I was diagnosed with GCA in January and ever since I'm on Prednison (60 mg since March) and started to inject Methotrexate one month ago (60 syringe units). I thought and hoped it would get better, but I have a really bad day today. And I had few others not so good ones as well.
We decided to sell our house and move to a smaller place. This will happen in November, but for the last few weeks we spruced up our property and this was a lot of work and stress. I'm not able to do all the gardening and housework anymore. And I feel the stress is really harming me.
What can I do to support the healing of my arteries? Some days resting is the only thing I do. This can't be it. I don't go to the gym anymore. Maybe that's what is missing. I would be grateful for some advice, or experience from your own journey. Something, please. Hugs!
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Akino
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There are many wonderful people here who will respond to your questions. I am sorry about your recent diagnosis, and I can only relate because my Mom has GCA. She was diagnosed last September after losing her sight while at work. Because her blood test came back suggesting GCA they went in to look at the temporal arteries and it came back positive. Like you, she was put on 60 mg. of Prednisone a day at the beginning. She was unable to taper without flaring and a few months ago they added a monthly infusion of Actemra for her. Since then she has been able to taper down to 10 mg of Prednisone. She continues to get the monthly infusions and will be tapering very slowly now, keeping a good eye on her blood testing per usual. For her the biggest problem has been the fatigue since diagnosis. It can be very intense, where there are days she just sleeps away. Since the infusions and the taper she is awake more, although she still needs much more rest than would be considered "normal." There are days she is up by 9am and back laying down by 10:30 am, barely up to watch the 6:00 pm news, eat dinner, and rest again.. It really is day to day and from what I have read and been told, a long process to heal or even feel well again. If nothing else you do have to listen to your body and when you are tired, you must rest. The stress and depression this illness brought to my Moms life has been hard for me to watch. She went from being a over active, completely independent woman, who at the beginning we truly believed was not ever going to feel well again.. There is so much uncertainty, will this illness flare, how long will it take to go away, if it ever does, how do I continue to be independent and self sufficient and every other imaginable question you can think of. I left work to stay home and take care of her. In saying that I mean, doing those things she does not have the energy to do, (laundry, cooking, cleaning, driving), and to make sure she was taking care of herself, and to give her the emotional support that I felt was so important. I have seen some very good improvement since the Actemra infusions were started. She is awake much longer, but resting whenever she is tired, and has learnt not to push herself. Something I really believe she was trying to do in the beginning and it was doing more harm than good. The people at this site are so much more informative than I am and are so wonderful in sharing tips and advice, I am sure you will get some great responses. They have been super helpful for me and I share it with my Mom and it has been a very positive experience. I wish you only the best and much better health in time.. Take it slow is the best advice I can give.. This is not the flu and won't be over in a few days or a week.. If your body says it's tired, rest. If you can't do something, don't do it. Please keep in touch and let all of us know how you are doing!
Thank you so much for your response. This was like an emotional hug and felt wonderful! It's really not easy to rest and rest and rest again. I hope for myself I'll get better at it and I wish your mom success and I thank you again for you warm thoughts and words and for just being there for me. Thank you. Monika
Monika, The fatigue is real, it is intense, and I have seen how hard it has been for my Mom to give in to it and do what her body tells her to do. To say it's frustrating is an understatement. Her mind wants to do all the things she did prior to GCA and her body was/is constantly saying not a chance. I could see not only the frustration, but at times the anger, and depression this was causing her. The only thing I had/have to offer was my support.. I did and still do for her the things she is not up to doing, yet allow her to be part of them and on the days she could do things herself I pretty much did a happy dance for her! It is hard to keep smiling when you are watching someone you love struggle with this disease, but in my opinion it is an important part of the treatment.. There are many days she is still deeply fatigued, but as time goes, it is slowly, so very slowly improving.. We go by moments now when making plans for her and with her.. It is no longer day by day, it is by the moment. I continue to ask daily what she would like to do or can do and I am there to make it happen. When I say that going to a Walmart and riding the scooter around the store, seeing people, and feeling productive in her own way, can be the highlight of the week for her and she feels alive again if only for a short time before she needs to lay down again.. I can't stress enough how important it will be for you to do as your body tells you.. It's ok to be frustrated.. It's normal.. Do what you can when you can and let the rest go.. If depression becomes an issue, talk to your Doctor, again it is normal to feel this way. I know we still have a long road ahead of us with GCA and I do worry about flares and just how much of this disease will linger on, but I can't focus on what might happen, I focus on the now, still not knowing what each minute will bring, but facing it with a fierce positive outlook. I pray that you will only continue to feel healthy again in time.. Just remember in time, moment by moment, and don't push when you can't.
If I had a daughter like you it would definitely be a positive shot in the arm towards healing. Your mum's a lucky lady, I hope she beats this thing by taking all the time she needs.
Akino, I can't recommend little walks round the block enough, maybe with small missions attached, like posting a letter. I am going further and further sometimes dragging my son or husband along to reach my step goal . I wear a step counter with goals set by my Rheumatology Registrar, she phones me to see how I am doing with the steps and the Pred reduction every couple of weeks. This is so motivating and part of a research project on fatigue.
OK, I will try. I will. It's very hot here right now. I have to go early. Thank you. I think it's a great idea to have someone to keep you motivated by phoning and checking how you're doing. I do have a step counter as well. Hiw many steps did you do at the beginning? Thanks.
