What should we expect?

[mac66]

Hello again

I have posted a couple of times and have had lots of good advice from you all.

Its 7 months since my wife lost her sight to GCA. She is finding it very difficult to cope.

But we are in the dark (sorry for the pun) about what to expect with her condition. She is very tired all the time, sleeps all the time and this seems to be getting worse rather than better as time goes on. Except for her appetite which is good, this is very much how she was before she went blind. We saw the rheumy 4 months ago and he put her on a reducing dose of prendisalone ,currently on 12.5, and said to see him again in six months but we have not had an appointment come through yet.

What we don't know is this normal and a result of the steroids or is there something else going on. I am so worried about her. We are seeing our GP later today and I will go in with her and try to get some answers and ask some questions. Joyce tends to be the brave little soldier at the docs and just accepts what he says.

No one we talk to seems to have any idea what we should expect or even how her illness will progress and what has caused it. At the moment just getting washed and dressed to go to the docs is almost all she can do. As GCA affects the arteries we are worried that it may be affecting other organs.

Has anyone else been through this and what was the result?

Thank you for reading this, just putting this down on paper helps .

Barry & Joyce

[DorsetLady PMRGCAuk volunteer]

Hi Barry & Joyce,

Sorry to hear that Joyce is not doing too well. Unfortunately both the disease and the Pred can make you very tired.

Looking at your previous posts, I would say that maybe the amount of Pred Joyce is on is not controlling the inflammation as well as it should be.

Most people start on a higher dose than 20mg (not sure what the initial IV dose was), but if course most people assume that is to preserve sight, obviously not applicable in Joyce 's case. But, as you rightly say, arteries, other than the Temporal artery can be affected.

Is she getting any other symptoms like stiffness or pain, particularly in shoulders?. Does she have her bloods checked regularly -ESR and CRP levels?. If not, then perhaps you should discuss with GP. If you are really worried, then maybe she should be checked (if she feels up to it) for any signs in her main arteries that could be causing the fatigue.

Sending you both my best wishes, and do please keep us informed of Joyce's progress.

[ThisTooShallPass]

Hello again Barry...

You and Joyce have a lot to deal with, and from my own experience, talking about it and writing does help. It's overwhelming now for both of you, understandably. It was for me too, and still is at times. I too lost vision from GCA suddenly, with no other symptoms, but I was lucky. I have enough to read and maneuver with care.

Each of our experience is different, with both GCA and how our bodies respond to Pred. I too get exhausted with very little exertion, and I'm assuming that's from the Pred. I have to pace myself now, both physically and mentally. I get motivation to try and push through by having things/events to look forward to. That must be difficult for Joyce, as when I look back, I think my brain was in shock for many months. It took some time before my brain could deal with the vision loss, and it will take a lot longer before I come to terms with what it has done to my life. In other words, Joyce must be struggling with the blindness, and this may be affecting her interest and motivation. I hope you'll soon get help from the RNIB.

I have had to become far more assertive with those in the health care system, and in other support services. We have no choice, with long waiting lists, and because both Joyce and I are a bit different than the normal case of GCA. We don't have the other symptoms that most people have. Joyce is lucky to have you as support. It's be very difficult while on high dosages of Pred for me to be my own advocate, but you do what you have to.

For me, when I suddenly lost vision, they ran scads of tests trying to determine what caused it. They finally decided it was GCA. I had a biopsy, but like for many, it was after they started me on Pred, and by then it wasn't a strong positive.

At your appointment, I'd be asking about what tests have already been done for Joyce, what they indicated, and should more be done? I would also gain an understanding of where her CRP marker is now, and what it has been. CRP is not a perfect indication of whether our GCA is under control, but without any symptoms, it's all we have. It's a general indication that there is inflammation in our bodies, not necessarily cause by GCA (can be from an infection or a cold). But when there's nothing else influencing it, it can show that our GCA inflammation is not in control, and therefore we need to up our dosage of Pred to gain control again.

