Temporary sight loss

[Greensleeves]

Hello my friends,

I’ve had PMR for 12 years this month. Still battling with trying to reduce Pred .

It’s been a nightmare since losing my mum and having depression.

Had to increase to 10mg last week , after a couple of weeks of dizziness and nausea , it was not unlike the start of the Adrenal crisis i had with Covid in 2020. I have had a great deal of stress .

Yesterday my sight in my good eye went for 7 to 10 minutes.

It wasn’t blackness but grey with shadows, it slowly returned to a deterioration of sight and grittiness.

rang 111 and went to A & E .

10 hours in there , had CT brain scan and bloods . I explained they will be masked somewhat by my Prednisilone, but 12 years ago I’ve never had elevated ESR or CPR anyway.

Tomorrow a day at the eye hospital and Wednesday a day of tests at the TIA clinic.

The doctors are more leaning towards TIA .

As an avoider and trying to get on with things , everything catches up with us .

Has anyone experienced this ?

Hugs to you all xx

[Fatsiajaponica]

Hello Greensleeves, so sorry that you are having to cope with this. I can't offer any advice but can empathise as recently had a similar issue, no scans etc.. but upped to 60mgs of pred and seems to have settled, eye pressure remains an issue. Eye hospital had no actual diagnosis. It is frightening, take care of yourself, others will be replying soon who have more expertise. Sending hugs and best wishes.

[Greensleeves in reply to Fatsiajaponica]

Hello Fatsiajaponica,

I’m sorry you experienced this too, I felt I should have increased the Pred, there’s definitely pressure when I lean my head forward.

I hope the pressure feeling goes for you. It’s confusing when the eye hospital can’t give an accurate diagnosis ,

The hospital doctors are leaning towards a TIA . I suppose I’ll have to wait for all the tests and hopefully get a diagnosis. I was just given 6 tablets to take immediately after the CT scan .

I haven’t moved for probably over a year, no exercise or self care. My own fault probably.

Thank you for your kindness and reply sending you hugs , wellness and best wishes xx

[guineapigharriet in reply to Greensleeves]

Take good care, and sorry about your struggle. All the very best for a positive outcome. 🌻🌻🌻

[Hidden]

Sending best wishes and get better soon x💐

[Greensleeves in reply to Hidden]

Thank you so much xx 🌷

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this .

Did they even consider GCA? Hopefully eye hospital will check for that... and please keep us informed on how things ..and good luck

6 tablets of what? and what dose?

[Greensleeves in reply to DorsetLady]

Thank you DL , I told the doctors I had PMR and GCA is a possibility,

They tagged the eye hospital appointment tomorrow as a secondary issue .

I did ask about blood results as I’ve had another uti and back to back antibiotics. I explained that could reflect liver and kidney results. They didn’t tell me anything, it’s like our results aren’t our business. Although the staff were extremely kind and I should go with the flow I suppose.

The 6 tablets began with a C , they wanted to give me aspirin , I told them I have gastritis that has bled , so these small tablets were instead of aspirin. The doctor said the name so quickly i couldn’t catch it. I will google it.

Thank you for your support and kindness as always. I’m hoping my sight returns to normal but it is what it is now.

I’ll keep you updated DL .

Take care xx

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

Clopidogrel maybe? It's an antiplatelet medicine if they thought TIA.

[Greensleeves in reply to DorsetLady]

Yes that was it DL , thank you so much for that information.

Bless you xx

[Ridge]

My heart goes out to you. What a nightmare. Hang in there and let us know how you go.

[Greensleeves in reply to Ridge]

Thank you Ridge , you’re so kind.

I’ve got the eyehospital this afternoon to check for GCA, that’s concerning me , the Stroke clinic rang yesterday, The stroke nurse changed the appointment to Thursday , she said they’re overwhelmed .

There must be many new people had potential TIA’s and Strokes over the weekend ,it’s sad for them all.

Take care, I read the group messages every morning , it’s my comfort . xx

[Raewynne]

Hi thereSo sorry to hear what's happening for you.I started on Prednisolone for Temporal Arteritis about 12 years ago too.Took 4 years to reduce the first time then had a relapse 2 years later.Still reducing .Rheumatologist is now keeping me on 5mg maintenance as the adrenals are not working and the side effects have been so severe.Glad he's on my side.

