GCA Fatigue

[Krezan]

I am in remission for GCA but have constant fatigue. I am off all medication. Is anyone else experiencing this?

[DorsetLady PMRGCAuk volunteer]

Are you sure you’re in remission? Less than 2 years is very quick...

Have a look at this re adrenals - healthunlocked.com/pmrgcauk...

Sometimes they take a lot longer to get to working than most think.

[Krezan in reply to DorsetLady]

Thank you for your reply. Here is what happened to me, I was having servere headachesin Dec 2019 and then lost the sight in my right eye, went to hospital twice and the second time told I had GCA and treated with high dose of prednisone in hospital for a week and came home on 60mg. I have 6 ulcers the this really irritated them I lasted until May and looked like i was 6 months pregnant and in a lot of pain my ulcers were so aggravated. In May I went on Actemara . I had no symptoms and I went off the predisone very quickly and just used the Actemara. I also used a Far Infrared panel everyday because it takes down inflammation I have used it for swollen joints for several years. I started having pain in the area of the vagina around August and was ended up finding out I had Vulva cancer and had to go through chemo and radiation and finished this end of November 2020. And in Feb. told I was cancer free. But I am still struggling with fatigue and have had some dizzy spells and almost passed out. I thought it was from chemo and radiation I went off Actemara because I read this :

Malignancies were observed in clinical studies of ACTEMRA. The impact of treatment with ACTEMRA on the development of the malignancies is not known, but malignancy is a known risk of biological products that suppress the immune system. ACTEMRA is an immunosuppressant and may increase the risk of malignancies.

Reporting Adverse Events If you are consulted to a see a patient with cancer at any time after receiving ACTEMRA therapy, it is important that you report the case, even if you do not think there is a causal relationship. The information that you, as an oncologist, provide about these events may inform therapy and monitoring decisions for future patients.

I have been off all medication since the end of November and Been off Acteamra since July 2020. I have had no trouble with my eye at all. But I think you are right about the Aderal glands.

[DorsetLady PMRGCAuk volunteer in reply to Krezan]

My adrenals took about 9 months whilst still on steroids to begin to work properly, but the whole system can take anything up to a year to return to normal after finishing the steroids. Plus I would say your body is still recovering from the cancer treatment as well.

Don’t know if you’ve read this, but might give you some hope for a better future -

healthunlocked.com/pmrgcauk...

[Krezan in reply to DorsetLady]

Thank you for all the help!

[PMRpro Ambassador in reply to Krezan]

I think you are maybe being a bit optimistic about the time it takes to recover from chemo and radiotherapy, particularly if there is any chance your adrenal function is still a bit dodgy. It is commonly assumed it can take up to a year for adrenal function to normalise even after stopping pred altogether, My husband needed quite a while to recover from the fatigue of chemo and radiotherapy.

[Krezan in reply to PMRpro]

Thank you I was getting very frustrated!

[piglette]

My adrenals caused horrendous fatigue for months.

[Krezan in reply to piglette]

Thank you it really helps to know you are not the only one!

[piglette in reply to Krezan]

I agree.

[VicSat]

Have you had a check for possible anaemia?

I finished my course of prednisolone 4 weeks ago, and thought the subsequent fatigue etc was an adrenal issue. My pre-operative assessment blood test on Tuesday for a right knee replacement showed boderline anemia. Iron tabletes were prescribed.

[PMRpro Ambassador in reply to VicSat]

They must check that any anaemia is not the anaemia of chronic illness - because the treatment for that is not necessarily iron tablets as that can lead to iron overload.

my.clevelandclinic.org/heal...

[Krezan in reply to PMRpro]

This is very interesting information thank you so much I am going to ask my dr about this as my red blood count is low.