Ro-Actemra/Tocilizumab Patients advice/ experienc... - PMRGCAuk

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Ro-Actemra/Tocilizumab Patients advice/ experiences please.

SheffieldJane
SheffieldJane

I am on Tocilizumab ( for GCA with Pred) ( 13th self administered injection due Friday). I have had a cold type virus for a week that seems to have eased off now. For some weeks I have had a swollen watering right eye and an infection in one nostril ( same side). I have now developed an ulcer type sore in the inner corner of the same eye with a white discharge, pain, itching and flaking skin. I sent a photograph to my GP via my phone, he is concerned that it might be the start of shingles. He has, however prescribed a course of anti- biotics.

Has anyone experienced these symptoms with Tocilizumab?

Should I stop my next injection whilst on anti-biotics? The GP didn’t seem sure but they were dealing with an influx of phone calls following the PM’s COVID broadcast. Thanks!

I will talk to my Rheumatologist when I can get her.

70 Replies
oldestnewest

Hi, sorry to hear about your problems. I have been on a few biologic drugs for my RA ( but not the ones you mentioned). It is well known one should stop the biologic drug when there’s an infection and when taking antibiotics. Your GP should really know that. It’s scary many lack knowledge about such important things. I would urge you to phone your rheumatologist or speak to an RA nurse as soon as possible explaining what you’re going through. Let us know how you get on. With best wishes.

SheffieldJane
SheffieldJane in reply to JGBH

Thank you that confirms what I thought I knew. I was surprised at his lack of knowledge too but he was flustered and distracted. Such is life these days. I have emailed my Rheumatologist and she is very, very good.

JGBH
JGBH in reply to SheffieldJane

Make sure you speak to someone in the RA clinic tomorrow. Also your GP should be educated about this! He has no excuse for being so negligent. Good luck.

SheffieldJane
SheffieldJane in reply to JGBH

I knew about the vulnerability to infection and stopping Tocilizumab if you have a “ serious infection” it’s what constitutes a serious infection? I dabbed it this morning and there was blood on the tissue, just like my nose and it is dragging on - linked to sinus I think. There also is a puffy swelling on either side of both eyes.

JGBH
JGBH in reply to SheffieldJane

Perhaps you need to go to A&E? Have you contacted your rheumatology clinic yet?

Jane, do you have a HelpLine where you can contact a Nurse with experience of TCZ?

If the GP thinks it’s Shingles, has he not prescribed an AntiViral?

Hopefully you can get some information before your due your next Injection.

Thinking of You

Angela xx

PS Can you ring your Consultants Secretary first thing in the morning?

No helpline but Sarah is very accessible. The nurse that taught me how to inject 13 weeks ago, may have said something about ringing her if I had any problems. Honestly this is worse than Pred head ever was, I have a brain like a sieve. He has said that if I develop more of the blister type sores then I have to go to eye casualty. He also wants a series of photos as it develops, or not.

Thanks Angela good point about an anti viral.

In the leaflet l’ve attached it says to stop TCZ if you’re on Antibiotics......

Telian
Telian in reply to SheffieldJane

There is a Rheumatology help line that will be able to point you in the right direction. I would call SM’s secretary in the morning to check your email’s been received.

You do need answers re an antiviral.

Hope things don’t get too bad.

SheffieldJane
SheffieldJane in reply to Telian

Big help Telian. Thanks! It is her clinic I think. So I will ring the nurse re antiviral and not do my Friday injection.

Telian
Telian in reply to SheffieldJane

It is, each time we speak she asks if I have the helpline number. They do feed back to her. Wise to hold off this weeks injection. You’ll be able to educate you GP after this!

.

SheffieldJane
SheffieldJane in reply to Telian

I have rarely felt the need to ring. Unknown territory now. Do you have the number you use to hand? I have her direct number and probably the nurse Jenny’s as well.

Telian
Telian in reply to SheffieldJane

Me too.

Helpline no is:

0113 3924444

Good luck.

SheffieldJane
SheffieldJane in reply to Telian

Thank you for this. Once I know the name of the antibiotic I will ring. In the meantime my email has all the info.

