PLEASE SUGGEST

[GrannieD]

Hi, I posted a couple of weeks ago about my symptoms (nausea, dizzy) thoughts maybe side effects of Tocilizumab which I have been on since July 2024, dizzy symptoms have been on going since November.

Doctor (GP). referred me to urgent ENT with a 6 months waiting list.

I now have a MRI scan on Monday next, with symptoms worse, I was admitted to hospital last Thursday but released same day. I HOPE IM MAKING SENCE.

Two weeks ago I had blood test and showed neutrophils were low again, spoke to rheumatologist and he suggested I stop taking it, I asked him where do we go from here his answer…….come back when you are having flare up. I was knocked for 6 with his response, My original and very caring rheumatologist retired and this guy is new.

Yesterday my husband did the Epley manoeuvre on me (for ear crystals) I ended up vomiting for 1hr and sleeping the rest of the day and night. Has anyone else had any problems like this

THANKS FOR READING my mumble jumble.

[AgedCrone]

Do please see a physio qualified in knowing which side the Epley Manouevre should be performed.

As you found it can cause nausea & other long term problems if performed incorrectly.

It is a specialist treatment..not just twisting your head around & lying you down. .

I

[GrannieD in reply to AgedCrone]

Thank you for you response and concern, my GP has done this twice on different surgery visits with no results. Hospital doctor wanted to give me a print out of instructions (which I already have off GP. because they always mention BPPV . but my symptoms have been so much worse this last couple of days. To say I’m scared is an understatement

Now I’m not on any medication for RA for the only time in 37 years. These last few months I’ve literally wished my life away waiting for one appointment to another, I know my MRI SCAN will be another wait.

Me and him will not be doing another Epley, I know in time we will laugh about yesterday.

[AgedCrone in reply to GrannieD]

No take it seriously….it should be more widely publicised how nasty the Epley can be if done incorrectly…….but when it works it gives real relief.

I hope you get sorted quickly,

[GrannieD in reply to AgedCrone]

Thank you so much, never again at home only on hospital premises.

[AgedCrone in reply to GrannieD]

The first time I had it…performed by a professional…on the way home I had to get off the train three times to be sick.

That taught me great respect & I have always made sure it is done by someone very experienced. Thankfully not needed it recently l

[GrannieD in reply to AgedCrone]

It’s the hope of dizzy spells and nausea being resolved, 5 months is a long time and it’s so debilitating. I hope you stay well.

[helenlw7]

I can’t help you in any way, but do wonder which planet some of these consultants live on - come in when you’re in a flare!

[GrannieD in reply to helenlw7]

Yes Helen I do believe he is not happy that my GP suggested Tocilizumab maybe to blame and he said it wasn’t and that Tocilizumab didn’t cause these side effects.

Doctor at hospital said he could give me something that would help me feel better but 1 day of meds and was worse than ever, (Prochlorperazine 5mg) 2 to be taken 3 x a day.

This has proven to me that meds do not suit everyone.

[helenlw7 in reply to GrannieD]

We’re all different aren’t we. I have been on lots of different meds since diagnosis in 2004, and the only problem I’ve had when an RA med was prescribed that could cause heart and lung issues if taken with the antibiotic I’m on as a prophylactic.

[GrannieD in reply to helenlw7]

I have also been diagnosed with Interstitial Lung Disease (very mild) don’t know if it was caused by methotrexate or RA . It was discovered when I was invited to a voluntary lung scan which they were doing in our area at the time. Me, I have no symptoms what so ever but they now have me back every 6 months to keep an eye on it, 🤷‍♀️ it hasn’t gotten any worse since diagnosis in December 23.

[helenlw7 in reply to GrannieD]

I have also been diagnosed with ILD, last year, caused by the RA. I don’t have any symptoms either.

[GrannieD in reply to helenlw7]

Excellent long may it continue stay well.

[AgedCrone in reply to helenlw7]

Well that way he could see what the patient means by a flare. To A it could be the screaming Ab.Dabs to B…just a niggle!

[GrannieD]

HI. I have tonight received a text message from hospital to say that they have cancelled my next blood appointment and if I have any problems to go to GP.

[Jackie1947]

I had the Epley Manoeuvre and it was done professionally in hospital involving two people either side if the bed. I had no after effects and it worked. My husband said my eye had stopped twitching . Didn't even know it was. I had been admitted with Vertigo.

[GrannieD in reply to Jackie1947]

Hello Jackie I’m so pleased it worked for you. My GP did it twice for me with no effect what so ever, she also gave me a print out so I could do them at home, nothing worked. But over weekend my symptoms got worse and was admitted to hospital, the dr there mentioned BPPV I told him my history as he was going to give me same print out, I asked him if he could do this Epley and he said he no, health and safety stopped him. So came home and husband did it, oh dear me never again and I’m still dizzy with nausea after 5 months. Now not taking any meds for RA which is quite scary.

[Jackie1947 in reply to GrannieD]

I had physio appointment after leaving hospital with a few exercises to do. Also as a stand by my GP prescribed a tablet which I haven't needed. I think if I still had this after 5 months something doesn't seem right to me and I would want some answers

[GrannieD in reply to Jackie1947]

That’s why I’m concerned it is tocilizumab that is the problem, but maybe not. Hopefully something will be resolved soon after scan.

[Inanotherlife]

Hi there, I haven’t experienced that whilst on Tocilizumab but a few years ago after a holiday I had terrible dizzy/motion sickness type symptoms for months. I saw ENT, had a brain scan, saw a neurologist and they concluded it must be BPPV. Over time it just went. I’ve had the odd short lived similar thing since but I couldn’t attribute it to taking Tocilizumab. I hope you get some answers and resolve from it soon, it’s an awful thing.

[GrannieD in reply to Inanotherlife]

Thank you so much for your very positive response, I hope you never get these symptoms again because they are so debilitating. I really need some help one way or another. Thank you

[aliplayspiano]

Sorry about the dizziness and nausea. Sounds awful. Re tocilizumab. You mentioned low neutrophils and consultant told you to stop it. Are you on injections or infusions? I’ve been on toc for 7 years now. At first I had weekly injections but I kept getting called back for repeat bloods because my neutrophils were low. So consultant suggested injecting fortnightly and he says as long as my neutrophils stay above 1 he’s ok with that. So I’ve done that for about last 6 and a half years and although the neuts have occasionally dropped below one they mostly manage to stay just over and the toc works well.

[GrannieD in reply to aliplayspiano]

Good morning I was on weekly injections and changed to once a fortnight because of my low neutrophils, to be honest I felt amazing whilst on it apart from this dizziness/nausea. I spoke to consultant and said I was concerned it was the medicine and he said just stop it and come back when I have a flare. I now have a message from rheumatology to say go to GP if I have problems. I’ve gone to this hospital for almost 40 years. Maybe I’m looking too much into it but I feel I’ve been let go. I don’t want anymore stress .