Ritx

[Vonnie10]

Hi. So as everyone’s rituximab been stopped I’m sure I seen read on here someone had it few weeks ago.. I had a phone conversation with the consultant today told to still shield due to ritx been on the list of covid drugs and they will be changing my drugs in July.. she also said steroid can enhance anxiety.. it’s like pushing a snowball up a hill sometimes I’m telling her I don’t have or never have suffered anxiety and to the degree it went to.. she still insisted it’s enhanced it.. I give up.. and to stay of steroid of any type.. I was little confused I thought the injection cortisone is different from tablet prednisone..? How come they treat everyone the same my body reacts different to the next person I told her 6/8 weeks after steroid I get anxiety could it be a withdrawal symptom she says no it would be well out my body by then.. it’s all to much of a coincidence to me..they need to look at me individually.. so no better of change drugs and stay in..hate it all.

[AgedCrone]

Your Consultant could be right Vonnie...I now have Rtx without the methyl Prednisolone....I had the most dreadful anxiety attacks & hallucinations...48 hrs after the infusion .I have never been anxious & certainly never had hallucinations...but I was taken off all steroids after that nasty reaction,

I have not had Pred for about 15 years, but I used to be able to take Depomedrone & Kenalog.......but the steroids together with Rtx was one step too far.

I am having a single Rtx infusion next month....without the steroid,

I hope you get to the bottom of what is happening.

[Vonnie10 in reply to AgedCrone]

Hi A C it’s got to be steroids it’s all to similar I think maybe it’s when it’s wearing of I get this ocd anxiety thought at one point I was going to end up in the mental health crisis team it was that severe.. she said in July maybe the ritx without methypred is ok..maybe some other drug.. ac just can’t get a handle on my feet and ankles been the worst my knee is another tale most likely osteo in the knee.. but the feet are relentless.. I’ve never been the same since I got diagnosed 4 year ago my hands are settled but the feet are in unbearable all of the time . Is this just part of the disease ? I see people on here doing good I get envious and wished it was me..how sass that. I’m in. About of a downer can’t get rid of the pain.

[AgedCrone in reply to Vonnie10]

I don’t know how old you are Vonnie, but I seriously thought I was descending into dementia..... I would look in the mirror and I wouldn’t recognise myself. I couldn’t stop shaking at one point & I was convinced I was developing Parkinson’s disease, and it wasn’t until I actually said to my rheumatologist I’m going to give up on the rituximab because although it really helps me I think it’s driving me mental...that I got sorted

I have had the same rheumy for 15 years, ..so he really knows my ups & downs.

After looking through my records & seeing how often I’d had “funny turns” after steroids...He said It looks as if you have had such bad experiences with prednisolone I think you possibly have a steroid, psychosis and we will try your infusions without the methylpred...& so far so good.

I too suffered really badly with my ankles, but after 7 years on Mtx,& now Rtx since 2016....I’m doing OK.

So hang on in there..... it can take a good while to get sorted. Maybe I’m wrong but it seems that you don’t get on terribly well with your rheumatologist ?

Do you think it would be possible to ask your GP to refer you to somebody else? A change of doctor often works wonders

[Vonnie10 in reply to AgedCrone]

We did have that discussion last year I was saying the ritx had sent me mad she was no it’s not the ritx so we tried again this year so it must be the steroid she says I can have without steroid but that’s if it’s even worked this year properly I’m flaring at times feet and ankles have never been pain free . .AC it’s complicated..I’m 54 fell 99 .She is ok I’m just frustrated cos I can’t get a handle on it. causing depression can’t get out and walk and things ..she doesn’t bother me either way I know how I felt.

I witnessed a lady with steroid psychosis it was awful paranoid and angry shouting at us a bit like dementia patients it must have been awful for you god bless you..

[AgedCrone in reply to Vonnie10]

Luckily it was caught before it went too far...as soon as rheumy recognised it I was put on tranquillisers just fof a few days.

But tbh I think it took me ...way back ...about 5/6 years before I felt I was getting anywhere....so do try to accept you are on a long journey to find the rights meds to suit you.

[Vonnie10 in reply to AgedCrone]

Thanks AC it’s along road isn’t it ? I will get there I think this covid is adding to delays in treatments..we all have to be strong.. I debating if to sell up and downsize to one level it’s getting harder to look after garden and outside area are huge.. I think that’s adding more stress to me we will see. Thanks for taking your time with me I appreciate it. Xx

[AgedCrone in reply to Vonnie10]

Would really recommend that you find a nice bungalow....I heartily wish I had done it when I was much younger. Now I can’t face it and have decided the bed 🛌can go in the dining room if I can’t climb the stairs or I will buy the latest model of a stair lift...

Might give me something to do on stormy days like today....ride up & down the stairs!

But a little tip once you are 60+ AgeUk have all sorts of help.

I have used their gardeners for years to tidy the garden in the Spring,

then tidy up for the winter.

But the best move was getting rid of the lawn and having Astroturf - it looks exactly the same as my next door neighbour’s garden and I do nothing to it at all!

But just try to stay positive..I do know you think things will never get better....but one morning you WILL wake up & it will hurt a bit less.....then you go on from there!

So get on Rightmove & see if there is anything you fancy!🏡🏘

[Vonnie10 in reply to AgedCrone]

AC my garden was full of big massive borders when we bought 6 year ago they’ve all gone last big one went this year it’s all-low maintenance now but big front side and back.its adorma bungalow bathrooms up and down. Like you I can have a bedroom downstairs in the future don’t fancy a stair lift.. .I just find it’s to much now I know it will get harder..trying to persuade him we need smaller lots of lovely flats up by me with big balconies that’s would suit me.. I would love to just have a balcony . With a few nice pot plants and a nice glass of wine like your on holidays ..Rightmove is my nightly read.

[mille]

I had my rituximab infusion last week so they are still going ahead where I am. Temperature is taken beforehand

[Vonnie10 in reply to mille]

Hi. Il that’s weird I spoke with the rhem doc yesterday and she said no at the moment. Covid ..Must be different in different hospital I’m not due until July but I’m having flare up so I’m not sure will wait and see.