I had a TIA prior to my pred journey. It affected one eye.Made me very tired and sensitive to noise.It lasted several months.

I hope they sort you out soon.

[Greensleeves in reply to Raewynne]

Hi Raewynne,

Thank you for sharing your experience . I am sorry you have been through all of that.

It’s incredibly hard to reduce the Prednisilone when we’ve been taking it for so long and our adrenals won’t wake .

Your rheumatologist sounds good , I’m glad he understands, the side effects are awful . I’m reluctant to take steroid sparers , although I’d be willing to try Acetmara , which isn’t offered. My GP doesn’t understand quite how unwell we feel when trying to reduce when there’s nothing coming from the Adrenal glands.

I panicked last night and took another 10mg , afraid of having either condition and losing my sight. At the same time aware it could mask test results. I’m glad you recovered from the TIA , I’ve had such a bad headache and realise it could be either or both.

5mg is good if you’re able to manage on that , as long as we have some quality of life.

Take good care, wishing you well . xx

[Raewynne in reply to Greensleeves]

Thanks Greensleeves.Wish you well too.Im just recovering from a perforated bowel. Compliments of prednisolone I've been told.Very painfully.Now a bag for life.Hoping to strengthen myself Doing a lot of Inner Healing work.

[Greensleeves in reply to Raewynne]

Oh dear Raewynne , I’m so sorry. How on earth did the Pred cause that to happen?

Have you had Covid , nothing has been right with my stomach since having that beast .

You’ve got a bag now permanently or to rest the bowel ? Bless you, there are some marvellous functional health doctors and groups to join.

You have friends and support here .

I’m en route to the eye hospital now but thinking of you.

Hugs and love 🌷 xx

[Petros-1931]

Hello Greensleeves, very sorry to read your report, very similar experience to mine 15 months ago. Unfortunately was delayed igoing to hospital. There hasn't been any return to normal.

It was decided that it was TIA and given clopidogrel and 80mg statin daily to prevent a repeat. Very thorough checks done on both temples. I am on constant 5mg pred occasionally upping to 10mg when I start to feel discomfort in places marked when I started PMR in 2011. I can relate this to stress as primary carer trying to deal with a memory problem, in particular when I cannot interpret requests. It is important to have an understanding GP, which we have. Always carry eye drops

for dry eyes. Best wishes for good results from your ongoing treatment. Petros

[Greensleeves in reply to Petros-1931]

Hello Petros, i am sorry you’ve had an awful experience too . I’m more sorry you haven’t returned to normal. The grittiness isn’t pleasant and watering eyes . I have been using eye drops hoping they’ll clear back to normal.

Stress is our biggest enemy but there’s little we can do about it when caring for loved one!s .

We’d had a big panic the week before this happened with my brother being rushed in with Sepsis. I’d been carer for him and my beloved mum . He was okay thankfully after antibiotics.

I’m not looking forward to the tests but should be thankful. It will be good to know what’s happening and the treatment.

You’re safe while taking the Clopiderol and statins . Lovely Dorset Lady worked out I’d had 6 of those at the hospital.

I think we have to take the Prednisilone as needed in stressful times, we’ve been taking it for so long

Take care dear Petros xx

[Petros-1931 in reply to Greensleeves]

Greensleeves, thanks so much for your reply, very happy to see that your brother has recovered, as i sincerely hope that you will too. I hope that the tests will serve you well and lead to the best diagnosis and then best treatment. There isnt too much we can do about stress, relaxation sounds good but it isn't easy to clear your mind, basically meditation. Three cheers for pred!!

All good wishes for good health now and onward, Petros

[Greensleeves in reply to Petros-1931]

Thank you Petros, my little brother has Huntington’s disease, it was such a worry , I was beside myself with panicking. So thankful the antibiotics worked, the Rhesus team and paramedics were brilliant.

Thank you for your kind words, mindfulness is all well and good but difficult to put into practice during immense stress .

I absolutely agree, three cheers for Pred , it has made life more bearable and literally saved my life aong with dexamethasone during an adrenal crisis.

We couldn’t do the necessary caring without it.

Take care xx

[Purple-Owl]

What is TIA?

