I have had GCA for 10 years, and am currently on 3mg Prednisolone with a target of reducing to 0 by the end of the year, IF the headaches do not return.My life has been turned inside-out with steroids and I am not the person I used to be.
I only found out about this forum, recently, after reading Kate Gilberts book.
Karools16.
Welcome, Karools, to the site you really didn't want to find. I do hope your ambitions to reduce to zero are achieved.
I've been on steroids for 15 years now and will be on a small dose for life and I am certainly not the person I once was, but I've been unlucky enough to collect multiple medical conditions along the way. Not to mention surgical, too.
For a long time I yearned to get back to 'normal' until I realised that I had found it - a new 'normal' took it's place and I am contented with it.
Thank you Polkadot.com. Fantastic name! Gosh, I didnt realise people were still on steroids at 15 years! ABout 8 years ago, I had reduced to 2mg and the headaches returned with a vengeance, and its been up and down ever since. Like you, I also have many other conditions, most of which are either from steroids or contributing to it.
Unlike you, I am not content with the new normal.
Karools 16.
Realistically, are you hoping to get back to where you were 10 years ago? You are 10 years older now, after all.
Polkadotcom, I am NOT hoping to get back to where I was 10 years ago. Who is?? I do realise I am 10 years older.
Karools16.
My apologies, I evidently read it the wrong way.
Welcome Karools16,
Goodness me, I thought 4 years with GCA was bad enough (albeit plus another 18months prior to diagnosis) but 10 is going some!
Glad to hear you are down to 3mg, and yes hopefully to zero by the end of the year. Have to say I have found the lower doses almost as challenging as the high doses - not the side effects certainly, but there's always that little devil in the back of your mind saying, "are you sure you are clear yet?" and every twinge or new pain, which obviously comes to the fore on low doses, makes you wonder.
Now you have found this forum, please keep in touch, I'm sure you'll have plenty of advice to give to others. If you look at the PMRGCAuk web page you will find lots more info including support groups around the country.
I don't think we are ever the person we were pre GCA, but I like to think we are more considerate and thoughtful, and sympathetic to others who also suffer with a myriad of so-called "unseen" illnesses.
Take care.
Thank you Dorset Lady. The nearest support group, to me, is Suffolk, but am unable to get there, having to use public transport. This forum is a boon. Marvellous, if you know what I mean, that there ARE people who KNOW what GCA is and endure it.
I am a real grumpy old git, these days, and isolate myself often. Yes, I, too, have other illnesses, some caused by steroids, and others contributed by it.
I thought I would be OK when off the steroids, but am horrified that Kate Gilbert contracted Diabetes Type 2, when she came off them.
However, we have to find life around our maladies.
Karools16.
Hi Karools
I have had PMR and GCA for 6 years. Blurred vision has been my biggest problem. I have managed to get down to Prednisolone 5mg, also on Mycophenalate as a steroid sparing. So sorry that you have had this for so long but it seems the end is in sight by your dose of pred.
Like you I have steroid related conditions but thankful I have my eyesight.
I have attended the group in Needham Market but also havebeen meeting up with a lady who has PMR but both share the same problem of trying to reduce the pred. We opened up our coffee morning to others and I am pleased to say 5 of us met up at Notcutts Garden Centre, Norwich. We are meeting again August Monday 8th at 10.30. No agenda or minutes just a great opportunity to chat. One of the ladies has GCA and I found this so helpful as I had not met anyone with GCA.
Hope you can join us and anyone else in the area.
Best wishes
Pat
Thank you Maryjayne. I might try and get to your August coffee morning. Lots of buses, but will try.
Regards,
Karools16.
Hi.
I was diagnosed with GCA aged 54 I'm now 71, and been on steroids for 16 years. Like polkadotcom I have collected several medical conditions along the way, and like you my life has been turned upside down.
I am at the moment trying ONCE again to reduce my dose as the Rheumy wants me off the Pred within a year because of the so many side effects, and he thinks the headaches I am now having are not GCA related ? My GP. has just prescribed Amitriptyline, he said " to help me through the tapering," but when I got home I read the leaflet and they are anti depressants but I'm not depressed.
I am at 10mgs of Pred at the moment, and reducing by half mg. per day a month, so very, very, slowly, so far so good.
Thanks for your reply, Bowler.Goodness me, 16 years!! I also have various other medical complaints which have been caused by steroids/contributed to it.
I find that people irritate me enormously without any just cause. I put on 3 stone in 3 weeks when first diagnosed. I lost it last year through circumstances.
I do hope you are able to come off steroids, without any problems. I must admit I am rather nervous, at each reduction.
Karools16.
Hi,
You don't need to be depressed to be prescribed Amitriptyline, in smaller doses it's often used for pain relief - I believe it targets the nerve ends. My daughter in law takes low doses for her back pain.
Incidentally I was prescribed it pre GCA diagnosis - GP convinced I had a trapped nerve in my shoulder! Heigh Ho!
Hello DL
I must admit that the Amitriptyline has eased my pins and needles which I was getting in my feet, [ peripheral neuropathy ] and I only get up once in the night instead of 3 for the toilet [ I have stage 3 kidney disease ] so that's a help, no headaches at the moment on 10mgs, next week I drop to 9 1/2 so keeping my fingers crossed.
My doc put me on it for sleep!!
