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Date: 10.07.2012
From: rachel

Subject: Help - i dont know what to do anymore

Hi all i am a new poster on here and feel i need some support.

I was diagnosed out of the blue at the age of 26 - i am now 32 and have spent the last 6 years battling and trying every medication and therapy humanly possible and they cannot find anything that controls this dam disease.
I basically have a degree of managing and this is only due to having high doses of steroids via IV (methylprednisilone).
I take huge amounts of tablets and am just existing as i cannot do much due to the swelling and pain that doesnt go away.

I have a son who is now 15 - i had him young and have always managed to hold my head high and do all i need to keep him but now i have lost my career - i was a nail technician and a beauty therapist and obviously without the use of my hands i cannot manage.

I battle each day to get out of bed and do the most simplest of tasks, my rheumatologist really is no help for the last 4 weeks she has not returned my calls despite me being in agony.

What is next for me? I hold out waiting for some miracle medication to work - right now i have tried all the licenced ones and have either failed or have had allergic reactions to them. I am at rock bottom and do not know where to turn


Sorry for that but i feel i have to let it out xx
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Date: 10.07.2012
From: rhona

Subject: Re: Help - i dont know what to do anymore

Hi Rachel, I am so sorry to hear that you are suffering so much, it is very difficult, especially when you are young. Is it R/A you have? I don't know whether you have tried any of the new biologic drugs, if not it would be worth speaking to the hospital. That is bad that the rheumatologist has not returned your calls. Do you have a consultant? you could call his or hers secretary and ask for an appointment or get them to call you back, they cannot ignore you. I don't know if it would be possible for you to go to another hospital for your treatment if you find that they are not helpful. Sometimes you have to make a noise before they listen. I would get back onto them today and insist someone speaks to you. I do hope you get some help soon, take care and let us know how you get on. xx
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Date: 10.07.2012
From: rachel

Subject: Re: Help - i dont know what to do anymore

Hi Rhona

Thanks so much for your reply, yes i have RA, i have tried all of the biological therapies and have either failed, or reacted to them. I have an allergy to methotrexate so it has made it hard as many of the new biologics have to be used in conjunction with it.

I have contacted the specialist via the "helpline" which is either switched off or calls are rarely returned and via her secretary. To be honest she doesnt know what to do so tends to stay away and then deliver a message to say i can go to the day case unit for a pulse which is hit and miss as to whether it dampens the symptoms down.
I saw my GP last week for help getting referred and appatrently i cannot go out of the area and i should just write a letter or talk to the patient advice and liason team which i have now written to both.

I just cannot hold out much more hope of ever getting my life back to even any degree where i feel i live and not just exist xxx
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Date: 10.07.2012
From: Colin W

Subject: Re: Help - i dont know what to do anymore

Hi Rachel

I would try http://www.nras.org.uk/ ,, they got a helpline for RA , real shame you dont get on with methotrexate , its a good drug for RA but there is similar you can try which does work , high doses of steroids long term is not the answer

hope you feel better soon
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Date: 10.07.2012
From: rachel

Subject: Re: Help - i dont know what to do anymore

Hi Colin

Thanks for your reply, i will try the helpline and website you have offered.
Sadly i showed an immediate allergic reaction with metojet - and oral form i am sick and covered in rashes so there is no way ahead on that. I take azathioprine but it really has no effect at all.

I hate taking the steroids but its all that is enabling me to even move at the moment, without them i cannot even dress myself and i cant put my 15 year old son through dressing me every day.

Do you have RA?
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Date: 10.07.2012
From: rhona

Subject: Re: Help - i dont know what to do anymore

Hi Rachel, It does get you down and becomes very wearing when you try drugs and they don't work. I've had R/A for over 11 years now and things haven't been too good for the last 9 months. I have recently started Rituximab infusions and still waiting to see if they are going to work.

There is a newer drug called TOCILIZUMAB which is an infusion given every month and from what i have heard it is showing good results and i believe you don't have to take methetroxate with it. When i went into get my infusion there was a young girl having TOCILIZUMAB and she told me she had been getting it for 2 years and felt so much better since getting it. I don't know where in the country you are but in Scotland i think it has been available for a few years whereas in England it is more recent. There are other options Rachel so try and stay positive and hopefully you will get something to help you soon, take care xx
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Date: 10.07.2012
From: Rachel

Subject: Re: Help - i dont know what to do anymore

Hi rhona
I'm so sorry to hear you are suffering too. I have tried both of those therapies and failed. The only one that helped was infliximab but they took me off of it as apparently it wasn't doing enough. That was the best I had ever been!
I'm in England do funding isn't so great in certain trusts

How you finding rituximab- heard some good things when it works so stick with it xx
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Date: 10.07.2012
From: rhona

Subject: Re: Help - i dont know what to do anymore

Hi Rachel, i'm not sure if it's helping yet as i was given 2 steroid injections almost 3 weeks ago, i do feel a little better but don't know if that's because of the steroids although my hands are still very sore and stiff. I have also tried enbrel but it didn't help, in fact i think it made me worse. like yourself i find the steroid injections help but i've had too many lately. I do hope you get something to help you soon. xx
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Date: 10.07.2012
From: Chris

Subject: Re: Help - i dont know what to do anymore

Hi Rachel,
There is something else that you might want to try. It is called Astaxanthin. It is not a drug, it is micro plancton from algae in the ocean. You would take this in addition to whatever else you are taking. I have had RA for 30 years, and I started this about 2 years ago. Before starting this, I was always in pain, my hands were continually swollen, I could barely put my arms up over my head or move my elbows, and there was terrible pain in my hips and knees. Since about two weeks after starting this, I noticed that the pain seemed to be a little less. At about a month, the swelling started to decrease. At two months, the pain and swelling started to significantly decrease. Since then, I have had no further swelling in my hands, elbows, shoulders, and there is very little pain and I am able to cope well now. I can actually get my wedding band back on my finger. I take 2 - 3 4 mg capsules a day. There are no negative side effects, only positive ones including being able to go out in the sun without getting a sunburn. I know it might sound too good to be true, but I believe it is natures miracle for inflammation. It is claimed to be the strongest anti-inflammatory known. As I states, I have been taking this for two years, and have not had any problems in any of my joints except my knees. They still do continue to swell, but I think this is because knees carry your body weight. I wished I had found this 30 years ago. Please check Astaxanthin on the internet for more information to decide if this might be the answer for you as it was for me. If you do decide on using it, please find a reputable manufacturer of it because not all are the same. Research the product and manufacturer. I hope this helps. If you have any questions, please ask.
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Date: 12.07.2012
From: Ian Murray

Subject: Re: Help - i dont know what to do anymore

Hi Rachael,

Sounds like you are in need of a bit of help and support. Being diagnosed with arthritis can be daunting as well as painful and depressing. I was diagnosed with Ankylosing Spodilytis 35 years ago and have spent all that time on increasingly powerful drugs. Six months ago I began drinking Aloe Vera gel and I am now off all prescription drugs, am pain free, the swelling in my joints has reduced significantly and my energy levels are though the roof. My life has been transformed as has my wife's. The cost? Less than £3.00 per day. Good luck.
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