Tocilizumab Low Neutrophils and now high cholesterol

[tazman3]

I am getting really worried now. My Consultant thinks my low WBC is due to the TCZ so I am having another break. My GP has been on the phone telling me that my cholesterol has risen to 7. I've never seen her but she was anxious to get me to look at my diet. I had to explain I have RA and the medication I have been on and off and on again for the past 3 years. Why don't they check the records?

I am on the verge of tears most of the time as nothing seems to be helping me. Now I learn that I am at risk of heart problems. Is there any joy in life with this disease? I don't eat processed food or fried food. I eat loads of nuts and seeds and fruit. I enjoy my non sugar cereals in the morning with seeds and grapes. For the first time in my life I am not constipated. Now the doc wants me to have porridge. I do have it on mondays which is my fast day. I have brown rice and wholemeal bread when I do have toast or a sandwich.

Is anyone else as miserable as me or am I just feeling sorry for myself. All this started with TCZ and I had really hoped that it would be the answer to my pain. Are there any biologic drugs that don't cause these problems?

[Neonkittie17]

I don’t know anything about what can ease the side effects of Tociliz but know porridge is meant to gently cleanse your stomach and help improve the immune with with its beta glucans and all end of other positive health benefits including lowering cholesterol. I take it porridge isn’t your thing. How about adding the berries, fruits and seeds you like to make the porridge more appealing.

[tazman3 in reply to Neonkittie17]

I do like porridge and understand the health benefits. I just really enjoy my cereals/seeds/grapes combo in the morning. I don't eat again until around 5pm as I like intermittent fasting. The doctor wants me to swap grapes for blueberries, which I do not like, or raspberries which are very expensive. I have watched my weight for decades and thought I had the right balance between nutrition, roughage and taste. I was doing ok until Tocilizumab entered my system. Even when all the other drugs were not working I could at least keep my diet the same.

I used to be a total gym addict and diet fiend. I was obsessed with what food to eat on days that I trained and what I would eat in between. I knew what was acceptable for bodybuilders to eat and my body fat was very low. I was in my 30s then and now I am nearly 65.

I believe that poor mental health has been my big problem and has shown itself in physical ways now. I thought I might be able to get away from it at this age and could have some contentment if I looked after myself. Still no joy.

I wonder if stopping infusions and using the jabs would make a difference?

[Neonkittie17 in reply to tazman3]

I have no experience of your med, sorry so couldn’t answer that. If you are strict on your diet then a change is hard but if it helps lower cholesterol I’d try it even if just until your cholesterol comes down. I am a selective eater and some allergies but mostly I eat very healthily and all fruits, except strawberries and kiwis (allergies). I’d give it a try, what the doc suggests and see how the blood results go. Your fasting would limit you to being able to eat all is suggested and what you prefer. I hope you can find a way to lower your cholesterol. Meds and RA can make you feel low in mood. Maybe some Tociliz people on here can offer more advice to you on that and the cholesterol and how they manage. I hope so.

[Maggsie in reply to tazman3]

Would having your Tcz by injection be better? When I was having a few side effects early on being on injections allowed me to miss a week and also go to a fortnightly regime until everything settled down.

[tazman3 in reply to Maggsie]

Yes Maggsie, if you look at my last reply that was exactly what I was wondering! I think when I go for my next appointment with Rheumatologist I will ask about it. I do feel a bit stupid though. When I started with this drug I was advised (on here) to insist on infusions as the dosage is measured exactly to your body weight. I did insist, they were not impressed but agreed.

I had my first in November and three weeks later my blood test showed very low neutrophils so I had to stop. The rheumy agreed to a steroid jab in my bottom which was a taste of heaven for me and helped me through Christmas. I then waited until 18 Feb for my 2nd infusion and the following blood test showed low neutrophils again. Rheumy didn't say anything about my cholesterol. My GP had asked me to get tests for my 'well woman' check and emailed me a separate blood form.

