Hi, I am new to the forum. Just wondered if anyone with mild RA could advise on meds. Had first symptoms four years ago, saw Consultant and had steroid injection prior to starting Methotrexate. On returning from holiday at that time I then saw rheum nurse but everything had settled and I did not want to start on the Methotrexate. I had no symptoms at all then with no treatment for over 3 years.

In last six months I have had slight swelling of fingers, wrists, ankles and knees but no pain. Seen Consultant again in December, had steroid injection and she wants me to start on Methotrexate. X-rays of hands and feet have shown no joint damage and bloods are all normal except for CPR which was slightly raised at 8, RF44. I am really scared of starting Methotrexate when I feel OK and last time I was lucky and was fine for 3 years (but I know this probably won't happen again). I have seen the rheum nurse but I am so mixed up on what to do! I want to start Hydroxychloroquine but feel I am going against what the Consultant recommends. Just wondered if anyone had started on Hydroxychloroquine in the first instance for mild RA?

Hello Diane and welcome to the forum!
I'm just wondering why you would prefer to take Hydroxy as opposed to MTX?

Julie

Hi Diane

Welcome to the forum. It's a great place where you will make lots of friends and be able to find a wealth of information based upon experience. Do keep reading and posting!

I'm Lyn, diagnosed with sero-negative RA 22 years ago. I have run the gamut of medication, failing on most after varying periods, and several surgical procedures along the way. I'm married to Mike, have four children all growing up, and live in Thornton Cleveleys, Lancashire.

Please, whatever you might think do take the advice of your rheumatologist. They are the ones who will look after your ongoing care and are the ones with the knowledge of the drugs that will be most appropriate for you. Most RA drugs are toxic and come with a long list of 'possible' side affects, hydroxychloroquine is no exception! Methotrexate is the gold standard drug in the treatment of RA and something in the region of 40% of patients respond positively to the drug as a monotherapy. This means that the disease can be brought under control without adding further drugs to the mix. It is used as the base drug to which other Disease Modifying drugs such as hydroxy, sulfasalazine and leflunomide can be added later if methotrexate is not enough on its own.

You have been very fortunate not to suffer joint damage through lack of medication, three years is a long time, ... its not a route to go down with this horrendous disease! The damage can be done slowly without pain or inflammation and, be sure, left untreated (or treated incorrectly) it will gradually erode joint tissue. The medication available today is vastly superior to that that was available when I was diagnosed. As a result of failed and inadequate medication I have damaged joints in my jaw, wrists, hands, knees, ankles and feet and other niggles here and there. I have had joints removed, replaced and modified and this is going to be an ongoing scenario for me. It can be avoided nowadays by following the advice and medication that is offered.

RA is a chronic debilitating condition. It can be brought under control but it cannot be cured. What medication is given to others may not be appropriate for you. What is mild now can very quickly flare out of control and become serious. Any drug can be given at any time BUT if it doesn't do its job you may not know until you have suffered irreversible damage. Combination therapy is the accepted treatment (NICE guidelines), methotrexate is the base drug. Take the consultant's advice, take the methotrexate!!

Let us know how you go on. Good luck! and above all try to stay positive ... it really will help!

Lyn x

PS As Julie asked ... why would you want to take hydroxy?

Dear Diane,
This is my R.A experience over the last 15 years:
I began having R.A symptoms under my left foot as I
dismounted my boyfriends motor bike on Dartmoor.
This was the begnning. I was 37 or 38 at the time.
I thought I might have broken a toe and within a couple of days
had an x ray at the Hospital which showed no damage.
The Doctor at the Hospital stated that I might have an auto immune disease.
He said this was because the base of the big toe corresponds to the base of the
thumb on your hands and is often a site of pain in Auto immune disease.
I though "No way mate!" and got back on the motor bike and rode away again.
Over the next few months things began to hurt - like my knees for instance.
My Doctor called me a Hypercondriac - until one day I went to the surgery with
two knees that were radiating so much heat she could feel it through my jeans!
Then she ordered blood tests to check "for everything in the book" as she said.
All came back normal except the last one to come back - which showed
Rheumatoid Factor. At this point she told me how sorry she was.
A referral was made to the Rheumatologist.
It took quite a while for the appointment and I asked for the oldest and most tried by
other people drug which turned out to be Hydroxychloriquine.
However upon reflection I was too scared to take even that.
So more months went by with me only taking Paracetomol.
Then one day I woke up and could hardly move. The R.A had flared and seemed
to be everywhere!
I went to the surgery (very slowly), and was given a drug to take once a day (I can't
remember it's name, sorry), to calm things down, which it did immediately.
But it was not a long term drug and slowly I got side effects and had to stop it.
Things gradually started hurting again until I felt that I must start the Hydroxychloriquine.
I have now been on it for the best part of 15 years.
However, I do get flare-ups that can last for months.
Currently, I have been flaring since November, it's not unbearable but it's there and I know it.
However last year I had a 7 month remission. First ever!
Weird disease!
I have some Rheumatoid nodules and have read that MTX makes these worse, so I don't think
I could be offered it anyway.
My Rheumatologist suggested thinking about throwing in Sulsuphazine into the mix next visit and
T.N.F's after that if necessary.
I was a Tea totaller prior to all this and now by the evenings I drink red wine as it takes away the pains
and relaxes my mind.
Boyfriend is still mine, so I've been blessed with his help through this horror.
What I want to say is that some people get lucky regarding no joint damage, I have been up to now.
It's really a question of how much pain you can take during a flare.
I have not worked since the R.A and my 3 kids are grown up and left home as I had them when I was
very young.
Everyone will vary in what this disease will do to them and when and if it will do it.
I wish you all the luck in the world in making the right decision for you.
Best wishes,
Fiona

Hi

I was diagnosed in February 2007 and started on 400g hydroxychloroquine soon after. I felt a difference in my symptoms within a few weeks and am still on it. Since then the dose has been reduced to 300g plus 5mg of prednisolone per day. My rheumatologist says it is the most benign of all the RA drugs. I also take amitriptyline for nerve pain. Apart from RA I have bursitis in both hips so on occasions I have had to increase the pred for a few days just until things settle down.

Best wishes

Hi Diane,

Welcome to the forum!
I am 61 and have had RA for 10 years, I am on mtx and humira.
The only person who can really advise you on this is your consultant, he has seen your test results, but the decision is yours to make, and I wish you well with whatever you decide.
Looking forward to getting to know you.

Doreen xx

Hi, just wanted to thank everyone for their advice. I really appreciate it. I am going to start on Methotrexate and have phoned the rheum nurse today about it. Will let you know when I start it!

Sorry I didn't introduce myself properly. I am 53 years old and happily married. I have a son who lives with his fiancee (they are getting married in September) and a daughter who is married and lives in Switzerland (her husband is Swiss). I work as a medical secretary in the local hospital.

Thanks once again. Diane