I'm on Actemra....stop if you get an infection!....and get immediate help if it is shingles. A trip to ER is called for. Good luck and I hope it's not shingles.

Jane have a look at this ~ Page 3

versusarthritis.org/media/1...

Many thanks! This leaflet rings a bell. I probably have it in my vast box of medical papers.

Oh Jane. I am so so sorry. you have had YOUR SHARE.. I have of course no advice just lots of healing energy to send your way. Hope this passes soon. My daughter did have shingles in her eye and ne side of her face but did not have anything like this... perhaps it is just from the cold? Have you had a covid test? Again hope you are much much better!

Bonnie

Thank you Bonnie! The healing energy is so welcome. I could sleep the clock round. I did a home test for COVID a few weeks back. I was too vigorous with the swab - it triggered the nasal infection. Negative, but out of date as soon as you get the result.

I stopped actemra when they put me on antibiotics they said absolutely you cannot take both together

Yes I thought that was the case. Did you never go back to it? I have got a very expensive box full in my fridge. Thanks for your input.

It did a lot of damage to my system I have not gone back on it. I think PMRpro said when it’s good it’s very very good when it’s bad it’s horrid😢 ( probably not just actemra any drug we take!)

Did you just feel horrible everyday?

Horrible situation, especially when it's your eyes......hope you get some help soon, let us know how you get on.......

So sorry to hear this. If there's any chance it's shingles you need to get a definite diagnosis asap as the window for greatest effectiveness of anti-viral is small (within 72 hours, although apparently it can still be helpful for any new blisters). Good luck!

So sorry you have had to deal with all this Jane - as yogabonnie says you sure have had more than your 'fair share' ! I have been disappointed not to have access to TCZ but I am reognising the possibility also that sometimes things can do more harm than 'good'. This may not necessarily be the case for you though and 'other' things can happen regardless of the drugs we are taking. Hope you can get all this sorted out soon though - you certainly do DESERVE to be feeling lots better by now !! XX

I was told to report any infection and presumably stop the injections until the infection clears up. I did report cold-like symptoms once but nobody seemed very concerned and I didn't stop my injections. I didn't like reporting a cold but at least I did what I was supposed to do. My cold didn't last more than a week. I don't know what to tell you except tcz can be stopped if need be. Infections are a big concern based on everything I read.

I would make sure someone does an evaluation to alleviate your concern. The possibilty of shingles would be a big concern.

I'm doing weekly injections but I can't say I actually do the injection exactly every 7 days.

Sorry ... I'm not much help.

Hello Jane, I’m so sorry to read about your current health issues. People are so helpful here, especially when they have experienced similar problems and can give you valuable advice. It can be quite scary when you’re suffering and feel that it’s difficult to get medical help from the right quarters at a time you desperately need it. I have been so frustrated with the current situation with this pandemic and being unable to see a doctor face to face, or have continuity with usual GP. I’ve found that it doesn’t help that someone you haven’t seen before has your notes, but with no time to read your history. I have been told to increase my pred by one GP and to carry on decreasing by another- difficult when having three different conditions. I have been having eye problems but there’s no time to discuss more than one problem. I was offered tablets for anxiety with possible side effects!

I hope you can have a consultation with your rheumatologist, especially as people here are offering you better advice than what you were given previously. Sometimes medications present new problems.

I hope things get sorted for you soon Jane and give you some peace of mind. I haven’t looked here for a while, as have been too involved with the fraught situation with my son as well as my own health issues. Sorry that I’m not very useful to you, but send you Love and best wishes Jane, Brenda x

SheffieldJane
SheffieldJane in reply to ClarkB

Thanks Brenda. I agree with all that you say. Eyes are precious and deserve their own appointment. My GP was very pleased with a clear iPhone photo of mine. I am taking one each day.

