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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi everyone, well i said i would post how i got on seeing the Consultant yesterday as Methotrexate 15mg hadn't worked to date 3 months on. Lyn yes you are right ... they are upping the dose to 20mg, for the next fortnight i take 17.5mg then up to 20mg after that. she said my liver function is good and coping well with the Methotrexate so not adding anything extra yet. my inflammation levels were high ( sorry not got my Card with me ) so i was given another Steroid injection ... which is what i was given at the start of my treatment in June. so i won't know if the extra dose is helping for a few weeks again until the Steroid wears off. am feeling tired and deflated and lost my va va voom at the moment  ( normally i'm quite a bubbly outgoing person ) and really hope i can get back to feeling well and relatively pain free. i realise this is a long process with no magic answers. thanks for all your words of wisdom really appreciated. Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Suzanne, I hope the steroid injection kicks in soon for you - you will feel better once it does. It`s good that the MTX is not causing bother with liver function etc., so hopefully the higher dose may bring some improvement. If you happen to find some va va voom lying about somewhere it may well be miine - went missing a while ago and hasn`t come back yet!! Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi Suzanne Glad you got on well at Specialist. Hope you get on well with the extra doseage and I am sure the injection will definately help in a few days. I also know what you mean by the va va voom - mine went at the beginning of the year and have been off sick since end on March . My drugs still not sorted and looks like I am going to be pushed into going back to work - and I am not any better. Hey I suppose life is like that . Keep posting and chin up Rose 
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Rose,
so sorry to hear you're still struggling and being pushed back to work !!
really hope things improve for you soon.
to be honest i don't think ( well i know i couldn't ) work now, i haven't worked for a long time so didn't give up because of the RA.
i managed to do some shopping this morning and then foolishly decided to strip the bed when i got back what a palava that was now i know it's gotta be ironed later ... so i have got to learn to pace myself better.
ohhh to have our Va Va Voom back !!
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Suzanne,
Leave the ironing for another day..
It lovely down here in Somerset today. So I have been looking for washing,(4 loads) but the downside it
will need ironing.
I have done a spring clean of my porch this morning everything washed hoovered and glass cleaned.
I am now shatterred - i now can't be bothered to get myself lunch. I trust I will soon as tummy
making funny noises.
Tune in to Michael Ball at 3 and relax this pm like me
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Very good idea Rose, I enjoy the show too - its does make you put your feet up. I then usually go on to watch Deal or No Deal - oh well !
Hope you managed to have some lunch, know what you mean with the funny noises !
Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Julia I had a sandwich thanks.
Now in easy chair with feet on stool with maltesers. mmm naughty but nice ready to watch Michael
x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Oh Suzanne! You don't do shopping and strip beds in the same day!! Both 'red' jobs requiring separate days , preferably with an easy day between them  You will get there ... Rose and Julia have it sussed, kettle on, brew up, feet up and radio or tv on!! Maltesers?!! Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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just a quick reply on this,
unfortunately the Steroid injection i had last Monday hasn't worked ... so at present no relief at all from the pain.
i've phoned my Rheumy Nurse this morning and she said this can happen sometimes and said she wouldn't suggest another one at this stage.
i really hate taking Painkillers so as i type am an non at present, so i feel i need to go and talk to my GP ( made an appointment for a week on Wednesday ) not necessarily to to go onto Painkillers but as i said to the Nurse this morning i feel a bit in the wilderness as to my care of the RA at present. when i've tried Painkillers in the past for my Osteo Arthritis i always tend to feel spaced out and just not well, and if i feel like this i panic and hate the thought that i can't get out in my car if needs be etc. so i've developed a mental block about taking them. my contact is with the Nurse i understand this ... but i haven't talked things through with my GP for ages and i have so much trust in him i feel i need a shoulder at present as to how i am feeling even if he can't do anything as such for me. feel very weepy and tired.
it's definately a learning curve as i have posted before and something that can't be sorted overnight.
