Hello I’m new to your group, I’m Pen, please read my profile I would appreciate any wise words.

[Pennyroyaltea]

Are many others with GCA PMR who’s eyes have been tremendously affected ? I’m registered as SSI (Blind) have little sight now.?

Do the headaches head pain etc get easier with time?

[RoadTrip]

So sorry about your loss of sight, I can’t imagine how difficult that must be for you. I know there are a number of people on here who have lost sight in one eye from GCA, such as Dorsetlady, who no doubt will be along later.

I have GCA/PMR but was diagnosed after severe headaches which went about a day after 70mg pred. Others more experienced will advise re your continued headaches, but I know they will want to know what pred doses you have been taking so they can help.

This was also the first site I joined and I know how difficult that can be. The help, kindness and assistance on here is invaluable.

[Pennyroyaltea in reply to RoadTrip]

Hello Road TripThank you for your welcome and encouraging words. I hope that you’re having a good day.

Seems the question mostly asked is the Pred medication dose. In my recent hospital stay I was firstly put on 100mg IV to get started for 3 days - this was such a relief I was amazed. at the effect. Then I was reduced to 60mg tablet form, still in hospital at this stage. So home and been on 60mg for nearly 4 weeks. The plan was to reduce by 10mg earlier this week, which I did but the headache (behind my ear and up my scalp was excruciating within a day or so I carried on but contacted my GP, my GP contacted my Rheumatologist who advised to go back up to 60mg for another 2 weeks and try again. I’ve been for an MRI of my head today, (I’ve had 4 now since March 21) and had it done twice as apparently I moved my head, there’s no wonder I kept getting an image in my mind of Peter Gabriel’s Video to his song ‘Sledgehammer’

I’m to have a bone scan next week and then back to see my Rheumatologist and Eye Consultant. I have to say I’m amazed and so thankful for the care I’ve received since being diagnosed with GCA/PMR/SSI .

Can you recommend any other good interesting sites?

Thank The Lord for speech text! It sometimes puts in something completely wrong which is often funny - but it’s a Godsend to me.

Take Care.

love the pic of the laid back looking pooches on your feed .

[RoadTrip in reply to Pennyroyaltea]

Glad you have a good medical team looking after you and hope all your tests go well.

I too had difficulty around 50mg, with bad pressure headaches, rather than repeat of initial headaches which you had. It’s good to see your doctor reacting quickly, main thing I found was to take enough pred to keep the pain away. Now about a year after my GCA diagnosis, I have difficulty remembering the head pain, which I described to doctors as 12/10 on the pain scale, I only know I do not want it to return.

Any questions or worries please ask, someone will have an answer, advice or provide a sympathetic ear.

[Pennyroyaltea in reply to RoadTrip]

Thanks for this, encouraging words to hear the memory of the head pain has faded for you to some degree.I feel I’m getting good care but it’s taken time to get to this point. I was ignorant of the disease up until July, however I did actually mirror every single symptom I’ve heard /become aware of.

I suspect I’ve had GCA PMR for some time but it hasn’t been diagnosed until July this year. From the stories here and others it seems to be so under recognised with the medics, which I find so-astonishing, for a disease that can cause so much distress and be life threatening too. Seems to be too many stories of this reoccurring theme!

Getting stressed over the past isn’t a healthy option and I’m looking forward to recovering as much as is poss, hearing some of the posts on here are encouraging.

I’m def getting good care just hope others who may have symptoms are picked up on quickly and get the good care everyone absolutely deserves.

I’m certainly going to share about GCA PMR if/ when I get the opportunity to do so. Happy weekend.

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome, afraid I’m going to ask some questions before I give any answers….

What IV dose were you given in hospital and for how many days?

what oral dose were you started on, for how long, and what on today…

As stated I lost sight in one eye pre diagnosis, started at 80mg for 2 weeks until Ophthamologist sure remaining eye okay, then down to 60mg for 5-6 weeks, before beginning tapering proper.

Headaches did take 2-3 weeks to recede, probably a combination of GCA still active and brain trying to assimilate info from one eye only.

Have you made contact with RNIB? - link if not - rnib.org.uk

As for being on Pred for life, this is what Ophthamologist said to me - “2 years at the very least, probably nearer 4, maybe for life” …actually he was almost, spot on - 4.5yr in fact. Been in remission fir almost 5 years now…you may like to read this, hopefully will be positive -

healthunlocked.com/pmrgcauk...

Please feel free to ask any questions any time, but info on doses would be useful….

Early days, like you, I often thought earlier intervention would have saved sight, but honestly there is no point thinking that, it doesn’t help…what’s done is done…and we have to move on.

[Pennyroyaltea in reply to DorsetLady]

Hello Dorset Lady

Firstly thank you for your welcome and offer of help. I’m so sorry to hear about your sight loss, do hope you’re having a good week.

Seems the question mostly asked is the Pred medication dose so here goes:

In my recent hospital stay I was firstly put on 100mg IV to get started for 3 days - this was such a relief I was amazed. at the effect. Then I was reduced to 60mg tablet form, still in hospital at this stage. So home and been on 60mg for nearly 4 weeks. The plan was to reduce by 10mg earlier this week, which I did but the headache (behind my ear and up my scalp was excruciating within a day or so I carried on but contacted my GP, my GP contacted my Rheumatologist who advised to go back up to 60mg for another 2 weeks and try again. So back to 60mg since Weds and already my head is clearer and feels more stable . Still sometimes heavy/pressure feeling on an evening when tired and some eye ache but lots better with the meds.

