Anybody taking Tocilizumab (RoActemra) anti-tnf?

cornishman

Dear Forum

Can you help? I just started treatment last week of Tocilizumab (RoActemra)...a tnf-treatment for Rheumatoid Arthritis. It's a relatively new drug and works slightly different from others such as Enbrel & Humira (both of which aren't working for me anymore). The treatment is given by infusion at the moment. Please...if any of you are taking this drug can you be so kind to provide me with any feedback as to how long it took for you to notice (if any) improvements in your symptoms? What was your experience in using this drug please?

All the best, David

welshgooner

Hi David
I know nothing about this drug but I too started on Embrel first and now on Humaria which is doing nothing for me at the moment. I am interested in the drug you are taking because it is something I might have to go onto in time. Keep us posted as to how you get on. Good luck,
Den.

dorcas

Hello David... nice to meet you

I've been on Tocilizumab for 6mths now..... and like you, had been on Enbrel and Humira.... and Infliximab too I count myself very lucky indeed to have been 'allowed' Tocilizumab after already having had 3 anti-tnfs. In my case my rheumatologist had to put forward a 'special case' to get approval and funding, especially as this drug is normally only prescribed for RA and not PsA (psoriatic arthritis) which I have.

You are right, Tocilizumab acts differently to anti-tnfs. I had it explained to me by my rheumatologist that it's a type of drug called a biological therapy and has to be given monthly by infusion in hospital. In rheumatoid arthritis / psoriatic arthritis your body overproduces a protein called IL-6, causing tiredness, anaemia, and inflammation and damage to your bones, cartilage and tissue. Tocilizumab blocks the action of IL-6 and reduces these effects.

I began to feel the benefit of this drug within just a few weeks I don't feel as tired and have less swollen, stiff joints.
Tocilizumab can cause side-effects (but not always...we are all different!) ... for me it's been high blood pressure and High Cholesterol. Please do not worry about that as you will be very well monitored for side effects and treatment given to counter any (if any!) adverse developments!

I do find that in the week before an infusion and until about a week after my arther symptoms return.... so at the moment I probably feel my best in the middle two weeks. My rheumatologist is considering increasing the dose of Tocilizumab to see if we can bridge the two weeks either side of the infusion... and I'll find out more at my next appointment.

Your Hospital will have asked you to phone in 24hrs before your next infusion?... this is to ensure that you are infection free and is vital in order to avoid any possibility of toxic reaction. You should also have been given a Biologic Therapy Alert Card? which they advise you carry with you and present to anyone providing you with any treatments. It has important info on the drug, it's actions and who to contact within the hospital for advice should that be necessary.

I am very happy to be on Tocilizumab and do feel that it is working for me; so I do hope you have the same positive experience.

Good luck and let us know how you get on please.....

Iris xx

cornishman

Dear Iris & Den

Thanks for your replies...I don't think many people in the forum are on this drug as you (Iris) have been the only person to reply! Anyhow... thanks for that, your feedback is appreciated and helpful. I am 'in the wind' at the moment meaning I am taking just 10mg of Predislone to keep the Wolf from the door whilst I wait patiently for the Tocillimab to kick in. Trouble is my symptoms seem to be getting worse (expected I guess) and I don't want to take any more Pred. or painkillers as I've weaned myself off them the past few months! I'm happy that Tocillimab has worked for you and realize I must be patient for this drug to work...it hasn't even been a week yet!

All the best, David

astevo

Hi
I am new to this forum and have just seen your comments after searching the internet for Roactemra results. I have today 6th June just come back from my second infusion.
After my first treatment the only side effect was that for the first 3 or 4 nights I had a little difficulty in sleeping. My sleep pattern was disturbed and I was waking up thru the night.
After one week I seemed to have more energy and was getting out of bed earlier. After 2 weeks I started to notice that I could walk that bit further.
I have found it difficult to walk any distance (more that 100yrds or so) for the last two years.
After 3 weeks I was able to start doing some light gardening and staying on my feet for most of the day.
Its too early to say how it will work for me but the middle 2 weeks as Dorcas indicates seem to be the best.
I did notice that the last couple of days before my second treatment the tiredness started to come back.
I am hoping that the treatment will have a cumulative effect and I hope to improve even further when this second infusion kicks in.

good luck.

cornishman

Dear Astevo

Thanks for your feedback...I'm really glad this treatment has worked for you after what seems a year or two of pain/discomfort for you, you must be encouraged and its still early days right.