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi suzanne, I feel for you, its such a blow to find out we have this awful thing and then the meds take a while to kick in etc etc etc etc!!!! I know just how you feel at the moment with the painkillers I had quite a few lectures from my rheummy nurse as didnt want to have to take them constantly. the thing is, sometimes we have to, its no use taking them when we are in pain, we have to keep up the dose so that they can workpropery. What are you taking? I take regular paracetemol and if pain is worse at night, as it sometimes is, then co-codamol which do help you to sleep. Like yourself, I dont like to take the co-codamol during the day as I fell totally spaced out!
Half of the problem with RA is learning to accept it and change your life basically. I have just about (!!!!) realised that I cant run around like a headless chicken as I did pre-RA and not feel tired. Its all about pacing, which in itself is hard to accept.
I really hope you get some relief from the pain soon and your meds kick in.
lots of love
Heatherxxx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Suzanne,
Sorry to still feeling out of sorts and in pain. Like Heather I was given and took co codamol when in pain,
but they did also 'space' me out. I was recommended to take regular paracetamol they def are more user
friendly. So on a busy day i take paracetamol to try to prevent pain (it does help a little)
I understand you as I am still in limbo - I am going to wait for the post tomorrow if no
contact from Specialist I will need to phone again. I feel most frustrated
Rose
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Heather and Rose,
thanks for the replies. Heather at present i don't take any painkillers at all but agree i think i would feel safer with Paracetamol ( so thinking about this as i type )
Rose i really hope you hear from the Specialist soon i really feel for you. please post and keep us informed, i know just how bad i can feel in near on 4 months let alone being in limbo for as long as you have.
i have to believe that the meds whatever i end up on will work but i have come to realise this really is a long road.
my Daughter looked in this afternoon as we are looking after her Dog as she goes on a much needed holiday tomorrow with her boyfriend to Egypt and i know how badly she feels for me at present. i told her i will get sorted but it's hard to explain that this isn't like the Osteo Arthritis i've had in my knee's for 4 years now. she said why don't you go and have the new knee's done Mum that has to make you feel better ... but i told her i am definately not strong enough mentally or physically at present.
i'm so pleased i joined the Forum as there is no one better to know exactly what you're going through.
hope to hear that you have heard from the Specialist Soon Rose x
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Suzanne, it a long hard road we walk!! seriously, it can take a long time to get the meds right. I was diagnosed in July 2009 and still unconctrolled. Consulstant said we will get there, but when?? I wouldnt mind if I knew, I keep telling him its getting so hard to carry on working with the two babies, every day is a struggle. Its very wearing this illness!! i take mtx and hydroxychloroquine, prednisolone, tramadol and paracetemol. I hate taking the painkillers, but without them I definitely couldnt work at all. I hope you find the right comibnation soon, take care BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Suzanne, Sorry you are feeling so low at present, things have to start to go up soon. I know what you mean about the painkillers that was the hardest bit for me too. I hated taking so many tablets, but you have a choice be in pain or take them. Try to take them after a meal, have you tried Ibuprofen they are a little stronger than paracetamol, you could try 1 of each to see if that made a difference. I also take Mangosteen juice I have done since I was first diagnosed. My Rhumy said to keep taking it as I truly believe it stops me from getting pain. My doctor also said he was amazed I don't suffer more pain. I could give you the number of the place I order from if you like. Also has your Rhumy not suggested pairing up the MTX with another drug to help it work better. Thinking about you I do understand how hard it is when you are in pain. Take care Lorna xx 
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Barbara,
so sorry that you are still not under control after all this time !! to be honest i don't know how you work and with two little one's two ... that is so much to deal with !! really hope a solution is found for you soon in the wonderful combinations that i am learning they try.
