Me again with a moan sorry in advance : Hope you nice... - NRAS

NRAS

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Me again with a moan sorry in advance

Vonnie10
Vonnie10

Hope you nice folks are doing ok.. i hate to be like me me me all.the time on here but here I go me my dilemma is I cant have the ritx no more due to cv but doubt it worked as well.this year it's a bit like puzzle this RA so i had a steroid injection last Tuesday and my meds have been changed to tocilizumab injection now my anxiety is creeping back in induced from the steroid what do you lot do about induced ocd anxiety ? Oh how I hate this disease. Any advice please.

Kind wishes and regards to all who are in my boat. Xx

24 Replies
oldestnewest

I'm on steroids and TCZ is without doubt the wonder drug for me ! Changed my life also RA has been downgraded in the high risk for hospitalization factors for covid 19 . And interestingly steroids and TCZ are hospital treatments for covid!

Feel better soon and lovely to hear from you x

Hannah44
Hannah44 in reply to allanah

what is steroids and TCZ, sorry cannot figure out what kind of "wonder drug" it is.

would like to know. thanks.

allanah
allanah in reply to Hannah44

Tcz , short for tocizilumab ! And steroids really help me very quickly

Vonnie10
Vonnie10 in reply to allanah

Hi al tocilizumab is my last drug we mate I hope.it works for me like.it as you..would be a life changer xx

allanah
allanah in reply to Vonnie10

Fingers crossed. I find the infusion better than the injections personally, for me .

Vonnie10
Vonnie10 in reply to allanah

Al I have all my Hope's pinned on it I didnt realizes they were using tocx with steroid as part of covid treatment how weird all.these RA drugs are been used. Was tocx your last drug to.try ? Ah mate I hope it works for me..xx

allanah
allanah in reply to Vonnie10

Yes I'm on TCZ infusions monthly, Leflunamide daily and prednisolone orally daily. Good luck

I hope it works well for you. I’m sorry as it sounds like you’ve tried many that haven’t or maybe had a combo of tried some and others you couldn’t try they weren’t seemed suitable. Fingers crossed for you. 💗

Steroids mess with my head . Have yet to find a way to deal with it . Would also be interested in how to deal with it.

Vonnie10
Vonnie10 in reply to J1707

O have some extra strong CBD oil may give that a go .x

Like you steroids give me high anxiety (the family run for cover when I’m on high doses 🤣🤣) Personally for me listening to relaxing music helps, or anything you like to do just to divert your mind from the anxiety and shakes. Unfortunately sometimes it’s a case of going with the flow until it passes. Hope you feel better soon 🤗X

Don’t worry about being all me, me, me, everyone else here is too 😂 I think if you know steroids affect you so badly then I would avoid them, but if it’s only mild then as Angelmar suggests I would try and find some distractions, do something nice that you enjoy. What do your rheumy team say about it? I hope it passes soon🤗

Vonnie10
Vonnie10 in reply to KittyJ

Hi I cant avoid steroid jabs unfortunately oral are even worst it's either be crippled disabled type of thing whilst I'm waiting to start ne tocilizumab or anxiety the pain is bad nd stiffness worst it's just steroids is the lesser of this crap..nothing shakes my anxiety off it get worst before it gets better then wears of n 6to 8 weeks then I'm.back to stiff and pain ..my Hope's are all.pinned on the last RA drug tocilizumab otherwise I am snookered hate it mate with a passion..could.have went without the jab but my sister passed away at home 3 weeks ago 1 week of nursing her before she passed at home.i was destroyed with pain burning on fire in my knees and stiff joints new I had a funeral to sort i.had to have a steroid t to be able to manage the arrangements.. tried yin yoga and head space does not work really.. mate I hate this disease with a passion..

KittyJ
KittyJ in reply to Vonnie10

I’m sorry to hear that Vonnie, no wonder you are suffering so. How long until you start toxilicimab? I hope it’s not too long and it works quickly for you x

Vonnie10
Vonnie10 in reply to KittyJ

Kitty dont have a date at all thinking if giving them ring sooner the better but who knows with the covid everything must be double as long .. rang my gp see if he can give me some beta blockers my bo is up now heads banging no fun is it ..if people who knew what we go.through then they would not say I've got it in my life finger blah blah ..its a lovely day so enjoy the sun. Xx

KittyJ
KittyJ in reply to Vonnie10

Yes I’d give them a ring, we seem to have to chase up a lot of things at the moment. X

I know just what you mean! I can remember getting terribly anxious that the car would be run into after leaving it in a lay-by at the side of a road. Completely irrational. And waking up in the night with a panic attack without being able to remember the dream that set it off...

You might find some helpful tips here:

mind.org.uk/information-sup...

Vonnie10
Vonnie10 in reply to oldtimer

I did try the yoga breathing and head space not really that useful.soon as I stop my BP is raised nothing to be done but ride it out have the hub kids up nthe wall.. it's crazy what this disese does to us ..hard work. X

May God Bless you! No wonder you are stressed. I hope you find relief with new meds. This is where you tell it like it is and people understand. May God hold you in the palm of his hand. Dear lady.

Vonnie10
Vonnie10 in reply to Empress30

This is so lovely thankyou x

5 hours ago

Oh Vonnie, it's always tough. Hope the memory of your sister will become a treasure.

May God ease your pain in your loss and your disease. I pray for you.

Vonnie10
Vonnie10 in reply to Hannah44

Thankyou I have lovely memories of me and her she was my bestie x

I am so sorry to hear how difficult things are for you right now. I am really pleased that you have been able to share this with us.

I really do hope that your new meds can be started sooner rather than later but appreciate it can all take time. Hoping the steroid injection brings you some relief too! Thinking of you and sending lots of gentle virtual hugs x

Thankyou. X

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