It will only be a week tomorrow since my 1st infusion of Tociilzimab so I know I need to be super patient at the moment, its so hard when you are in pain and looking for relief as you are no doubt aware. Like you I had a few nights where I was awake a bit threw the night after the infusion...other than that no adverse side effects yet. I would like to stay in touch with you to see how the next 2-3 months pan out for you. I am wondering what treatment you were on before the Toczillimab?? May I ask...what kind of Arthritis do you have?

All the best...and long may your improvement last...David

dreamdaisy

I wish the pair of you taking this drug well - I know it has helped Dorcas and I hope you both get the results you desire. DD

astevo

Hi David

I have seronegative RA. It started very suddenly, more or less overnight I found I couldn't walk, due to the pain in my feet/ankles.
My condition has never really been under any control since it started.

I have tried Humira, initially there were signs that it was working. The first 3 to 4 injections were very encouraging with my ESR counts coming down. However the drug soon seemed to stop working and very quickly I was back to were I started.

I am still on Sulphasalazine, Naproxen, Methotraxate and Prednisolone.
I will keep you informed how things are going. I fully understand about trying to be patient, I keep hoping to wake up one morning and find I can jump out of bed.

My experience of the first month of treatment is that any change in your condition is slow. It doesn't happen over night as one would wish. After the first two weeks I realised I could do more things, simply because the pain and swelling was gradually easing.

I hope it works for you.

Ste

lydiabarlow

I was originally taking enbrel and it was very good, but stopped being as effective as when I first started it so went onto Tocilizumab for two months, my pain increased ten fold and although my inflamation went right down the pain got worse, don't know what's going on, I've persuaded my rheumatologist to put me back on enbrel.

stickywicket

Hello lydiabarlow. I just wanted to welcome you to the forum. I've never had enbrel or tocilizumab but, with all our meds, it does seem that some work for some and others for others. Luckily, methotrexate still works for me. There does often seem, though, to be little correlation between inflammation levels and pain levels. I still remember one occasion when I barely managed to crawl into my appointment only to find my rheumatologist was very pleased with how things were going :shock: I hope the enbrel does the trick for you and also that you'll feel at home here on the forum.

bevman

Hi David
I have just read your post and i am on tocilizumab i have sever RA and have been on a number of drugs Embrel, and rituxamab although i only had one infusion of rituxamab.
I am due to have my third infusion in the next few weeks and touch wood i feel so much better i am still tired but no were like i used to be the pain is also not as bad i had it in my ankles which stopped me walking but now i feel great.
It started working for me quite quickly i think a couple of weeks after first infusion i have to have bloods taken on the monday then have my infusion on Tuesday the only thing that i will say is after my second infusion i did feel rather sick but i shall mention this when i next go.
I hope this has helped and i hope it works for you if you have any more questions let me no.
Laurence

skezier

Hi

Just bumping this back up for someone as they also are about to start it and I told them to read this post.

I so hope it will continue to work for those its helped and when it does work it does seem to be a good one. Cris x

skezier

Just bumping it back up cus I pushed it down again.....

Hope it will help flower and you do see it. Cris xx

cornishman

Hi there...thanks for the latest comments about your experiences with taking this new drug. After 4 months on it now ...I have my own story and experience to share (the good, the bad and the very ugly). My 4th infusion was 3 weeks ago. Like you Laurence my life has been transformed only after 1-2 infusions. My ankles/feet and elbows that have been troubling me for over 12 months are practically pain-free ....which is simply incredible from pain i was in. I can hit a golf ball 200yds when before I couldn't even swing a club near it! My blood markers fell from 45 CRP to 0.2 in 3 months and my ESR fell from 32 to 4. For a period of 2-3 months life has been sweet and I have felt a return to 'normal living'.

However, my great results have been thrown into recent confusion by a severe skin allergy/reaction from the drug Tocilizumab itself. Its a 'rash from hell'... I had it swabbed twice now by GP and its not infected (large severe red blisters on upper torso mainly). I experienced a similar event with another TNF drug I tried last year after Enbre finally failed with mel. I have always had sensitive skin regrettably so maybe I am prone to TNF bilogics in this regard...we are all different in how we react to diffeerent mends right? So...regrettably I have decided I must stop this TNF treatment asap..I will allow my rash to heal which may take months. I just know my next infusion will aggravate the scenario. I am seeing my consultant RA and Dermatoglist this week. I may try a low dose of this treatment later in year that may 'keep the wolf from the door' and lower my chances of rashes. I cannot live with this rash thats fact ... but of course i cannot live with RA either! Its a fantastic drug becasue it really has worked for me quickly and most effectively from where I was in a pain bed-limbo for a year at least.... however it has proven recently to have a nasty sting in its tail. Any ideas?

