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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Had my first appointment at Queen Mary's Sidcup today, what a difference!
You'll hopefully recall I wasn't happy with my consultation at the first hospital when consultant told me she had no time to answer any questions!
Well it's taken a long time but I have eventually moved hospitals, what a completely different experience it was too. No rushing me through everything, able to ask questions, no one coming in and out of the room interrupting.
Was quite pleased with how things are going, although I still have some pain, there is very little inflammation and my bloods are all back in range, phew! I now also have a telephone help line to the Rheummy nurse.
So no changes to my meds apart from instead of 4 x 2.5 mg of MTX now just 1 x 10mg tablet, which is good as those little tablets are easy to drop, Hydroxy 200mg daily and of course folic acid.
He's seeing me again in 3 months but said if any problems crop up, just to get in touch.
I'm so pleased that I persevered.
Mary x
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Mary I am so pleased that your consulatation went well. It is so good when someone allows you time to express exactly how you are feeling. I also go to Queen Marys and have always been pleased with the care I receive. Since starting anti tnf's I only see the Rheumy Nurse and she is great and I can always ring between visits. Even though I have moved out of area I still continue to go there as I have been so pleased with the care. Just as a note I also received Methotrexate in 10 mg tablets from the hospital but when I have had them dispensed locally they will only give 2.5mg as this is the local Healthcare trust policy as the drug is so potent. Best Wishes Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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   Hi Mary I'm so glad you have a hospital that has taken you under their wing to give you the time to speak and time to listen to you! Its so nice to know you are getting looked after at long last! Fantastic to know that you have someone to call as well, do call them if you have any questions. I have a good hospital.....shame not everyone has good primary care trusts. Enjoy your evening. Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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glad you got attention now,what a relief it makes to be listened to, the mtx tabs are awful at first so fiddily, i am now on 25mg inj so much better but i have to stick to the same chemist for repeats of them,i did have to go to my local cancer clinic at first when i started injections but now get 8 weeks supply at a time,good luck it does work so well i also take the same mix as you,when your mtx goes up in dosage keep an eye on your hair ask about folic dose increase if it starts to thin,just a note for you,dorothy
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Rank: Advanced Member Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Dorothy,
I don't think they will put my MTX dosage up as my liver wasn't very happy on a higher dose.
Also I felt very spaced out when I was on 20mg of MTX. Just hoping I can stay stable as things are now.
Hopefully I won't have any trouble with my hair, it seems ok.
Mary
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Rank: Advanced Member Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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mary,i wish you all the best,so far i have been ok but i get a bit paranoid now and then with the mtx ie liver mostly,it takes alot to start the stuff in the first place,i have been on 25 since the beginning so far so good as dont fancy going down that road again trying out another mix but reading your note i get a bit weird now and then didnt think about it being meds just took it was doing to much so i just rest up till it passes,will have to enquire,especialy now with all the talk of drug test on drivers,take care,dorothy.
just wondered did they stop the mtx straight away when the test showed problems,i worry incase it gets missed,i never get told anything about my test results i ask constantly but get"oh there fine if a problem will let you know" so annoying.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Mary,
good news for you.
must be re-assuring to know you have a good Rheumy Team now ..something i have always been thankful for.
on the 10mg Methorexate tablet, i get mine dispensed through my Doctor's Surgery and was always given a 10mg tablet, ( which is the dose i am currently on ) but now apparently they are no longer available so i am on the 2.5mg one's. the only other time i used to take a 2.5mg was when i was on 12.5mg or 15mg.
interesting it varies,
i have read posts on this before.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Dorothy,
No I wasn't informed straight away when my blood markers went high but a couple of weeks later when I had a consultation (was quite annoyed about that at the time), this meant I took two more doses of 20 mg. i had been told that if there was a problem i would be informed. My MTX was never stopped just reduced from 20mg to 10mg and I carried on having two weekly blood tests.
Mary
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Rank: Advanced Member Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi, i find this scary as i dont always get my consultant at regular appt as they keep getting cancelled and moved so i end up not seeing him for a year or more,i do go to gp when this happens but he is limited,even trying to get a rhumy nurse is stressfull, i will try and push for more info on my blood results via the gestapo at my surgery,might try talking to the nurses there,i feel i have a good team but not always the best to get hold of, just luck if noticed in time maybe,thanks mary,dorothy.
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Rank: Advanced Member
Groups: Registered
Joined: 10/13/2011
Posts: 62
Location: Cirencester
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Dorothy - you could try talking to your GP about your blood tests next time you see him/her.
When my GP said ring up & get your results you don't need to make an appointment every time, I told him all reception will ever say are 'Dr says they are normal' or 'Dr wants to speak to you' so he put a note on my records that I am allowed to have the actual results & I've only ever had a problem once & I think that was because she didn't understand the blood tests herself.
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