When I was issued with the step counter I was told to wear it for the week and go about my normal life. The research lead then looked at those ( small) figures and set me a small attainable goal which was a third more than I had been doing naturally. So if you naturally do a thousand steps each day you would then try 1300 for a couple of weeks and so on until you are having a decent walk each day. Take a supporter with you it helps. It is a very individual thing. If you get up early, take your Pred with yoghurt or something and set off in the cool of the morning for your little exploring walk, you may find, like me, that you enjoy it. You can always have a little lie down when you return. Good luck, it's a happy thing. Family and friends start taking an interest and ask you how many steps today. They are racing you really, but who cares.
That is such a great advice to get into it. It often needs just this little 'recipe' how to find a way to do it, or to get into it. Thank you. I'll definitely do it!
I love that you are doing the small walks and keeping track! Small increments are the best way to go and will give you the best results. And its a great feeling when you meet your goals!! My Mom needed to use a walker at the beginning and she was so devastated about that. I started taking her to little shops that I frequented, and at the beginning she could barely get through before getting so fatigued. She was using it to walk into her Dr. appointments, etc. I was and still am dragged along on every outing, but to see her getting a little further each time is such a great feeling for me, I can't imagine how awesome this is for her!! We still throw it in the car if we are going out, but she goes further and further without it each time! Slow is how we roll!! I am happy you continue to be motivated and have that support you need!!! It is so important!!
Hi welcome to the site and I can understand that having been recently diagnosed this whole process of diagnosis and coping with a new way of life and medication can be so overwhelming and possibly frightening at first. I would imagine that with the stress of putting your house on the market to sell this has probably exacerbated the condition as both GCA and PMR thrive on stress.
Dorset Lady ( one of the contributors on this site) has a good introduction that she sends to folk explaining the two conditions and basically what to expect. There is also a good book by Kate Gilbert, which you can buy from Amazon, again explaining the conditions of PMR and GCA.
You are at the most difficult stage, having just started a very high dose of Pred and also methotrexate so you won't feel at all like yourself and will feel perhaps like a Duracell bunny but also fatigued at the same time, from what I've picked up from others on this site.( I have GCA but never needed to go to a high dose of Pred to control my symptoms as my eyesight was not affected - I just had cranial GCA which developed from PMR)
On your good days do try to be as informed as you can from this website and Kate Gilbert's book and any other sources you can as that can help with any fear of confusion and also knowledge is power, as we are all discovering on this journey.
Do look after yourself and try to go with the flow and rest as much as you need to at the moment, when you need to, as sleep may be very disturbed on the dose that you are on.
Remember too that things will get better- certainly not overnight but slowly but surely and friends and family need to know that you do have a serious illness, which although not life threatening and incurable, never the less you do need space, time and support in order to get better.
Rest and pacing is what you can do, also eating sensibly ( although you may feel very hungry on your dose of Pred) Many here in order to try to control weight gain eat a very low carbohydrate diet with plenty of fish, vegetables and chicken. Other anti inflammatory foods are added to this, which again on your good times you may want to look up on the web. I found that so many things were out of my control that to help myself with my diet was a way of at least feeling I had some control over something!
Do keep us informed how you are getting on. This is a very good forum with many who are very supportive and knowledgeable- so you are not alone!
everything you mentioned is what I'm experiencing. I gained weight like never before, I grave fatty meat and chips what I never ate and not eat now, but hungry I'm. I read the book and look at it again and again. I think the valuable part really is you don't know how long it'll take to improve, or even disappear. My face is so round and I don't look like myself. But the fatigue and insomnia are the worst part, nothing else brings me down so much. I just wish I could do something more proactively, but that seems rather not the case. Thank you for your encouragement and I feel hugged. I'll try my best, Monika
The weight gain is normal and hard to deal with.. My Mom looked liked like a stranger at the beginning of Prednisone.. Her face and eyes were so putty to some she was almost unrecognizable! She has referred to herself as "something out of a swamp" at times. Was unable to do her daily makeup or hair and was absolutely was down on herself.. It has since come way down, almost completely back to normal with the slow taper.. And yours will too! She is now thinking about getting some new makeup and a haircut! Of course if it means shopping count me in!! As I write this I am thinking to myself "how many times do I say SLOW?" My gosh is this ever slow!! If I don't laugh at myself sometimes I think I would just cry!!
I think you're very special and what you do for your mom and how you help her is outstanding. She is so lucky to have you in her life. It makes all the difference for sure. I want to hug you for being such a good person!
I had to reniew my prescription for Prednison two days ago and my doctor decided to start with a taper down. Pretty drastic actually. 10 mg less every week till I get to 25 mg and than 20mg for 4 weeks. I'm sceptical having read all the suggestions and experiences with flare ups in this forum, but I'll follow for now. I'm so excited hoping of course. I felt like winning the lottery and still do, just happy things are probably going to change.
Thank you for your encouragment and making my situation more bearable. Take good care of yourself! Hugs, Monika
Akino, could you please educate your doctor on the dead slow nearly stop method? Studies have shown that patients using a very gentle gradual reduction tend to stay off the dreaded steroids. Particularly when you get to the low doses, like 20/15. I don't want to burst your bubble but I don't want you to have a bumpy ride either
10mg every week is a bit harsh. 10mg every MONTH is more usual - and some people find 5mg every 2 weeks is easier. He isn't allowing any time for your poor body to settle at one dose and if/when it goes pear-shaped you will have no idea where it was.
I'll see him in three weeks. If I feel lousy I will not continue and slow down. I'll decide after the reduction to 40 mg, what would be the second week, and see how my body reacts. I would love to rush, but I know it wouldn't be wise. Thank you!
I think we all have a secret envy for your mum having such a wonderful daughter. Do take care of yourself in all this! Some of us are here because we spent long years being selfless and then fused with PMR/ GCA. Just saying Joyismami, hugging you back.
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