New GCA/PMR with loss of peripheral vision in right eye

[annettepackham]

I have been taking the pred. Steroid tablets for 9 days now at a 60mg dosage, how soon after commencing steroid treatment did head symptoms significantly improve in others?

[PMRpro Ambassador]

I think it depends on the person - there should be some improvement very quickly and if there isn't and they are sure it is GCA they might consider an even higher dose. When are you being seen by your consultant again?

Which particular symptoms haven't improved?

[annettepackham in reply to PMRpro]

Thank you for your reply I am seeing the Eye clinic next Friday. The pain in my temples has eased especially on the right side but the pain is bad still in the back of my head and neck at the base of skull, I am also having a lot of night sweats around my neck and head especially, and have constant whooshing in my left ear. I generally feel flu like, achy shoulders, arms, clavicle area, even hips and still feel totally exhausted. My eyesight is slightly hazy when I first wake in the left eye (the one without loss)

[annettepackham in reply to annettepackham]

Also I am due to reduce the steroid dose to 50mg today!

[Celtic PMRGCAuk volunteer]

Annette, my head pain disappeared within hours of taking my first 40mg steroid dose, but the response to the treatment can vary from person to person. At my first rheumy appointment, he told me to contact him immediately should any head pain return but I was lucky and it didn't. If your head pain hasn't improved significantly on 60mgs after 9 days, I think you should check this out with your rheumy, especially in view of your loss of peripheral vision.

[annettepackham in reply to Celtic]

Thank you for replying, I am due to see the eye clinic next Friday. Also I am supposed to be reducing the steroid dose to 50mg from today! I telephoned the eye clinic yesterday and only received a message from the consultants secretary that they were happy that they had me on the right treatment and would see me next week!

[PMRpro Ambassador in reply to annettepackham]

I agree with Celtic that if you still have head pain you shouldn't be reducing. I'm sure they are happy it is the right therapy - the question is, was it enough. As she also asks - where are you?

[Celtic PMRGCAuk volunteer]

Annette, going by the symptoms you have described, it certainly doesn't sound as though you should be reducing to 50mg from today. Are you under a consultant rheeumatologist? If not, you should be and should have contact details for him or the rheumatology nurses, especially in these early days following diagnosis and when your symptoms haven't eased significantly. Whereabouts are you?

[annettepackham in reply to Celtic]

I am in Cirencester and have been seen by the eye department at Cheltenham General who did the blood tests and checked my vision and temples also. Follow up is next Friday!

[annettepackham]

I am in Cirencester, Gloucestershire and have only been seen by the Cheltenham Eye Department as yet,next appointment is with them in a week.

[Celtic PMRGCAuk volunteer in reply to annettepackham]

Hmm, Annette, I was just wondering whether you might have been in a area where there are some known excellent rheumies, some involved in research into PMR and GCA. I would have suggested someone in Bristol which is only an hour from Cirencester, but I'm not sure whether he has recently retired. Perhaps someone else looking in may be aware - PMRpro?!!!

Meanwhile, most of us here seem to be in agreement that you should not do that reduction today whilst those symptoms are as severe. Importantly, remain alert to even the slightest problem with your vision, in the event of which seek immediate advice if unsure, from A&E if necessary.

[annettepackham in reply to Celtic]

Ok! Thanks so much, have taken the 60mg today and will continue until I have been seen again. I will certainly take note of the eye concerns as I would not wish to lose any further sight, I have also noticed that my hearing on the right side is very muffled! I am actually relieved that I didn't have a stroke as at the worst of the headaches and pressure I actually thought at the time I feel like I am going to have a stroke, which may not have been far from wrong! If there is anyone who knows a specialist in the South of the UK I would be more than happy to try and arrange contact. Thanks again for your response and time

[Celtic PMRGCAuk volunteer in reply to annettepackham]

Annette, I'm in the South East and was under an excellent rheumy at Chertsey In Surrey who is involved in research into these conditions - would that be too far for you? Otherwise there is an expert based in Southend.

[annettepackham in reply to Celtic]

No definitely wouldn't be too far, my partner would happily take me if it would be possible for me to make an appointment, it would be amazing! Please don't feel pressured to do this maybe I can contact them if they agree to you giving me their details. Thank you

[Celtic PMRGCAuk volunteer in reply to annettepackham]

Annette, I've sent you a personal message with details.

[PMRpro Ambassador in reply to annettepackham]

His details are publicly available on the internet! I can only say that I would travel from here in Italy to see him privately if I needed to! The cost on a single private session with him would be worth every penny IMHO!

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Hope you never need to, PMRpro, but you'd probably be joining a very long queue if you did!!!

[PMRpro Ambassador in reply to Celtic]

Yes, I suspect so too! Could always try the colleague card...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

I'll back you!!!

[DorsetLady PMRGCAuk volunteer]

Hi,

I started on 80mg (one eye already lost), majority of pains obliterated immediately, but a mild headache and still slightly painful to eat for a week or so. After two weeks reduced to 60mg (Ophthamologist's recommendation, GCA diagnosed by his dept), stayed at that level for eight weeks then down to 55mg for 3 weeks, 50mg for 3 weeks, 40mg for 3 weeks...blah.blah...

Have to say, my case was a bit extreme, so don't take as normal!

But as others have said 60mg should have got rid of majority of pain. If you are really not happy then don't reduce, in the great scheme of things one extra week at 60mg is not going to do a great deal more harm (you are already likely to get side effects), and it might do you good! Or you could try reducing to 55mg. Although the clinic may be happy with your reduction plan, remember everybody is different. If you are worried please speak to them again, that's what they are there for. DL

[annettepackham in reply to DorsetLady]

I have taken 60mg again and will continue until I see the Cheltenham Hospital next week, I am sorry you have had such an awful time, it must be very difficult to totally lose sight in one eye, thank goodness not both. The only side effect I seem to be having from the steroids at the moment is the desire to consume the entire contents of the fridge and store cupboards, which is definitely something I don't need to do !! x

[DorsetLady PMRGCAuk volunteer]

Tell me about it! At first I was so high I could talk for England, felt like the Duracell bunny! Not sure how my poor hubby put up with me. I also had a few weeks of sleeplessness, but all that soon passed and life settled down again. Take care, DL

[annettepackham in reply to DorsetLady]

Oh I am the same, I am talking loads by comparison to the last few months when I have just felt totally exhausted and very depressed. I am not sleeping well but I have had insomnia for the last year, mainly because I was uncomfortable all the time, so now even though I am awake til around 3 - 4 am I am feeling more positive! Take care too! Xx

[Marybach]

Hi there Annette. I was diagnosed in Oct 2013 with GCA. terrible head and jaw pain. Was put on 60mg Pred and symptoms were relieved in 3 days! I then reduced slowly to 0.5mg in Feb this year but had a flare up so am back on 30mg now. We'll get there its just a long journey and we'll have to be patient. Hope all goes well for you. Love Mary x

[annettepackham in reply to Marybach]

Thank for your message Mary, I am sure it will get better, I have felt so awful for the last year, I am grateful to be diagnosed and receive steroid treatment, they have at least lifted the horrendous depression! Still lots of pain but glad to be finally on the right path. Hope your symptoms soon respond well again and let you reduce dosage again, annette xx

[annettepackham]

Thank you so much all! I very much appreciate all the information, support and sharing you have given. Without this forum I wouldn't have a clue! You have made a HUGE difference. I will let you know any outcomes and hope I can continue to benefit from all your shared wisdom and knowledge! Hopefully one day I may be able to impart useful information in return! BIG thanks lovely people xxx