Well I got my chance to talk to my specialist about the Ciclosporine and my concerns about its side effects. At first she said the usual stuff about if you read the side effects of paracetamol you could get worried,which is fair enough except we all know that DMARD'S are much more toxic..Anyway, I asked why out of all of the DMARD's she had selected this one and the answer seemed to be she had used it successfully through the years on her other patients. I raised my concerns about the 50 per cent chance of kidney side effects with Ciclosporine and she said that they were reversible and at least it did not damage the liver which Methotrexate can do. She was advising me to continue with Methotrexate plus the Ciclosporine. I don't really want to expose any more of my organs to harm than I need to. So she then said that I could take Lefluonamide instead of the ciclosporine, which might affect my liver but does not have any effect on the kidneys, or give you skin cancer or extra hair in places where you don't want it.The choice is mine!?!? Apparently both or neither can help and or cause complications.

Last time I asked if any of you had experience of Ciclosporine and this time I would like to hear from thos who have taken Lefluonamide with Methotrexate or by itself. I know we are all different but it may help me choose.

My specialist mentioned that my bloods were not significant, and that is good because it shows the Methotrexate isn't causing any unwanted side effects but as I am sero negative doesn't tell you much about the state of inflammation. I improved after the jab she gave me a month ago and am gradually deteriorating so it seems as if I am still not in remission. Having looked at my Xrays she could see that the lining to my inner knees seems to have disappeared and so she is referring me to an orthopaedic surgeon to see if partial replacement is a possibility. My knees are my major mobility problem at the moment.

Trying to make sense of all this is quite tough. I suppose I should try the dual therapy and make sure I have another jab so I can walk on holiday .

So any comments or advice would be welcomed

Hi Katherine,

I'm on the same as Jean, Mtx and Hydrox and 3 years down the line I still hate taking the Mtx. But I have to be positive in the fact it has worked wonders for me. I phone for my own results and fill in my own charts , this is what I have done since being diagnosed. It makes you feel in control and you see how things are at a glance. Hope you get on ok and enjoy your holiday. Lorna x

Thanks for the response everybody.Such thoughtful and helpful comments from you all. Kathleen I agree that mobility is crucial. Before I started Methotrexate I was only able to painfully hobble a few yards, so I know these drugs do benefit us, but when you are feeling low with the RA your sense of proportion can disappear. I have just had a salutary experience, because I went to the hairdressers yesterday and I had to walk a little further than usual but not miles and I discovered that my steroid jab had worn off.It quite shocked me, although it was only about 4 weeks when it was bad , so I have got, as Amanda was suggesting, to take something else to put out the RA fire. We just can't mess about with this condition.

I was interested in Jean's comments about Ciclosporine not being used these days so much cos that's what my internet research seemed to be saying. It also seems quite lethal and the hairy side effect might be ok for male sufferers, but even if it is temporary, Sophie, it must have been very demoralising.

Lorna, I will keep those records too, cos feeling in charge is helpful in managing a condition, which make us helpless. Any way you need to keep on the ball cos alll the medics are chasing around with huge caseloads so it pays to keep an eye on things. Being prescribed Sulfazaline when I am allergic to aspirin being a good example of internet research and keeping an eye on things paying off.

Hi Katharine

Bit late coming in here although I think I might have posted about Cyclosporin!

I have been in the enviable position (or not depending on your point of view!) of trying all these drugs and have a complete record of blood tests and different therapies going back 20+ years. A wealth of information but also an almanac of many treatment failures along the way! The side effects aren't really worth considering as ALL drugs used in RA therapy have long lists of POSSIBLE side effects. At the end of the day we all need something that will bring the condition under control ... side effects can almost always be dealt with and they are for the main part nothing more than a possibility anyway.

Cyclosporin is an outdated treatment as Jean says. It has been superceded by a myriad of other drugs more effective at controlling symptoms. Used many years ago, it was a cheap option that offered good results for some. Today it is a cheap drug probably worth trying for mild symptoms. I was only on it for short periods and it wasn't particularly effective for me.

Leflunomide (Arava) works by suppressing both the B-cells and T-cells. It is regarded as a particularly efficient treatment when combined with Methotrexate and for many people it is a good choice. It compares with the success of the Sulphasalazine/ methotrexate combination. I took it for two and a half months alongside Methotrexate but was taken off it as joint response was poor and side effects (liver problems and hair loss) not so good. I then went onto Sulphasalazine with methotrexate which I took for eleven months with another poor response but no side effects! Next came the biologics (anti tnf) in January 2003.

I too am sero-negative and this has caused innumerable problems with the treatment as the blood test results cannot be relied upon. It has largely been hit and miss but I found I could do a lot to help myself. I know how my body works, I know what to expect from my blood test results, and check them regularly, and I know when I need to seek help! My GP respects my knowledge and acts accordingly. He can't fathom my blood results and gave up trying to years ago!! Last year I had an ESR of over 100 for 6 months but no inflammation, no pain. I felt great! Alas the medics had me jumping through hoops and went in search, through CT scans, X-Rays, MRI scans, ultrasound scans and found ... nothing. The ESR eventually dropped to 'my' normal and once again I felt c**p!! Never did manage to explain it!

The important thing is to find something that is going to work for you now and keep working for you. If one therapy isn't effective you will be tried on something else. I'm not sure about the wisdom of letting patients choose their own drugs ... I believe it is their job, not ours, to make that decision in the knowledge of facts that pertain to your particular medical history! Whatever the upshot you need the disease to be controlled by whatever method. The longer it remains uncontrolled the more joint damage and with it long term disability.

Crikey that's a poor note to end on at bed time. But be positive Katharine there are loads of drugs out there that will work for you but you have to give them a try and forget possible side effects. The RA uncontrolled is a far worse scenario ... been there, done that!!!
Take care,

Lyn x

I think my specialist is a very cautious woman. She was reluctant to prescribe anything more than NSAID's for years. Getting a diagnosis is hard when you are sero negative and unfortunately quite a bit of damage was done before I was prescribed Methotrexate. I don't regret her approach, because as you have all said there is always uncertainty as to how any individual will respond to any of these drugs. Methotrexate was really miraculous for a time until the stress of my Mum's death cased a flare.

My specialist is getting towards retirement age and I think that although she understands the clobbering approach to RA that caution I mentioned makes her a little reluctant to push her patients into the more toxic therapies. On the other hand, I would not wish to be at the mercy of a boy wonder with a chemistry set. That is probably my age showing.

I did decide before the Methotrexate that the bargain and risk of these therapies was worth accepting for the improvement in the quality of life, so I agree with Lyn that in the end you have to take the medicine and stop fretting about it. It does seem easier to face up to this again with all your support. I think that grieving had knocked some of my stuffing out of place so thank you again for your help.

Thanks Lyn for your well considered and straightforward advice. It is much appreciated.