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Rank: Advanced Member
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The RA nurse rang me on Friday to ask me to go for another blood test. She said the one last week showed some concerns and asked me about painkillers, MTX and leflunomide and if I'd had any alcohol. I had 2 glasses of fizzy wine on my b'day on 3rd - felt very guilty for being found out!
Not sure what the problem is with the liver function. She said she will ring me tomorrow with the results from Friday's test and will let me know if I need a break from the MTX etc. So disappointed as my ESR is now down to 40-odd - lowest it has ever been since I started wiith this. Would the liver problems explain me feeling headachey, very tired and generaly yuk? My eyes have also felt wrong - sort of hot and sore.
Adding this to my diminishing hair and I feel and look a mess! Maybe it's a good job we are snowbound and there is no expectation to go out or look anything other than warm and comfortable. Hope everyone is managing to stay warm XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ailsa
Bad and upsetting news for you. Upsetting I am sure but just think it is a good job they do check the blood tests. Hope your appointment goes well tomorrow. The upside if they do suggest you stop mtx tomorrow - You will be able to 'drink' ha ha
In Somerset it snowed over Friday night to Sat morning and we had 6 inches so roads are dreadful. It is -7 outside and they forecast more snow tomorrow. All this is quite unusual for the sunny south west.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Ailsa, Yes, if your liver enzymes are raised it could explain why you feel so poorly. When mine were raised I thought I had flu, just felt dreadful, achey , headaches and absolutely no appetite. Don't despair over the mtx, you may only need a short break from it and then be able to start again with no ill effects. I still take it and have had to stop it twice for raised liver enzymes but for the last 3 years have had no problems with it. Don't blame the drink, 2 glasses wouldn't harm ,it's almost definitely due to the mtx. I always blame the drugs! Keep warm, Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Yes i also had a couple of blips when on MTX but they settled down again so i hope this is the same for you. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Same here but it all settled down.
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Joined: 2/26/2010 Posts: 271 Location: hampshire
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Hi Ailsa, I had raised ast levels due to mx, just had to come off it for a week and then gradually build it up again.
Hope you feel better soon,
Keep warm!
Heather xxxx
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Thankyou girls - I'm still waiting to hear from the nurse. Might give her a ring in half an hour if I don't hear. I feel a bit better again so hoping the levels are back to normal again. Will keep you updated Snow looks set to last as it's never going to thaw with the temp at -9! Stay wrapped up XX Ailsa
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Hi Ailsa
I had to stop MTX for a couple of weeks in Sept due to a raised liver count but doctor thinks it could have been due to a tooth infection although he did ask me if I had been drinking.
Glad you are feeling a bit better.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ailsa,
hope your liver function gets back to normal quickly,
but glad you are feeling a bit better now.
yes we've been snowed in over the weekend in my Village but Hubby took me food shopping yesterday afternoon after a lot of shovelling of snow to clear our drive ... i really don't have the confidence now, especially as i know i would be stranded if i got stuck somewhere as my knee's wouldn't carry me in the snow.
non of our main roads have even been gritted, my Hubby has been issued with snow tyres for his van from work and he said they are really good.
let us know how you are getting on,
Suzanne x
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Joined: 3/4/2010 Posts: 576
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Thankyou! I'm back to normal so can continue with MTX but finish Leflunomide as the paperwork is all done for Enbrel so it should take 2 weeks. I'm expecting it to be longer with Christmas, snow etc but at least I know it is on its way. I think I will be celebrating Christmas with Pepsi Max though - I did NOT like the feeling when my liver was wrong and will be happy not to feel that way again! XX Ailsa
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Rank: Advanced Member
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Joined: 8/1/2010 Posts: 255 Location: hampshire
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So glad you are feeling better. I gave up alcohol completely when I went on mtx. I know it said we can have a bit, but I was so freaked out by the way I have to have 2 weekly bloodtests and keep such a close eye on everything that I decided not to take any chances. So that was 1/2 a glass of wine on my wedding anniversary and something similar on Xmas day, and that's my lot. I remind myself of all the calories I'm not consuming - and my husband smiles because it means I drive, he drinks Wishing you a warm and happy Xmas love Sue
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Ailsa
Great news that you can re start mtx well done. Hope the enbrel arrives soon after xmas.
Happy Christmas and pain free
Rose
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Happy Christmas to you to Rose - and everyone else who has kept me sane this year. Don't know where I would have been wothout you all XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Ailsa
Just wondering how things going. Still on MTX and no problems ? Has the Enbrel arrived yet ? How you doing ?
