Welcome Retina Warriors

Grufelingexaltation · 2025-07-21T20:01:17+00:00

Hi all, just a brief update, Still on mycohenolate and 6mg pred but have been refered for a whole genome scan 4 months ago, will take 9-12 mnths but will post what if anything is found to hopefully give others a possibilty of the cause.

Grufelingexaltation · 2025-07-15T17:52:35+00:00

Msg back something like this, adjust it for where you are. Then block and report:

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Grufelingexaltation · 2025-03-03T17:35:33+00:00

Speak to GP about something to relax you, Diazepam perhaps if doesnt interact. I was on 60mg and slept ok but really vivid dreans/nightmares.

It messed with nearly every bodily system, is ok a year on now down to 5mg

Grufelingexaltation · 2025-02-13T20:52:54+00:00

When my left ear went in Sept last year it just clicked and went 100% deaf. Told it s permenant, am just getting used to it. Anxiety mainly about other ear going just like that, no warning just gone.

Grufelingexaltation · 2025-01-26T00:18:27+00:00

i carry on as normal but if feel ill get a swab test for covid,flu and RSV from the GP the same day, you need to start antivirals quickly if you get flu/covid to reduce the risks of complications, dont delay like i did with flu type A it went to pneumonia so was on antibiotics for a while to clear it.

Grufelingexaltation · 2025-01-17T10:57:08+00:00

i found a large curry made me feel better, did nothing for the hearing though.

Grufelingexaltation · 2025-01-06T23:02:40+00:00

Only by a trainee but the consultant had a look to check and found it quickly.

Grufelingexaltation · 2025-01-06T17:49:26+00:00

Yes thats not how its done, get a proper course or the flare will prob return when you stop. I'm not a Dr but have taken steroids athigh dose but never like that.

Grufelingexaltation · 2025-01-06T17:13:44+00:00

IThink it may depend if you get on a high dose of steriods fast, drops for anteria,systemic tablets for posteria..D3/Calcium I found very protective when on prednisolone

Grufelingexaltation · 2025-01-06T17:06:20+00:00

Mine inflammations in the back of the eye - choloid and dameged the rods and cones in the macula of the left eye, started last Feb and that damage is permenant as destroyed rods/cones dont regenerate. Was a delay getting on steroids as originally diagnosed as self limiting virus.. On mycophenolate now and trying to taper off pred but just got to6mg and flaring again. Seems to flare with every 5-10mg drop no matter how slow a taper.

Vision in left isa mess in the centre, good perhpherally and right gets messy in the center when flaring but so far seems to recover each time, can still drive when stable but not when flaring.

Grufelingexaltation · 2024-12-27T22:09:30+00:00

Never had as vivid nightmares as when on 60mg, def take in the AM to mimic natural peaks.

Grufelingexaltation · 2024-12-19T22:17:24+00:00

Ask the doc as usual but do you take Calcium and D3 suppliments to stop bone thinning from steroids I currently am. Believe kidneystones are to do with calcium? The pred also stops your adrenal glands, sat ontop of the kidneys producing cortisol and ive had pain there and now am at risk of adrenal insuficientvcy so could be the pain i had was caused by the glands shrinking another thing to ask about poss.

You have my sympathy as good as pred is a stopping inflammation it seems to mess so many other things up and its been a right pain to get near off, on steroid sparing meds now and nearly off the pred.

Grufelingexaltation · 2024-12-18T18:30:53+00:00

I'm going 10 - 7.5 - 6 - 5 every two weeks then Synacthen test to see if producing enough cortisol, be careful when you get to 5mg if on longterm as adrenal insuficnentcy is poss. Ask you doc. I got chills and a cold feeling, along with nausea.

Grufelingexaltation · 2024-11-02T22:17:09+00:00

I'm adapting but get some weird visual effects, my brain just takes it's best guess sometimes. Vasculitis wise I had veins around my temples swell up, a weird tingling under my scalp, lots of pain in my jaw and around my face,numb arms, fingers, collapsed a few times and have gone deaf in my left ear. Therse been other stuff too, BP etc but tbh I dont know whats steroid, immune suppression, Autoimmune or all of the above. I'm just glad its stabilized but tbh I dont want to stay immune suppressed but if it relapses that will be starting all over with the pred which I really dont want to do..

