One day at a time

[Meg1933]

I am 64 years of age and I gave GCA, which gas taken away the sight in my left eye, which will never recover, which makes me sad! I am struggling very much as my blind eye is causing me 24/7 chronic pain , my specialist has told me it’s due to nerve pain that they can do nothing about. My steriods are being reduced which are causing me a lot of problems, my balance is not good, my mood swings, and so many other problems. I also gave to live with 24/7 chronic pain from a botched hip replacement I had 4 years ago. Mr Meek, the surgeon, damaged my sciatic nerve and I gave a drop foot too!. My pride and the support of my husband keep me going, but I really gave so many dark days when I could easily give up. Does anyone else feel like this out there?

[HeronNS]

Meg, no wonder you feel sad. How is the doctor telling you to taper? Often they make patients go too quickly and that can cause a lot of added problems which you really don't need and which a slower taper can help you avoid.

It's possible your doctor doesn't have any solutions for the nerve pain, but I think it's something many have dealt with and found alternative therapies which can help, even if they can't cure. Hopefully someone will have some ideas for you.

I would recommend Bioflex low level light therapy but it isn't offered in many clinics in the UK so maybe hard for you to access. bioflexlaser.com/

[DorsetLady PMRGCAuk volunteer]

Hi Meg,

As you know from my answer to your first post, I lost sight in my right eye - and it does take a while to come to terms with - mentally and physically. But fortunately I didn’t have any nerve pain like you, so cannot help on that subject, but I’m sure they must be something to help you.

Incidentally I know all about arthritic pain - have had knee and hip replacement - now waiting for shoulder replacement - and chronic pain does grind you down.

You will have mixed emotions for some time, but hopefully like me you will in time come to be thankful that the sight loss was only one eye - many people are not so lucky - and when times were/are bad I remember that.

Obviously the high doses of Pred affect you as well, but you must remember they are also doing you good - in preserving the sight in your good eye.

Just for interest this was my reduction plan for the first 8 months or so - it may help or not, but it served me well -

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

Please remember you are not alone - we are always here to help you.,

[Blearyeyed]

We all have some of those dark days , usually caused by the Pain if it isn't controlled .

I am an artist and although I have been lucky in comparison to you and Dorset Lady , and not lost sight , at 48, the GCA/ PMR has taken its toll on me and my blurred vision and dizziness ,plus the body pain and headaches , mean I cannot do my work at the moment .

And obviously , rather than just being a job , being an artist, is a big part of your personality too.

I empathize with you completely , and just hope , that like me , you can take strength from your Family but also start to keep your spirits up by looking for those silver linings and small achievements every day .

Are you receiving any help for the non GCA pain in your eye and hip ?

I have nerve pain medications , some of which , I was taking before the GCA / PMR for other conditions because Pred does not work for those.

If you aren't , I hope you do ask for help with it from the GP and get referred to Neurology and to Pain Management to help find the right combination of treatments to get you through.

Keep in touch , there is always someone on line if you need to talk , even if it is just to get a helping shoulder to cry on xxx

[Rimmy]

That is all really very 'tough' Meg and everyone here is able to understand why you would be feeling so 'low'. I am no expert in pain management - but that is clearly a priority and I would like to think there is something 'modern medicine' could do for you to alleviate the worst of it ! Most certainly one aspect is your Pred dose - and that needs to be appropriate for where you are currently at - and DL's advice is the very 'best' you could have anywhere !! As suggested by the others who have responded so far - please never feel alone - 'WE' are here for when you need to talk about anything ...

Wishing you some much better things SOON !!

Best wishes

Rimmy

[Purplecrow]

Dear Meg, I am happy that your husband is supportive for you. Loss of vision must be very difficult , and the pain you experience makes it doubly hard.

All I can offer is reassurance that this forum is here for you, and someone will always be nearby to respond to your questions and to offer support. All the members here, have experienced PMR and/or GCA and will try to guide you toward answers and options.

The latest findings and research are at fingertips of many of our members, and they share their knowledge and experience generously. Also, when they don't know answers, they are willing to look deeper.

Don't be afraid to ask for support when you need it, and please ask any questions that come up. I know there will be many.

🙏🏽 Jerri

PMRr diagnosed 2013

[PMRpro Ambassador]

Well done - my instructions about a new post were obviously intelligible!!!

No wonder you are so down - have you made it clear to your doctors in charge of the pred reduction just how much pain you have and its effect? Did it improve at all at higher doses? And are you under a pain clinic?

[Telian]

I’m afraid those dark days are quite common Meg and the guidance you get on here is first hand knowledge of others in similar situations. Remember we are all different and if it doesn’t work for you it only needs slight tweaking. Always let your doctor know how you are feeling to enable effective management. You will definitely start to improve as you reduce your pred.

It’s usually withdrawal symptoms that make you feel ill but they are short lived and will go after a few days.

My neighbour is totally blind because of GCA and describes how you feel exactly. He has reached 10mg pred since starting on 80mg pred after intravenous doses for 5 days in February this year - he says his mood is now much better and is learning to adjust. You will too but being in such pain isn’t helping. Ask to be referred to the Pain Clinic/ Neurologist. If you can get help there it’s one thing less. Just because it’s been 4 years since your ‘botched op’ doesn’t mean they can’t do anything more.

5 years 6 months GCA/PMR - current dose 4mg.