As you may remember I saw second council session on 14th Dec to start TNF. We 20th Jan and not heard. I know that the Christmas period has a lot to answer though.
Let me know how you doing via this post and I will post mine on my starter topic (humira / Cimzia what should I do? )
Rose
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Thanks for asking Rose - I had a call last week to say the enbrel would be arriving on 25th and the nurse made an appointment to visit me on 27th. Meanwhile, I have been struggling a bit as the nurse said to stop Leflunomide in mid-December. After 2-3 weeks, all the inflammation shows back in my blood so I had a depo of pred last week.
I'm really feeling anxious about starting it though. My mum is in hospaital with a bad infection and can't manage without oxygen at the moment. Dad had 2 falls this week too so I have been run ragged, on top of not feeling good and school too! Part of me wants to start taking it to feel better asap and the other part worries that it may make me feel worse for a while and there is no time or space for that.
I've made an appointment to see the GP - the one who has been treating Mum and Dad too - to discuss it with him on Weds night. I just feel I need some reassurance that this is the right thing to do right now. Then I feel guilty as I know I should be grateful to be starting the treatment ...
Hoping you hear about yours soon too Rose and that work is still ok for you. XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ailsa,
just wanted to say sorry you're struggling at the moment.
i'm like you feeling anxious about starting new Drugs again.
i go for Appointment on Weds this coming week about going onto Anti-TNF's ... and to be honest i'm scared and anxious just like i was having to start on the Methorexate and Hydoxy which unfortnately haven't worked.
i also went for a chat with my GP last Thursday and he gave me his re-assurance that if i was offered Anti-TNF's then to go for it.
i have no idea what will be offered yet but Rheumy Nurse told me on the phone this will be the next step having failed on the other two.
hope your Mum and Dad improve soon,
take care,
Suzanne x
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Rank: Advanced Member
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Joined: 3/4/2010 Posts: 576
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Thanks Suzanne - yes, that's exactly how I felt in October when I went to the rheumy after MTX, Leflunomide and hydroxy weren't working/tolerable. The only thing I would say is, if you haven't tried Leflunomide and it is offered, I would try it. It really made me feel well, but caused HBP so I had to stop it.
Good luck on Weds at your Dr appointment. Let me know how you get on and I will do the same XX Ailsa
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Ailsa Sorry to hear of all your recent problems; you certainly seem to be in the thick of things right now. I don't know how you are managing at the moment and understand your anxieties about starting on Enbrel. Would it be possible for you to take some time off school for a short while especially when you are looking after your parents as well? It must be difficult to do that though. Do you have Year 11 classes? I would say that as you have been off Leflunomide for a few weeks now it would be the sensible option to start Enbrel as soon as possible. I'm on Enbrel, have been for about 7/8 years (lost track!), and it really is a good drug. I don't think I felt any worse when I started it and only remember how I was suddenly able to do so much more. It's possible without Leflunomide in your system you may be on a downward gradient at the moment and this may continue until the Enbrel kicks in. Please don't feel anxious I am sure you will have success on the new treatment. Try to stay positive and allow yourself some "me" time regardless of what's going on around you. Thinking of you Ailsa, let us know how you go on, Lyn x
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Thankyou Lynn - I think you are right and I need to just get on with the Enbrel. I had to take Friday off school as my mum was refusing to go in hospital and dad was struggling to cope. Hoping he can get a rest while she is in and we might need a rethink before she is able to come home. She has become very confused and is up in the night which is very hard to deal with.
We have just had a big reshuffle with Y11 and I have a group who took the GCSE in November and got D grades ... no pressure there then! They are just doing Lang though so at least I don't have to cover any of the Lit stuff. I'm aiming to keep going in but I haven't been able to do any extra at the weekend. No planning or marking so I will just have to wing it for a while!
I had a lovely moment in visiting tonight. One of the nurses caring for my Mum was a girl I had child-minded for 18 years ago when our daughters were a few months old. She was only in her teens and training and I looked after her daughter for about 9 months. She has since married and had 2 more daughters, one of whom is in Y7 at my school, and in my class! It felt somehow right that she is nursing Mum and I'm teaching her daughter!
It's good to hear you have been taking Enbrel successfully for quite a few years Lynn. I have been re-reading Julie's Humira blog to find out how she felt - thanks Julie for your blog. It really is helpful to go back to posts and see how others managed at different times. Don't know where I'd be without you all xx Ailsa
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Lyn - just realised I have been spelling your name wrongly. So sorry
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