Please can I ask for you thoughts and opinions, I understand it’s not medical advice and I’m speaking to Rheumatology but I need real like experience that only others on here have really.
I came off Baracitinib in Jan because not really effective and affecting my lipids adversely.
Then onto Tocilizumab in Feb but on and off it since for surgery and infections.
Just had a steady 6 weeks on it and feeling the benefits but bloods have come back showing neutropenia and sky high cholesterol. BP has also risen over the time I’ve been taking it.
I literally feel like giving up, I just don’t have the will today. Either the drugs don’t help me or they cause problems that mean you have to stop them. I don’t know where to go from here. I’ve just got out walking again and I know the pain is already coming back because I’ve not taken the Tocilizumab this week. I’m trying desperately to reduce the steroids and no doubt will have to up them now in the interim of finding another drug.
I’ve had Etanercept, Simponi, Baracitinib and now Tocilizumab. Each time having to turn a blind eye to the potential consequences of them. I don’t know how to carry on with it all today. I don’t think I’ve ever felt so hopeless.
As an aside I’ve developed this terrible tinnitus which is driving me mad. I wonder if it’s linked to the Tocilizumab.
Thank you for being somewhere to turn to x
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Inanotherlife
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I’m sorry to hear you are struggling at the moment. I’m on Tocilizumab too and, for a while, my neutrophils dropped below the normal range a couple of weeks before I was due to have a TAR at the end of April. I had developed a chest infection prior to the surgery, was given a course of antibiotics which cleared it up and my neutrophils went up again. I went back on TOC a week after the surgery and my bloods are back to normal.
Has you Rheumatologist said you have to stop the TOC? Maybe you can continue and have more frequent blood monitoring. Or are you worrying that you may have to stop it? Do you think you could have had an infection which may have caused some of your problems?
Like you I’ve had to try a number of different biologics but Rituximab and Tocilizumab are the only two that have helped me. Try to remain calm as we know how much worry and stress can affect us. My blood pressure shoots up when I’m anxious and always when taken by a healthcare worker! When I monitor it at home it’s ok. My cholesterol level is raised but the ratio of my total cholesterol to HDL is acceptable according to my Rheumatologist. So I’m not worried.
Tell your Rheumatology Consultant how you are feeling and seek his/her reassurance and advice. There are more drugs to try if it’s decided that TOC is not the right one for you.
Sorry to hear you're having so many challenges in finding a suitable medication, Inanotherlife , I think anyone would be having moments of despair dealing with all this.
Sadly I don't have any experience of the medications you've been prescribed that I can share, but am in the process of having cardiovascular risk investigated and possibly treated due to a combination of high cholesterol and biologics. Treatment for RA is an absolute maze of side effects, contraindications and complications.
I'm so glad that at least you feel able to reach out here, it's a place where we do understand the frustrations and challenges and can walk the path together. There is also the NRAS helpline available, if you're based in the UK and feel it might help to talk to someone about how you're feeling - nras.org.uk/helpline/#:~:te....
It’s not easy is it! I do feel for you going through this and wondering if you’re ever going to find some relief from pain and disability. A lot of us have had the same despairing thoughts and feelings when yet another drug has failed or you’ve another infection which has knocked you down.
You say you’re desperate to get off the steroids though it may be the one drug which is keeping you going and which you need at an adequate dose in order to quell the inflammation in your joints.
As a very long time user of Prednisolone (over 34 years) for me it’s been the constant in a sea of medications ranging from gold injections to now, Filgotinib, and everything in between so perhaps be glad you are on them for now whilst you explore other drugs and if you have to increase your dose it can always be reduced again. I appreciate the desire to get off steroids in the long term -and I’ve never been able to - but without them I would be in a wheelchair and considerably more debilitated than I am now.
Glad to hear you’re speaking to rheumatology who should be looking to help you with your mental health as well as what to do next. Trying a different JAK may be the answer - a slight tweak sometimes works wonders.
Please don’t give up; it’s very frustrating, painful and depressing at the moment but once you get on the right track it’ll make a huge difference. Keep your chin up, we all understand only too well what you’re going through and are with you all the way!
Thank you all for your thoughts and good wishes, you’re very kind.
It does feel like being in a maze at the moment. There’s so many ‘moving parts’ to RA and the treatments, it’s overwhelming sometimes.
I’m just enjoying walking again thanks to surgery and Tocilizumab and feel so disappointed and worried if I’m honest, about the increased cholesterol and BP.
I’ve been asked to go for bloods again this week and if the Neutrophils haven’t increased, I have to stop it. I’m constantly trying to lose some of the weight I put on with the steroids, hence the reluctance to have to increase them again whilst waiting for another treatment.
I’m grateful for the treatments and steroids but the side effects are so harsh and 11 years on, I still absolutely resent the fact I’ve got RA and that you can’t just take the drugs and get on with life as best you can. It takes so much energy to keep going through the motions and it interferes with the few pleasures in life I can enjoy with my family.
