blind. It’s changed my whole life. He is no longer with the eye place I saw him at but he has ruined several peoples eyes that I personally know of. I now have 2 Cleveland dr who are wonderful. They can’t get my vision back to what it was but they have kept my pressures low after 2 emergency surgeries. Also their goal is for my eyes not to get worse . They are great. Hope your outcome is much btter

[fed13 in reply to thom3patty]

I am so sorry for your terrifying experience!!, Mine is trivial compared with yours. I told my new and, (as described by a friend who also went there), very rude young optician, that I saw a spot in front of my left eye. She ignored me. It was in fact an early manifestation of wet Age related Macular Degeneration. Because of this I didn't get treatment as early as I might have. However it turned out in the end that the delay was not that important. I am sorry your Doctor didn't take your symptoms seriously, and also those of others. Have you reported him? Sending you a hug!

[tallyho in reply to fed13]

Sometimes we just have to trust the optician. Floaters are very common in the elderly. Did you have an OCT done at the opticians?

[fed13 in reply to tallyho]

I was referred to the eye clinic at Macclesfield hospital. I'll digress here to comment on an interesting fact. After Covid, (and during), appointments were managed much better, with people being seen more or less on time.

Before Covid the clinics were appallingly managed. We were all cooped up in over flowing waiting rooms, sometimes for hours. I had a hell of a time getting appointments in a timely manner at first, and had to write a very bitter letter of complaint. I couldn't have managed without the help of the Macular Society.

However now things have settled down, with more clinics organised, and more spacious waiting areas.

I agree with your comment that we sometimes have to trust the optician,...I recommend be vigilant!

[RosMacularSociety Partner]

Hello Wes73,

We deal with macular related eye conditions as opposed to lymphoma. However, have you contacted the medical professionals linked with both your lymphoma and the Ozurdex implants, and raised your concerns with them? It is possible to contact them via their secretaries.

Kind regards,

Macular Society helpline

macularsociety.org

[Spinningjenny21]

Dear Wes, I use methotrexate for a condition completely unrelated to my eyes. I find that it does have some side effects, but I’ve been taking it for five years now, and I’ve got used to them. It’s mostly extreme fatigue and a feeling of not being quite well. I don’t know if this will be of any help to you, but I wish you well for the future.

[tallyho]

This group is still very active so maybe it’s been muted your end? I can’t have steroids as I am a steroid responder but not heard of this before.