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Just diagnosed this week Options
lisamcb
#1 Posted : Friday, March 08, 2013 5:54:30 PM Quote
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I was officially diagnosed on Wednesday and it has taken a long time to get there. I am unsure of what the future holds and am keen to speak with others going through the same as me. I have been started on methotrexate, hydroxychloroquine and prednisolone and am keen to hear from others who are on the same medication. Smile
Naomi1
#2 Posted : Wednesday, March 13, 2013 11:12:39 PM Quote
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Lisa I was on 2 courses of high dose prednisolone at the beginning (nearly 2 years ago) and have not needed it since. the Hydroxy and Methotrexate have worked well for me. I get the occasional flare up and have ongoing minor pain which is controlled well by pain killers but nothing like the crippling debilitation of my early illness. I took time off work to begin with to get myself back on track and although I've had to go part time (3 days a week instead of 5) due to fatigue I am able to work again which is great. I hope the drugs work as well for you as they have done for me.
jenni_b
#3 Posted : Thursday, March 14, 2013 4:02:30 PM Quote
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Hi

I'm on the pred but not the other 2.
The other 2 are dmards
They didn't work on me. But they are the gold standard ra treatments
They are very good indeed at controlling the disease
Normally takes about 12-16 wks before things start to really improve on the dmards so my guess is your very wise rheummy started you on steroids to help kick start the getting to feeling better process.

Jenni
how to be a velvet bulldoser
sylviax
#4 Posted : Monday, March 18, 2013 7:27:24 AM Quote
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Hi again Lisa - yes I started on the same mix as you. My steroids only lasted for a month and then I gradually reduced and came off them. I'm still on hdx and mtx, and am very stable now. I've had to adapt, and in the early days I cut everything back to the bare minimum and concentrated on resting - but with 4 teenage kids all living at home at that time, it was still pretty busy! Now it's about a year further on, and I'm back at work and enjoying all aspects of life just like before the diagnosis - I am careful with my joints and focus on gentler forms of exercise, but if anything I enjoy life even more as I've learnt a lot about myself and my family are very supportive.

Wishing you well, as you adjust and give your meds time to settle down and do their job. - Sylvia xx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
Naomi1
#5 Posted : Saturday, March 30, 2013 12:44:58 PM Quote
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How are you doing Lisa? Are te steroids working for you and hpw are you getting along with the 2 disease modifiers? Naomi, xxx
lisamcb
#6 Posted : Saturday, March 30, 2013 1:01:02 PM Quote
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Location: Dumfries
Hi Naomi,

I am doing not too bad at all thank you. The steroids are halved now and my knees are wee bit swollen again + shoulders can be sore but fingers crossed that is my only complaint. I do notice feeling nauseous a few days after taking the metho but nothing that I can't manage. I am at the Rheumatology Nurse on Tuesday for the first time so will see what she has to say as I haven't seen my x-rays or know what my RF is? Hope you are doing ok and looking forward to warmer weather?

Lisa x

sylviax
#7 Posted : Sunday, March 31, 2013 11:07:32 AM Quote
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Hi Lisa - I've just replied on your other thread - good luck when you see your rheumy nurse. Take a list of questions, as it's so easy to forget.

Have you been given a little blue book or something similar to keep a record of your appointments and meds? It's easiest if you get into the habit of keeping your own notes, because one of the biggest adjustments is having to keep track of all your appointments with all sorts of different health care professionals - so far I've seen - GP, rheumalogist, rheumy nurse, phlebotomist (bllods nurse), research nurse, occupational therapist, physiotherapist (plus another one at hydrotherapy), and podiatrist! Phew - and that's just with the NHS!! It can seem a bit overwhelming at first but it does form a nice pattern over time, and it's easier if I keep good record of when I was told this or that, and when certain meds were started, because it's easy to forget the details and they often ask the patient as their records are not joined up at all! It must be even more confusing if you ever change hospitals!

Best wishes - Sylvia
Be kinder than is necessary because everyone you meet is fighting some kind of battle
Naomi1
#8 Posted : Saturday, April 06, 2013 11:33:02 PM Quote
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Hi Lisa. My first round of steroids wasn't quite enough so I had a second round which was at a lower dose but lasted a lot longer (4 months I think). The 2nd round did the trick. Maybe the rheumie will offer you more. As for feeling nauseous after the Mtx I had the same problem so switched to injections and they suit me much better. It took a bit of getting my head round at first to be honest but now it's so rountine, i can do it in under 2 minutes start to finish and it hardly hurts at all. Good luck and keep us posted on how you're doing. Being newly diagnosed is a tough time but it does get easier. xxx
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