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Rank: Newbie
Groups: Registered
Joined: 6/24/2010
Posts: 3
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Hi, I have been on methotrexate for 12 wks now,and still go up and down with all the problems of RA.I have been very interested in all the write ups about the Biologics, and would like to hear from RH friends who have taken them. Now that Nice have agreed to supply them I would like to know if anyone can have them to improve RA patients. Also most of the "books" available at the hospital etc., says we have a RA nurse to discuss at any time problems, I have blood tests at the hospital and see the consultant every 6 - 8 weeks as I am not yet stable on methotrexate and steroids (which I want to come off). I am very interested in Biologics, is there anyone can help with information? Jan
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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i am sure Jenni is knowalgeable on this ?????but not sure mtx did not kick in till 11 weeks with me and from then noticed a little differance every week a small differance A few steps futher i could walk or i could turn in bed or get of a chair took a few months then now i am doing well on it and very moblie and no pain .TOO SOON TO GIVE UP too see if you will do well on it Dont give up easyiy christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jan,
Welcome to the forum but sorry you have RA.
I am 60 and have had RA for 9 years, have been on mtx and humira for 12 months now and it's working well for me. There are criteria you have to meet before starting on the biologics and the reason for this is not just cost.
Many people respond excellently to DMARDs , either one or a combination of two or three. The biologics are very strong drugs which can do a lot of harm as well as good so it's well worth trying the DMARDs first.
If you fail on 2 DMARDs ( I think it's 2) you can be assessed for the biologics , this includes 2 separate DAS tests (you can get information about this on the NRAS website) or swollen joint counts and your blood results are also taken into account.
As Chrissie says, don't give up on the mtx yet, it may start to work or you may need another DMARD adding to it.
Have trust in your consultant, he is seeing you every 6 to 8 weeks which is good and he will decide the next step for you.
Hope you find a treatment to suit you soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Jan,
Welcome from me too.
I would like to echo what Doreen has said. There are a number of combinations of DMARDS available that most people with RA will find effective in one combo or another. It can take a long time to find the treatment for you and, as Doreen mentioned, the anti-TNF's and other biologics are really heavy-going drugs.
Hope the MTX kicks in soon and you find your right combo shortly!
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
i have been on and failed a long list of RA meds Im afraid but this is rare as I have severe RA.
TO get anti-tnf considerations you must have failed at least 2 DMARDS (MTX is one but there are lots of others). the DAS score must show the disease is active on seperate occassions and then there is a process of awaiting funding.
the new rules are about swapping from one biologic to another. Having said that a consultant can always appeal things (as he has done many times in my case)
the thing is, these biologic drugs are HIGH risk. some people take them for years and are totally fine, get their life back but serious infection is 3-5 times more likely on the drugs plus I have fallen very foul of the "side effects" some of which have been serious enough to put me in HDU. I wish I could tell you this was very rare but actually it isnt that rare.
Having said this, controlled disease or at least disease with a cap on it is sometimes worth the risks. I have severe systemic disease and the RA has decided to eat my nerves, skin, even my tongue, bowel and stomach have been attacked. All the connective tissues inbetween. I got to the point of unless I agreed to the newest biologic, I was going for palliative care.
Not pretty is it?
Anyway I am so glad to tell you that this new drug cimzia is so far WORKING and I feel well in myself. Stick on the DMARDs if they can help you.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jan, and a warm welcome to the forum. I`m Kathleen, and have had RA almost five years. As others have said, at least two DMARDs - one of which must be methotrexate - must have been tried before being assessed for anti-TNF therapy. This is the criteria, but in practice it doesn`t always work out like that. I started humira about three years ago, but as well as failing on MTX, I also tried sulphasalazine, cyclosporin,leflunomide and various combinations of these, while my ESR and CRP climbed ever higher.Finally, when all these were found not to be effective, I was given a DAS assessment. All the DMARDs seem to take at least 12 weeks to actually start to work, so there is a lot of trial and error - and frustration. I hope the MTX may yet still work for you. It`s good that you are being seen so regularly. Take care, Kathleen x
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Rank: Member  Groups: Registered
Joined: 12/23/2009 Posts: 10 Location: Planet F1
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Hey!! Ive been on Humira since 2006. Like the others have said, I had to go through every drug in the book before they finally realised nothing else was working. Ive had no side effects at all, been lucky i guess. I was virtually pain free from about 3 months after starting the injections till last year. I admit i have been getting more achy over time but its nowhere near as bad as the pain i had before the Humira. I dont take painkillers on a regular basis. But the thing with all RA drugs is theyre there to slow it down, they cant stop it. Maybe one day. Thats why we donate and fight for research money. Well get there in the end im sure of it!! Mmmmm, fuzzy.....
