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bedfordowner
#1 Posted : Thursday, September 23, 2010 3:50:43 PM Quote
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Hi all, i have only been diagnosed a month and am now about to start mtx tomorrow and folic acid. I have had steroid injections but still in a flare up. I visited the rummy nurse yesterday and am being admitted to hospital next week for intravenous steroids over two days. Wondered if any of you had been through this and had any advice. Thanks in advance for your help.
jenniet
#2 Posted : Thursday, September 23, 2010 6:16:53 PM Quote
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Hello there.

Sorry you have just been diagnosed, things do get better! When I was first diagnosed I had the steroid injections and then my consultant arranged for me to have intravenous steroids, but I only had one dose administered over a couple of hours as an out patient. This was to try and slow down the inflammation and give the dmards a chance to kick in. I needed a good rest at home afterwards as I felt really uptight but it did make my crp and pv scores go down. Whilst I was in the hospital there were a couple of inpatients having intravenous steroids over three days but they had both had RA for a long time. It's worth it because it gives everything else a chance to work.
Good Luck!
Jenny.
AnnieB
#3 Posted : Thursday, September 23, 2010 6:22:43 PM Quote
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Hi,

Sorry can't give you any advice regarding the intravenous steroids but many people on here will be able to help. I did have a couple of steroid injections when I was first diagnosed in May this year which were great and after approx 7 weeks the MTX kicked in. I wish you all the best and I can honestly saying at the very beginning this site was such a help to me as soon as I became a member I no longer felt so scared, upset and alone.

Anne x
Rose-B
#4 Posted : Thursday, September 23, 2010 9:21:44 PM Quote
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Hello

Sorry you are not so well. Sorry cannot advise you on anything as only steriod I have had
is by injection

Sorry you have to go in hospital but sure this will benefit you

Good luck
Rose
bedfordowner
#5 Posted : Friday, September 24, 2010 7:59:35 AM Quote
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Thanks for the advice, I'm sure the steroids will help and will let you know the outcome. I start mtx today so will be an interesting weekend. Hope you all have a good one.
LynW
#6 Posted : Friday, September 24, 2010 11:55:01 AM Quote
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Location: Thornton Cleveleys
Hi

It is really good that you have been offered the intravenous steroids. They will help to bring things under control at a faster rate than either individual injections or oral steroids. This will give your body a rest whilst the methotrexate kicks in which can incidentally take up to 3 months (most RA drugs take a while to get into the system).

Do try to get as much rest as possible and once you start to feel better don't feel tempted to overdo things, it may cause a set back. It's so easy when we are feeling well/better to want to get on with things in reality it isn't a good idea!

All the best, hope you see some improvement soon,

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Julia17
#7 Posted : Friday, September 24, 2010 12:36:51 PM Quote
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Morning

I also have only had steroids by injections, I would think having them done intravenously is a good method something I have not heard of before.

All the best Julia
heather1
#8 Posted : Friday, September 24, 2010 2:37:24 PM Quote
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Hi Ive had steroid infusions before and they are great for lifting you whilst the dmards get to work. I had my last one in April after a particularly bad flare and it really really worked, in fact I would go as far as to say I felt "pre RA normal" again. Of course, they dont last, but as long as you done overdo things, then they can last up to 12 weeks.

Good luck

Heather xxxx
bethbrown
#9 Posted : Friday, September 24, 2010 5:54:28 PM Quote
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I've had steroid infusions in Oct 08.
It was given over 3 sessions of 2 hrs on a drip, as a day patient.
This was after the 2 depo injections had failed to bring my RA under any control.
They helped for 1 week - but I was unfortunate - and the only steroid that worked for me was the tablet form, which I eventually had to accept in Feb 09. I'm no longer on them (finished in Feb this year - but it was a long slow decrease!)

The infusions were no problem at all to me - and actually gave me the oportunity to sit still for 2 hours with a good book!ThumpUp

Hope yours go well and have a beneficial effect. Do let us know.