That is when the GP called me. Nothing connected to rheumy at all. In fact I don't even think she knew I had RA until I explained the whole story. She was supposed to phone me yesterday but didn't. I received a text later saying she had tried but no answer. I carried the damn phone with me all day and it didn't ring once! I am sitting here waiting again for a call today.

My next infusion is 11th May if the bloods on 4th are ok. I don't understand how this stop/start is going to help me. I've had two infusions in 7 months! From what I have read, RA can raise cholesterol so how do they know what is causing what/when? I go for 6 month check at Rheumatology on 21 April and will ask about injections. If only I could have steroid jabs every month!!

Thank you Maggsie and all who have replied.

[Maggsie in reply to tazman3]

I'd love a regular steroid jab - every 3 months would do for me!

[tazman3 in reply to Maggsie]

Yes, I've had a few now and they are wonderful. Years ago when I was a regular at the Hand Clinic at our local hospital, I had them direct into my hands, wrist and fingers. Even they were worth the pain for the relief and freedom to use my hands pain free. Eventually, I had carpal tunnel surgery. When I was first diagnosed with RA I was told that I had probably had RA for a long time. If only I had been tested for it at the hand clinic.......

[Evie3 in reply to tazman3]

So sorry for your problems☹️. I cant help re meds as not been on that one but I make pancakes and overnight oats with porridge oats(slimming world) and buy frozen fruit which are a lot cheaper….served with low fat yoghourt. Hope u get sorted soon🙏. This disease is rotten😢

[Angels54 in reply to Neonkittie17]

How long have you been on this drug ?

[Neonkittie17 in reply to Angels54]

It’s not me with the problem.

[Madmusiclover]

How frustrating. I’m on a JAK. No tummy troubles at all. There are other drugs. I do hope you get offered an alternative. X

[Lolabridge]

It’s tough isn’t it?! I managed to lose two stone when I finally came off Prednisolone and focused on improving my eating habits. I was already eating plenty of fruit, salads and veg but too much bread. I can’t do much exercise due to mobility problems so it had to be diet change for me.

I was also told to get my cholesterol down and I did it by increasing protein and fibre but reducing starchy carbohydrates, not the fats that our bodies (and brains!) need.

I avoided all low fat products as they usually include sugar or sweeteners and other nasty additives to make them taste better!

I gave up all added sugar products and prepared cereals and restricted my bread and starchy carbohydrate intake to no more than 15g two or three times daily. At breakfast I switched to the Eat Natural low sugar granola with blueberries or raspberries (lower sugar and higher fibre than grapes) and Greek style natural yoghurt. A 40g portion of that granola contains only 15g carbohydrate, the lowest I could find, but also contains grains, nuts and seeds.

I also increased my fluid intake by drinking more water and choosing to have a herbal or fruit tea after a meal if I was tempted to eat something else. I think it also helped eating more earlier in the day (at breakfast and lunch) with less in the evening and nothing from 7pm until next day.

Perhaps you may find some of my suggestions could help you but I do appreciate our metabolisms can respond differently to what we eat.

Good luck!

[Ozzy]

My gp told me last week that my cholesterol is high from my blood test in 2015! Yes I was and I still am on Tocilizumab but overall it has helped me. Swollen joints since January and still waiting for hospital appointment which is overdue but I know I have been fitter and done more exercises on Tocilizumab than I have since 2008

[sylvi]

I am fed up with RA, but not for the reasons your suffering from darling. Mine is due torepeated infections. Sorry i can't help you with your problems. Sending hugs, xxxxx

[Neonkittie17 in reply to sylvi]

Same here .. antibiotics antibiotics antibiotics 🤨🤨🤨. Hope you are steady? xxx

[sylvi in reply to Neonkittie17]

Crashing this afternoon darling. Nothing new here though darling hope you are nir too vad my lovely. Xxx

[Neonkittie17 in reply to sylvi]

It’s a cold day and best to be inside. Hail balls been battering my lovely container pots of spring narcissus and tulips. 🤨 I’ve repeated one of my vaccines now almost two weeks ago now my B cells are back and I am back on the vaccine trail and we’ll see if I get antibodies as I am not repeating Rituximab again. Will be starting another med after my second vaccine. I’ll test for the antibodies after the third primary dose due in June. Hope you stay steady and keep warm. Hope Bob is steady too. Lots of love xxxx

