Medication or ?

[Samwise91]

So difficult to determine which medication causes unpleasant effects even with lots of 'homework' and the BNF, Cochrane reviews, NRAS network and publications etc. Suggestions - experiences gratefully received...

Now been on steroids, hydroxychloroquine, methotrexate etc for many months - on and off. Now promised biologics and have high hopes!? Now in rheumy flare as stopped most of 'orthodox' drugs causing some daily living problems - as do the rheumy symptoms...difficult to cope with. For several months have had increasing right stomach pains. Now being urgently investigated by Gastro team at hospital. Has anyone experience of liver - lower GI symptoms from methotrexate or ? - any advice - suggestions ?food...??

From reading these posts there seem many wonderful/brave people who are coping with life in dreadful circumstances with little help from 'orthodox' organisations - poor NHS - which seems almost fatally damaged - is it? But thank you for NRAS 'being there' and all helpful responses I see...

[Hopeful1]

Hi Samwise. Yes finding the right mefication is hard. It seems we are all different and our bodies react differently to the same drugs we each might be given. Sadly even experts seem only able to suggest suck it and see. However we are closely monitored when we try a different one and there are more to try now than years ago. I hope you find the right one for you soon

[Samwise91 in reply to Hopeful1]

Hi Hopeful - your name an enormous asset! Thanks so much for your reply - very wise. Genes etc all so different - and difficult to predict responses. I suppose we have to have 'perseverence' as well as HOPE! Many experts out there but none of us know what we don't know...Seems most knowledgeable are sometimes the most humble - working in hospital for many years - many years ago, I found this applied to a number of senior consultants/nurses/pharmacists etc. ..

[AgedCrone]

Most of us here have experienced difficulties with medication,& we have mostly come to understand listening to our clinical advisers is the most effective treatment.

I do hope your referral to a gastroenterologist is successful & that you get some effective treatment.

[Samwise91 in reply to AgedCrone]

Thank you for your supportive response - Aged one...I too am aged and only recently diagnosed - sudden onset. A new world and a lot more to learn...Yes, I have a good overworked team rheumy staff, and a couple of excellent GPs but almost impossible to get appts. They are all tired and stressed out..they seem to listen when available and I listen to them, they are the experts and know all the research background but they seem to be guided by my symptoms/ feelings/opinions...I saw the gastro. consultant urgently yesterday and because of my previous history he's requested a scan within the week. All advice gratefully received!

[bpeal1]

Unfortunately we are all so different that what suits one person won’t suit another and the only way to find out is to try it. An example of this is I really couldn’t get on with methotrexate, it made me very nauseous and gave me most debilitating brain fog - I couldn’t function for 5 out of 7 days each week but I take sulphasalazine and leflunomide with no side effects at all. On the other hand my friend takes methotrexate with no side effects but sulphasalazine put her in hospital.

The good thing is that we are closely monitored and any side effects should show up and medication can be stopped before any long term issues occur.

I count myself lucky that I have an amazing rheumatology team at my NHS hospital and if I need an appointment urgently I can usually been seen within a few days.

[Samwise91 in reply to bpeal1]

Thanks bpeal1. Good to hear about a responsive NHS team in these troubled times. Having scan next week, so should know a bit more.

[Hidden]

I have RA and bowel problems. . Difficult to assess which problem is worse. They both have inflammation properties. Difficult to know if it is the disease , meds or our body chemistry.They are both a pain which I long to get rid of. We all do.

[oldtimer2]

Methotrexate gave me enormous mouth ulcers, constantly feeling sick, colicy abdominal pains, loose motions 5-6 times a day. (As well as brain fog). It was the dentist who said to me that I must change medication. I had complained and been told that it was working well, and no notice taken of the effect it was having on my health and life.

For many people, methotrexate works really well and is just the right balance to bring their overactive immune system back to normal. But I do wish people would listen when patients compain!

You need to find out what's wrong!

[Samwise91 in reply to oldtimer2]

Thank you oldtimer2. - Comments like this help me to cope and to feel "I'm not the only one" . I too have had brain fog for some months so you've given me hope it's not 'just old age' and I'll be able to rationalise, cope and not be so exhausted again!

[Taichigirl]

hi just to add to all the wonderful advice & encouragement; Hydroxycloroquine can cause stomach problems, it did for me. My MTX wasnt the problem x