Hi Inanotherlife, have you been able to talk to anyone about how you feel? My husband has RA and quite a few other conditions and some days are really hard. He's been on the tocilzumab (infusions) for quite a while but can only take the half dose because his liver isn't great since he had a liver infection. Those times do try you to your limit.
You have, I am sure, come through rough patches before and that knowledge will help you to take it one step at a time, each day. Prioritise what you feel will help you best at this time, for example, see your GP about the tinnitus. Tocilzumab can cause dizziness but I've not read that this tinnitus is a side effect. That alone would make anyone feel low (my mother had it and it was horrible).
I went thro the mill with the meds and the side effects and feeling things were getting worse as my whole body seemed to get a new “ condition” every 6months.
I kept getting back on the horse and sometimes reluctantly but I knew my RA needed medicine for control.
I used NRAS and the Wren to get my head space better but I still have moments of why but I feel this is natural and part of the process. Keep talking and asking questions so you feel Comfortable moving forward.
I have been through the despair and some days struggle to be positive, especially when I’m having a flare, however minor. Somehow I pull myself out of it.
I have been on Tocilizumab for 4 years. It works for me mostly bar the occasional break through minor flare,
My bloods are a bit up and down, but not seriously. Mostly, I adjust my diet to ensure cholesterol stays normal, not too difficult being vegan. I ignore BP if done in clinical environment and self monitor at home, where it’s pretty good.
Personally, my quality of life on Toci is so much better than it had been for a number of years, so I would prefer to stick with it.
Look for the positives and try to build on them, easy to say and hard to do, I know….
I'm having to take prednisone right now also because Enbrel isn't working anymore and I've been up, not being able to sleep, and eating everything in sight 🤣😍🤣. I'm waiting on Rituxan to be approved because my hands are really freaking out. I've been on Rituxan before and it worked great. I was just getting sick with infections, which I'd rather have than this pain. Good luck to you, and I hope you feel better soon.
I understand your resentment at having RA, I've only had it for just over 2 and a half years and I feel like my life is simply dominated by it. Just as the ship seems to be steadying something goes wrong - neutropenia, liver, neuropathy, etc etc - and I'm thrown back to not quite where I started. In some ways I feel worse, mentally, than I did at the start as at least then I thought there might be a way forward/out of this mess. Now, it just feels like there isn't and what remains of my life is, and will be, one long merry go round of drugs, doctors, and one step forward and two steps back.
Having said all of that - do try and find somebody to talk to about how you feel and your frustrations and concerns. And don't give up hope yet!
I am so sorry to hear of your continued struggles to find what works. Particularly that dreadful feeling of doom.
Many of us can empathise, having experienced similar problems and feelings. Please continue to share with us, you are not alone. We are here for each other.
There WILL be a treatment that is right for you, I have gone through the whole spectrum of treatments over my 37 years of RA. They work, they work for a while or they don't work at all. We are all different and have a unique mix of reactions and other conditions.
There are only two types of side effects in my experience. The ones you can tolerate and the ones you can't. Because controlling RA is the vital thing.
Also, we have to grieve for the life we had before RA, before we get to the stage of accepting how we are now and can concentrate on what we can do, not what we can't.
I hope my briefly distilled experience helps give you encouragement and a little strength.
I’ve been on tocilizumab for 6 years and it has worked well for me. But it does affect my neutrophils/white cell count so I only take it once a fortnight. They are still low but mostly they stay on the acceptable side of ok. I have just had a run of having to have fortnightly blood tests for the last 3 months because they kept dropping but on the last blood test they seem to be finally coming back up slightly. It has also raised my cholesterol which I am trying to lower by diet rather than go on statins. Id rather not be on meds but I know how bad I was before I started the toc so I accept the side effects for the quality of life I have now.
Hello again, apologies for delayed reply, I’ve not been too well and it’s the school holidays!
Thank you everyone for your replies, it does help to know that you all understand just how it can feel at times.
I had bloods done again after 2 weeks off the Tocilizumab and my neutrophils were up slightly and platelets still low. Had to get back on it because of the pain so having bloods done again this week, at which point the consultant will make a decision on whether I have to stop it.
We go away next week and really wanted to stay on the Toci but don’t want any to pick up an infection whilst being abroad.
Thank you once again, it’s nice to have see summer at last, I hope it makes everyone feel a bit better, as it does me 😊
I'm back and no better actually worse the dose pack of the steriods helps for the days I was on them once off it comes back now my hand are so bad after 8 years of different biological medications you would think I would be better off but now I least I go on the 13 for my first half of the rituxian this time I'm praying it works like it did a few years back I had to take 20mg of steriods this morning and this after my blood pressure was so high I had a anxiety attack so not sure what tomorrow will bring but I'm going to try and not take the prednisone I hope everyone is going as well as they can and prayers to get us though
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