[sylvi in reply to Neonkittie17]

The antibiotics are starting to work, but i think i will call the drs this morning and speak to the dr who spoke to me the other day about my breathing and what else i can do to help myself from getting these infections.xxxxxxx

[Neonkittie17 in reply to sylvi]

My immunologist (and respiratory consultant) say it’s my low igG/IgM (hypogammaglobulinemia). Although I’m not to repeat Rituximab, it has affected the way the Ig’s are constantly depleted and my lungs/chest produce catarrh, giving me chronic bronchial symptoms. (Ig’s can take a very long time to improve, even after halting Rtx.) Mine hasn’t been bacterial when tested but some episodes may have been, and I’ve tested for asthma and seen a senior respiratory physio who says my lung capacity and volume is really good. I have been taught breathing techniques too. I’m still shielding and my husband is at present until I’ve repeated my vaccines, so not getting colds etc.

Do you think your chest issues could be as a result of the awful sepsis you had? I recall how you were left feeling so run down after that. I understand very well your situation and the way it is debilitating as it’s like a yo-yo going up and down between these episodes. Hope you can make some sense of why it’s happening to you. xxxx💗

[sylvi in reply to Neonkittie17]

Your right about the sepsis darling and even the dr thinks the sepsis has something to do with it as well. I have been ill since Christmas and it eases then ges worse. I hope this course of antibiotics and steroids will knock it on the head darling. xxxx

[Neonkittie17 in reply to sylvi]

I know how sepsis can knock you for six for a long, long time. It’s bound to. I knew my own issues were not just picking up colds and flu. Even before the pandemic. They were very low immune due to Ig’s. When I told my consultant she said she agreed. You are right to pursue it. I am doing the same myself. Mine is very much the same: up and down with the episodes and abx every second month, since early 2018. It is demoralising and exhausting. 🤨 Keep at em to try get it sorted. xxxx

[sylvi in reply to Neonkittie17]

Sepsis, MTX and ra have all contributed to how i am today darling. xxxI am not in a good way/. xxxx

[Neonkittie17 in reply to sylvi]

Understand. I’m rock bottom in energy as no real immune system, but I’ve not had the severity of sepsis. I hope all is being done for you that should be. You take care all you can and try pace all you can. xxxxxx

[sylvi in reply to Neonkittie17]

Like you i am not good and i wonder what next is going to happen to my body. Hugs darling. xxx

[Silverpixie]

I'm on tocilizumab and had a baseline cholesterol test before I began. It was less than 4 (bad stuff) and my good cholesterol was really high. This drug has been wonderful for me but my last cholesterol test was 7 (bad stuff) but good cholesterol was higher too. Apparently my ratio is good. My consultant told me that as my diet seems good there is not much that will make a difference diet wise. Tocilizumab has also raised my blood pressure. However I am told it is all about risk/benefit and life has been transformed by tocilizumab. Hope this helps.

[Angels54]

Hi Ihave just been to discuss this drug and decided to op out , I have a number of medical problems, plus my lungs are weaker which I know is due to drugs I have taken, I used to cycle and kept fit so this came as a shock . I had a long chat with consultant and felt quite tearful when I came out , now Ihave to try and pick myself up once again , I read different stories and feel it for people , nobody knows this awful pain , I hope you get some support , keep us updated always here to listen .👍

[Skyeblue2 in reply to Angels54]

Hi Angels 54.I too have a lung complication from a drug that entered my lung. The life changes we have to adapt to can be soul destroying and challenging and at times it feels as though we are grieving for what we have lost. I have a great care support team and feel very lucky in many ways, but RA can suck the joy out of you. I've lost count of the many times I have had to pick myself up, but I have done so and will do again, no doubt! I wish you well.

[Angels54 in reply to Skyeblue2]

Hi just want to say thanks for your comments , good to know people understand.👍