Hi Jane, oh you poor thing, I really feel for you. A few weeks ago my blood tests revealed that my white blood cell count was VERY low, we had been watching it but it continued to drop, so ... I am having fortnightly injections now, just had my 20th. Three weeks ago I developed an infection near my fingernail, apparently due to a blister I got pruning, it’s called parody his, and quite common. It just would not heal so I went to my GP who prescribed antibiotics. She knew about the actemra but said that for 5 days it should be OK. She rang me after 3 days and I was still quite infected and she said to continue for another 3 days. Voile, the infection disappeared but it should not have required antibiotics, apparently, and this was put down to my low white cell count. Rheumy was fine with everything, but I distinctly remember the nurse who taught me how to inject told me to stop taking the stuff if I get any infection, even a cold. Perhaps they considered since I was now fortnightly, that it would be OK. It is all fixed now. I have a completely wrecked shoulder and a recent MRI revealed inflammation around the joint. Rheumy said that with the amount of anti inflammatory in my system, I should be able to put a fire out, so she has arranged further investigation and a needle to the joint. My son thinks it is auto-immune related but who knows. Apart from that, things continue to move along, down to 5mgs and although I am encouraged to taper more quickly, I’m sticking to my guns. No rush now. Rheumy just arranged a further 7 month prescription for actemra so hopefully that will do it. Double that amount for fortnightly and I should have enough for a year. Please, please be over by then (unlikely). I’m thinking of you. Check with the actemra nurse if you can’t get anyone else. My Rheumy told me that in the States they only take it fortnightly. xx

It doesn’t help that the guidance says severe infections, your finger is a case in point. Any little infection. Your shoulder is a miserable, mystery, I hope the injection does the trick! Invest in a good pair of gardening gloves, hot as it is. Are you up to date with your tetanus jabs?

Do you organise your own 4 weekly blood tests for any harm that Actemra may be doing? Apparently that is up to me here.

How will we know when GCA has gone? I get no recognisable GCA symptoms anymore. I feel as if I’m on a road to no where sometimes. Sorry, I’ve lost my jolly.

Hello, This was my experience whilst on Tocilizumab when put on antibiotics for a urine infection. The R advice nurse advised me to stop my weekly Toc injection whilst on the course of antibios and restart the following week. Very best wishes for help coming your way.

Thank you! That is my plan. It is great to have this confirmed.

PMRpro
PMRproAmbassador

"he is concerned that it might be the start of shingles. He has, however prescribed a course of anti- biotics"

Not a lot of logic there! If he thinks it might be shingles it is an antiviral you need!

You would think GPs might have come across RA patients on tcz - but maybe they get/got better access to specialist helplines/nurses. The other thing I wonder about is why if the UK is going to restrict use of tcz to a year/52 injections, they don't support use of it every 2 weeks and get 2 years out of the same cost. The difference between weekly and bi-weekly administration in achieving remission was quite small.

But you have had plenty of good advice here. Ring Sarah's department secretary if you don't hear from her.

SheffieldJane
SheffieldJane in reply to PMRpro

Thanks PMRPro. No sign of more blisters today. Perhaps if gvt coms. were clearer, GPs’ surgeries wouldn’t be under so much unnecessary pressure. I agree about the fortnightly Administration of Tocilizumab. The US does this with everyone, it may even lessen the side effects. Why only allow 6 months supply? NICE guildlines are not carved on tablets of stone and were informed by cost alone.

PMRpro
PMRproAmbassador in reply to SheffieldJane

And sometimes I wonder if the medics had ANY input!!!

It is up to a year in the UK - still not enough, and I believe that RA patients don't have to jump through the same hoops and get it as long as necessary.

Hi Jane, sorry to hear you are having such a rough time, I can't send any other useful advice that you have not already had so hugs and best wishes and hope it is sorted soon. Peter

SheffieldJane
SheffieldJane in reply to Bcol

Thanks Peter! As more of us are being prescribed Tocilizumab/ Actemra, we need to know it as well as we know Prednisalone. It helps so much.

Bcol
Bcol in reply to SheffieldJane

Yup the more we know the better it is. I learn something new pretty much every time I am reading posts on the forum it is really good. Just to add to my happiness!! my optician has just referred me up to the specialists for possible Glaucoma.

