Balance problems with Anti TNF drugs?

[Cutes]

Hi,I just wondered if anyone has experienced any problems with their balance since starting anti TNF? I was on Humira and am now on Imraldi once a fortnight. I have had balance problems for a while now, but always assumed it was related to my hearing loss problems. However, I had to have a break from Anti TNF from April-December '20 and gradually realised that the balance problem seemed to have decreased considerably. I re-started the Imraldi in early December and the problem has returned. (I haven't re-started the methotrexate, so it's unlikely to be down to that.) It's nothing too serious, but I would be interested to hear if anyone else has experienced this too? thanks

[allanah]

I'm sure a lot of us have bits of issues with drugs. But I suppose it's what you can tolerate long term in your daily life. Fie example I was so sick on mtx, even when injected, my rheumy just said well you cant live like that and swapped me to sulphasalasine which I was fine on, but others might not be? I am lucky my rheumy listens x

[Cutes in reply to allanah]

Thanks - yes you are right, for the most part the benefits outweigh the drawbacks. The balance issue isn't too much of a problem for me, but I would just be interested to hear if anyone else has experienced it as I hadn't heard of it being one of the known side effects. As for methotrexate - I too wasn't good on it for anything above 7 mg - feelings of nausea for 2 or 3 days after. I have been taken off it for the moment, because I was getting a lot of ENT type infections and my (very accommodating) Rheum. consultant thought it might help - so far so good. My hands and wrists are rather sore generally, but no real flare ups since resuming the Imraldi injections. Typically before starting/resuming anti TNF treatment, joints would flare randomly for about 36 hours and then be fine again after that - until the next time...

[Neonkittie17 in reply to allanah]

It is indeed what you can tolerate but feeling sick is an awful one isn’t it? I switched to sub cut Mtx and was fine. I am too tolerant my rheumy/nurse always told me. I think that’s half the general problem in all areas! 😁😳x

[Neonkittie17]

I was on Humira for 12 weeks in 2013 but sadly it did ... not a thing and I didn’t get any side effects either. I hope these could subside for you. .

[Cutes in reply to Neonkittie17]

Thanks x😊

[Neonkittie17 in reply to Cutes]

❤️x

[allanah in reply to Neonkittie17]

😍

[Neonkittie17 in reply to allanah]

😍

[Adnil53]

I’m sorry I can’t help you with that x

[bienassis]

Hello Cutes,

I'll start with the Methotrexate which I have been taking very successfully since 1998. I have never had any problems with it, but a severe flare after an accident in august 2019 prompted my rheumatologist to add an anti-TNF medication to the mix. The drug, Remsima, has caused several side-effects among which dizziness and eczema are probably the most troublesome. I started taking it by hospital infusions last March 2020 and in November switched to injections at home.

I must say that Methotrexate has been the most successful medication I have ever taken for rheumatoid disease, and in many ways I was reluctant to add the Remsima to the mix but it has controlled the flaring and therefore should slow the damage.

I was diagnosed in 1967 - so have a long experience. I am now 85, so don't have a lot to complain about. I'm watching my progress with the anti-TNF and hoping the side effects won't worsen. The eczema is a nuisance around the eyes and I'm currently trying various creams to soften the scaling. I really need to see the rheumatologist but no hope of that just now; I've been told that perhaps May might be possible. I've spoken to her about the problem in telephone consultations, but this skin problem needs to be seen,

As for the dizziness - I'm very cautious and dread another fall. I always carry a stick when out - and I'm always with my husband.

I think I'm right in saying Methotrexate has been one of the most successful drugs - but, of course, we are all individuals and will react differently. No doubt other posters will have different stories to tell.

Anyway, I do wish you well; the dizziness does seem to be a drug related problem and caused by the anti-TNF - but maybe another type of biologic would be more appropriate - that may also apply to me.

bienassis xx

[Cutes in reply to bienassis]

Many thanks for you your reply - all very interesting. To be honest I had never really considered that the dizziness might be due to the anti TNF, mainly because I have always had problems with my ears anyway, but when I have my next appointment with my consultant (tel or face to face - depends how things pan out Covid wise I guess), I will ask him about that. Sorry to hear about your eczema problem - that must be such a nuisance for you and very uncomfortable. As you suggest, maybe your consultant might consider switching you to another Ant TNF drug. I haven't heard that the one I am currently taking, Imraldi, causes that side effect, but I guess different people have varying reactions to these things.

