Hello - I'm interested in other GCA experiences

[BladesLover]

Hi. First time I've posted. I was diagnosed with GCA in February 2024 following hospital admission. It took medics a while to work it out but, once they did and started me on Prednisolone, my symptoms quickly improved. I returned to work early April and things seemed to be going in the right direction. However, when the Pred got reduced and I started on Methotrexate, I started to feel more tired again and symptoms started returning to some extent. The Pred got increased again and I was switched from Methotrexate to Tocilizumab. There then followed a short period (less than a week I think) in which I mistakenly under-dosed on Pred (tablet amounts changed with new prescription and I didn't notice). It culminated in me having to go off sick again in early July. I'm currently still off. I'm now on 15mg daily Pred and weekly Tocilizumab injections. I still get a lot of fatigue - also general low energy and mood (taking Sertraline for mental health, which I have been for a while). Had a nasty period of anxiety but, thankfully, this has subsided a bit. However, I worry about returning to work. Especially as my job is quite stressful for me. I sometimes wonder if stress was one of the factors in me developing GCA in the first place? My Rheumatology Consultant seems quite relaxed about things and seems confident that things will improve. However, it's hard to imagine at the moment and I think I was psychologically hit hard by improving for a while but then going backwards. I'm aged 60. I'm interested in other GCA experiences. Are there stories to inspire some hope out there?! 🙂

[SnazzyD]

Fear not, there are lots of hopeful stories! I’m fine on just Pred throughout and it took 3.5 years with the last year being on less than 1mg. Off Pred since Aug 2020 and still in remission.

I think the main reason for your feeling that you’ve run aground is being a bit unrealistic as to how it goes this early in the game which is very likely not your fault. Patients are not really told how it is and the impression that is given is you get rid of the symptoms and it’s a run down to zero and you try to get back to normal daily life while you wait. The good news is likely what you are experiencing is not abnormal, if unwanted. The bad news is that you are not in remission as it is early days and you have to accept that you need to take it easy and/or possibly reduce more slowly. Your treatments are a safety net until you go into remission from the autoimmune activity that can still make you tired. Don’t forget you are on powerful immunosuppressive treatment and that doesn’t come for free. You need rest and working a stressful job too may mean you will need more Pred for longer. Like many, you may need to cut work down or out to allow your body to work things out.

There are a few drivers of inflammation and TCZ deals with just one, albeit one (Interleukin 6) that has been found to be implicated in GCA. If you have others, you still need the Pred so depending on what is going on for a particular person, the TCZ may be the answer or it isn’t quite. The first year is the most likely time for a breakthrough of symptoms so it isn’t a big surprise that you are struggling a bit. It does get better but not a quickly as we’d like and life has to adapt to it rather than the other way round.

You’ll get more replies, so sit tight.

[BladesLover in reply to SnazzyD]

Thank you very much for your reply and encouraging words. Much appreciated. Yes, I think you're right with all you say. I think because I'm relatively young (? 60) and always been pretty fit and healthy so I kind of optimistically hoped that - under the medication regime - recovery would be smooth and in one direction. However, I've learned it's much more complicated than that! I think I probably need to do more research into GCA and treatment to increase my understanding. Thanks again.

[SnazzyD in reply to BladesLover]

Yep, I was 54 and very fit with a career. When one’s immune system goes berserk, (in my case due to unrelenting stress and chemo I suspect) it doesn’t care what you do in your spare time! Reduction plans on paper are a start, not necessarily the way your condition wants to go. There’s no ‘beating it’, toughing it out etc, your body needs help. Education is key with this.

[DorsetLady PMRGCAuk volunteer]

Like  SnazzyD am successfully through GCA - been in remission for 8 years. But I wasn’t at work at the time, and not sure I could have coped if I had been.

There are posts in the FAQs - so maybe have a look as well as at this intro post [if you haven’t already] - and you do need to make sure your employer is doing all they can to help you continue working… some are better than others, but it is a requirement. Please speak to your line manager. HR dept and union if you haven’t already, and maybe have a look at CAB website.

General info-

healthunlocked.com/pmrgcauk...

GCA stories etc -

healthunlocked.com/pmrgcauk....

[BladesLover in reply to DorsetLady]

Thank you very much for your reply. Much appreciated. I will have a look at the information you suggest as I think I need to increase my understanding. I guess it's more complicated than I thought (or maybe than I hoped!) My immediate line managers are very understanding and supportive so that's good for me. I've also just started contact with Occupational Health so will see how that goes. And I have the union as back up if needed. Thanks again.

[PMRpro Ambassador]

Hi and welcome - the rest I'll leave to the GCA experts who have the practical experience of having lived with it.

