Tocilizumab working - but what a price: Tocilizumab... - NRAS

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Tocilizumab working - but what a price

Jora
Jora

Tocilizumab eventually started to work for me about three weeks ago - after 4 months. My blood tests bear this out; my ESR and CRP have been in the normal range for the first time in five years. The trouble is I feel absolutely shattered the whole time, and so feeble that I’m not much good to anyone, least of all myself. The Sjögren’s is worse and I am furiously itchy, especially on the scalp. My blood test showed raised erosinphilis, and I have a chesty cough (very unwelcome when one also has costochondritis). I don’t see the consultant until 18 Sept, the day before we go on a much-needed holiday. I was due to inject Tocilizumab on Saturday, but I didn’t. My instinct tells me that I might have developed an allergic reaction. I was due to inject MTX this evening, but I’ve decided to speak to my GP tomorrow. I have tried to contact the specialist Nurse but they are inundated with calls and I have t heard back from her yet.. I’m on 2.5 mg Prednisilone.

I’m not asking for medical advice, but am wondering if anyone has had a similar experience?

25 Replies
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Hidden
Hidden

I haven't anything useful to say but I'm sorry to hear your plight and wish you well. I hope you get some clarity and can enjoy your holiday when it comes.

Jora
Jora in reply to Hidden

Thank you. That’s sweet of you. j

I am on Tocilizumab and have none of the things you are experiencing. I would hazard a guess that it is the combination of mtx, pred and tocilizumab.

I stopped everything before starting toci 18 months ago and have been been feeling better. No pred, not mtx, no sulfasalazine, no leflunomide, no plaquinil, nothing but toci.

I would try just one drug not a combination of lots. I am not a doctor, just a very informed person with an undetermined medical condition that toci has helped.

I had very bad vomiting on mtx, EXTREMELY bad diarrhea on leflunomide and plaquinil (6 hrs of 8hr work day on the loo) felt like pooping lava, Sorry for the visual no other way to describe. Sulfasalazine was just 3g every day with not benefit or side effect.

Humira gave me weird doughnut shaped blisters all over my hands ( could not even pick up a spoon to eat with), Anakinra was a daily subcutaneous injection with no response after 49 days, started toci and within 2 weeks crp went from 159 to 1.8 mg/l. Felt like a million bucks after that.

Two problems I have found with toci is that I am still fatigued mostly of the time and after every infusion I gain around 10#. I have to take Lasix for 3 days to pee out all the water I retain after the infusion.

I still have major degeneration of the cartilage in my knees and I feel it has spread to my left elbow but unsure of that at the moment. The toci is keeping my crp at bay which I am very happy for, just wish the docs could regrow my knee cartilage so I could go back to work.

Sorry if I rambled bit, was having a Scotch with a neighbour and am now feeling no pain at all. Too bad I cannot have Scotch at work as a painkiller.

Jora
Jora in reply to dwsurquhart

Thanks very much. I actually prefer pain to this complete wipe-out which nothing alleviates, except Prednisilone. But I’m resisting increasing that until I’m seen the consultant.

J

Hi I'm going to agree with dwsurquhart. I've been on Tocilizumab for about 4years now with good results - but I take nothing else except paracetamol if she need to. The combination you are taking sounds very toxic but it am not in any way medically trained - just had 34 years experience with RA.

I hope you get something sorted soon and start to feel better. It's infuriating to find a drug that works but causes more harm than good in other areas.

I was able to take it for about nine months before having an allergic reaction a little more than a year ago. Up until the reaction I tolerated it pretty well minus the incredible fatigue. It did however, allow me to reduce the prednisone I was taking by a huge amount and I have since been tapering, increasing for the occasional bad flare and then resuming the taper.

I hope you’re feeling better soon.

Best ~

Jora
Jora in reply to Nitrobunny

Thanks for responding. May I ask what biologic you are on now?

I have been on 5-7.5 mg Prednisilone for 5 years. This is the first time I’ve got down to 2.5 mg, but I feel very low indeed. I’m very tempted to increase the dose, It am resisting as I want my rheumatologist to see what condition I’m really in when I see him on 18 September, for my annual appointment.

Nitrobunny
Nitrobunny in reply to Jora

Hi! I’m only taking prednisone now. I’ve been through every biologic and failed by either developing allergies or reactions that were so severe I could not continue. Some just flat didn’t work.

So I’m pretty much stuck with the prednisone and as I said pretty much chasing flares. It almost never fails, on the days I’m seeing my rheumatologist, I’m feeling pretty well with almost no swelling then days later I flare again. Fortunately I can get in to see him if I’m bad and he’s really great about responding to phone calls. Occasionally I will get a steroid injection as a boost for a flare rather than upping the prednisone.

