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Rank: Member  Groups: Registered
Joined: 12/16/2009 Posts: 21
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Hi, I was wondering if suffering with headaches for long periods of time, is all part of living with RA.
I'm on 10 mtx, hydrochloroquine and 5mg of folic acid per week. I take pain killers (anadin/panadol etc) for my headaches but it doesn't even touch the pain. My consultant sent me for two scans (early on in my diagnoses) due to this and luckily all came back clear, however, nothing more has been advised and I'm left to get on with it. Any help or ways of beating this is appreciated.
Jillx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Jill
I can totally sympathise with you I have headaches daily! Im currently on mtx 15 mg and infliximab infusions. I do wonder if it could be related to the inflammation or whether its another side effect of the medication!
At the moment Ive got a throat and ear infection, probably because of the infliximab, so Im taking antibiotics which have given me an upset tummy! We really cant win..
I would mention it again to your consultant sometimes inflammation in your shoulders and neck can cause headaches.. Sorry i cant help, take care love Ceri x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Jill,
Headaches, never used to get them before taking all the drugs but now cor blimey they can be blinding! I'm on 15mg MTX, diclofenac and paracetamol, opepazole etc They all list headaches as a side effect so who knows what's causing them but some days the paracetamol doesn't know which pain to try to sort out first! I've mentioned it to my nurse who has said that as long as I can put up with it keep taking the tablets, so Hobson's choice really. Sorry not much help but you're not alone
Sara
x
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Rank: Member Groups: Registered
Joined: 12/16/2009 Posts: 21
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Hi Ceri and Sara
Thanks for your replies, just trying to get an angle on what is an "acceptable" side effect pain and consistency wise. I used to get really bad migraines in my 20s that totally disappeared until I was diagnosed 4 years ago (I'm 41!). Now like you I can't remember a day that goes by without a headache. Some days are a lot worst then others, for example, I'll have a nagging headache on the left side which stays for 3 days then on the 4 day it makes me so disorientated that I vomit, and it starts all over again. I feel really bad as after a 10 hour working day which has drained me, I only want to relax and my kids want to play - my husband is very understanding, but I don't want to carry on in this cycle. but have no choice! It's so frustrating/depressing !!
Sorry to rant, thanks for listening and hope your headaches ease soon too.....
Jillx
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Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
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Hi Jill,
Have you been on MTX long? When I started I had blinding headaches, but now (12 weeks later) they have eased off to a bearable level that's generally irritating but not debilitating most of the time. Also, if you're doing a 10 hour working day then perhaps that's not helping and you need to see if you can pace yourself a bit more. Easy to say & hard to do, but I've found that all the aches & pains get much worse when I overdo things. Hope the head improves. Polly
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi, you poor girl, i am mtx and hydroxy with folic thrown in now 2yrs, co-codomls also,when i started this mix i got headaches and had to slowly introduce hydroxy back in, have now found out via xrays that i have 3 discs in the neck and both shoulders gone hence sore heads,then to cap it all was told my neck not curved its poker srtaight so thats me, i always was different,now i have started mtx jags and feel better i get 25ml as i was on 25mg tabs week,thing is trial and error i also played around with my diet and cut out or cut down foods till i got it right for me ie; minnium bread and pastries, was cheeky joined slimming world and i feel ok most days,still get a dull head now and then,worth a thought,good luck
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jill You need to return (or phone) to rheumatology and let them know. Headaches can be a side effects of the drugs but you should not be having to put up with this sort of distress. Side effects do sometimes settle down after a few months as the body gets used the drugs but I don't know how long you have been on them. Certainly 10 hour working days are far too long at the present time (necessary or not) and ffrom what you say it sounds as though you should be on sick leave until the RA is adequately controlled and side effects are minimal. In the long term you aren't doing yourself and your family any favours. Do please seek some medical advice on this. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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You poor thing. I sufferred with migrane type headaches when started leflunomide. I was
taken off them.
Definately seek RA nurse or GP advice.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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That's great advice. No-one should have to go through this. If you can't get hold of your rheummy or anyone in the department, have a word with your GP.
Lots of love
Jeanxx
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Rank: Member Groups: Registered
Joined: 12/16/2009 Posts: 21
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Thanks for all your replies and advice - all is very much appreciated. I've been diagnosed for 4 years and on mtx for 3 1/2 years and added Hydroxy about 1 year ago, after taking me off prednisolene, I also take 5mg of folic acid a week. I've been monitoring this although they are present most of the time as a dull ache, they are definately stronger/worst around my period (slightly before but mainly afterwards), I'm thinking of upping my folic acid as I've read others are on much more. My consultant is very good but very busy and my next appointment is in Sept with little chance of an earlier appt. I wouldn't think my doctor would be interested as he knows little about RA and has said to me before to consultant my RA consultant.
I think I will look more into diet control - thank you Dorothy.
Polly & Lyn, I know what you are saying - I've been saying the same thing to myself, so will try to slow down abit at work, but being a family business - sick leave is out of the question.
Thanks again for all your help and support.
Jillx
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