Recovery from GCA -regaining stamina, diminishing fatigue

[Bluey-1]

The title of this post is a hope. Has anyone out there recovered from GCA and regained their stamina? Are you living your life through what your head wants to do or are you governed by your body’s capabilities? Would love to hear from you. I’m still pacing carefully, managing rest, healthy diet (mostly, it has been Christmas), some exercise and I’m actually sick of it. I can go a few days where sleep is restorative and all is well, followed by a couple of grim fatigued days when I know I have to take it easy. I had a TIA/Afib episode in August and on the associated meds. Had Covid over New Year to add to collection of health issues. Will I ever be free of the up and down nature of it all? Apologies in advance for the rant. I know many of you are really suffering. Just wondering if people out there are living the life they lived before GCA.

[DorsetLady PMRGCAuk volunteer]

Couple of links to read - and yes you will regain stamina… but maybe not to the level pre GCA , time takes its own toll - and as you explain other health issues may also muddy the waters.

healthunlocked.com/pmrgcauk......

healthunlocked.com/pmrgcauk...

[Bluey-1 in reply to DorsetLady]

Thank you DL. Your strength is an inspiration and Elaine’s story and the comments are really helpful. Just having a low moment feeling that I’ve changed personality since GCA. Weirdly even fun stress and socialising can take its toll on the stamina front.

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

Yes it can… and we all get days when everything seems too much…. It’s no help, but thinks it’s called life.. 🤨

[DeepThought2]

Dear Bluey - I was diagnosed with GCA (the large vessel vasculitis type) in February 2021. I am since approx. June 2021 in remission and since July of the same year back to normal physical strength. I took Actemra from the beginning and still take it though continuously increasing the time between injections. I am exercising as before my disease and working full time. So I am living as before GCA but still with medication.

[Bluey-1 in reply to DeepThought2]

That is hopeful. In the U.K. we are not offered Actemra. I am now on lower steroid doses so side effects are diminished. It does feel like a roller coaster of ups and downs with fatigue and limited stamina.

[DorsetLady PMRGCAuk volunteer in reply to DeepThought2]

As Bluey-1 has explained , GCA patients are not routinely offered Actemra in the UK, only if it’s a difficult case and other drugs aren’t helping, and then only for a 12 month period.

[Judywalks]

I have been off Pred for about 9 mths and off Methotrexate for about 3 mths now. Had PMR then GCA which started in 2013. It has been a difficult journey with ups and downs and difficulties with the Rheumy.However I can say now that for the last month have more energy and am finding I can do more now.

I am just beginning to feel more hopeful that I am in remission. I wanted to stay on Methotrexate longer but I have been having recurrent UTI s which require Antibiotics.

cI

[-xtine]

In April 2017, at 73, I developed GCA. With the help of an NHS leaflet, PMRGCA and my local group, I realised I should not rush to reduce Prednisolone and I might put on weight. I adopted a Low Carb Diet and saw a Rheumatologist. He said I was sensible and was happy for me to reduce slowly from 60mg. The diet helped me loose a stone. I did have a wobble at 7mg.

It took until August 2021 for me to take my last dose of Pred. The Rheumatologist was delighted that I had not not needed a steroid sparer. Since then, I have felt as normal as I ever did despite having Covid.

I hope you will regain your stamina in time.

Best wishes

[Bluey-1 in reply to -xtine]

Thank you xtine and everyone for your words of encouragement. It’s a difficult time of year when you reflect on things and feel things are never ending. You give me hope.

[Temoral in reply to -xtine]

A really positive message. Thank you xx

[Den73]

This is to all the helpful encouragement given on this site......it is so appreciated especially atvthis time when its proving difficult to get appointments with rheumatologist now and left with a feeling of abandonment, especially when its quite a new condition and not sure what to expect....so a very big thank you for the support I personally have recived. Found this info on GCA very helpful! Xxx

[AlamedaCounty]

I was diagnosed in Nov 2021 and came off Pred in the Summer of 2023 but had to go back on. However, on 3 mg a day I am back to the gym, walking etc. Occasional days of not being too brilliant, but generally enjoying life again. Listen to your body; don't push too much and enjoy everything you can do - and good luck! It seems such a variable condition....

[Nominem]

I finished with prednisone in September 2023 after a GCA diagnosis in December 2021 and have been ok so far.

[Preacherball]

I was diagnosed in July of 2021. I have had my ups and downs, primarily with respiratory issues. It's never been clear to me if that was because of the disease, or as a result of being immunocompromised on the meds. Regardless, I am off both steroids and stopped Actemra last October. So far no issues, nor any further respiratory problems. Fingers crossed...

[Grammy80]

Thanks for that post, Bluey-1, you express the feelings of many including myself. Though you were asking a question....you told the story of GCA; bumpy, unpredictable but hopeful. It is like a rollercoaster because life happens just the same. We have other medical issues or stressors that take their toll.

I was almost at my best in four years when everything changed ...temporarily. I'm on my way back there and yes!! we will get there eventually. Life as we knew it shall return...and if it requires an occasional nap; that is ok. Be good to you💞💞