No advice

Just to say thinking of you and hope its nothing to worry about

You have been through so much as it is

Dont need anything else

XX

SheffieldJane
SheffieldJane in reply to Rose54

Thanks Rose. I haven’t been through as much as so many on here though, I just moan and get anxious a lot.

Rose54
Rose54 in reply to SheffieldJane

Its hard times at present

I to get anxious and even if you manage to speak to a GP it appears thay no longer care.

My heart beat has been all over the place and the more I think about it the worse it is. So I think its mostly anxiety.

And today I have a funny head one side feels numb ,wrist ,shoulders and back ache .So either I have taking less meds than I should or I am in for a flare.

Will see later how I feel for now I have taken Paracetamol, hope to attend my BHF class this afternoon first one back since lockdown.

Dont think I will be putting much energy into it .

Take Care

Jane so sorry to hear you feel so unwell, you have had a lot to contend with this past year. I can’t add anything else but send more of that positive energy and a huge hug . Take care, thinking of you x

SheffieldJane
SheffieldJane in reply to York54

Gratefully received. X

I have never experienced these things on Actemra.But i would not take Injection,if you have infection it is known not to take Injection,and i have been told to wait another week after infection clears before starting again.Take care xxx

Right! That’s new. So I will miss 2 injections then.

Yes as week you are ill then wait another week before next injection.When i was on Infusion monthly sometimes i did not have Infusion for six weeks,depends how bad infection was and length if antibiotic course.This is how my Dr at rheumy does it but guess it will be different in other places.xx

Thanks! That is helpful and it makes sense.

Glad it helped,it can be so confusing when taking these meds.xx

I can’t take paracetamol with the Penicillin I have been prescribed - when did that happen? Even my GP disputed it but it actually sounds quite serious.

PMRpro
PMRproAmbassador in reply to SheffieldJane

Who said that SJ?

Unless something new has been established more recently it sounds like half a story - it was found a few years ago that there is a problem if oral paracetamol is given at the same time as certain commonly used antibiotic suspensions for children:

researchgate.net/publicatio...

It's like the calcium and pred problem - leaving two hours between removes the problem.

SheffieldJane
SheffieldJane in reply to PMRpro

The antibiotic is Flucloaxillin containing Penicillin. The leaflet says “If you are taking or will be taking Paracetamol there is a risk of blood and fluid abnormality ( high anion gap metabolic acidosis) which occurs when there is an increase in plasma acidity, when flucloxacillin is used concomitantly with Paracetamol, particularly in certain groups of patients at risk, eg patients with severe renal impairment, sepsis or malnutrition, especially if maximum daily doses of Paracetamol are used. High anion gap metabolic acidosis is a serious disease that must have urgent treatment.”

People will miss this thinking this is a Penicillin type of drug and of course, if you are unwell Paracetamol has been the go to drug. There is no advice about leaving a gap. I think Paracetamol is going to be demonised like aspirin was. I won’t be taking it, pity Lemsip felt helpful.

PMRpro
PMRproAmbassador in reply to SheffieldJane

Obviously they have found it isn't just in children. Mind you - some people use paracetamol like sweeties and it really is a dangerous drug when misused. Even taking it and drinking alcohol can be risky and people don't think about lemsip and cocodamol etc all having paracetamol so it is all too easy to exceed the max recommended dose.

Hi Jane I hope your Doctor is wrong about shingles. I learnt this today as Mum was given a one off antibiotic infusion yesterday ...... Antibiotics can be given at the same time as TCZ so long as it is one off or short term (not sure what short term would mean).

DadCue
DadCue in reply to Sefu

How is your Mum doing???

Antibiotics with Tocilizumab is still a big question mark for me. I'm currently taking antibiotic eye drops to "prevent" an infection and my ophthalmologist is aware that I'm still taking Tocilizumab. Granted, taking antibiobiotics to prevent an infection isn't the same as actually having an infection. My ophthalmologist seemed more concerned about oral prednisone slowing the healing process. I'm off oral prednisone again and only do prednisolone eye drops 1-2 times per day. As far as I can tell, my vision is gradually improving and there isn't any infection.

