hi Darshin,

i have been on Methotrexate since last June, started on 10mg and worked up to 20mg .. that hasn't worked so gone down to 10mg again,

i added Hydroxychloroquine to the mix last November 2 x 200mg daily and again that has failed,

so in all coming up a year now and i have had no improvement at all apart from when i have Depo injections.

i had to fail on Hydroxy for six months so that takes me to the end of May to then start on Humira. i have passed the critera, but i have still not heard from my Rheumy Nurse about it and have left two messages on the answer phone this week but she hasn't phoned me back which is very unusual as she normally calls back within 24 hours.

i am going to see my GP on Friday as i feel i am in need of support ... not sure if he can move things along for me, i doubt it as my RA care comes from the Hospital but he has a good ear and i definately need one at the moment.

hope this info helps,

Suzanne

P.S. i have now spoken to my Rheumy Nurse and she is going to send off the necessary paperwork to start the ball rolling ..so should be starting on Humira in two to three weeks.

Hi Darshin
I was diagnosed in Oct 09 and started on hydroxy. Mtx was added in Feb 10. Improvement was slow. I always kept a diary of how I felt and gradually found I was writing in it less frequently. I am having a bit of pain at the moment and went to put it in (if I don't write it down I find it hard to answer GP questions accurately) I found I hadn't recorded anything since January yet before that I was recording some pain or other every week. So the double therapy took about a year but has worked for me. I consider my RA to be pretty well controlled now. I still get achy hands and stiff in the morning but I can cope with that .
Hope you respond well to the drugs
Sue

I'm on MTX. After my original diagnosis I was given steroids to tide me over between the period of diagnosis and when my meds would kick in (along with a little gap to consider whether I was happy to take MTX).

I remember the Monday after starting steroids I hadn't noticed the pain was gone - until I realised everything that I had been struggling with (stairs!) had vanished in the 3 days since I'd started them.

I was on steroids for 8 weeks (I think?), by which point I was well into MTX and folic acid. There may have been a tiny flare before the MTX fully kicked in, but it seems to have been pretty much fine for me.

I've noticed phases where I am more prone to flaring (April was a... well - not pleasant) and I think I've worked out what can set it off sometimes (stress/diet/sleep/etc). I also know I have to take it easy when I need to.

Overall MTX is working. I just hope it stays that way for a long long long time. And a percentage... 95%? If I'd been asked in April it would have been about 50%! Unfortunately you've just got to wait it out and hope it works

Hi,I started on Hydroxy in June 2009 and MTX plus Folic Acid was added in May 2010.Since starting on MTX my RA has been a lot better,in fact the last time I saw the rheumy nurse she said it was in remission at the moment.I do try and keep active and have recently purchased an exercise bike to help build up muscle wastage which occured because of the RA. I realise that I could get a flare at any time and the meds would have to be increased but at the moment I'm just enjoying being almost pain free. Brenda.

I feel I need to post on this subject once again as it is clear that certain representations are being made that are both misleading and inaccurate. I know we have discussed at length on the forum previously Combination/Triple therapy, (a search should turn up the relevant posts) and the differences in administration of the guidelines. However the point continues to be raised.

Combination/Triple therapy where two or more drugs are used together as part of a treatment plan have been shown to be more effective than a single DMARD. NICE sets out strict guidelines for the use of Combination/Triple Therapy in patients with Rheumatoid Arthritis. From my experience all authorities are required to follow these guidelines which are considered to be 'best practice'. There are differences in procedure throughout the country but on the whole all consultants within the NHS are required to adhere to the guidelines. There are two entirely different methods of Combination/Triple Therapy in use; the step up method and the step down method. Research has shown that patient outcomes are very similar and each approach has its pros and cons. One is not more successful than another.

To outline, in Scotland the method used by some rheumatologists appears to be the step down approach. Several DMARDs (usually Methotrexate, Sulfasalazine and Hydroxychloroquine) are combined at the outset to hit the disease hard and then they are reduced down over time if the disease is stabilised. Good results in Lorna’s case, but equally it could mean over-treating the condition with drugs that are known to be highly toxic and can have serious side effects even when used individually; many people respond very well and can be controlled on one of these drugs alone. If problems do arise it may be very unclear which of the three drugs is causing the problem and consequently all three have to be stopped and re-started gradually.

