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[Tj2017]

Hello All,

I have not been on this site for several years. I was diagnosed with GCA and PMR back in 2016/2017. Life has been stressful…our neighborhood burned down and our house was the only one which was saved by the fire department…only until this year a huge redwood tree (8ft in diameter) fell on the house and split it in half. Yes, my husband and I were in the house and were not injured. Shortly thereafter I got Covid. I tested positive for over 30 days. Afterwards/during my GCA and PMR symptoms returned. I had only been off of Prednisone for 8 months. My inflammation markers are rising even though I went back on 40 mg Prednisone. Next week I will start Actemra. Just curious, did anyone else have a re-occurrence of GCA and PMR? How did it go?

Thanks for your feedback.

[PMRpro Ambassador]

Welcome back - though I'm sure you don't want to be here! And what a catalogue of stress and horribleness. Hugs for all of that.

There are some on here who have had a couple of "doses" of PMR and even GCA and I know of several more. Everyone I know says the two episodes were very different - and some even find things change within an ongoing course of PMR/GCA if they flare for any reason. There are also several now who were getting to lowish doses of pred after a diagnosis of PMR and then GCA /LVV raised its ugly head - and that seems to be similar to what you are experiencing.

The underlying cause of GCA and PMR symptoms is an autoimmune disorder - and it is very unusual for a/i illnesses to go away entirely, they may go into remission, but it is believed the propensity for the immune system to go haywire remains for life.

However - if it was only 8 months before the symptoms returned - and with a situation like you had, I'm not in the least surprised it happened - I doubt that it ever really went away. It isn't unusual for people to manage to get off pred and then within a few months it becomes apparent that the real disease activity was at a very low level and there wasn't enough inflammation being created to feel symptoms as long as a very low dose of pred was being used to scoop some out on a daily basis but no pred left it to build up like a dripping tap fills a bucket and it eventually was felt. Six to 7 months is seen quite often. But this time - it sounds to have morphed a bit.

How it goes does tend to depend on where you live - when it is PMR, then Actemra is rarely an option unless you are in the USA. In the UK Actemra is offered for relapse - but only for a year which, it seems to me at least, is patently not long enough, But it doesn't cure either - it is just a particulary effective steroid sparer that really does get patients off pred. As long as they keep taking it until the underlying disease process burns out that is.

[Tj2017 in reply to PMRpro]

Thanks PMRpro for your response. I went back on prednisone when my PMR symptoms flared up and I had difficultly walking. Unfortunately even on prednisone my inflammation markers are rising, so the choice is actmera (yes I am in the US). So we will see how it goes. My husband retired and we decided we won’t be moving back into the house…too much scary history. I want to feel better so we can travel, relax and enjoy life during this phase. I am looking forward to getting off prednisone. I hope all is well with you and your family.

[PMRpro Ambassador in reply to Tj2017]

I've certainly found Actemra effective in reducing the pred - but stuck at 5/6mg, adrenal function more than PMR but after 14 years on pred it was never going to be easy.

Hope your next steps go well. But don't let the desire to get of pred blind you to a possible need for SOME pred. Rising markers on 40mg of pred does suggest more than "just" PMR - and you don't mess about with GCA.

[Sophiestree]

Wow, that's a lot! No wonder you have symptoms returning. Can't imagine how you cope with all of that stress. Hideous for you.

[Tj2017 in reply to Sophiestree]

Thank you for your kind words. We have been fortunate to locate a nice place to live and the insurance is covering all the expenses. There were over 24 homes that had trees fall on them during that specific storm, referred to as a cyclone bomb. Two fronts collided which created mini tornados. Very rare and uncommon. Such is life! We won’t be returning to live in the wonderful house it once was (25 years we lived there). We are looking for our new forever home.

[SheffieldJane]

What a horrific story. I am so glad you survived!

[Tj2017 in reply to SheffieldJane]

Thanks for your reply. It was very scary. We won’t be moving back. We are looking for our new forever home for retirement.

[Strelitzia]

Wow….that’s a lot of bad luck! We’ve had wildfires in the neighbourhood too. So far have escaped them. I am taking Actemra for a second year as my rheumatologist says it is to ensure the original bout of GCA does not reoccur. My first rheumy told me Actemra was to get me off prednisone quickly and completely, but my new rheumy says take the lowest dose of pred that manages the pmr and the Actemra is for the GCA. Seems to work! Fingers crossed.

Good luck!

[Tj2017]

Thank you for you reply. If you don’t mind, I have a few questions. What were (are) your symptons for GCA? Did you have a biopsy? I was diagnosed with GCA, I had terrible temporal pain (I couldn’t sleep on my side), double vision, scalp tenderness. I also had terrible fatigue and often had a low temp. Eventually, PMR kicked in and I couldn’t walk, my knees burned, neck and shoulders were very painful and in some cases useless. Now, I am experiencing these symptoms again yet I am not sure what relief Actemra will provide. Thanks for your feedback.

[PMRpro Ambassador in reply to Tj2017]

Actemra will, in theory, provide almost total relief quite quickly - it diverts the cytokine IL-6 (an inflammatory substance) that causes the inflammation in the tissue by occupying the receptors in the tissues that IL-6 needs to exert its effect so there is no room for the IL-6. How quickly does vary but you should really be on enough pred to relieve the inflammation at the same time. The Actemra can take some time to develop its full effect, my rheumy said to wait at least a month before trying to reduce the pred dose and to reduce slowly (I have been on pred for years). In terms of the PMR it took a few months to get to full effect but I was able to taper easily at the higher doses with absolutely no PMR problems. My problems getting really low are adrenal function-related.

Strelitza's rheumy's comment about "it is to ensure the original bout of GCA does not reoccur" makes no real sense - the Actemra has no effect on the disease process, it merely deals with the IL-6 that is being produced to stop it taking effect. Nor does the "take the lowest dose of pred that manages the pmr and the Actemra is for the GCA" - Actemra also works for the PMR. If it doesn't work 100% for someone it is because there are at least 3 different mechanisms producing the inflammation in GCA and, presumably potentially also in PMR. Actemra only works for one of them, the one involving IL-6, as biologics are extremely specific in how they work. If YOUR GCA involves one of the others - you will need some pred for them. Same for PMR. But for at least half of patients - it works fully.

[Tj2017 in reply to PMRpro]

Thank you for your response. I have not started the Actemra due to insurance issues. I have now received 4 doses and start this weekend. I am getting a little frustrated with the temporal, ear and jaw pain, as well as the PMR issues. Prednisone and I don’t get along well..so I am hopeful. It is also difficult on my family and I feel bad I can’t be there for them, especially with rebuilding the house.

[DorsetLady PMRGCAuk volunteer in reply to Tj2017]

I am getting a little frustrated with the temporal, ear and jaw pain, as well as the PMR issues.

To be honest I would be getting more worried than frustrated with the GCA symptoms -hope the Actemra soon sorts them out for you.