Kind Regards, David

dreamdaisy

Oh dammit, how bl**dy unfair. You find a med that helps the RA but then it does that to you. Having lived with chronic inflamed and infected eczema as a child I know how miserable rancid skin can be, now it's psoriasis for me and that's just as nasty. I am so sorry, Cornishman, I have no bright ideas that may help because this would seem to be a side-effect that any amount of salt water or emollient creams won't ease but maybe Dermatology can suggest something. Dammit, it's bl**dy unfair. DD

kellis

stickywicket wrote:

There does often seem, though, to be little correlation between inflammation levels and pain levels. I still remember one occasion when I barely managed to crawl into my appointment only to find my rheumatologist was very pleased with how things were going

Not just me then! I too am on Tocilizumab and my rheumy is very happy with my blood results and my various nodules have gone down, but I'm in more pain than I was before when on Humira (before it stopped working!) I'm also completely shattered the whole time. But hey, the blood tests are good so it must be all in the mind...... :roll:

astevo

Hi David, sorry to hear thats it not working out for you, especially after encouraging blood results.
For anybody else reading about TCZ it has been a welcome relief for me. I have just received my 6th and I continue to improve. I have been fortunate to not suffer any side effects.
Like most others who have commented my blood results are amazing. My ESR level is down to 5 over the last 5 months. At my worse points I was reaching high 80's and averaging 40 to 50. To date this has been the only drug that has worked for me.
I can now walk a reasonable distance, I managed a 1 and a half mile walk last week. It may not be very quick, but the fact that I can walk a distance is very welcome. I am hoping that in time my walking speed will increase. Sorry for the late reply to this post, but I have just returned from a holiday. The first I have had in 3 years. I credit the TCZ with giving me the freedom to start enjoying life again.

Best Wishes

stickywicket

Bumped up for sulkycat.

sulkycat

Thanks oh sticky one, will have a good read.

frogmorton

Bumped up for Daztree

sulkycat

I had my second infusion last week. So far I am not feeling or seeing any improvement at all but it is early days. Infusion days are ok, my nurses are lovely - but I am still trying to perk up from Tuesday's session (Sunday now). I am utterly wiped out, spotty as hell (same happened with the first infusion), upset tum (again) and weepy.

Apart from that, not much to say! My hands and knees are pretty dire (waiting for the results of recent Xrays on my right knee to rule out any fracture), I am struggling with depression and life in general is not brill. Thank goodness for family, friends, chocolate and a sense of humour!

stickywicket

I'm sorry things are so tough, sulkycat, and I hope the infusions will soon start to work on the arthritis instead of wiping you out.

kellis

Well, I've had about 9 infusions so far. Currently not too bad, but still not as good as I was on Humira. I had a bad spell of recurrent cold sores in the autumn due to lowered immunity and low white blood cell count, but now take a daily pill to keep them at bay.
The last couple of months I was only getting a couple of weeks relief from each dose with the pain increasing greatly towards the end of each month, and was in desperate pain before my last infusion in mid-December, so now I have been prescribed a daily Bi-profenid (anti inflammatory) which seems to be helping. I'm 9 days from my next infusion and as long as nothing changes, this has been the best month so far.
Got a cold though, so fingers crossed it goes so I can actually get my next infusion!

premierscfc04

hi Cornishman,
I found your list interesting as after just under a week of my 4th infusion.of Toxi I've developed 2 patches of what look like spots that are about the size of a credit card on.my side & back and feel like a scratch thats had soap rubbed into it. I've had them now for 4 days and they are as angry & sore as ever.
From the second infusion I have had constant itching for 3-4 day after the infusion, now this?

How have you gone on with Toxilizumab, could they successfully treat the rash for you?

Thanks in advance
Prem

sulkycat

Hi all,

I have my 6th infusion next week but it is highly likely they will stop treatment. Spoke to my nurse this morning and he is very concerned.

I have now lost two (thankfully back) teeth in the space of two months, and - sorry 'cos it's gross! - my big toe nail.
I have a huge spotty rash over both shoulders, chest and neck, which has beome steadily worse since the second infusion. Dr suggested Piriton (gee thanks), did zilch.
Yuk. The methotrexate means my skin is sloooow to heal, so the spots simply don't go.

On the plus side my knees are considerably improved.
I do not really want to start yet another biologic with its own set of side effects, it's been two years of constant new drugs.

RoActemra makes me totally wiped out for a good week after each infusion, then I have a better week before slumping again.

Absolutely no idea what to do for the best!

stickywicket

That doesn't sound too good does it, sulkycat? I've no experience of anti-tnfs so I'm afraid I've nothing to offer other than sympathy. I do hope something acceptable can be worked out.