I have been on Tocil for years it is the only thing that has helped the pain but i also shattered most of the time and have the awful itch drives me distraction.I have just been put on the waiting list for a knee replacement and just waiting to hear about the other one so it has not stopped that.I was told it was oastio and RD hope you get answers to the itche because i never did

Darwin
Darwin in reply to beeckey

When I was on tocilizumab my inflammatory markers where right down but was in more pain. I was told it gives false readings 🙄

Jora
Jora in reply to Darwin

Thanks for replying. False readings don’t give one much confidence, do they. May I ask what you went to after Tocilizumab?

Jora
Jora in reply to beeckey

Thanks for replying. Where I’m at right now, I think I’d rather have pain than this complete wipe-out. I’m useless and the itching is hell. In desperation, I took at shower at 4 am this morning. I’m due for a knee replacement in October ( my second; thank goodness there aren’t any more!)

I use this stuff. It certainly isn’t a cure but I think it helps a little.

arganorganics.us18.list-man...

beeckey
beeckey in reply to Jora

The constant itching is awful sometimes i scratch where i think the itch is but it just moves on to else where i could scream. Could i ask how long you waiting for your knee op my gp said it was 40 weeks.I Will give this ago cream ago thanks

I'm on tcz and had no itching or problems. Yes J do get checked when you can x

Jora
Jora in reply to allanah

I’m glad it suits you. I hope you never get the itch. It is maddening. I had to have a cold shower at 4am this morning. J x

I nearly died on tocillizumab.....3 1/2 months in had to have emergency surgery for a ruptured abscess on my kidney, and it also masked all the symptoms, so I didn't realise how ill I was. Took me 2 years to get over it.

I also have friends who have been on it for several years, and have had no problems.

However, I do think that any signs of allergy should be treated very seriously, and think if your gut feeling is not to take it until you can discuss it with your doctor, that's what you should do.

Do hope you can get it sorted, you have had enough problems with this wretched disease.

Btw, I am now 2 1/2 months into abatacept, and, fingers crossed , doing ok.

Jora
Jora in reply to hatshepsut

Thank you so much for responding. I think Abatacept is Enbrel, which was the first biologic I was tried on. It worked pretty well joint-wise, but I was getting too many chest infections, so I was switched to Rituximab. That worked too, but utterly wiped me out.

It’s like nightmarish game of snakes and ladders. I think I’m overdue for a ladder.

I hope the new treatment works well for you .

Jo x

Hi Joanne,

Tocizumab injections worked great for me until I had to stop the injections for almost a year. They didn't work as well when my Rheumatologist here in Canada arranged for me to start them again. I find most biologics don't work if you have to stop them for several months. I didn't have any side effects, when it worked it worked well. I am waiting to start Rituxan infusions which takes 6-8 hrs and a 2nd infusion followed by an infusion every 6 months.

I wish you well, take care, Sue

Jora
Jora in reply to Angels-delight

Hi Sue

Thanks for your response.

I assume Rituxan is the same as Rituximab. I was on that for a year. It worked quite well joint-wise, but completely wiped me out for three months, hence the switch to Tocilizumab. I feel I’m running out of choices which is depressing.

Heigh ho!

Hi Jora,very similar to you I have been on it since February this year my bloods have shown good results,like you I have Sjogren’s which is so much worse now,I have to see Rheumatology Consultant in 3 weeks as I’m away at my Son and family in Somerset,we are discussing about a New tablet actually been made for Rheumatoid really hope this can work as there is no other option for me. I really hope you can get it sorted x

Jora
Jora in reply to bella-bailey

Thanks for responding, Bella.

I wonder what the new tablet is? Like you, I feel I’m running out of options. At 75, I also feel I’m running out of time. The sjogren’s Is a nightmare, and costochondritis is an unwelcome side order too. I’m so tempted to increase the steroid to 5mg ( I’m on 2.5) but I really want the consultant to see me as I am, on the 18th.

x

Hidden
Hidden in reply to Jora

Possibly bella is talking about Baracitinib or Tofacitinib, Jak inhibitors. They work differently than biologics. My OH has just gone for his education session before starting.

Jora

I haven’t been told the name of the tablet yet but I will let you know as soon as I do

I go home on the 22nd of September and my Consultant should be back off his holiday by then.

Did they give you the option to adjust your dose of Steroid tablets? If not phone your Rheumatology help line and ask there advice x

In the past, I’ve increased the steroid dose when I’ve felt the need but this time I really want the consultant to see my underlying condition. Having had steroids for 5 years, it is highly likely that my adrenal glands will have packed up permanently. They produce 2.5 mg Adrenalin, which is why I’ve adopted that as my baseline.

It’s 2.40am and I can’t stop itching and coughing, almost to the point of vomiting. I e got two calls to the Helpline waiting to be answered.

Thanks again.

Jo

Hi Jora - I am just reaching out to people on this biologics (as not many of us) to see how it’s working as I am not convinced. Been 4 months for me. - Hessie

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