Relapse and dose ?

[Rajuguide]

My wife for gca. , 5 months back Started prednisone 60 with actemra weekly she was improving till 9 mg got flare went up to 10-12.5 and lastly on 40 mg as per dr advice , she felt ok for 2 days , now again symptom headache,pressure on eye started , my question , IS THIS COMMON ? will she have to go back to 60 mg or higher dose that too with little hope ? Or only have to continue suffer as no solution , (she is under treatment of two rehumotologist, two eye specialist .)

[SnazzyD]

It is possible Actemra doesn’t counteract all of the inflammatory substances involved in her condition. There are different ones and Actemra just deals with Interleukin-6 not others and if that is the dominant one in her case Actemra should be very effective. If it isn’t, then it may not be as effective as hoped. The reason Pred is so useful is because it is more general and less specific and affects other ones too. There are down sides to it as we all know, but it is very good at what it does. I would be asking, now the dose is back up again, if it can be reduced more slowly more in line with a normal reduction as if Actemra isn’t there to avoid a third start from the top. The other question is, has she been scanned for other causes that Pred may have masked and which Actemra would be ineffective against?

[Rajuguide in reply to SnazzyD]

I am glad , you have share your knowledge of actemra medically and it’s limitation . 🙏

[DorsetLady PMRGCAuk volunteer]

Hi Rajuguide,

Sorry you are back again to ask the same question you asked 6 days ago. We said then that your wife needed to go to a dose that stopped her headaches.

What that dose is depends on her GCA and her circumstances ….but for anyone with sight issues the minimum is normally 60mg.

You really need to be speaking to her specialists - and urgently - we can only advise, they are the ones who can increase her medication.

As for “is it common?”…. If the GCA is not treated with enough medication, then, yes it is common to flare…..and certainly within the first 6-12months.

[SheffieldJane]

I would definitely prioritise the eye specialist and encourage your wife to see them for a thorough examination . I occasionally get an awful bursting sensation in my eyes - helped by resting them in a darkened room and heated eye masks. I also see my very well equipped Optician every few months for signs of damage to the optic nerve, glaucoma and cataracts amongst other eye conditions. I have dry eyes and use artificial tears. I have PMR/GCA/LVV. Having discounted the very serious things, I find that I have to manage the side effects of Prednisalone which can, confusingly cause headaches too.Just a thought but she may have to bite the bullet and take the advice of her lead specialist on whether a higher dose of Prednisalone is indicated at this stage. The top priority has to be her eyesight at this stage. Best wishes!

[Sharitone]

Your poor wife. She is really suffering. It is very disappointing to have to increase pred again, particularly at those higher doses, but if 60mg worked for her, and 40mg doesn't... It was the same for me at the beginning of GCA. As others have said, she need to speak to her specialist about her dose, and not wait for any further problems with her eyes; maybe 50mg will do the trick?

[cycli]

I never had more than 40mg for PMR and GCA. I thought I had it controlled and started to reduce. It too 3 months to get under control at 40 mg with the constant pressure and headaches, although much milder than at the beginning. I was very lucky not to lose sight. At 22.5 mg reduction I had a flare nearly 4 weeks ago nd although I have increased the dose back to 32.5 I am still with very slight eye pressure and temple headache but manageable as they only come on when tired at the end of the day just before the next dose of pred. It sounds like your wife needs a larger dose than 40 to suppress it.

[Carver63]

hi Rajuguide i was on the same path 60 mg pred down to 20 and then massive flareups. a year ago i started with Actemra. it has not always been a steady decline with Actemra and pred. i was down to 6 mg Pred and then had another major flare caused by some other activities (Covid Jabs and dental surgery ) went back to 30 and i have been tapering downward since may to be back at 6 mg. Actemra i believe has helped in the stabilizing the loss of Prednisone in the system and i am feeling pretty good most days. my rate of getting of pred is 1 mg per month since getting to 10 so my body seems to be handling the situation ok. other side effects like digestive disorders, swelling and high heart beat rates are now virtually all gone. however it seems that any stress to my body (injury or surgery or vaccination tend to restart the flare conditions. so stay careful and watch what you do as you go down the Pred dosage path. I don't seem to have any real side effects from the Actemra injection but i do feel the drug rush through my body for the first hours or so. 😘👍

[nallufl24]

I do not take Actemra but I did have a relapse when I got to 10 mg. Prednisone. Doctor took it up to 40mg. I was still getting headaches and was very scared. The headaches went away in about 2 weeks. I’m fine now. Really don’t know if headaches were from GCA or from the prednisone

[DorsetLady PMRGCAuk volunteer in reply to nallufl24]

GCA - Pred doesn’t normally give headaches.