What I can say though is that pretty much everyone, especially younger patients, underestimate the effect GCA has on their body. It is a serious systemic illness and the medications cure nothing - they are management strategies to relieve the inflammation that causes the symptoms and allow a better quality of life. The disease activity itself is not affected so it carries on in the background and leaves you feeling flu-ey. Exertion and stress both tend to worsen the symptoms as they can influence the immune system. Too much can even lead to a flare.

[BladesLover in reply to PMRpro]

Thank you very much for your reply. Much appreciated. I suppose I am a younger patient am I in this context - aged 60? You're right - I have underestimated. Maybe because I've always been pretty fit and healthy - so I kind of thought (or more likely hoped!) that recovery would be fairly straightforward and in one direction. I now see it's much more complicated than that. I think I need to find out more about GCA and treatment to increase my own understanding. Thanks again.

[PMRpro Ambassador in reply to BladesLover]

You are younger in that you are still working - in the past most patients weren't but people, especially women, work longer now. There are people in their 50s, occasionally younger, and they expect the same as you. But it doesn't follow. I "only" have PMR, it started at 51 but it is still there after 20 years. Many of us were gym bunnies, otherwise healthy, but it still lasts for years and meant people had to give up loved careers. A few younger patients definitely seem to have more convoluted journeys, There is no way of knowing.

[Moaningxcat]

Hello, I can share my experience, so far, with GCA and hopes it helps. I was diagnosed in April 2024 after I went to the ER with lightening bolts of pain on the right side of my head. I never had such pain before. I guess I can be thankful for the pain as I was started on prednisone and the GCA diagnosis was determined quickly.

Currently, I am on 30 mg of prednisone daily and 15 mg methotrexate weekly. I plan on tapering to 25 mg next week. I am fearful of tapering, however. I still have heaviness and weakness in my arms and legs and fatigue. I’ve had a bronchial cough since I was diagnosed and it’s productive at times. I asked for a referral to a pulmonologist and have an appointment in November. I wish it were sooner! Sometimes it is difficult to tell if my symptoms are from GCA or from the medications. I find it disconcerting as there seems to be a lot of trial and error and everyone is different in terms of symptoms and treatment.

I also take Sertraline for mental health and have been on it for many years. I was in very good health and very active before GCA. I have had to recalibrate what I can do and be grateful for what I can accomplish and try to take joy from the little things. I do some meditation and have made an appointment with an acupuncturist. I figured it can’t hurt and may help physically and/or mentally. I am retired, thankfully, as I do not feel I could work at this point.

I hope this offers you some solace. I remain optimistic. This health forum serves us well and I truly appreciate the advice and sharing of information.

[BladesLover in reply to Moaningxcat]

Thank you very much for your reply. Much appreciated. Like you, I was in good health and active (running etc.) before the GCA so it's all come as a bit of a blow and shock to the system. (I am still running sometimes - more slowly and not as often). "Trial and error" is a term I've used myself often to describe how treatment seems to be because of all the variables involved. I think I need to increase my own understanding of GCA and treatment. Maybe because I've always been pretty fit and healthy, I kind of thought (or more likely hoped!) that recovery would be fairly straightforward and in one direction. I now see it's much more complicated than that. Thanks again.

[Sharitone]

You've done well to get offered TCZ so quickly in this country!

When I finally started on it , I had come down to 15mg from 60mg. I had been unable to reduce further, which is why I had been offered TCZ. Two and a half years later, I have made it down to 3mg pred, which I count as a big success seeing as I am obviously one of those for whom an IL-6 blocker is not the complete answer. Like, you, I have had some ups and downs on the way. The fatigue has been phenomenal, but then I have PMR as well

The lower you get on pred, the slower you have to go, and this may give you a more realistic idea of the possible time scale.

I wish you well with your employment and hope you don't have to join the band of us who had to take early retirement. Don't forget all the adjustments your employer can be expected to make to ease your return.

[BladesLover in reply to Sharitone]

Thank you very much for your reply. Much appreciated. I'd never heard of TCZ before it was suggested by the consultant! The consultant suggested it because fatigue and symptoms were creeping back and my bloods were confirming there was a problem after I started on methotrexate and reduced steroids. So I'm just following the consultant's directions really!

I think I need to increase my own understanding of GCA and treatment. Maybe because I've always been pretty fit and healthy, I kind of thought (or more likely hoped!) that recovery would be fairly straightforward and in one direction. I now see it's much more complicated than that.

Yes, I'm hoping to sort things with my employer (line managers have been very supportive and understanding so far) but this will have to be for the future as, currently, I'm not fit for work.

Sounds like you're doing quite well now? Really hope that's the case. Thanks again.