Apologies for my absence :(

[TreyBon64]

Hi everyone. I'm so sorry I've not been about as much as I used to. I've just been rather busy with one thing and another. I still haven't been for my follow up appointment with the ophthalmologist, it keeps getting put back for one reason or another. I will always have poor vision now and coming off placquinel hasn't improved the vision but as far as I know I have no more snake like floaters. Which is good in one way.

I do read all the posts ... It may take me a while sometimes but I get there. I don't always post as I only will if I have a direct experience.

Hope you are all keeping as well as can be expected given the situation and I'll try to keep up to date with the posts.

[MaryF Administrator]

Nice to hear from you. MaryFx

[Lure2]

I agree with Mary! Hope you get to your Eye-doctor. Sometimes it is not anything wrong with the eyes but it has to do with the brain (was so for me and the right unticoagulation made the symptoms go away) Important though to do cheque-ups I have heard so it is not anything else.

Good luck from Kerstin in Stockholm

[TreyBon64]

How I wish a change of medication or dose would help but it won't Kerstin. I have a form of macular degeneration and the appointment with the ophthalmologist is to see if it has got any worse from the last pictures that were taken. Thank you for your support, it is very much appreciated.

[Lure2]

Oh I see. I have heard you say this before but we are so many and you know our memory is not the best Sorry for that.

Does the macular degeneration and the "snakes" go with Hughes? I am sure that you have the best doctor there is on this illness. Hope for a positive change. Can you read? Kerstin

[Hidden]

And I'm guessing Plaquenil was responsible? I did wonder how safe Plaquenil *really* is, particularly if someone has a known eye disorder. Is this something doctors ought to take into account when prescribing? x

[TreyBon64 in reply to Hidden]

I was on placquinel since the day I was diagnosed with rheumatoid arthritis (about 7yrs ago). I started with vision disturbances 12 mths or so ago. The macular degeneration is due to a hereditary problem, my sister has the same problem in her left eye; mine is in my right. The 'snake' floaters may or may not have been caused by placquinel. I was taken off it as a precaution. I really would have preferred to stay on it but I couldn't.

[MaryF Administrator]

My daughter 17 is in maximum dose of Plaquenil and takes this daily, I know you have to have regular eye checks but all good so far. MaryF

[Lure2]

Hi there, Have you left the Delphines? Enjoy!!! Kerstin

[Hidden]

Hi

Thank you both, APsnotFab & MaryF for the reassurance.

It's good to hear it.

x x

[overnighthearingloss]

I was on plaquenil a few years back. Always on a low dose according to the doctors I see. 200mg. But whilst I was on it I had bilateral retinal haemorrhages. Connection? - I dont know. But never had anything similar since I stopped taking it. I was also on Azathioprine at the time.

It took a visit to Moorfields eye hospital to get a diagnosis. Everyone else was giving me a clean bill of eye health even though I had excruciating migraine type pains behind the eyes for ages.

It was a very scary time that I hope nobody else has to suffer.

[TreyBon64 in reply to overnighthearingloss]

I'm on medication now to try and ease the debilitating migraines I suffer. They were so bad I was having tests and scans to rule out a tumour or MS. The migraines came with pain behind my right eye ... the one I am losing my sight in. There is still so much about APS that isn't known and each individual has a unique 'set' of symptoms and problems. All we can do is support each other and hope one day we can live a life a little more normal than we do now.

[overnighthearingloss in reply to TreyBon64]

Unbeknown to me at the time of my eye pain, my kidneys were also on a downward slide and my blood pressure was also not very well controlled so get these things checked as well. If you have access to an eye hospital anywhere it might be worth a visit to their A&E.

Opticians gave me a completely clear bill of eye health just a day or so before I attended the eye hospital. They have much more experienced staff and better ways of checking.

[TreyBon64 in reply to overnighthearingloss]

I've already been diagnosed at the eye hospital. I'm waiting for my review apot so they can check if stabilised or any further damage. My bp is normal and my kidney function is checked every 6 to 8 weeks along with my liver function and full blood count as I am currently on weekly methotrexate injections.

[overnighthearingloss in reply to TreyBon64]

Sorry i had only skim read and missed that you were attending an ophthalmologist. I hope you have managed to halt any further damage.

Not intending to be stalky but i looked at some of your other postings.

I know you have indicated that your kidneys etc are being watched but i did have a renal crisis. I firmly believe that I got things back under control by making dietary changes. I didnt fully realise what I was doing at the time but I followed a diet with a preponderance of alkaline foods. Not an exclusion diet but eating a greater part of alkaline foods instead of acid forming foods.

I believe that helped my kidneys recover somewhat and when that occurred some of the other nastier symptoms I was experiencing eased.

I am not suggesting that you undertake widescale changes yourself but do a google search for alkaline diets and see if anything seems to make any sense to you.

[Hidden in reply to overnighthearingloss]

"I was on plaquenil a few years back. Always on a low dose according to the doctors I see. 200mg. But whilst I was on it I had bilateral retinal haemorrhages. Connection? - I dont know. But never had anything similar since I stopped taking it. I was also on Azathioprine at the time."

What are the other autoimmune conditions do you have other than APS if it's okay to ask this?

Which consultant / hospital are you under? If this was caused by drugs then it must be reported appropriately. Sounds so scary!! x

[overnighthearingloss in reply to Hidden]

I dont think it is as easy as just blaming one organisation/individual. Even when you attend one centre you are often seen by different doctors and things get missed without seeing a regular person.

At that time I was diagnosed with sle lupus, scleroderma/raynauds, pbc and mctd. I had not been diagnosed with the whole sticky blood stuff at the time. I have also picked up a vasculitis diagnosis since and now still have kidney impairment. I was also on plaquenil but also lots of other stuff when I lost my hearing totally in one ear overnight.

Also its quite difficult to be precise about a particular drugs effects/side effects.

I now try to keep some sort of record now about how I am feeling/my symptoms before starting/stopping any drugs or changing dosage.

[Lure2]

Hi, Can I ask what anticoagulationdrug you are on for your APS? Even if you have this macular degeneration which has nothing to do with APS, many of us have remarkable symtoms from the brain (Eye, ears etc).

Best wishes from Kerstin

[TreyBon64 in reply to Lure2]

I'm on Sinthrome (Aconenumarol) my range is 2.5 - 3.5 and the other day when I had a migraine that I'd had for 2 days I discovered my INR was 2.2 . Within 2hrs of taking the extra anticoagulant dose my migraine had gone.

[Lure2]

Hi TreyBond again,

I ask because for me the right anticoagulation has meant everything. It is so important to feel "safe" and well anticoagulated. It sounds that you also have an Coagucheque - machine as you say you "discovered" you had only 2.2.

That is good and now I hope your next visit to the ofthalmologist (difficult to get correct spelling) will show an improvment. I have known people people with this illness. Good luck with Everything!

Kerstin

[TreyBon64 in reply to Lure2]

I attend a clinic at my local hospital every couple of weeks or so. I would prefer to self test but I don't think it's available in my area.

Thanks for the support Kerstin