GCA exhaustion and joint/muscle pain

I was diagnosed with GCA a year ago and would be grateful for some advice please. Is it normal to feel so exhausted I can hardly put one foot in front of the other most of the time or maybe it’s the steroids? I’m on 13 reducing to 12 on Dead Slow. I’m also experiencing joint pain in hips and knees and muscle pain in my legs which doesn’t help. Thanks so much, this forum is such a help.

[PMRpro Ambassador]

Normal - no, Usual - maybe. Common - definitely.

I assume you are pacing and resting appropriately?

To be down to 13mg after only a year with GCA is pretty speedy - and my suspicion is that you are one of the people who has GCA plus PMR symptoms, which MAY be a sign you have LVV (large vessel vasculitis) which is inflammation in the large vessels in the trunk. Have you ever been free of thse symptoms? If so - at what dose did they appear?

[Hidden in reply to PMRpro]

Thank you PMRpro. I think I’ve had them pretty much all the time with just the occasional reprieve so I can’t link it to any specific dose.

[PMRpro Ambassador in reply to Hidden]

Have you read the fatigue post?

healthunlocked.com/pmrgcauk......

Fatigue really is part and parcel of all autoimmune disease and some people find pred can cause it too. Others get the Duracell Bunny effect - I can't say either happened to me but I have had the overwhelming fatigue due to methotrexate and I had to stop it.

[Hidden in reply to PMRpro]

Thank you so much. Reading your links I think this could be a big part of my problem so will try to slow it all down. I’ve had a difficult few weeks worrying about family members as well so that probably hasn’t helped either. I hadn’t considered the mental aspect of pacing at all.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Mental side is as important as physical in our illnesses - and any autoimmune illness really.

PS - forgot to say just keep eye on hip/knee/leg pain, could possibly be beginnings of osteoarthritis. At higher GCA doses they would have been masked. Unlikely if they are bilateral, but one never knows.

[PMRpro Ambassador in reply to Hidden]

Mental and emotional stress has a major effect in a/i disorders and very few people take it into consideration

[Hidden in reply to PMRpro]

Thank you both for your wise words x

[AncientMariner in reply to Hidden]

There is definitely a Psychological link between autoimmune illnesses and symptoms flaring. I worked in a fairly stressful environment and when this peaked I would almost inevitably break out into cold sores on my lips or Psoriatic patches. I am a great believer that our bodies react to all forms of perceived attack including emotional and the trauma of war is passed genetically through generations.

[HappyDiamonds]

I could have written this post myself as Im exactly the same although now on a much lower dose at 5mg. It started for me around the 13mg dose and I was diagnosed with Osteoporosis and Osteoarthritis which was a great shock to me. I was told the high dose of Pred we take for GCA had been masking the arthritis. Yesterday I had a lovely bouquet of flowers delivered and although they are in water I still haven't had the energy to put them in a vase properly. All this week I have been posting about muscle pain in my legs, Rheumy I saw on Monday said its muscle wastage caused by Pred and less activity. Sadly I don't have a solution but do share your frustration and offer my sympathy as its not easy is it? We all think that as we get lower on Pred everything will get easier and our problems will disappear, if only......

[Hidden in reply to HappyDiamonds]

Thank you for replying HappyDiamonds it really does help to know I’m not alone but I’m sorry to hear you're suffering too.

[Flosy in reply to Hidden]

Hi.yes have had this aswell.its makes me very lazy at times.i am with you.

[Susan1705]

Hi, I have PMR (3years 9 months) and GCA (12 months). I get insane fatigue with the GCA which I only had with PMR before I was diagnosed and when I have flares. Currently on 10mg pred and 20mg methotrexate and am stable for now. It is so hard to unpick the symptoms sometimes as they overlap so much. It sounds like you also have PMR as well as GCA

[KASHMIRI1]

Good morning l have exactly the same issues your are describing. I started on 60mg of pred two years ago and am now on 11.5 going down to 10 before l start methotrexate. Which the rheumy says will make reduction of pred easier. Leflunomide didn't work out for me. I have had three flares in the last two years. My current pain levels in the areas you describe this morning are very bad. I have a dexa bone scan next week which should flag up any issues. Also my gp has referred me to a physio who has given me stretching and muscles strengthening exercises. Hopefully to help with hip and muscles pain. I also seem to be pulling muscles very easily at the moment. Have you got a gp who would help you.? I find my pain and tiredness issues are made a lot worse by stress especially family stuff. They don't seem to quite get how difficult have an autoimmune problem is. I hope you can get some help.

[PMRpro Ambassador in reply to KASHMIRI1]

"Which the rheumy says will make reduction of pred easier. "

No guarantees - all depends. It works very well for some patients - not for others. But you have to try to find out if you are in the "responder" group. And it has adverse effects too.

[Greytree in reply to KASHMIRI1]

To help family and friends understand you can share this simple, short “storybook” with them. The brilliant author is Christine Knippenberg: read.bookcreator.com/B0azEx...

[KASHMIRI1 in reply to Greytree]

Thank you very much.

[Hidden in reply to KASHMIRI1]

Yes I’m lucky with my GP, he diagnosed GCA and does seem to have a handle on it. I do stretches every day but perhaps a good idea to ask about physio. This is such a shock isn’t it, I’m sure most of us were relatively fit and active and then wham the gorilla arrives.

[KASHMIRI1 in reply to Hidden]

Thank you for your reply. I am one week into stretches starting on alternate days and ten minute walks hopefully it may make a difference. It's not easy though is it? When you have been very fit.

[Flosy]

Yes that is very true.good luck.