The role my GP plays is to make sure my general health is OK, and to check to be sure I'm not developing any of the long term side effects of being on Pred. She doesn't know much about GCA, so whenever I ask her a question about it, she always suggests I ask my Rheumy. Perhaps you should call Joyce's Rheumatologist and ask the date of her next appt. Things tend to get messed up, and sometimes we have to wait too long for an appt date just because their office forgot to do what they should have.

For me, the "plan" is to slowly and carefully reduce my dosage of Pred. Because I have no other symptoms of GCA, the only guide we will have to know the GCA remains in control is my CRP marker. There is a risk that I may lose more vision, so my objective is to do what's necessary to minimize the risk. I'm still on 60 mg of Pred, for far too long. But coming to terms with the side effects of Pred is more desirable to me than losing vision. Again, we do what we must to get us through this.

Don't ever think you and Joyce are alone in this. The people on here are a great support. And feel free to send me a private message if you want to ask specifics. A lot to deal with. But it will get better, less overwhelming, in time.

[PMRpro Ambassador]

Just because the GCA was affecting her optic nerve blood supply doesn't mean it wasn't anywhere else in her body - and whilst I appreciate the attitude of "the worst has happened so we might as well reduce the pred dose", as you say, it is quite possible that she still has GCA but affecting other arteries and that is what has resulted in a return of the symptoms now the dose has reduced so far.

I think perhaps asking for her rheumy appointment to be brought forward (good luck with that with the state the NHS is in) is called for - with some support from the GP who can help orchestrate that by asking for an emergency consultation. I would be asking if there is any chance of a wider scan to look for inflammation elsewhere. I'm assuming they are monitoring her ESR/CRP as she reduces, especially if they were raised originally. If there is inflammation they may still be raised though there is no guarantee.

[SheffieldJane]

mac66,

Your wife may also be depressed with very good reasons. I know from experience that we retreat into sleep when we are. Make sure that her personal response to this huge life change is not missed by the scientists. People who don't whine and complain can sometimes internalise the pain and trauma. Bless you both and hope that every day things get a little better for you both.🌹

[HeronNS]

I am so sorry to hear of your wife's unexpected vision loss. I can only imagine how calamitous this has been for her. I'm in the process of becoming a volunteer with the Canadian National Institute for the Blind (CNIB) and as part of the training we had to pair off and take turns guiding each other along corridors, through doorways, outside along the sidewalk and around a street corner, up steps, to a chair to be seated. Even only with a blindfold and the constant touch of my partner it was a frightening experience. As we said to each other how shocking to have to face this for the rest of one's life.

And then the blind individual who assists with the orientation let us know that in day to day life the worst thing isn't the loss of sight, I think we all thought it would be, it was the attitudes of other people who tend to treat the blind person as though they either aren't there (would "she" like the rice or the mashed potatoes?) or deaf (practically shouting at them) or with kid gloves (oh, I'm so sorry, I didn't mean to ask you if you saw the show last night, oops I didn't mean to use the word blind). She said the best way to treat blind people is exactly as you would a sighted person. We were given all sorts of pointers how to appropriately offer help in public places, etc. I look forward to being a vision buddy to someone who maybe likes to be read to, or go for short walks, etc.

I really hope your wife gets the help she needs from the doctors so that she feels better soon. Wonderful that she has a caring advocate in you.

[mac66]

First of all thank you all for taking the time to reply. It helps to know people care as we have no family to share things with.

We saw the GP today and he said the last blood test seems better than it was a month ago. I brought up the ESR CRP levels and he wants Joyce to have another blood test in a month to see how they are going. He said that it could be up to 2 years or more before Joyce really comes to terms with what has happened so perhaps we are expecting too much this early.

I agree Joyce is depressed as I have been suffering depression for many years and know the symptoms. We have found that, although its hard for Joyce to summon up the energy , going out for an couple of hours just to sit by the sea or visit a park near here does help her mood.

All in all we came away from the docs feeling a little more positive. Next step will be to get an appointment with the rheumatologist. When I last spoke to the appointment line they said they can only book 8 weeks ahead.

Thank you all again

Joyce & Barry