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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello All,
As you are aware I have been off work since March 23rd and my RA is still not controlled. My full wage has stopped and now on
a reduced wage until end Sept.
I have been on Leflunomide for 4 weeks but was getting AWFUL headaches and my Rhummy nurse and Doc said to stop so
I have been off them since last Thursday. I think in must be the drug causing the Head pains as apart from last Friday I
thankfully not had any since) I speak with my Rhummy nurse tomorrow. Another DMARD which likely not to work. Has anyone else had this ?
I saw my doc on Tuesday this week and agreed the RA still active as my wrist, fingers, and ankles and feet (worse bits)
all swollen so he has doubled my anit inflam (only been on them for 1 week) Celecoxib . Also going tomorrow for the
Practise Nurse to give me a depo.
I walked to the Docs on Tues there and back(about 1 mile) breaking for a cup of tea in shop, but I exhausted myself
so was no good for anything Tues evening and yesterday I was in bed until 11 am and could hardly move all day. I
wishes my time away to go back to bed. How sad is that. This dreaded RA REALLY gets you down.
Yipee, today though feel much more with it and this afternoon having my hair cut so that will make me feel better.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Rose, Sorry you are having such a tought time - constant pain is so very debilitating. I hope the depo helps and you start to feel better. RE leflunomide - this was the fourth drug they tried me on and it was a nightmare. I had headaches, and horrible sweats, which I would have put up with, but then it began to play havoc with my liver, so I had to stop taking it.It was the only DMARD that made me feel really ill. It was after the four DMARDs and various combinations of them had been tried and failed ( 18 months in total ) that I was assessed for anti-TNF therapy. Has it been mentioned for you? Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Rose sorry your in pain, i too tried a lot of the DMARDS but the first one was sulfasalazine i was on for 9 years and was able to work, then i eventually got pregnant and went on steroids, after the baby was born i was put back on the sulfa but it did not work so the next 4 years ive tried a lot of the dmards but they have either not agreed with me or have not worked , i was passed for Rituximab 9 months before i actually started it because i had to have a knee replacement and the consultant said i should wait till after the op, these drugs take a few months to kick in so hopefully it will work for you, the depo will give you some relief, i know what you mean about being tired all the time its horrible,
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Rose
Yes I know the Leflumonide headache very well. It is very common I believe. I had to come off it and then went on Sulfasalazine. I tried this for six months and it did make a slight improvement. I did not have any side effects with this drug. I am now on my second anti-tnf having had bad side effects on the first.
Do not give up, as the next DMRAD may be your salvation. Each person reacts differently to drugs and just because you have failed on one, does not mean that the next one will not work. There are many options out there for you but it is just so annyoying when you have to wait to see if they are going to work.
If you are exhausted everything seems to be a downer. The depo injections are a life saver and they will eventually find the right combination for you.
I hope you see some improvement soon and hope the hair cut went well.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Rose
I know you have been having problems with leflunomide, at my commencement of the drug I felt very poorly and had severe bad heads but it did pass for me. Nearly six months down the line my ESR and CRP levels are still fairly high, together with very severs pain in hands,wrist and shoulders and achy bits elsewhere. Painkillers like co cod and tramadol didn t work so taking Butran patches for a week have been a life-saver. Big problems trying to contact rheumy nurse and consultant, been a nightmare today to be honest. My GP suggested I saw him privately ( also said this to four other patients this week ! ) so have appt Monday evening with my consultant. he is a good , but I feel he has too much on his plate as he is the only consultant at the hospital and it covers a very large area.
I m getting my cut on Saturday too, does make you feel a little better.
I ll let you know how it goes with him on Monday.
Take care Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Rose,
Sorry you have been having such problems.
I had headaches with leflunamide too. Hope the depo injection helps and I hope you can find some treatment that works for you soon.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Thank you all for your words of encouragement and it is good to know that I am not the
only one who has had these bad head aches.
Will let you know what the rhummy nurse says when I ring tomorrow .
Julian I will be interested to know how you got on as well.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Rose,
Hope u feeling better after haircut yesterday xx
I get terrible headaches at times with my sulphasalazine - its such a strange one - now known as my "sulpha head", i hate it but those meds work for me so its weighing up the pros with the cons, really hope you soon find something that works for you, hope you get some really good rheumy advice xx
I try and control things by spacing my meds well and drinking plenty of water ~ as advised by doc as magic medicine many years ago,
its awful that peeps are having to wait so long for their rheumy appointments - it is like that here too, my GP is fantastic tho' which makes up for things a little,
Take care all, love from liz xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello All
Update today. I rang my rhummy nurst but she in clinic all day said would get back to me
on Monday. So still off the leflunomide until I speak with them
HA HA. Went to the surgery for my injection and the nurse looked up at me and said
' i think there is a mix up ' i asked why , she said ' you are on my list and this is
the family planning depo clinic' . . . . . why are 56 she thought I was too old - well
I never. I did have the inject eventually. Ha Ha . did make me laugh and my
Mike when I got home
Rose
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello all,
My anti inflam having the double dose has today appearred to make me much freeer.
As a result if have catching a train to the east coast to visit and chill out with my sister.
Onlt see each other couple times a year. So really going to enjoy the rest.
Going tomorrow for 4 days.
Keep well all
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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Have a lovely restful family time Rose, xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Enjoy the time with your sister Rose, you deserve a good rest.
Love ,Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hope you have a fab time with your sister Rose
Sophie x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Rose, Hope you enjoy visiting your sister. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi rose aww thats good idea trip away to coast enjoy hope you have lovely time.what part east coast im from east england to going home end august see my family.be thinking fo u glad you got your depo in end. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Melly, my sister is in Felixstowe. So a long way from me so looking forward it
Hope the train journey will not tire me too much.
Rose
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Rose
Have a lovely break with your sister, will do you the world of good. Pleased you are feeling a little better on the higher dose of anti- inflams.
Julia xx
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