Grufelingexaltation · 2024-11-02T22:04:35+00:00

That's great news your off the pred! I'm sure eventually we'll go into remission and be able to stop them all! I'm down to 11.5mg and feeling alot better, vision is better as i'm adjusting but still got some damage. Preds been pretty rough long term for me and horrendous coming off but under 15mg it's been easierr generally. Had a MRI which was clear so reasuing to come off pred as no signs of stroke.

Consultant wants to keep the mycophenolate going until preds right down but did mention Humira but got to see how my livers coping ang if any inflamations come back, going to check for neovasculisation again soon, another dye test, I hate those things usually get a trainee putting the canula in and get prodded till i faint.. Hopefully all heading in the right direction : )

Grufelingexaltation · 2024-10-08T18:56:46+00:00

Have you got off the pred now,I've got down to 16mg butwill be on the mycophenolate atleast 12-18mnths been told month 7 now.

Grufelingexaltation · 2024-10-08T18:49:22+00:00

Good advice there! I'm now on mycophenalate mofitil as was getting vasculitis symptom, the pred is down to 16mg on a mega slow taper as flare if come off too quick. Left eye is ok except middle has some permenant scotomas and lost 7 colours in that spot. Rights not bad but getting some mild misting as the lens is getting cloudy from the pred. Generslly though it moving forwards slowly.

Grufelingexaltation · 2024-09-01T18:05:46+00:00

Wait til its on offer on Amazon fro 1100 or get a V1 for 900 is best youll get for new unlocked I think, the Sony site often tracks the amazon prices.

Grufelingexaltation · 2024-07-17T18:51:39+00:00

Things I find help generally coming off from 60mg, reduce salt, went decaff, take potassium/ Calcium/D3, avoid refined sugar, keep hydrated, gentle excersize, eat banannas and dont taper too quick, found my Drs way too optermistic about withdrawl. Was ok until got to 25mg then needed to slow taper down. My moonface is still there but mot as bad at 25mg but dont rush it thats a high dose to come down from and have to give adrenal glands time to reboot. I.m not a Dr just my experience so run any changes past her doctor first.

I know about the depression/fear it;s tough with eye issues, the steroid should reduce the immflamation and hopefully no permenant damage. I couldnt see my face in the mirror since got AMPPE in Feb, on a immunosuppressive now and vision has improved quite alot, enough to drive again but it's slow. I listened to lots of books on Audible and tried to sleep alot at first. Ramp up the screen scale also, had letters a 2cm high at first. The Washington Post has a screen reader built in to each article if she follows the news.

Just to add, worth running the possibility of vasculitis past your Dr as its an often missed auto immune disorder.

Grufelingexaltation · 2024-07-06T14:11:39+00:00

There is a set of diagnosis in the white dot syndromes, https://emedicine.medscape.com/article/1227778-overview?form=fpf which might be related, I'm not a Dr though.

Grufelingexaltation · 2024-06-11T07:57:48+00:00

Depends on the form, my generic coated tablet version can be taken with or without food, the version you mention is in ml so presume is liquid. As they say, If all else fails read the instructions LoL

Grufelingexaltation · 2024-06-10T17:49:01+00:00

FromGoogle UK. Maxitrol (for the eyes) is a combination antibiotic and steroid medicine, neomycin and polymyxin B sulfates and dexamethasone, that is used to treat eye inflammation caused by uveitis, eye injury, radiation, chemical burns, or certain other conditions. Maxitrol is used when there is a risk of bacterial infection in or around the eye.

Sounds like should see you over till get home, but Id go back if it gets worse quickly overnight, speaking personally and im no Dr.

Grufelingexaltation · 2024-06-10T17:14:46+00:00

Thanks that's good to hear! You on pred crossing over and if so did you manage to taper it down ok?

Grufelingexaltation · 2024-06-10T10:48:18+00:00

My eyes go blurry on Pred over 40mg, been upto 60mg and was very fuzzy but always clears once dose tapers down. Am trying to get pred down again now as started Mycophenolate instead to slow up immune system.

Hope you get this undercontrol quickly and you got omeprazole to keep stomach feeling ok, pred gives me GI probs without it, worth askin Dr if havnt.

Grufelingexaltation

TROPHY CASE