Pmrcga

[Nannyj54]

Hi. I've recently been diagnosed with pmrcga and just trying to find out as much information as I can about this condition. Thanks.

[1964-karina]

Hi, welcome to the club, the experts will be along anytime to tell you everything you will ever need to know!

[SheffieldJane]

You have landed in the right place Nannyj54. Welcome to the forum. If you have specifics to ask about just go ahead. I would peruse the site looking at old posts that sound particularly relevant.

[PMRpro Ambassador]

It really helps if you can ask specific questions which we will try to answer. Tell us your story - that gives us something to start with.

Here is a link to another PMRGCA forum and our list of links to useful sites. Do try to read around - there is so much to explain I could write for the rest of the day and still not cover the half. The charity sites are particularly good for info.

patient.info/forums/discuss...

[Hidden]

Dear Nannyj54, Since I was diagnosed in 11/2017, I have written a blog... it was the best way I knew to try and capture this crazy roller coaster ride that "is" GCA & PMR. Maybe my blog posts will give you some "first hand," insight to what you "might" be in for... Although please know, all of our journeys (although similar) are very different and quite unique. I wish you the best of luck on YOUR journey, and as Sheffield has said, "you have landed in the right place." Best of luck. Blog post links>>>>>>>>>>>>>>

rantingsofamadwomanblog.com...

rantingsofamadwomanblog.com...

rantingsofamadwomanblog.com...

rantingsofamadwomanblog.com...

[Nannyj54 in reply to Hidden]

Hi mamic1. Many thanks for your very informative blog posts which I have now had the chance to read and found very interesting. I can relate to quite a lot of that too. My journey started by going to the opticians as I was getting a mist coming down over one of my eyes. He sent me to the doctors with a referral letter to the stroke clinic where I was told I was having mini TIA's - JOY!!! Consequently put on blood thinners (lovely bruising all the time now). I then got up one morning and found I couldn't walk due to excruciating pain in my thighs and shoulders - it took me god knows how long just to get down the stairs. Went to the docs and was put on steroids (15mg) and given a blood test for PMR which obviously came back positive. Then I developed the pains in my head (but as I always have headaches anyway I didn't take much notice at first). Saw doc again and told him about them - (steroids increased to 60mg) and was referred to hospital for a temporal artery biopsy (DEFINITELY something I do not want to repeat as had really bad experience). I have always been a very active person and in fact work full time as a medical secretary for extended scope physiotherapy practitioners! I find the constant tiredness and not being able to sleep the hardest to cope with, and the lethargy (can't be arsed to do anything) - and not forgetting the sudden development of facial hair!!!! I am still trying to learn how to pace myself but it's hard. I'm now also waiting for an appointment to have a cataract op (already had one a few years ago in my left eye) as although I knew I had a cataract in the right eye, since being diagnosed with PMR/GCA it has developed very rapidly to the extent I am struggling to see properly. Sorry my response is a bit long winded. Look forward to further posts from you.

[Hidden in reply to Nannyj54]

Ohhhh you poor thing!! It all sounds so very familiar! All of our stories are so similar, yet so unique! I'm happy my blog posts resonated with you... I hope you found yourself laughing a little bit, or at least smiling! As they say, if we don't laugh we all may end up crying!!!! I have been on this road for 9 months ( I just realised... I could have created a new life, in the same amount of time!!!!) and I too have both GCA & PMR. Good luck with your cataract surgery... and I wish you also the best of luck on your PMR/GCA journey, and hope it is short and easy... Be well.

[SnazzyD]

Hello, this site saved my bacon last year. Search topics and read posts, or ask questions. The chances are that someone else has asked the same. There are people from various countries here too. Have you been diagnosed with both or just one or the other conditions?

[Nannyj54 in reply to SnazzyD]

Hi SnazzyD. Only found this site by accident so been busy reading this weekend. I have been diagnosed with both PMR and GCA after being referred to the stroke clinic as having mini TIA's, then put on blood thinners. I also had a pre-existing cataract developing in my right eye (already had a cataract op on my left eye a few years ago), and so this has now developed rapidly and waiting for an appointment to have this op done now. Seems to have been a bad year for me so far and some days I just feel like curling up in a corner and saying "stuff the world". I'm sure a lot of sufferers have felt the same though and it's good to know there is support out there for us.

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome.

For starters have a look at this and then as PMRpro suggests come back with specific questions -

healthunlocked.com/pmrgcauk...

[Grants148]

Welcome Nannyj ,you will find this forum very helpful,just let us know how you are and when you are concerned about anything ,there are some very knowledgeable people here who will be able to help you,l have found it in valuable regarding my PMR.

[altywhite]

Welcome Nannyj54, you'll find this forum sooo helpful! It helped me to come to terms with the nature of the disease and I feel I cope much better now. I'm a GCA sufferer and they think I've probably got PMR too but never had the full blown symptoms as I was on a fairly high dose of pred at the time. I'm 3 and a half years in and am down to 7mg. There are plenty of knowledgeable and helpful people on here so make the most of them.