GCA worries

[Abbeynan82]

I’m mildly concerned about my eyesight. I have been on Pred for over 3 years. It was started at 30mg for PMR, and GCA in the family. Down eventually to 6mg, but after husband had just died. Complete collapse of all systems, with double vision worsening, balance bad, pain, etc. so up to 15 again and then downward to 8. Constant aching and pain. Up to 10 again, still more trouble and up to 15 again since last three weeks. ESR 30 and CRP 34. Just keeps rising. Today, felt my vision noticeably blurry in garden centre! First outing in months. Arms now feel weak on Walker. Legs did ok. I’m not sleeping but 4 hours, lowest back giving sciatic pain. Have Lyrica but afraid to take much of it because of vision and balance. Aching stopped at 15 mg. Dr to check bloods once a month. Had Covid and Flu vaccines during this period. Legs ache constantly and go numb the minute I get to my bed. I have no recognizeable symptoms of GCA. Should I be worried about GCA? I have treatment for asthma and breathlessness, which I suspect is coming from PMR or Pred or Lyrica. GP seems well informed and vigilant. I feel a wreck, desperate for exercise.

Help!

[PMRpro Ambassador]

Did you have the flu and Covid jabs at the same time? Just been discussing it with jinasc - who reports that some pharmacists are saying they have seen people becoming quite ill when they are done on the same day.

Someof those symptoms COULD be suggesting GCA 0 but your doctor would be better putting you on a decent dose of pred, say 20mg, and leaving you there until the rising markers are stable again. You might even need more.

But if the breathlessness worsens do call 999 - the rising markers could be due to a chest infection. He may seem informed - but that GP may be underestimating what is going on.

[Abbeynan82 in reply to PMRpro]

Thanks, P M R Pro, GP doesn't see me often, relies on my reports, then ups or downs. He is worried about Arteritis, so have his attention. I was interested to know if Pred causes these vision problems.

[PMRpro Ambassador in reply to Abbeynan82]

Pred CAN - but you would have noticed them sooner surely? And that sounds very like a flare after your husband died - often happens. Mine took months to appear!

[Abbeynan82 in reply to PMRpro]

Yes, Eyes were issue from the beginning. Maybe a bit worse now. Flare was a certainty with stress and way too low a dose. I always struggle below 8. Always. Thanks for making me aware.

[Liby57 in reply to PMRpro]

I opted to have my flu jab and covid jab separately a few weeks apart. I haven’t had the covid jab yet. I do think having both together is quite a lot to take. I usually feel unwell for a couple of days after the flu jab so didn’t want to take the risk of a relapse by having covid jab as well after getting to zero. A few people have said that their PMR started just after the covid jab.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says if Pred were totally to blame for eye issues would have expected that to happen early days when you were at much higher doses.

However you do seem to have been yo-yoing a lot recently so maybe that may be affecting them -you do need to have a good discussion with your GP -as also stated, he may be missing something.

[Abbeynan82 in reply to DorsetLady]

Thank you. I suspect it’s all down to premature tapering. I’ve rarely been comfortable below 15. And, yes, the visuals there from the beginning. Persistent though.

[HeronNS]

Do you get your eyes checked regularly and does your eye doctor know you are taking pred. I had mine checked after six months on pred (I think I should have gone earlier) and it was discovered that I had elevated ocular pressure. I now know it was actually at a level where eye drops are generally prescribed, but because my eye doctor knew my eyes well he simply had me go back for a follow up check a few months later (my pred dose was already down to nearly half the starting dose when I saw him so that may have been a factor in delaying treatmentn too. At the second appaointment the pressure was still on the high side, but lower than before and not of concern, although I saw him more frequently that first year and annually, rather than every two years since, while I still take pred.

In the early days I noticed that my night vision was poorer and I also thought I had blurry vision more often. But as DorsetLady observed you'd have thought your symptoms would have appeared as mine did much earlier in the pred journey.

When you see an eye doctor make sure it is a person qualified to check for GCA and pred-induced glaucoma. I have to say my ophthalmolgist took eye conditions due to GCA and pred very seriously and told me more than my then-GP ever did, even stating that GCA is a medical emergency as serious as a stroke. I was the one who thought of checking with him a year earlier than I would normally have seen him. I have, however, been wearing glasses since childhood so eyesight is something I pay attention to.

[Abbeynan82 in reply to HeronNS]

Yes, I do go regularly and have pressure checked. You are right. I did have the blur from the beginning. I think it was noticeable in a familiar place that shouldn’t have been blurry! So is that ok? With Pred?

[PMRpro Ambassador in reply to Abbeynan82]

It happens yes. Dry eyes can also make it worse.

[HeronNS in reply to Abbeynan82]

About "okay" I don't know. Defer to PMRpro on that. But I seem none the worse for wear, 7 years and counting on pred, albeit usually at a very low dose.

[HeronNS in reply to HeronNS]

It was years after the fact that I realized that at a certain point leading up to the PMR diagnosis I used to get terribly dry eyes. My cousin (whom I still don't know if she has fibro or something else, it has all been explained to me rather vaguely) and I compared notes. How when we woke up in the morning we would have to move our eyeballs around with eyes still shut before we could manage to open them. That must have gone away when I started pred.

[Manihiki in reply to HeronNS]

that was what I was going to suggest. Every time I flare and prednisone is upped I have a problem with eye pressure

[HeronNS in reply to Manihiki]

I had to increase pred for a while early last year and was concerned when went for annual eye exam. Interestingly pressure was the lowest my ophthalmologist has ever told me, so I guess the problem came only with the initial doses over 10 mg, because I didn't have to take more than a couple of 10 mg doses with the flare, and even though I was taking around 8 (a bit of dreaded yo-yoing going on there) for while that appears not to have caused harm.

[Manihiki in reply to HeronNS]

Mine only comes when the prednisone is increased above 10. I have been tapering for a long time and saw the eye specialist the other day and because I am below 10 my eye pressure was completely normal thank goodness.

[RachelJDH]

i was told that monoclonal antibodies can be very effective at treating GCA. It is an injection that may be given every 6 weeks or so and is more effective than steroids. It is approved for use here in Wales but you do have to see a Consultant- good luck with that.

[PMRpro Ambassador in reply to RachelJDH]

Do you mean tocilizumab which, as far as I know, is the only MAB approved for GCA? It is a weekly injection, There is an alternative of monthly infusions used in some countries but not the UK - nothing 6-weekly about it. It is very limited in the UK, only available for a year and for relapsing proven GCA. It does seem to be becoming easier to get but still not universally available.

[RachelJDH in reply to PMRpro]

yes, it is easier to get here but hard to get a medical app. I did read some papers on it and they were quite positive but sadly there are always some people who don't respond. I will just struggle on with predisolone and put up with the Cushing's as I don't seem to be able to get below 15mg yet.

[PMR2011]

what you describe could be symptoms of GCA of the large vessel variety. My symptoms were more general. Deathly fatigue, weakness, hoarseness (especially when tired), dry cough (especially when laying down at night). Given your family history and that you have PMR it is right for your GP to have a high suspicion with markers continuing to rise despite Pred. Hope you get answers soon.

[beethovenite]

I too have blurred vision which I account for by the using of steroids.

You will know if you have GCA by having the most appalling nonstop headaches. If you are on steroids for that then you might want to up whatever dose you are taking at the moment.

Steroids deal with pain but have side effects which in my case have affected every part of me. But anything is better than those headaches.

I have had no ill effects from covid and flu jabs and they were done close together, Maybe I am the lucky one.

Beethovenite.