Actually, I have just remembered that my boyfriend had bad eczema when I first met him about 12 years ago. It did gradually improve, but he had one very troublesome persistent patch on his shin. We found out, quite by chance, after a few swims in the sea whilst on holiday in N. Norfolk, that sea water obviously helps him. The patch cleared up completely. He now makes a point of getting at least 2 or 3 swims in every year and doesn't have any eczema now. You could try a sea salt solution perhaps, although if the problem is in the eye area, that might not be wise. Anyway, best of luck with finding something to help with that.

[bienassis in reply to Cutes]

Hello Cutes

I was very interested about your boy friend's experience with the sea water. I might try a wipe around the eyes with some salted water - no harm in that I'm sure. I'm hanging in there because the Remsima is really working as far as the inflammation is concerned. I did have eczema on my right calf - discoid eczema - which is a well-known side effect of Remsima. It was treated with a cortisone cream and is now under control. This is not, obviously advised for the eye area.

Dizziness is one of those side-effects that some people have from any medication. I think often it's a lack of balance rather than true dizziness. Dizziness, if severe, can make the room spin - even for a few seconds. If a change of anti-TNF is necessary I'll keep in mind your drug Imraldi and mention it to the rheumatologist when I see her - but since it's not quite one year since I started Remsima (March 2020) I'll soldier on for the moment.

The idea of my original reply was to help you - but you have helped me much more with your suggestions!

Thank you. bienassis xx

[Cutes in reply to bienassis]

Hi Bienassis, I am glad I could be of some help, although I would just be a bit wary about letting the salt water too near the actual eye. Having said that, I guess most people get sea water in their eyes when swimming in the sea.

Yes, it is just balance rather than dizziness that is my problem and it tends to be more of a problem if I am a bit sleepy, i.e. first thing in the morning or when going to bed. I just need to ensure I go up and down the stairs very carefully! I have no problem with cycling, so I don't think its tinnitus related; I understand for other people who have both hearing loss and tinnitus, that they have problems cycling.Thanks for your help and have a good weekend. Cutes xx

[Kalimera57 in reply to bienassis]

Your RA history is so inspiring and gives me hope that I will have a decent enough length of life after having the worst year ever with RA triggered by having my first flu jab. My GP told me it’s a ‘ known risk’ for people with RA. I wish I’d known. I would never have had it. I must be very sensitive to vaccines as the first dose of Astra Zeneca also worsened my RA too and I became bedridden for a few weeks. I feel I’m on the mend now and am starting Imraldi next week. Your story is so encouraging.

[bienassis in reply to Kalimera57]

I do hope you find Imraldi does the trick for you - it's not easy finding the right drug. I've been very lucky with medicines on the whole, but we all react differently. There's no easy answer to this disease - until the cause is found, it's a bit like fumbling in the dark. But there are so many drugs to choose from these days, which is a huge improvement on the 1960s.

I didn't realise that RA could be triggered by the flu vaccine - I had never heard that. You also mention your bad reaction to Astra Zeneca. As you say, this is probably a personal difficulty you have with vaccines generally. That is a pity as we rely so much on vaccines.

I'm getting on well with the Remsima (Infliximab) after a slow start. No flares since I started it and in spite of the damage done over so many years my walking is improving, although slowly. I continue with Methotrexate - the two drugs work together.

And yes, there's no reason why your life should be shortened by RA; there isn't that awful air of gloom and despondency today that accompanied a diagnosis of RA in the past. The care has improved enormously and, just as important, patients have access to important information about research and drug improvements.

We are all going through a dark time with the Covid pandemic and many of us find it difficult to see our rheumatologists. But I do hope you find your start on Imraldi goes ahead without interruption. It is important to have access to help if you have any questions. I daresay your hospital has a Helpline.