Amitriptyline is also used for nerve pain and for fibromyalgia. I take it during the evening and it helps with sleeping.
Hello there. Just a quick one about amitriptyline, they ARE painkillers as well as antidepressants. You don't need to be depressed to have them prescribed. They can, however make you very drowsy.
Hi. I'm new here too. Having had pmr for 4years and now gca for nearly a year. I have been on steroids the whole time ranging from 60mg to 10 mg. I have had lots of flare ups this last month so now on 60 mg for the forseeable future. I m definitely not the same person, how much of that is the constant pain, the illness itself or the huge change in my appearance or not much support from family or doctors. It's a life changer for sure. Sorry you are having a tough time.
Thank you Annie-Marie. Dont worry... I have a pity-party from time to time.
Karools16.
Anne Marie, I dont see a post from you or your profile to tell us about you. Im so sorry you are in so much pain~! Is the prednisone not adequate to fight your symptoms?
Hi Zacsmimi. Thanks for your support. It is true I am struggling at the moment with the illnesses. Along with the pmrgca I have several other problems after having a brain haemorrhage and subsequent neurosurgery. ( don't want to worry anyone ....definitely not connected with pmrgca) I don't like to dwell on it, but I may post a profile. At the moment I am trying to get on top of gca flare ups and on 60mg prednisone for the forsee able future which isn't ideal but enables me to do small tasks. I have been on diease modifying drugs but with everything else I have my body won't tolerate them, so steroids are my only option at the moment. I am blessed with a positive attitude but it does get me down sometimes. Very pleased to have come across this fab supportive site.
annie_marie, I'm so sorry to hear what a rough time you are having with GCA flares at the moment on top of which you have had other serious problems to deal with. Especially not easy when you feel you aren't getting support from any of those around you. Unfortunately flares can be quite common in the first 12-18 months of treatment but it's great to hear that you have a positive attitude which will help to see you through this difficult stage of the illness.
Whereabouts in the country are you - roughly? There might just be a support group nearby where you could meet up with others who understand exactly what it can be like coping with PMR and GCA - a trouble shared is a trouble halved! You will find details on the following link: pmrgca.co.uk/groups/
Thanks celtic. I am east anglia region and will try to get to the meeting this week.
I've been on steroids now for 16 yrs, initially for PMR and for the last 6 years for GCA, accumulating several other conditions along the way, some attributable to steroids, some not. I've never got below 4mg but worrying about it is simply counterproductive. As polkadotcom has wisely pointed out we are that much older than when we began and some deterioration in health in addition to PMR/GCA is almost inevitable. The clue, I think, is not to focus on the negatives but to remember where we might be if we hadn't had the admittedly double edged sword of steroids to help us. And this wonderful forum, of course!
Maria,
You are so right. I know where I'd be without Pred - blind in both eyes! The fact that one had been saved by the quick thinking of a hospital registrar kept me going through the 1st six months of Pred and its debilitating side effects. Although since then times have been difficult with, as you say, additional problems due to Pred and age, I'm still here enjoying life to the full (my full, that is!)
Take care.
Welcome sadly to the club karools1!
We all wish you well in your life but at the moment try not to worry too much about your prednisolone levels. Stay on what makes you comfortable.
The most important things for you are not to have headache & eye problems when you have such difficult family issues. It would be good if you can find a helpful Doctor near you.
We nearly all find we get flare ups with stress.
Prayers for you & your family. Cemm.
Thank you Cemmein. Did I say I had family problems? My family are all in South Africa. My local GP only acts on the advice he gets from my Neurologist Consultant. I have been with the same Neuro. for 10 years and he monitors me and the dosage.
IF GCA was my ONLY affliction, I think I would handle things better, but its not, sadly.
Karools16.
HI there,
I too have been on this forum since Feb and it is such a great help, even though I live in US. Only on pred since Feb but thankfully no more head and scalp pain, down to 12 and a half mil and next month down to 12. My Rhuemy tapers me slowly, half a mil a month for now and thus far it's working. Good luck to you and know that this is an awesome place to be since everyone is so helpful.
Sharon
If nothing else, knowing there are people who,really understand makes a big difference. I am very early compared to others (jan 2016) and making lots of adjustments in life... And at times am angry at how my life has changed. But you know? Resistance is futile. It is what it is. My life may not be going where I thought it would or when... But it is. So I try to find things to be grateful for, because being happy feels a lot better than not.
Thank you Zacsmimi. Pearls of wisdom you have. I can relate to the anger.
Sometimes the GCA has to take a back-seat, as at present. Awaiting results lung tests and very out of breath keeps me house-bound some days, but you just have to do what works for you. None of my friends understand GCA, so I just say I have a brain disease.
Oh! how awful don't say that!! This is not nearly as bad as a brain disease!! I say I have been diagnosed with "an autoimmune condition". That's usually sufficient...
The anger is natural and normal - but it is not helpful. You may have to think on that one a bit. If I am going to change my life to accommodate this condition, I am going to find a way to accept it and have peace.
Peace of mind is my goal, and I work daily to maintain it.
I'm so sorry you are struggling with multiple issues... and hope you find some glimmer of light in the midst of the darkness...
Hello everyone, I am new here, I am 3 weeks into Pred
I am new here and so grateful for all the information 
I am new to this forum
I am new to this site