Lorna that Mangosteen juice ( anything that isn't drug related sounds good to me ) sounds very interesting and would be grateful for more info on it ... can you post the information on here..?
at present Lorna having been 3 months on 15mg Methotrexate i have just been told to increase it to 20mg, starting with 2 weeks at 17.5mg first ... as this is what they said is the norm before adding another drug.
so i have to do as told and take this step by step.
i really appreciate all the words of wisdom that my fellow sufferers have, it makes me feel not so alone.
Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Suzanne, It's funny how all Rhummys have different opinions on RA, when I was diagnosed 3 years ago I was told then was the best time to get it as they were so up to date on progress for it. I was also told they were hitting it hard with different drugs to aim for a better outcome. I have been very lucky to have responded so well to the drugs I was given. I swear the Mangosteen is as much help as the drugs. I have not had regular painkillers since the very beginning of my RA, think it was for around a couple of months after diagnoses. I occasionally have to take paracetamol or ibuprofen for a bit of pain but nothing major to speak of. I have posted on complimentary therapies again, re the Mangosteen. Others have said what they think, but I have taken it for years and would not be without it now. It comes on holiday with me, there is nothing in it that would cause any problems with the drugs. I have already checked that with my Rhummy and I have her full support in taking it. I don't know if it's a placebo effect or it really does help but I have no pain at all unless I do too much. Even my doctor says he can't believe I keep so well. Hope that it helps you as much as it did me. Lorna x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi everyone,
wasn't sure where to post this so found my Update Thread and thought would add it here.
well first of all thanks to those that encouraged me to go to the NRAS meeting at my Hospital last night ... it was well worth it for both me and my Hubby.
the whole RA Team was there which i was really impressed with, and i know i have a fantastic Team who will give me all the support i need. they run a flare clinic weekly and will do their best to see you if needed.
Clare was lovely and very informative and there was a good turn out. i didn't get the chance to talk to many fellow patients but those i did were encouraging to me.
The Consultant did outline how they work when first diagnosed and they do go along with the one drug treatment of Methotrexate and having listened to her i know i would have had trouble taking more than one drug to start with, as i lost half a stone in a week with the stress of (a) being diagnosed and (b) having to go onto Methotrexate, in fact we had a chuckle about it now as i was like a crazed woman .. lol
so really that answers my questions about the Triple Therapy having been discussed on here ... it's got to be one step at a time for me and i have to believe that i will get under control.
we are hoping to set up a local Group in Aylesbury.
also had a long chat with my GP this morning, not having seen him for a while. and he's given me suggestions re my sleep problems. he said there's no evidence that Methotrexate interfers with sleep ... so i think i'm just going through a rough patch while i am getting under control. definately needed the chat with my GP this morning ( known him 25 years and he's like a friend )
i said to him this is definately life changing when diagnosed but as he said to me yes Suzanne i understand that but is also controllable
so i have to hold on to that thought in my darkest moments.
so between the meeting and my chat with the my GP i am feeling in not such a bad place as i have been lately.
i start the 20mg Methotrexate tomorrow after the last fortnight building up to it on 17.5mg.
right think that's my Update up to date.
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Suzanne,
I am so glad you are encouraged by the NRAS meeting and chatting with the Drs and nurses. It was a great thing to do and to arm yourself with as much knowledge about RA is the best way to proceed.
May I ask which hospital you attend? We lived in Buckinghamshire for a few years and are now near Oxford.
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Suzanne So glad you got to go last night and the information provided and meeting new friends was good for you - Well done. Also your GP appointment is positive as well . good news Rose x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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thanks Rose,
hope you're coping and if memory serves me correct ( that's something that's not affected me yet !! ) you were having Managers visiting today ... if so hope that went satisfactory.
hi Amanda,
i attend the Stoke Mandeville Hospital and have always had brilliant service whatever Department i've needed, i don't live in Aylesbury i live in a village about 10 miles away.
but i now feel familiarised with the RA Department and others that have been treated for much longer said the same which is so encouraging to hear.
Suzanne x
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