Enjoy the summer, try to relax and keep smiling!

love, bienassis xx

[Kalimera57 in reply to bienassis]

Thank you so much for replying to me. My first ever flu jab triggered my worst ever flare. I’m 68 and have had RA since I was 38 but I’ve been blessed with remissions ( and no meds or joint replacements ). I had 2 remissions from getting flu, each one lasting 3 years. Years ago I read in a Sunday supplement that Kings College hospital I think it was ,were doing research into the flu virus and autoimmune immune diseases and leukaemia. I think my reaction to the flu jab is connected to my body going into remission naturally catching flu. My last remission ,not caused by catching flu ,was 12 miraculous years. Could I ask you what has helped you with RA? For me I’ve always tried to eat very healthily and as a non driver I’ve walked and walked. Yoga and reflexology have also helped me a lot.

I feel NRAS should interview you for their web site - your responses to me and the other lady have been really so encouraging. Thank you again bienassis

[bienassis in reply to Kalimera57]

Hello Kalimera

I was pleased to hear that I have been of some help. Sometimes just a word of encouragement from a fellow sufferer is all it takes to boost moral.

You are not by any means a new recruit to the ranks of the RD brigade! Having been diagnosed 30 years ago has given you a good insight into the ups and downs of the disease and how unpredictable it can be. From what you say you are coping really well - eating healthily and exercising when you can.

It must be the long remissions I've been lucky to enjoy that have helped me to cope for so long. Not forgetting my husband who has been such a support, especially during several stays in hospital in the early days when my daughter was a child. Because of the lack of effective medication much damage was done in those early days. I had some surgery to straighten the fingers on my left hand - enough, at least, to give me back some use in them; and the head of the radius was removed on my right elbow allowing some movement in the forearm. The removal of the synovium from my right knee two years after diagnosis also helped to keep that knee active.

In the early days, the only advice was bed rest if things became very bad, and since I wasn't working I was able to do that - it meant a hospital stay, but, as mentioned above, my husband was such a help.

I have always eaten quite healthily and have maintained a sensible weight - not because I have unusual self-control, but simply because I've never been a big eater - in spite of my husband's excellent cooking. He is interested in food generally, and takes care of all food preparation. Some years ago my then rheumatologist recommended taking Vitamin C daily. She claimed that Methotrexate depletes the body of that vitamin, and the vitamin also helps the absorption of iron. Anaemia is often a problem with RD.

You will know what a negative effect stress can have. There was a very interesting article in the NRAS magazine way back in 2018 about research being carried out into how stress effects emotional well-being and mental health. There seems to be a connection between the brain, the nervous system and the immune response. The article is not an easy read, but it is worth the effort.

The article is by Andrew J Holman MD (University of Washington) and is headed: "RA, stress and the autonomic nervous system." It is introduced by Professor Peter C Taylor (University of Oxford). The article is in the Summer/Autumn 2018 NRAS magazine.

This post is rambling on rather a lot! Do take care, I think you are handling this wretched disease as well as anyone.

Keep positive!

bienassis xx

[Kalimera57 in reply to bienassis]

Thank you for your lovely reply bienassis. I will look that article up. We’ve both been fortunate with our remissions and eating healthily has also helped. Very best wishes to you. xx

[Adnil53]

Sorry I can’t help with Tnf

[compassrunner]

I have just come across your original post whilst searching for balance problems with adalimumab. I started taking fortnightly injections of Amgevita (Humira) in October 2020 to supplement my methotrexate after a particularly bad and long lasting RA flare. In October 2021 I started to have minor balance issues which I associated with an ear problem. After a few weeks it got worse. I could not walk in a straight line and had to shuffle along, I kept bumping into things and I swayed when standing still. My handwriting also became a jumble. My GP sent me for a CT followed by an MRI scan, both of which showed nothing seriously abnormal. The condition continued to worsen and at the beginning of March 2022 while talking to an RA nurse she suggested that I stop taking the Amgevita. After 4 weeks (2 missed injections) there was a slight improvement. After 6 weeks there was a significant improvement. Now after 7 weeks I would say the improvement is 80%. I am currently waiting to see the RA consultant. I am convinced that the drug somehow affected part of my brain but it is not,as yet, proven to be the case.