Hi everybody

As a newly 'qualified' and taking prednisolone, lansoprazole and diclofenec each day, plus MTX (10mg) and folic acid once a week I wonder if there is a good day and time to take drugs. I take tramadol and paracetamol when required for pain relief.

I started the MTX on a Monday thinking any side effects would be less important in the week as I am retired and have no time pressures but I have had no side effects to date but this is probably a very low dose.

I tend to take the drugs with my breakfast but I do wonder how my body can sort the little white one from the little yellow one or my walnut and banana pieces , but I guess it does.

Would it be better to take them before bed?

Martin

Hi Martin

I don't think there is any hard and fast rule re MRX. I had a few problems with sickness etc at first, so I started to take them in the evening. You should take them with a full glass of water (not tea, or orange, or even whisky!) as these can react with the drug). I was also told not to lie down for a while after taking them, but there is a lot of controversy about the pros and cons. I guess it's because they are pretty toxic and if you are lying down, they could, in theory, stick to your oesophogus and cause ulcers - but who knows?

Hope you are feeling brighter now and the drugs are starting to kick in.

As for me "going for it" re the PPL - there is nothing I would love more, but, being more of a linguist than a mathematician, the thought of the mathematical calculations involved would throw me into a tail spin! I did ride when younger - my cousin had stables and a riding school and I spent a good many of my formative years on any horse not deemed suitable for the "paying" clients! Maybe I should stick to the old underwater basket weaving!

Take care

Jeanx

Hi Martin, I tend to take the stomach protector before food as that works for me. If you don't have any side effects from the MTX, I don't think it matters. I take mine with my lunch as although I don't get any sickness, I do seems to excetionally tired on the day I take them. By the time I start really flagging it's almost bed time anyway. Hope you continue to take them without effects.

Julie

Hi Martin,

Welcome to the forum, we have all been there and come out the other side. It is difficult when you get dealt an illness and you have to find ways of coping. But you can and do. I have had RA for just over three years, it was a very long three years getting my head around this was enormous. I went from being fit and very active to bedridden and in so much pain. I had lost the use of my right arm and could not turn my head, my hands did not work at all and I was bent over with the extreme pain which I was in.

The good news is the drugs take time to work and having been on the triple therapy I am as good as I was before, as long as I do not overdo things. I used to take MTX in the morning but I found the sun affected me and I felt sick at times. I have taken it in the evening for years now and I no longer have any problems with it. Keep positive and focused also keep a diary keeping a chart on how you feel with the medication it does help, I did it for the first year. It is good to look back and see how far you have come.

Take care and keep posting.

Lorna

Hi Martin,

Do not be put off by the term aggressive, I too was hit hard with aggressive RA my inflammation and ccp levels were up to near 300. I struggled for years about getting ill and how the MTX would affect my immunity. But hey ho it's not too bad I take a multi vitamin each day and my Hydrox and once a week MTX and folic acid. I no longer need painkillers and I really do keep well now. Actually I do not get colds any more than I used to, and it usually goes within a few weeks. I take Mangosteen Juice daily which I find a great help. I did not come on here for years as I wanted to see what was in front of me before I shared my experience with others.

I have never let this RA take control of me totally, I always pushed to do a little and I remained happy with that. Now as I say I keep really well, may be it was a blessing it hit me so hard to start with, as there was no doubt there was something seriously wrong with me and then I was given the triple therapy treatment very quickly, which in turn has made a significant difference to how I am today.

Carry on being positive and try not to worry about the aggressive RA, What's for you wont go passed you. Being positive makes such a difference to RA.

Take care and don't worry.

Lorna

Hi Martin,

My Rheumatoid Factor was 286 and my CCP Anti bodies were 218 like you I was very ill at that point, my doctor recognised it and had me seen within days by a Rheumatologist. I will never forget she touched my arm and told me I would not walk out as bad as I had just walked in. After asking lots of questions and getting me X rayed she told me there and then she thought I had RA, that a blood test would confirm it.

The triple therapy is a combination of drugs aimed at attacking RA head on. I was on Sulphasalazine, Hydroxochloroquine, Methotrexate and Folic Acid. They were given in staged doses to build up to the required dose. I came off Sulph after 2 years as it was no longer needed but still continue on the others. You are monitored weekly with blood tests until you are stable then fortnightly then monthly which I had been on for years. I now go 3 monthly as of February. I live in Scotland and everyone up here where I live is started off on the triple therapy. My Rheumatologist swears by this method.

You asked about Mangsteen Juice I was recommended this when I was really bad, I have taken it since I was diagnosed. A small 30ml glass each morning 1 hour before I eat anything, my husband brings it to me each morning. It is said to be the queen of super fruits, it may not work for everyone but it certainly works for me. It costs around £60 for 4 bottles It goes everywhere with me holidays, weekends away etc. My doctor said he is amazed at how well I have come on, I joked and asked if I should be ill, he said I should still have pain and I dont. If you want to know my source for it ask Nras for my phone number and I will tell you more about it. I truly believe being positive and believing in the drugs has a major impact on your well being.

Lorna

Hi Martin

I know the periods of waiting seem quite long but the drugs do act slowly in the build up phase and hence the reason for this. You are actually on a very good schedule and the two weekly blood reviews mean any problems that may be occurring will be picked up very quickly.

Triple therapy is a combination therapy. Lorna lives in Scotland and there they use three drugs at the outset. Usually methotrexate plus say Sulphasalasine and Hydroxychloroquine (or similar). Once the condition is 'stabilised' they use the step down method to reduce the drugs. This hits the disease hard at the outset (good results in Lorna's case) but equally it could mean over-treating the condition; majority of people can be controlled on one of these drugs alone.

In England and Wales combination therapy is also used but using a different procedure, the step up, method. One drug, usually methotrexate, initiates the procedure as the base. Regular checks are done (such as yours) and at the doctors follow up you are assessed to see how well you are responding. Based on this drugs can be added or changed as needed to bring about control. This provides a more balanced approach to an individual's patients requirements. We are all different with needs that vary considerably.

Please don't be tempted to add anything to the cocktail until you have some control through the prescribed meds. Very little has actually been medically proven to help with RA, although certain things may help with inflammation and pain. The object is to control the disease and thereby reduce the symptoms. Controlling the symptoms (might make you feel better temporarily) won't help the disease one iota!! Sometimes 'over the counter purchases' can affect the efficacy (such as uptake) of prescribed drugs.

Forget 'aggressive' Martin, you will be back on that golf course! Aggressive is subjective and not quantifiable. Yes, your anti-ccp is high BUT it can with the correct treatment be brought under control to a level where you will lead an almost 'normal' (that's subjective too!) life.

Do keep us posted and stay positive

Lyn x