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Date: 04.03.2012
From: Paula

Subject: ANY iideas

Hi,
Any ideas what my next step could be. I have been on Mtx at 15mg for 5 weeks now, with 5mg Folic Acid a week as well. The last two weeks with the meds have been tough, but it is the use of the hands the last three days I have hardly been able to use them, I ended up in casualty fri night because of the pain and could not put them down had a morphine injection, which helped a lot, am due to see the consultant again in April, i am finding i use my hands i pay for them, i haven't been given splints or anything like that or physio exercises, i wondered what things that all of you found helped when the RA was realy flaring, have been really fatigued the last two days and it has put me in bed, I just want to get on and do things. I ave to use my hands but do not know what to use to protect them. Hang in there all of you x
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Date: 04.03.2012
From: Colin

Subject: Re: ANY iideas

Paula , methotrexate will take a time to work but it does very well , RA all about getting the condition under control , it does take time & will take time for the consultant to find what works for you

contact the nurse , they can give you something to help untill the mtx kicks in
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Date: 04.03.2012
From: sue

Subject: Re: ANY iideas

Hi paula,i am new to this site,have been on mtx for about 5 years it has been great for me started on low dose but have been on 20mg last 3 years the only side effect i got was feeling sick for a few weeks each time dosage was increased.must say it did take months rather than weeks to control.everyone is different. whereever the pain is at the time i have different sized wheat bags you heat up in microwave i find it helps more than pain killers.hope you feel better soon.
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Date: 04.03.2012
From: paula

Subject: Re: ANY iideas

tHANKS for the replies, i haven't got a nurse at our centre, due to see consultant within a month, i want to be able to talk to her about protecting y hands and and wrists maybe with splints while i do thigs so i don't damage them furhter. hang in there guys, take care x
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Date: 04.03.2012
From: Nicola

Subject: Re: ANY iideas

Can you see your gp about starting a course of oral steroids? It'll settle everything down quickly and allow you to get your hands moving again. It took about 4months before meth started to work for me and all that time I was also on steroids as I couldn't function otherwise. There are plenty drugs out there, and your gp is your first contact, and is there to help you so keep in touch with the, you should not have to suffer. I am a physio and there's little point doing/seeing a physio until your pain is adequately controlled. They might be able to give you splints and gentle exercises if you could manage them. Depending on where you live, your gp should be able to refer you to physio and there should be a physio linked to your rheumatology service. If you have a rheum nurse specialist they can usually refer you to the rheum physio. Good luck and keep seeing your gp and continue to chase up your rheum clinic. If you're not coping they may be able to see you more quickly. I have often phoned my rheum team and they generally will do what they can to help you out. Things will get better it just takes a bloody long time for the drugs to work,! Take care, nic
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Date: 04.03.2012
From: Lorraine

Subject: Re: ANY iideas

Hi i have been on MTX since October 2010 and i am just stating to see an improvement now with the RA, getting to feel like my old self make an appointment with your GP i am sure they will help or even get your appointment brought forward
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Date: 04.03.2012
From: Jeanette

Subject: Re: ANY iideas

Sorry Paula

Just seen this after I posted on the other topic. I think you should maybe go to see your GP about something for the pain until hopefully it is under control hopefully by the mtx x
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Date: 05.03.2012
From: Val

Subject: Re: ANY iideas

Hi Paula. When I first went on mtx, nearly a year ago, I was also given steroids. 4 a day for a week, then 3 a day for a week, gradually redusing and coming off. For me it was incredible, overnight I could walk easier and use my hands. These days if I am going on holiday I have steroids just so that I can be a bit more 'normal, stay up and enjoy myself. Like a lot of people I thought steroids warning but the benefit outweighed everything. Mtx has worked well for me but I am now on 25 mg, gradually rising to it.
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Date: 05.03.2012
From: Paula

Subject: Re: ANY iideas

Hi guys thanks for responses, I am on 8 paracetamol a day and tramadol three times a day for the pain. Unforunately, the rhumy has ruled out oral steroids as has my GP because of my asthma, don't ask me why, so steroids are not an options. Have been told that with the depot steroid injections only allowed three in a year and I have had two already. The consultant I am under said long term steroid use is harmful and not recommended, where she gets that from I have no idea. I can only have oral steroids when my asthma is very bad, gp will not give them for anything else, I guess it depends on the trust and the gp in the area i suppose but that is my lot for you. I am due to see thr rhumy dr in April and see what they say then. I have tried to get the appt moved forward but nothing doing, so am hanging in as best i can. Hang on in there all you, thanks for replies x
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Date: 05.03.2012
From: bsk

Subject: Re: ANY iideas

Paula, steroids ARE harmful and not recommended for long term use! I have asthma too and the oral steroids actually help with that, so am surprised you can't get them. Am also surprised you don't have a 'specialist nurse' if you are on Mtx. I thought that was standard.