I’ve been for an MRI of my head today, (I’ve had 4 now since March 21) and today had it done twice as apparently I moved my head with the first one ouch! , I’m to have a bone scan next week and then back to see my Rheumatologist and Eye Consultant. I have to say I’m amazed and so thankful for the care I’ve received since being diagnosed with GCA/PMR/SSI

Oh and yes thanks, the RNIB hospital liaison person got in touch and also I’m referred to the local council as they have a duty of care. I’ve received calls from other RNIB peeps offering help from their tech Team which I’m def taking up, A course by phone offering help of living with sight loss.

I also had a call saying I’d be assigned my own support person who’s to make contact I believe next week.

RNIB seem brilliant, seem very organised,

I didn’t realise they did so much to help with so many practical things.

I’m using speech text so apologies for any strange sentences that don’t make sense!

If I’ve sent this message twice then apologies, as I seemed to lose the first message I did.

Have a good weekend

[DorsetLady PMRGCAuk volunteer in reply to Pennyroyaltea]

Glad to hear the increase to 60mg is helping, it is quite usual for the feeling you describe when tired… that will improve in time…and pleased to hear that the RNIB is proving helpful…

Please remember there’s always someone on here that can help, so anytime, just contact…and best wishes.

[DorsetLady PMRGCAuk volunteer in reply to Pennyroyaltea]

Seeing HeronNS post - meant to say you can get audio books through your local library at no cost…Look at local council library web page and apply - you will be given a code either online or maybe at local library . .you can then download the appropriate app…..and start “reading”…

[Pennyroyaltea in reply to DorsetLady]

Thanks for this I will do this, very helpful👍🏼

[PMRpro Ambassador]

IF it is GCA and you have been on a high enough dose of pred, then the headaches should improve fairly quickly, within a week or two at most. If they don't - your doctors need a rethink. But without answers to the questions Dorsetlady has asked, it's difficult to say much more,

I'm so sorry you have been so unlucky and suffered so badly. We do get told about a couple of cases a year where there is total visual loss, more where the sight of one eye has gone but that is so much easier to live with than your level. How much can you see? How do you cope with the computer? Is there anything we can do that makes things easier?

[Pennyroyaltea in reply to PMRpro]

Hello AmbassadorThank you for your recent message.

I do have a definite diagnosis of GCA PMR and SSI Confirmed by 2 Senior Consultants.

I have replied today with my details of Pred dosage to Dorset Lady.

I have some sight in my right eye - lower level but it’s pretty poor. If I try and read it’s more than double vision in the eye . Apart from the GCA PMR and SSI I’ve neurological issues too.

You ask about coping with a laptop/comp

The RNIB have offered their tech team to help, which is brilliant, so looking forward to that, as I’ve various things. But at the moment I’m using speech text to input and read to me from my iPhone. The settings are altered for the biggest fonts but I find it’s so frustrating and brings on a headache, trying to read from an inch away from the screen with one eye! I use Siri a lot too.

So apologies if something random appears out of context!! I forget sometimes that my iPhone is listening!! I hope to have something else sorted soon. But at least this is ok for now, I have a husband who helps if needed so am blessed in that way.

RNIB and Local Council have sent me info of various resources which I’m still

considering. I mention in another post how amazing the RNIB seem to be, offering a very professional service to anyone who needs help.

Thank you for your last question asking if there’s anything you can do to make things easier, so kind, but honestly I don’t know.

But I’ll certainly keep that in mind. The more I can educate myself on the disease and the resources the better, maybe that’s a good starter for help?

Bfn and take care

[SheffieldJane]

I am glad you found us. I share with the others great sympathy for what you are going through. At least you are knee deep in consultants to keep you safe. Please stick with us. This is a supportive and kind, knowledgeable place to bring your woes to. Welcome!

[Pennyroyaltea in reply to SheffieldJane]

Hello SheffieldJaneI’m feeling I’m glad I found your group too. I’ve had some very supportive words. I feel I’m incredibly grateful to have been paired with Consultants whom I seemed to ‘click’ with ( sorry to say not always the case in the past but it’s a two way thing so not playing the blame game!) straight away and having good care. This obviously is not just better for me but also for my family too, it helps reduce their pressure and worry knowing I’m getting good care.

Hope to chat again, have a great weekend.

[HeronNS]

I am so sorry you are still getting bad headaches, but you give a hint as to what might be making them worse when you say you sometimes have to make use of your limited vision and that brings on a headache. I hope you can get a lot of rest right now, and make sure you keep up your fluid intake! You have got a serious systemic disease and rest will definitely help you.

Btw when my aunt lost much of her vision (not GCA) she was provided with a fantastic little box on which she could listen to books - a big step up from the old tape recorders.

Best wishes.

[Pennyroyaltea in reply to HeronNS]

Thank you HeronNS fir your message. You’re absolutely correct on the eye strain and headaches, amazing how doing silly things detrimental to ones health can become habit forming - and quickly! It takes so long to make a word out too! Once I’m sorted with the tools that suit my needs things I’m sure will improve.

I read your post with interest, sounds like you’ve had very challenging health issues. I really cringed at the injured knee post ouch! I have both my knees replaced due to osteoarthritis, not great when one gets to the time when it’s knee replacements time. But I would have the ops again in an instant, for the benefits I have, like being able to walk!! It’s good to hear your aunt was helped with her black box. It’s finding the thing that works for you isn’t it.

Hope to chat again, with best wishes.

[HeronNS in reply to Pennyroyaltea]

I'm doing well for the most part. There have been some bumps in the road but somehow I seem eventually to find a way forward. Just keep nibbling away at the problem until a solution presents itself.

[Bcol]

Good morning Pennyroyaltea, welcome to the forum. So sorry to hear of your diagnosis. I have nothing to add that has not already been said, but will also say that as we have forum users from across the world's time zones there is always someone here to listen and chat to even if we can't all always answer a specific question.