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I agree with remaining, if you possibly can, on the DMARDs rather than ask for the biologics. They are only offered to people as the last option really.
MTX does take time to work but once it does it usually has a high success rate and reduces the chance of joint damage too.
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 6/20/2010
Posts: 62
Location: Manchester
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Hi Jan,
I have been on MXT for only 2 weeks, also taking Predisolone which I have been taking since April when I was diagnosed. I Really want to come off the steroids as I am constantly sweating all the time, my face has gone like a balloon and very red, and its very embarrassing but I guess that's what goes with them, I have been reduced from 20mg to 15mg.
I have felt very sickly and had very bad diaorrea since Ive started on MXT so will see how I go. As the other ladies say MXT is very well established but i guess it varies person to person, if im not happy and these side effects are still the same I will be looking at something else.
Keep me informed how you go on
Love Michelle xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Michelle, I have been on mtx for a year now. After 7 months hydroxy was added, then in April sulfa was added. This is what is usually known as triple therapy. If mtx doesnt seem to be helping then another DMARD is added then again until the third. For me the sulfa gave me a bad rash, and tummy problems and came off it two weeks ago. My RA is not under control at all, I have lots of pain especially in feet, they swell and get red ankles and knees, then hips and shoulders join in. I have fibromyalgia and probably Sjogren's too, waiting to see the Sjogren's clinic to confirm. I only mention the other illnesses as this could also be why mine isnt controlled yet. I totally agree with everyone, try the DMARDS first, it does take time, for most people its not as fast as we would like. My consultant is looking at leflunomide at my next visit so I know its a long process, and as said, there is no cure, just relief from the pain when the right meds are found. Good luck with getting the meds right, take care BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi welcome Jan to forum suhc a helpful site so much info where you can meet others who usally been threw or going threw similar to yourself. i also was very keen on biolgics but i found threw rheumy they tend try dmards first becasue often for some thats all thats needed to control ra. of course me and barbs other things such fibro been picked up along way so ours not yet controlled. mtx does take a while to work but i can say hand heart it did make a difference to me my red swelling was limited to finger joints,bit elbow bit toes bit knee since off it,to try for child im already seeing large amount red swelling which im due to ask for steriods for to calm things down. but again i dont have ra alone i have fibro plus sysetmic lupus so i also have alot soft tissue inflammtion along with tendon damage,lucky for me no joint damage . sometimes i would ask why no anti tnf and my rheumy explained he needs try me on at least 2 to 3 dmards and i fail before proceeding to say humira. at time i didnt agree but now i can see what he was saying was right for me. again we al vary if you feel nothing helping do say so to them at appointments howver once ive managed concieve had child i wont hesiate try dmards again befoe going onto a anti tnf. take good care hugs melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hello Jan - I have just come off MTX after 4 months as my Rheumy said it is ineffective. Inflamation is still increasing. I'm still taking the Hydroxy and I started Leflunomide a week ago and have to do a month on 10mg a day before I can go up to 20, so I think it will be a long slow process for me too. Hang in there and keep posting XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jan, I am Lorna I am married to my husband Ken and have 3 lovely daughters. Sorry to hear you have RA I too have had it for almost 3 years. I was very ill in the beginning and never thought I would be as well again. I have been on the triple therapy for the 2.5 years and now only the MTX and Hydrox and Folic Acid since Aug last year. I kept a diary for the first year to track how I responded to the drugs and how I felt. Try to be positive that they will work it makes all the difference. Hope you feel better soon. Lorna x
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Rank: Newbie  Groups: Registered
Joined: 1/5/2010 Posts: 5 Location: Cambridgeshire
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Hi
MTX did not work for me, nor did Gold, Sulfazalizine (allergic), HCL etc. I am now on Leflunomide and Rituximab (biologic). It works for me and has brought my RA under control. I have not had any side effects (touch wood) although I feel poorly for a day or so after the infusion. I first had it in January, and am in the middle of a second course after symptoms returned in June (expected). I have had RA for 9 years.
Andrew
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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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I am really worried about starting Enbrel. My delivery is coming today and I see my nurse on Monday for the first injection. I dont like the fact that it will make me suseptible to all sorts of infections, especially since I am a teacher and in contact with young people with coughs and colds all day and i am worried about the fact that it is such a strong drug. I am in such pain with my feet and the steroids I am on in the short term just dont touch it. What do you guys think?
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