Beth
x
bedfordowner
#10 Posted : Tuesday, October 26, 2010 2:42:59 PM Quote
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Dear all, thanks for the replies and support. I had the infusions three weeks ago and felt good for about a week. I have also been on MTX but last week had to stop as my liver results had gone too high. Hopefully they will come done and i can restart as i felt i was getting somewhere. The effects of the infusions are wearing off rapidly now as sleeping has become a problem again. I have been prescribed amitriptyline 10mg today to help and wondered if anyone had experience of this. Thanks again for your help.
jenni_b
#11 Posted : Tuesday, October 26, 2010 2:54:06 PM Quote
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hi

the infusions are great but they should last longer than 1 week- normally about 3 months. I wonder if there was an underlying infection in there?

You MUST rest after steroid jabs and infusions. bed rest for 24hrs ideally. it works better and lasts longer.

What other drugs are they looking to put you on? Some people have a break from the MTX and go on it again and things are fine.

I never did get on with it.

Jenni x
how to be a velvet bulldoser
bedfordowner
#12 Posted : Tuesday, October 26, 2010 3:05:25 PM Quote
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They haven't yet said what's next so will have to wait and see. I had hoped the infusions would last longer but maybe i have done too much as you say. Thanks for the reply.
Rose-B
#13 Posted : Tuesday, October 26, 2010 3:32:39 PM Quote
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Hello


Sorry things have not gone as well as you had hoped.

I also take amtriptyline 40mg each night for over 3 yrs now. Yes is certainly helps
with the sleeping - good luck.

I have been on mtx as well and 3 times stopped and restarted so yes it can be done.
(although with me had to eventually stop)

Keep posting


Rose
bedfordowner
#14 Posted : Sunday, December 19, 2010 9:23:11 AM Quote
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Hi all, Thanks for the replies. It's been a while since my post but have been having a rough time. I was put back on MTX but only lasted a few weeks. I was on an increased dose of 20mg but the liver didn't like this so had to stop two weeks ago. Was booked in for two more infusion sessions to start last week but i wasn't allowed them as my liver results were still high and had high levels of potassium in the blood ( not sure where that came from). I am booked in for tomorrow and Wednesday for steroid infusions so hope they can do them this time as i am seizing up rapidly and the pain is getting me down. I will be asking about alternatives to MTX and would appreciate your views. Thanks again for your support. Have a good Christmas and god bless.
Keith
jenni_b
#15 Posted : Sunday, December 19, 2010 2:17:00 PM Quote
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Location: nr Southampton
Hi Keith,

Sorry to read that you are in such trouble.

You need an emergency appt but I wonder if it is worth looking into this- www.fibrohugs.com It is a website about fibromyalgia. I have Fibro and also have RA.

The steroid and the MTX will not touch the fibro and you can seize totally. There are of course other rarer rheumatic diseases that may need to be considered

Further, the potassium can all be to do with the mega dose of steroid. I would get a check for sugars in your blood, (Called an HbA51 test) if you are diabetic it will put up your sugars and if your sugars are high a lot then it can cause issues with potassium. make sure, of they do a wee test they do the normal morning one but also the late afternoon/ early evening time as this is the typical sugar peak time for steroid induced sugar peaks.The steroid itself, over a long time can give you diabetes. I am now an insulin dependant diabetic because of this.

There is a specific criteria for fibromyalgia, the Bath Hospital for Rheumatic Diseases (Dr Ellie is lovely there) have a really good specialist inpatient programme for complex diagnosis that are resistent to treatment.

You can ask for referral for second opinion there as inpatient (they normally take you in for 2-3 wks and give you a thorough going over and then do an inpatient programme).

rest up and do the full rotation gently each day. take pain killers (co-codamol) through the day and then get some big guns for the nights. I find Zomorph slow release very helpful.

Jenni x



how to be a velvet bulldoser
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