Headache, some jaw pain.... Phooey!! # &#@%^

[Grammy80]

I had written I'd been in the hospital with a bad infection and it seems to be taking me a long time to bounce back. PLUS, for the last 4-5 days I've been experiencing some jaw pain and jaw sensitivity. I've had a headache 'forever ...I know I had it June 3 and I've been taking Tylenol every day.

Wondering....the rheumy took me off Actemra because of the infection and I have remained at 14mg of Pred each morning. My instincts tell me I should increase it but wondered by how much and for how long? Could the lack of Actemra be making these other symptoms worse? I did call the Dr. today finally but did not hear back. My GP had me make an appointment with a neurologist also because I've been having some focal seizures. While getting the IV infusions of antibiotics, they were pretty frequent for a few days and have now settled down to 4-6 a day...they only last seconds, but I haven't had them for years.

I just feel like a mess!!! and I'm hanging on to your apron strings. How many stones do I want to look under? When I think of some of my senior heroes on here...I should turn over every single one. Sometimes I don't feel I have the energy~💖

[Bcol]

Morning Grammy, not going to try and help with the medical thoughts, far more knowledgeable people than me will be along once they are awake. Did wonder though, when you had these focal seizures in the past can you remember what caused them then. I suspect you will look under as many stones that you need because that is what you do. Absolutely tipping it down with rain here, at the moment and it looks like it ain't gonna stop soon which is bit sad as I will be walking the bowwows in about an hour!!

[SheffieldJane]

I agree that this sounds like a GCA Flare and if Actemra IS NOT AN OPTION FOR YOU ( not shouting, just being emphatic). Then you need enough Pred to control these symptoms, dismaying as that is. What about 20 mgs to see if it does the trick? After all you have been through, I would go to the emergency room if your regular doctors are so inaccessible . Please let us know how you are. This does not sound good to me. Every time I try to get below 10 mgs of Pred I get pain over my right eye. I have a Tocilizumab injection fortnightly because I was feeling so rotten - without supervision. I am coming to the end of my year’s allowance - what then? Xx💖

[Grammy80 in reply to SheffieldJane]

Thank you, Jane, Actemra is off limits at the moment because of my propensity for infection. 💖

[SheffieldJane in reply to Grammy80]

Keep us posted and please have your symptoms checked out.💖

[DorsetLady PMRGCAuk volunteer]

With your history, and sounding very GCAish, I think you need a visit to ER - much as you probably don’t want to. … but if not, maybe an increase to 20mg at least until you get medical advice.Please let us know how things go.

[Grammy80 in reply to DorsetLady]

Thanks....that is what I fear as well, I will try the 20 since no doctor will be available over the weekend. If it gets worse I would go to ER. 💖

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Please do, and keep us up to speed!

[Grammy80 in reply to DorsetLady]

I shall report in....I am so grateful for all of you~💖! I told my husband without all of you, I would feel adrift in the ocean. I like my rheumy....but I think my GP is just not that well acquainted with GCA. I think I am going to have to find or look for, another?? Hope he/she is out there. 👩🏼‍🤝‍👩🏼👩🏼‍🤝‍👩🏻👭👩🏻‍🤝‍👩🏻👩🏽‍🤝‍👩🏻👩🏽‍🤝‍👩🏼

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Many GPs aren’t…..as you know from mine! They are better with PMR, but only because they see it more often.

[jinasc]

Could be lack of Actemra, but do as DL says and get along to ER. Try the 20mg today, if you must, no improvement - then off you go. Do not try Actemra again please.

[Grammy80 in reply to jinasc]

I will let you know tomorrow. When Actemra was mentioned back in 2019 it was a desperate move because I have a history of diverticulitis and stomach bleed....but it has been infections that have made the rheumy stop it. No, I'm not interested in it again...it was given to me to reduce prednisone. I've reduced but seem stuck at 14mg...I'm really ok with that given my other options. xo💖

[PMRpro Ambassador]

IF you were at a reduced dose BECAUSE of TCZ and you take the TCZ away - the chances are that the reduced dose is no longer enough ...

[Grammy80 in reply to PMRpro]

Back in 2019, they gave TCZ to help me reduce from 65mg methylprednisolone per day...I was switched to Prednisone this year to facilitate tapering while still taking TCZ weekly. I got down to 10 and had to back to 14mg per day. When he stopped the TCZ, he did not increase the pred, so I will try 20 mg. Thank heaven for all of you. 💖 Right now, my brain feels like scrambled eggs~

[Luciejc]

I am now back to weekly Actemra injections. My doctor tried every other week because my liver enzymes were up. I was miserable without the shot and did pick up my Medrol a bit. Back down now that I'm on weekly Actemra again. In my case it wasn't a flare but effect of tapering Actemra. Think of you always and know that if anyone can fight GCA it's YOU!!

[Grammy80 in reply to Luciejc]

Thanks for your support! I can fight it...but there are days I wonder if I'll survive it.😜 Keep on plugging away!💖