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Rank: Newbie
Groups: Registered
Joined: 1/6/2010
Posts: 8
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Hi Guys I haven't posted for an age but I have a query that I hope someone may be able to help me with. I have just had to stop Humira due to increasing neurological symptoms and I wondered if anyone had had similar problems and if so how long these side effects took to stop/get better. My GP has done blood tests and excluded a lot of other causes and my Rheumy Consultant has spoken to the Neuro bods and referred me for an MRI and nerve conduction tests (to look into the possibility of MS) so I'm hanging around in limbo at the moment. If anyone has has any similar experiences I'd be grateful for any info! Thanks Carie 
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Hi Carie,
What sort of side effects are you having?
I know some of the Forum members have talked about having neurological problems linked to possibly anti TNF, notably Jenny, who are in hospital at the moment because of it. I have been on Cimzia for 18 months and have had no side effects to this date. It sounds rather worrying, if our brains can be affected.
What anti-TNF are you on? and for how long?
Merete
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Rank: Newbie
Groups: Registered
Joined: 1/6/2010
Posts: 8
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Hi Merete
A lot of numbness and tingling - feet, back, right knee and leg, right side of face and neck, little and ring fingers both hands, balance affected and co-ordination also ( not to mention my brain seems to have shut down!). I initially started on Enbrel in Feb 2008 and moved to Humira after 18 months or so when it sort of wore off! I've now been off the Humira for 5 weeks. I understand that the Humira has a half life of about 2 weeks; unfortunately the numbness etc. is still spreading and inevitably the RA symptoms are creeping back. I'm hanging on to my job by the skin of my teeth so it's a bit of a worry.
Neuro problems did not feature significantly when I originally started on the biologics but it seems that more people are having these side effects. It is something that is a concern to people that are on or are considering starting these drugs.
Carie
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Carie, that sounds really worrying and alarming. I do get some numbness in my feet, when I lie down at night, but I attribute that more to poor circulation.
I wonder if NRAS is aware of these symptoms in some users of anti-tnf and will be investigating?
My plea goes out to the Forum members to read your post and start talking about this. Most of us are on biologics these days. It is no good, we end up with worse illnesses than the RA, so this is an SOS to you all to tell us, if you are having similar symptoms.
Merete
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Carie Sorry to hear you are having 'neuro' symptoms and I would suggest initially you might contact the NRAS Helpline for their thoughts. Neurological issues do seem to be coming more prevalent with the long term use of biologic drugs however I'm not sure whether there is as yet enough evidence to suggest that it should be a concern. I started with neuro problems myself last year and was being assessed for MS, Enbrel was stopped immediately after 7 years, previously on Infliximab for 12 months. The symptoms all but disappeared but I then started with severe heart problems and advanced heart failure, possibly due to RA and its legacy of inflammation. Had a CT Angiogram last week and awaiting results. With hindsight I wonder whether my neuro issues were due to lack of efficacy of Enbrel allowing the poorly controlled inflammation to attack the nervous system and then the heart. Sheer speculation on my part, with some limited research, but RA is systemic and sometimes the more worrying aspects are those that we don't see. Whilst it's in the joints you can see what's going on. Elsewhere is something of s mystery! Lyn x
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Rank: Newbie
Groups: Registered
Joined: 1/6/2010
Posts: 8
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Hi Lyn
Really sorry that you're now landed with heart problems, I do hope your angiogram has positive results for you - all in all having RA is a bit of a bummer! It looks as though more follow up is needed on all biologics. We all thought they were a wonder drug but maybe it's only now that people are seeing problems creeping in. Still the anti-tnfs worked well for me for four years + so I guess it's about having informed choice.
How long did it take for your neuro symptoms to start resolving?
Take care
Carie x
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Hi Carie,
Just want to know, how you are? if the symptoms are beginning to subside? I really do hope so.
It`s really hot today - 30 degrees in London, where I live. I managed to get up early and was shopping for the whole week in the supermarket by 9.30. I wanted to do it, before the heat really took hold, so I told hubby to stay home, and I would do it on my own. If he was coming with, I would not get out of the door for another hour.
I bought lots of fruit plus strawberries, 2 melons, salads, cucumbers and tomatoes.
I hope, you can enjoy your week-end without having to worry about strange symptoms
Merete
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Rank: Newbie
Groups: Registered
Joined: 1/6/2010
Posts: 8
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Hi Merete It's boiling down here in West Sussex too - I usually like the heat but not so much at the moment. Unfortunately the symptoms seem to be progressing rather than regressing but no doubt we shall see! Congrats at getting all that shopping done; it's much too hot to go out and be busy later in the day although I have to say that Sainsbury's aircon which I usually think is arctic is rather pleasant at the moment  I shall think of you having a massive fruit salad; we're going to a BBQ later which will be fun. Hope the rest of your day is relaxing. Carie
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