For a person that is new to this site the reading is very scary, I do want to know what my future holds and I know we don't have a crystal ball. I have been diagnosed RA factor positive the drugs are scaring me more than RA. At the moment I am on MTX, back down to 10mg due to 15mg reducing my blood count to a dangerous level. I feel very sick on 10mg and it does not seem to be touching my RA which is why they tried to increase it.
When and Why do some of you go onto the other drugs and what is a Rhituximab infusion for?and at what stage would you have this?
I would really appreciate some honest answers around the drugs as I do have a mental block against taking them I have never had to take drugs in may life so I am struggling.
Thanks
Christine
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Ellinghamgroup
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You poor thing, it is horribly scary to start with but please don't worry too much - we've all been there! Have you looked at the national rheumatoid arthritis site? they have some very helpful info for people who've just been diagnosed nras.org.uk.
Anyway, there are about 20 different drugs that can be used for RA, but unfortunately there's no telling in advance which one will work best for you. So you just have to try them out, which is quite hard to do. But there will be one that will suit you, and you'll get your life back and things should be nearly normal again. So they start you on the more "traditional" drugs such as Methotrexate, or HydroxyChloroquine or Sulphasalazine which are mostly pills. You can take a number of these together - so I take 3 which is between 12 and 20 pills a day. before I got RA I was like you, and had hardly even taken more than a aspirin and that only very rarely. So it's a bit of a shock. But for most people they work. Sometimes it takes several months to get used to them, and for them to have an effect. With me it took 3 months, and they were very long months.. but I' ve not had any real problems with them, and am generally pain free now and can do most things again. So although they do sound scary, they can be a life saver. Having uncontrolled RA is also very, very unpleasant.
It's only if these don't work, and you still have a high level of disease activity the doctors would consider the drugs that are given in hospital by infusions, or the other newer "biologic" drugs that come in injection pens like people with diabetes get. These ones are very expensive, about £10,000 a year.
But do keep talking to your doctors about how you feel, as there are per things they can try.
Thank you Polly this is really useful and honest, I have my next appointment in April so I will tell them how I am feeling. They seem to be aware of what's going on through the blood tests which good and I was impressed at the speedy response of my last blood test that showed low blood count after increasing MTX. I was on Naproxen with Omperazole for the inflamation but had to stop after 3 months affected my stomach, so now I am trying Amitriptyline. Like you say it will take time.
Hi Christine , Polly is right you should take time to look at the NRAS site it's sooooo helpful. I was like you and still am to a degree as only diagnosed last September myself ... You do come round to it all especially with this lovely site and people and you have to think its RA a chronic but not fatal illness, now days so many drugs on offer. I try to eat really healthy , I do still have alcohol but only a couple and when the flipping weather is better will try and walk more , we're even getting ourselves a puppy! Every day is so different somtimes I feel so positive and strong but other days so cross that I'm 42 have 2 young children and try to work and enjoy life ...you just have to take each day as it comes ... Claire. ....
Ps And Polly what we would do without you and all your knowledge xx
Thank you Claire, Your right, life is very up and down. I count myself lucky I have had 51 good healthy years, and hope with the correct medication I will get some of my life back.
I used to wake up with a stinking hangover (not every day!) & agonise over whether or not to take a single Nurofen tablet! Now I take mtx & Naproxen etc. & think nothing of it.
The routine & daily life can get so, so much easier -especially when you find a drug that works better for you than mtx seems to be doing at the moment. I would honestly assess my state of mind these days as 'happy' more often than not - proper happy!
On the other hand a lot of us question the drug therapy from time to time - should we be taking a higher dose? Or a lower dose? Perhaps we should take a break from the drugs to see how we get on without them ....... perhaps there is some other form of therapy that our Rheumy might agree to try etc. etc. etc. I am one of the people who questions the treatment I'm having constantly - 2 years on things aren't as good as I want them to be so I'm still searching ...... but I am not frightened like I used to be and you won't be either - give it time.
All the best to you,
Luce x
Hi Christine
Polly has already given you a lot of good information about the disease modifying anti-rheumatic drugs used for RA but you may also find this article on our website helpful: nras.org.uk/about_rheumatoi...
The DMARDs are the only scientifically proven way to slow down the progression of RA and lots of people get on very well with them but it can take some time and 'trial and error' to find a drug or combination of drugs that really works well for you. It's completely understandable to be nervous about starting these new treatments but it always comes down to weighing up the potential side effects with the benefits of the drugs.
I hope you get on better with the lower dose of methotrexate. It can take between 3-12 weeks to start to work and up to 6 months to really get the full benefit of the drug but if after this time the methotrexate does not feel like it's helping it is likely that your consultant will look at trying something different or adding another drug alongside the methotrexate.
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