In England and Wales the step up method is generally adopted. Many newly diagnosed patients will be given one drug initially. Methotrexate is the gold standard drug used in the treatment of RA and this is the one recommended in the NICE guidelines as the 'anchor' drug for combination therapy. Other drugs such as sulphasalasine, hydroxychloroquine, or similar can then be added, over a period of time, as part of the combination. One of the reasons for adding the drugs in slowly is so that the disease and efficacy of the drugs can be adequately monitored. If side effects develop it can be tricky to know which particular drug is causing the problem if the guidelines aren't followed. Often patients respond well to methotrexate and the disease is brought under control without additional drugs being introduced. The periods of waiting seem quite long but the drugs do act slowly in the build up phase and hence the reason for this. The outcomes need to be carefully monitored at each stage to ensure not only the efficacy of the drugs used but also the effects on other organs such as the liverand kidneys. This provides a more balanced approach to an individual's patients requirements.

We are all different with needs that vary considerably. At the outset your rheumatologist will request an antibody profile which includes factors such as ANA, the subsets of ANA SSA and SSB, anti-Scl-70, anti-dsDNA, and anti-SM antibodies. These will clarify your disease pattern and confirm any overlaps with other inflammatory diseases. A choice of appropriate medication to meet your needs will be made.

Doctors in England and Wales are very much up to speed in modern rheumatology medicine and much of the research into combination/triple therapy was undertaken by professors and reputable physicians in England! Only recently Professor Emery, a highly acclaimed rheumatologist in Leeds, has gone one step further with the trials into the early use of Enbrel (Etanercept) and Methotrexate.

Success of DMARDs between individuals is very difficult to quantify. We each have different profiles and tolerances and therefore individual outcomes to each of the drugs we are given. These amongst other factors make Rheumatoid Arthritis difficult to treat.

One pill does not fit all!

Lyn x

Hi Darshin

I was started on mxt and hydroxy 9 years ago. Mxt had to be increased grad up to 20mg. I came off hydroxy after having flashes in my eye, which scared me half to death. I went on 20mg mxt inj to improve efficiency and remained on them until last november when I had a breathing problem. I was doing well until then. By the time I had had chest xray, ct scan and got results back I had been without mxt for 8 weeks. Then I had major problems. I had 23 joints affected and everything swelled up like a balloon. I couldn't do anything at all without my husband's help and the pain was unbearable. I eventually had 3 high dose steroid inj on 3 consecutive days then back on mxt.

My point is that in 9 yrs of RA I have coped pretty well on mxt alone and I really want it to stay that way but time will tell. You could have a long time yet on the meds you are on but we are all different and who knows how we are going to react to whatever we are given. I would say just take it a day at a time and if you can manage fine if not you may have to take something else but we have to trust our rheummy teams to do the best for us as they are the ones with the knowledge.

Good luck. I hope you can find the control you need to continue doing the things you like to do.

Sheila x

hi Lyn,

i would also like to say thank you for taking the time to explain the procedure's re DMARDS thoroughly, although i did learn about it very quickly once i joined the Forum as well as from my Consultant and my Rheumy Nurse.

i think this info will be of great help to any Newbies joining,

and to Darshin there are lots of posts here on Folic Acid and we all seem to vary,

but i was told to take mine two days after Methotrexate day ... therefore i take 2 x5 mg on the same day.

Suzanne x

Hi Particklady..sorry for answering for Lorna but previously she said she was on MTX, Hydroxychloroquine and Sulfasalazine. Recently she is only on the first two.

I believe that my MTX and Hydroxy will make a difference for me eventually..but I am scared it won't make me normal like before the illness started i.e feel 100%

-Darshin

Jenni Thanks for that reply and message.

I am hoping that the right dose of MTX and 2 x daily Hydroxy will do the trick. There are morning now when my hands are not so bad. But then I did have a steriod jab about 18 days ago so its may be still that.

I spoke to my consultant about starting Sulfasalazine as well and he said he is considering it but lets see for the next 4 weeks. Think I want to wait three months which would be around end July for me.

- Darshin

Polly - so did u start MTX 6 months ago; how long has it been 20mg on it? Also how long have you been on steriods - what does?

Thanks - Darshin