[Greensleeves in reply to Purple-Owl]

It’s a stroke warning, a transient Ischemic Attack. You act quickly to try stop a potential stroke. xx

[PMRpro Ambassador in reply to Purple-Owl]

It is also known as a mini-stroke - same sort of symptoms but they resolve in 24 hours, A stroke usually progresses and at least remains at the same level, it doesn't get better without treatment.

[PMRpro Ambassador]

A TIA can be the herald of a more serious stroke soon after. Repeated TIAs are increasing warning bells. The effect of GCA in vision is a very specialised stroke - and it is said that once you start with visual symptoms there is probably a week or so before it progresses because those are very specialised TIAs. Does that make sense?

A TIA is a TRANSIENT ischaemic attack - the symptoms are fully resolved within 24 hours. Stroke is different in that the symptoms DON'T resolve in a short time and may get worse if not treated correctly. Any patient with a history of PMR who presents with amaurosis fugax - temporary loss of vision - should be considered to be developing GCA until proven otherwise. It really isn't rocket science.

[Greensleeves in reply to PMRpro]

Thank you PMRpro , after a visit to the eye hospital, where I was told by a young doctor, it isn’t GCA , as my inflammation markers are low , I don’t know what’s going on . I reiterated I’ve never had raised inflammation markers.

The TIA clinic sent me to wait in hellsville , 17 hours in A & E . I was told it isn’t a resolved TIA , would have to wait for an MRI .

Stroke doctor has said a migraine caused the sight loss and ongoing dizziness , eye pressure and temple pain.

After the experience with my mum it was only the MRI that revealed the TIA’s , yet now they’re not giving me one . She ended up having a massive stroke after undiagnosed PMR and GCA .

I’ll have to pay privately for an MRI . I guess.

I’ve requested referral back to rheumatology.

Symptoms suggest GCA or stroke if CT scan was clear .

Reading the experiences of others, seems I’m not alone.

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

after a visit to the eye hospital, where I was told by a young doctor, it isn’t GCA , as my inflammation markers are low

Ain't necessarily so... especially as you have never had raised markers... and even if you had, we know they can lag behind symptoms..

Sorry to hear you are caught up in all of this.. and hope you get a sensible if not definitive answer soon.

[Greensleeves in reply to DorsetLady]

Thank you DL , I’ve got an appointment with the GP in a fortnight . In the meantime I’ll ring 999 if any further worsening events.

It puts us in such a difficult position when we know raised inflammatory markers aren’t a symptom for some of us .

I do wish this was relayed to all the medics , particularly those dealing patients with GCA and PMR .

My last rheumatologist was aware , he told me.

Thank you for your unfailing support for others . xx

[PMRpro Ambassador in reply to Greensleeves]

As DL says, it ain't necessarily so! SnazzyD sat in the ED with her vision closing down and stubbornly normal blood markers. It is so frustrating that they aren't aware. They claim it is a very small percentage - but like PMR in under 50s, if you aren't looking for it, you won't find it and it won't be included in the stats.

Grrrrrrrr!

[Greensleeves in reply to PMRpro]

Poor Snazzy , it is frustrating PMRpro , 20% isn’t such a small number without the raised inflammatory markers . It should at least be considered and investigated further by those trained in that field. Same as maybe considering PMR in the under 50’s . We were only just over 50 years of age when symptoms started. Initially told it was wear and tear .

It isn’t so rare or unusual either. They need a good overhaul, the system has gone crazy .

Thank you PMRpro , always there and so greatly appreciated. xx

[SnazzyD in reply to Greensleeves]

The frustrating thing was that they were raised for me but still within the normal range. The doctors stubbornly referred to the range but I knew I was out of whack. My coasting levels are very low and it takes a huge amount to prod them upwards.

[Greensleeves in reply to SnazzyD]

It’s beyond frustrating Snazzy , they won’t listen.

We know when things aren’t right. Whether it’s GCA or a TIA , it isn’t resolved.

So sorry you experienced that frustration.

Take care xx

[SnazzyD in reply to Greensleeves]

At least they still treated me in spite of that.

[Greensleeves in reply to SnazzyD]

Thank goodness they did Snazzy, they won’t listen to me.

Family who took me to hospital have Covid now, waiting for that to be the next thing.