I was told to be off Tocilizumab injections while on antibiotics and prior if you had forward knowledge of the possibility of needing any . Phone your Rhuemie nurse for confirmation. From memory it is because the TCZ stops the antibiotics working. Caviat.... if my memory is right.🥴

Thanks - that is the plan.

Hi Jane

Have you managed to get hold of your Consultant or Rheumatology Nurse? How are you feeling? xx

Agree with all the advice you’ve been given Jane but I know when we’re not well we sometimes haven’t got the energy to pursue avenues. Hope you’ve managed to get in touch with your Rheumatologist or secretary for advice.Certainly if your GP thought it was shingles he should have prescribed an antiviral within the 3 day window, but that’s by the by now I presume. When you have the energy let us know how you’re getting on. All very best wishes 💐x

You sure have been thru a lot and I can really sympathize. Shingles is nothing to mess with so It is good to hear that you are taking steps to treat it.

Hope this turns out well for you

Take Care

Very pleased to be told that there is no sign of steroid induced diabetes. Surprised that I cannot have paracetamol with my penicillin based antibiotic . so had to delay start until tomorrow. The eye is not looking like shingles. I think it is linked to sinus and nose infection. Quite clear on stopping Tocilizumab during infection/ antibiotics. Any one know if you can have a Tocilizumab injection the day after antibiotics are finished. Thank you so much for the support and advice. I feel brighter today. Senior GP phoned and was good.

Hi Jane, I am so sorry to hear of all these troubles, but it sounds like you had lots of good advice as well as outpouring of love and support so I just wanted to join in with the love and support contingent. The only advice I can offer is that I often hear how woefully ignorant GPs are of any eye-related issues, so I would always have my eyes checked by an expert. I hope it all gets resolved quickly and you are back on course with your recovery. Vxx 🌸💕

Thank you! I see a private Opthalmologist on Monday next all being well.

hi Jane. thinking about you today seeing the eye doc. oh you have probably seen him/her. I just woke up but you are in a different time zone!! how are you. any news?

MrsNails
MrsNails in reply to yogabonnie

Yes Jane, any update? x

Thanks for asking, see my reply to Bonnie.x

Well he was a totally lovely man. He put my eye symptoms down to a reoccurrence of my Graves’s Disease and exopthalmic goitre ( Thyroid Disease)( something my doctors and I haven’t considered for years). The pressure behind my eyes and the streaming of the eyes, dry eyes, and the proneness to infection ( Tocilizumab won’t have helped with vulnerability to stubborn infections). So he’s written to my GP for tests and eventual, adjustment to my Thyroxine. There is an operation but he doesn’t think I need it.

He confirmed the cataracts and suggested operating in 6 months to 1 year. Probably COVID considerations.He cleaned out my tear ducts and checked for a blockage , painless, really steady gentle hands, this bodes well for the operation.

My first experience of private medicine, no sense that he was money minded, in fact he pointed me towards money saving. He put my mind totally at rest. The eye infection has responded to the antibiotic, he declared it gone, I’ll be finishing the course though. I expect pausing the Tocilizumab helped this along. It was worth the fee for the reassurance, brilliant to be listened to. GPs just don’t have time at the moment.

Thank you for asking, the support on here has been wonderful. I was climbing the walls. Xx

That’s very reassuring Jane, which when it’s your eyes is vital!

You’ve certainly been having a tough time of it......

A break from the TCZ will give you body a bit of catch up time & hopefully things will be much better for you.

Take Care

Angela 🌺

My rheumatologist says immediately stop Actemra if any sign of infection at all. This is also stated on information sheet. I don't know why your dr wouldn't know this. I have had to stop a couple times for a few weeks for very minor symptoms. Please get more info before doing another injection. Genentech also has medical consultants/patientadvocate that are very knowledgeable and willing to talk.

He had barely heard of the drug. He might still be training I guess. This site teaches you to question and research though. I wasn’t sure if what I had would be classed as a “ serious” infection. I have only been on Tocilizumab for 12 weeks and down to 10 mgs of Pred. Worried about the GCA that must be rumbling away underneath.

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