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Has anyone used contact lenses whilst immune suppressed?

(24 Posts)
ConsiderIt Sat 21-Oct-17 12:15:53

Or do I need to go out and buy some glasses to wear for a bit?

Dizzywizz Sat 21-Oct-17 12:18:31

I have ms and am on a drug which was initially thought to be immunosuppressive, however nothing was mentioned about lenses (which I wear). What makes you think it would be a problem?

Judashascomeintosomemoney Sat 21-Oct-17 12:27:23

Watching with interest as DH has and it was never mentioned to him that it was an issue.

MrsJBaptiste Sat 21-Oct-17 12:32:09

I've been on immunosuppresants for around 8 years and have never been told I can't wear my contact lenses. I have glasses too but wear my lenses for 12 hours a day (7-7)

ConsiderIt Sat 21-Oct-17 14:59:12

Funnily enough it's an MS treatment I refer to (Campath) which is supposed to wipe out the immune system and rebuild it.

There are so many variable forums about medical advice regarding post-chemo diet and medication, which makes the advice seem a bit of postcode lottery for some areas.

I asked my optician a year ago and she told me to be on the safe side, but she'd never heard of the treatment so was just erring on the side of caution. If it's not necessary I don't want to do it!

The optician seemed to think you need a fully fledged immune system to be a safe contact lens user but may have just been her opinion, so thought I'd as around.

Toddlerteaplease Sat 21-Oct-17 15:21:51

I had Campath and am a peadiatric nurse. I went back to work after two weeks, surrounded by snotty kids and never caught so much as a cold. Wearing contacts was never mentioned when I was given all the advice about it, and my team were very thorough as it was new to them. Good luck with it.

ConsiderIt Sat 21-Oct-17 15:25:34

Oh that is fantastic then. No need to even think about it any further! I wish I hadn't asked the optician now, they must've just been too scared to take a 'risk'.

Toddlerteaplease Sat 21-Oct-17 16:47:58

Is it your first round? I was really disappointed with round one. But I’ve never been better 10 months post round two.

BeyondNoone Sat 21-Oct-17 16:54:11

Yep, been on immunosuppressive drugs for years with contacts. Not only do I wear them, but I have continuous wear and often forget to change them as often as I should. By rights, I should have no eyes! grin

ConsiderIt Sat 21-Oct-17 21:42:06

Why were you disappointed with round one, if you don't mind me asking? I've heard of people relapsing between round 1&2, and that it's not considered a complete treatment until it's all finished.

ConsiderIt Sat 21-Oct-17 21:44:00

By the way, I'm amazed you went back to work so soon. I've read all sorts of stuff about staying out of crowds (anyone who is within 3 ft away is counted as a crowd) for 12 weeks, so no cinema, bonfire night displays or Christmas Carols if you have it this time of year!

Toddlerteaplease Sat 21-Oct-17 21:58:36

I was disappointed because it was sold to me as a bit of a miracle and people were not needing their sticks etc, I didn’t notice any improvement from it at all and was still on crutches. (Still managing to work full time and 13 hour shifts though, but only just and because I am stubborn and love my job) I felt quite wiped out for about 3 weeks afterwards but was ok to go back to work. Just made sure I avoided stuff like chickenpox.

Toddlerteaplease Sat 21-Oct-17 21:59:31

I was never told to stay away from crowds.

ConsiderIt Sat 21-Oct-17 22:28:56

It may be that advice was tailor made for someone who had a particularly low blood count, without them even knowing! There a lot of advice about listeria diet, but may people are covered with antibiotics instead, so the advice may be a postcode lottery a bit.

I'm impressed you managed 13 hour shifts though! I've done them myself and know how gruelling they can be.

I gather the positive reports are more in relation to being rewarded a long time down the road rather than straight away, but for me the idea of halting further progression is worth it's weight in gold. Though if I'm honest I'm secretly hoping to be able to put my crutches away eventually too!

Toddlerteaplease Sat 21-Oct-17 22:44:06

I did get rid of my crutches about 6 weeks after round two, used them a couple of times over the summer when I usually struggle but not since. I was only the third person to have it at my hospital and the first woman so They were very thorough. The thing they were most emphatic about was the listeria diet. With hindsight I don’t know how I managed to stay working full time, but I think enjoying my job makes a huge difference.

Toddlerteaplease Sat 21-Oct-17 22:44:43

I got a month of antivirals

Ollivander84 Sat 21-Oct-17 22:46:01

I'm severely neutropenic so high risk of infection/neutropenic sepsis and wear lenses. Also work FT, don't avoid crowds etc. Or wash fruit, much to my consultants dismay. Also have a horse and a cat grinblush

I do wash hands before lenses and use disposable ones

ConsiderIt Sat 21-Oct-17 23:12:38

Has the neutropenia lasted a long time for you? It's nice to know you also could continue to wear the contacts ok. I'm surprised you weren't advised to stay away from people a bit though!

ConsiderIt Sat 21-Oct-17 23:14:42

Toddler was your listeria diet one month before and 3 after?

Ollivander84 Sat 21-Oct-17 23:27:39

I was diagnosed in 2015 but they suspect I've had it for 8 years before that. It is likely to be lifelong now so I see my haematologist every 12 weeks smile

Toddlerteaplease Sun 22-Oct-17 09:00:49

It was just after. No one said anything about doing it before. They were a bit twitched about it as someone has died of listeria meningitis recently. Are you going to be an inpatient or day? I was inpatient for the first round, which was a waste of a bed, and day second time.

ConsiderIt Sun 22-Oct-17 13:32:43

It's usually day patient unless otherwise indicated at my local hospital. In the beginning they had routine inpatients but found it almost impossible to achieve with the current bed crisis. Plus most people prefer to go home to their own beds each day. I've got mixed feelings as I have young children and find the witching hour hard enough as it is, not sure how I'd cope with them after Alemtuzumab all day long.

ConsiderIt Sun 22-Oct-17 13:34:21

Wow, @Ollivander84, lifelong is pretty hardcore. Is it all a bit of a mystery to them? No wonder you've given up on washing fruit meticulously after all this time!

Ollivander84 Sun 22-Oct-17 13:39:09

I have autoimmune neutropenia smile so no cure and it's rare in adults. Produce enough neutrophils but my body kills them off and no way of stopping that

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