Take good care.

[Grammy80 in reply to PMRpro]

I just wanted to say, in my case, I was doing dishes around 6 PM, and it was like a grey shade on and off; I don't even know which eye. I decided to go to bed and woke with a blind left eye. Yes, it is 'GCA until proven otherwise...' I'd had a 'regular' TIA in the past and that never occurred to me, but neither did GCA. GCA sure requires speed/action at the onset and the patience unknown to most humans as we travel on.💞

[Greensleeves in reply to Grammy80]

It was a grey darkness Grammy , with a shimmering silver vase glistening through the grey .

I think it more than likely it’s that, but because my blood inflammation markers are normal, it has been dismissed.

Eye hospital too , how disgusting, they should be aware of all eye conditions.

Two long nights in A & E were horrendous with them thinking it was a TIA and then a stroke .

I’ll call 999 if the dizziness and headache continues.

So sorry you lost your sight, this is the left eye too , the good one . It’s been gritty since. The sight has deteriorated but they don’t listen.

Take care 💕 xx

[Grammy80 in reply to Greensleeves]

This year, I got to zero pred after five years. I was never interested in being a 'zero champion' but only interested in retaining sight in my right eye ! After one month at zero, though on Actemra weekly, I'm in the middle of a flare that has impacted my quality of life dramatically. At the time of the flare, and now, my markers are normal. When I went to our ER here in the states with sore jaw, headache and felt my vision was 'hooded', my markers were normal. Even if you are on Actemra, my rheumatologist assured me...inflammation will show up in your CRP. It didn't....and I'm flaring away.

Throughout my treatment over these years....I think symptoms are what count. Many people have 'normal' ESR and CRP blood markers....but do have inflammation. I don't know what you can do to make them 'hear' you....but you must.This amazing group of people know your system better than I and you've gotten advice but only you can act.

I was misdiagnosed for nine months...or never would have lost the left eye. xx💞💞My best.......right now, it looks like 60 mgs a day to keep the right.

If I were to measure my frustration level on a scale on one to ten...it would be a fifteen. Being in the States...we can usually get into a Dr. fairly quickly, but there are plenty of wrinkles in this system too, maybe creases!!!

[PMRpro Ambassador in reply to Grammy80]

"Even if you are on Actemra, my rheumatologist assured me...inflammation will show up in your CRP."

No it doesn't - there is loads in the literature that ESR/CRP cannot be used to monitor disease activity in GCA. I really do think they shouldn't be allowed to use the stuff without a course and test on it!!!!

[Grammy80 in reply to PMRpro]

I am beyond....beyond...from your lips to God's ears...and Google says, "Tocilizumab fully inhibit the production of CRP. More than Grrrrr...been contemplating a post...now I will write it....I feel so uncertain.💞

[Greensleeves in reply to Grammy80]

Horrendous, all of it Grammy, I’m so sorry you’re mid flare and likely to need the 60mg Pred . Imperative if you’re mid flare , you can’t go through that trauma again.

I completely understand the frustration, i literally feel like there’s nowhere to turn, because nobody will listen.

The system here is broken at present. It wasn’t unlike being in an airport lounge for 27 hours in our ER .

Almost 200 people, standing , lying on the floor, crying and some screaming, waiting to be admitted, but no bed availability on the wards .

Letters arrived this morning, the eye hospital believed it to be a TIA . The ER have diagnosed Retinol Migraine and high cholesterol.

I’ve been to visit the emergency GP this afternoon who , despite me telling him my Inflammatory bloods have never been raised, said I presented more with TIA symptoms!

I’ve requested an appointment with rheumatology , also need statins and something for platelets. They’re still 400 despite high doses of Clopidogrel .

[Grammy80 in reply to Greensleeves]

Listen to your body and I hope rheumatology comes fairly soon. My neuro-ophthalmologist did an MRI looking for stroke activity and found none. Some of the pain I described is nerve pain around the dead eye....I usually do better mentally than I am right now but trying. I can't recall when I picked up statins and one other heart pill, but I toss them in my trap each morning🥴💞

[Grammy80]

I'm so sorry to hear this....are they considering GCA? Do they ever do IV steroid infusions...so glad to are going to eye hospital. 💞💞

PS.....slow, slower and slowest.