I use splints at night and that helps a lot with my hands. They can give you those at the hospital. If you had a nurse, you could ask them! Maybe you could ring your consultant (or his PA) and talk to him/her on the phone about what you need. It's what I do when I can't get hold of my nurse.
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Date: 06.03.2012
From: Paula

Subject: Re: ANY iideas

Thanks for your comments Bsk, How you doing on the enbrel? I only have the oral steroids when my asthma is really bad, it is the only time I can get them. My brother is under the same rhumatology centre as me he for three years, and a friend of mine is too she for 7 and neither has seen a nurse, have no idea why. Both are on MTX too. I will ask about splints when i see the rhumy on 5th April, thanks advice.
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Date: 07.03.2012
From: Nicola

Subject: Re: ANY iideas

Agreed...poo poo! I also have asthma and it was never once mentioned as being an issue for taking oral steroids. The bonus has been that with all the drugs and anti inflamms I haven't needed a puff of inhaler in over a year! Steroids are harmful long term if you are taking high doses over a long (like years) period of time, but the short term benefit of you getting your life back, being able to move and function again FAR outweigh any risk. Your dr (gp or rheumy) needs to appreciate how functionally limited you are, always tell them the worst and that you NEED to be better than you currently are in order to get through the day. When I was first diagnosed I was v v miserable and cried any time I went near a dr anyway so the gave me every drug I asked for! It's the inflammation at your joints that causes the bone erosion and long-term damage, so the inflammation needs to be better controlled. Im a physio so it's easy for me to go tell the dr what I need as I have a lot of experience of treating people with RA before I ever got it.. My advice with the dr is always to be assertive, ask lots of questions and don't leave til you fully understand what your treatment options are. Remember they are there to provide a service to YOU, so keep badgering them! Good luck, and your nurse specialist should be always available to answer all your questions. Hope you're feeling better soon x
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Date: 09.03.2012
From: Kim

Subject: Re: ANY iideas

I fully agree to ask for steroids, I have been on 25mg prednisolone a day for about 3 years now as I cant take nsaids. Iv also had a large dose of steroids via injection in a and e before when Iv been really bad. The steroids are the only thing that help me almost immediately with the pain and inflammation. I had to be quite strongwilled about what I needed as I have two young children to look after and I couldnt move for the pain was so bad until they gave me the steroids.
Keep on with the metho though as will take a while to work.
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Date: 12.03.2012
From: paula

Subject: Re: ANY iideas

hI thanks for the comments, saw the GP today, they will not issue the steroids, small doses or otherwise long term, have had two steriod injections in the last few months, and I cannot have NSAIDS because of the asthma, cant have ibprofen when asthmatic, and I am also on liquid lithium and ibprofen makes lithium toxic, so i am limited on what i can take. Have just taken week 6 of methotrexate, amd due to see the rhumy on the next few weeks, i am not very assertive with doctors, mainly because of mental health problems have had some dreadful treatment at the hands of doctors as i am sure a lot of you have too. It is still early days with the diagnosis, and I am learning as i go along to be honest. Thanks for replies, and i hope you guys are not in too much pain and mangaing as best as you can. Cheers. x
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Date: 13.03.2012
From: Jeanette

Subject: Re: ANY iideas

Hi Paula

Hope this appt with rheumy comes round quick for you. I think maybe you should be taking someone with you when you have that appt. What about someone from the mental health team.

Take care xxx
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Date: 13.03.2012
From: Paula

Subject: Re: ANY iideas

Hi Jeanette, the mental health team will t get involved, in faact i have to show my hands to them every time i go down as i feel they do not beleive me. Saw the gp today, she said phone the consultant and try and bring my appointment forward, will try and do that, hang in there Jeanette, hopethe meds work for you x
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