Advice needed - eye deterioration

[VickySponge]

I have only posted once before when first diagnosed with PMR after raised inflammation markers and typical immobility. Started on 20 mg pred with miracle results for PMR on July 12th. I also had massive headaches but neck problems were suspected as i had been seeing a physio. As a precaution steroids were upped 3 days later to 40 mg by GP after a routine eye test found small bleeds in right eye. Saw opthamologist who says this is CRVO (Central Retina Venal Occlusion) - not interested in GCA - not his specialism. When I suggested there may be a relationship between CRVO and GCA, he mocked me for being knowledgable and said i knew more than him. Inflammation markers were normal I thought the Rheumy was good as when I saw him first. He gave me a lot of time, apologised because GPs had not followed protocol and sent me to hospital immediately for an ultrasound scan which may have been able to confirm GCA. When I had one 3 weeks after starting steroids, results negative but told that GCA culd not be ruled out.

Inflammation markers normal by July 31st so GP dropped pred to 35mg . Headaches just background and gone in a couple of days. I felt so muych better!!

Saw Rheumy for first time on Aug 5th. I thought the Rheumy was good as when I saw him first. He gave me a lot of time, apologised because GPs had not followed protocol and sent me to hospital immediately for an ultrasound scan which may have been able to confirm GCA. When I had one 3 weeks after starting steroids, results negative but told that GCA culd not be ruled out.

The rheumy confirmed this and said, in his opinion , I do have GCA and I have to be treated as if this is the case. .

Rheumy dropped me to 30mg for a week and to 20mg on Aug 15th. Made an appointment to check me 3 weeks later. However, with the drop in pred my headaches and head tingling returned so I put the dose back up myself to 25mg.

However, bloods checked on Aug 23rd - markers still normal. When I saw the rheumy last thursday he told me off for upping the dose and said that when I feel worse, contact GP, gets bloods done and IF markers are up, he wants me to phone the rheumatology nurse helpline and tey will seeme straight away to redo the ultrasound scan so they can confirm GCA.. he thinks headaches are neck related now and wants me to get off steroids quickly.

Yesterday , i noticed some blurring in right eye and some floaters. I saw the optician as an emergency this morning. She confirmed vision has reduced from 6/6 to 6/9 in a few weeks. and optic nerve is' fluffy' with some haemorrhages. Seeing a GP this afternoon for steroid advice. Phoned the nurse helpline early this morning and no reply yet to my message.

How can I be under the care of so many people in the NHS - an optician, opthamologist, GPs and a rheumatologist plus a spinal consultant and physio (as there may also be cervicogenic headaches coming from spinal issues) and I am experiencing this critical situation with my sight!

[DorsetLady PMRGCAuk volunteer]

Personal opinion, having had GCA, you cannot take the risk of eyesight loss... so think there is a need to increase Pred - to at least 40mg ... maybe more.

As for markers, they very often lag behind symptoms... so Rheumy should be taking notice of the symptoms first.. and as he has said you need to treated as if you have GCA [even though the original ultrasound was inconclusive] then he needs to stand by that.

If it turns out not to be GCA then the Pred can be reduced quite quickly, but it needs to be treated it as if it is until its proven one way or the other. Please impress that upon your GP.. and let us know what happens please.

[VickySponge in reply to DorsetLady]

I will insist on another boood test this afternoon!!

[Grammy80 in reply to VickySponge]

I cannot underscore DL's response to you enough~! Your bloods may be normal this afternoon. I'm in the throws of a big flare after five years....my bloods are normal...symptoms carry the day!!! Don't take a chance with your sight....💞

I do take Actemra which normalizes the ESR, but my CRP would still elevate...but is normal..except that thing aren't normal......💞

[PMRpro Ambassador]

Sounds to me as if the rheumy is living in cloud cuckoo land!!! What he is saying is how it SHOULD be and it sounds as if he is walking the walk himself - but as pretty much all of us can tell you, that is not what real life turns out like. Our experience is that helplines can often take a couple of days to get back to you. And then - how often can you get a blood test appointment quickly at the GP?

[VickySponge in reply to PMRpro]

I do feel he is putting more emphasis on the daignosis than me telling him what my body was experiencing

[PMRpro Ambassador in reply to VickySponge]

It is a common failing amongst rheumies. If this were a one-size-fits-all illness it would be fine - but it isn't and listening to the patient is very important, especially when it is currently so difficult to get to see a GP quickly.

[Grammy80 in reply to VickySponge]

Our bodies speak the loudest truest language to us......symptoms..be well💞

[SnazzyD]

My GCA started with neck pain initially and then scalp discomfort crept in. I was treated as GCA on the basis that my symptoms responded quickly to 60mg Pred. My bloods were within normal range and biopsy negative. Pred will eventually skew these things anyway. Some people have normal markers throughout which the Rheumy should know. The trouble is the ultrasound doesn’t ‘see’ all the blood vessels in the head and it doesn’t necessarily have to be where they can look.

Given there are documented eye issues and you had an improvement with a decent dose of Pred I would want to know the rationale behind dropping the dose and risking the eyesight.

[VickySponge in reply to SnazzyD]

Exactly, I shall be stronger in advocating for myself in future. I did tell the rheumy that may headcahe was temperal, my scalp was tingling and pain was 8/10 . Because the cervigenic headaches may be present too , he felt this was more likely the problem!! UGH!

[DorsetLady PMRGCAuk volunteer in reply to VickySponge]

He might be right, but on the other hand he might be wrong - and correct dose of Pred is likely to confirm either way,

[SnazzyD in reply to VickySponge]

Well he needs to explain exactly why he’s taking that chance if only to stop you having sleepless nights. If Pred does the trick I can’t see how he can say it is cervigenic without decent evidence such that he’s not taking too big a risk.

[Sillydogsmum]

Can your optician not refer you back directly to the ophthalmologist as,an emergency if your deterioration is so recent. Be it CRVO or GCA shouldn't matter. Could you give ophthalmologist seccy a ring and explain. Deterioration in vision trumps normal blood test!

[Sunnyday365]

I have been diagnosed with CSR and the retina specialist told me it was from the prednisone and to try and lower does asap - yeah I know that! So I see him every three months. I also asked any correlation to GCA as I do have headaches. He didnt seem to think that was the case as it would present differently. So with the frequent visits I am confident at the moment.

[AtopicGuy]

Whatever happened to "treat the patient, not the disease", eh? A lot rests on the type of headache and its location. Try to take note and provide more detail.