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advice on medication

hi I was diagnosed 14 months ago and still I am not on medication, since the start 14 months ago I was on sulfasalazine, methotrexate, and hydroxachloroquin they all had bad side effects on me when I seen my rheumy doc on the first of sept 2017, she said we are running out of options and is going to put me back on hydroxachloraquin which had the worse side effects out of the three ( excuse the spelling )is this the case ? that there are no more different drugs she can put me on to try, or is she just being awkward with me I am at the end of my tether with the pain, I was having steroid injections to get me by but now they say I cant have any more, i don't know where to turn, sorry for the moan

mary

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Most have side effects sometimes they do go though and its trial and error, or chance. I don't know why we all get offered different medications but some are a no-no for a reason. I can't take Sulphazine as it's from Asprin and I take blood medications. Your best bet is look up the medications listed by the NRAS but as I say for some reason it may not be suitable for you or your type of RA. Really only talking to your consultant is the way to go. I take LEF or Arava but it may not be suitable for you so I can't say anything more. I hope you get help soon.

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thank you so much any advice or help is appreciated

mary x

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Side effects of FEF were extreme pain for about 2 weeks after taking it for 8-10 weeks. Then they just went and loads more energy and swelling gone with no pain. Great medication for me. RA in remission and life is normal so RA makes little impact at all now. I can only hope it continues for years to come.

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There are some other traditional drugs that are often used, such as Leflunomide. There are also some that are less commonly used, such as Gold and Aziothioprine. However whether you can be prescribed them is another matter. For example, Leflunomide is not good for people with existing high blood pressure. So you need to talk to your doctor. And all drugs have side effects , some you get used to and wear off after a few months, others are intolerable.

After that there is another class of drugs called biologics. But in the U.K. they are only available for people with very active and aggressive RA. So depending on how your RA affects you, you may not be eligible for them.

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This is one of the reasons why some of the trials around using adjuvants with some medications are interesting - if an adjuvant is demonstrably useful, it is feasible that the adjuvant can reduce the need for a higher dosage of medication and bring it within a range that an individual might be able to tolerate.

There are several adjuvant trials but there is a dearth of trials that are exploring reproducibility of the previous results.

I know that you know this - I'm musing aloud, so to speak.

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thank you any advice is great thank you

mary x

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thank you so much any advice or help is appreciated

mary x

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Hiya Mary. Without knowing your history (severity/type of rheumatoid disease/existing destruction etc) it's difficult to second guess why your Rheumy, suggesting returning to a previously tried DMARD, hydroxychloroquine. I wonder, is she thinking of starting you on just 1 x 200mg tablet daily & a short course of oral steroids to start bringing the disease under control, see how you respond? With your other meds, what doses did you start on & in the case of methotrexate how many days did you take folic acid? I don't know how long you were on each DMARD but often the longer you take it the easier side effects become as your body gets used to it but I think starting on a low dose may be the way to go for you. Did your Rheumy not mention biologics at all? Just with her saying you're running out of options.

I've been on HCQ (stopped working) & sulfasalazine (serious reaction) & now on MTX (8 years) & leflunomide (almost a year), but I started on just the one of tablet to see how I responded. Similarly with MTX I started on 15mg & been up to 20mg but now on 17.5mg because my liver is fine on that dose but doses as low as 5 or 7.5mg isn't unusual as a starting dose. LEF's not for everyone, it's not suitable for those with high BP or bronchial/pulmonary issues for example but it can be a good drug for many.

Are you able to take NSAIDs? I find mine works well on inflammation in conjunction with my other meds. It may be worth asking your Rheumy about, see if they go towards helping ease your inflammation & in turn your pain. You could ask your GP if he/she thinks they could be an option for you if you're not down to see your Rheumy any time soon.

See how you get on with HCQ, let's hope it's positive.

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hi no heels, i have r a as i said its 14 months now, and i am no further forward , the 3 meds i have been on have all been taken off me either by rheumy doc or my own doc, i said to rhuemy why would she put me back on hcq again she seems to think it wasnt the hdq that was the problem she said i may have had pnuemona they are suppose to be the experts so how can you argue with them, and she hasnt known anyone that has had such a bad reaction, so steriod injection has kept me going but they only last 4/5 weeks i have had really bad experience from the heath care its easy enough for them to say see you in 3 months but i dont think they realise all this pain and delay of medication is having on my life , i really dont know where to turn to anymore, after 14 months i thought i would be well on the mend i am at my wits end , i phoned the day ward because that what ive been told to do when your having a flare up, ive been having a flare up bad now since wed, i phoned yesterday they got back to me this morning said they couldnt give me another injection but they would contact my gp to give me tablet form steriod that was at 10.30 this morning ive phoned my gp now twice this afternoon and the receptionist said she would get the doc to phone me, i am still waiting, i am on my last warning from work through no fault of my own, really p****** off sorry disgusted with all this

mary x

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Hi I had bàd side effects uneffective methotrexate.rumatologist won't use dmards again unless Inflamation in blood cause of side effects and dangers of these drugs risks .so is common painkillers physiotherapy and pain clinic probably way ahead and they did with me limit steroid injections .and there me be courses 8 weeks through surgery or physiotherapy or community wellbeing quite helpful some ideas good luck

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H ya , I'm soooo feeling for you right now , I'm in pain a lot of the time too , I've started to look at what I'm eating and I'm realising it makes a huge difference , example , I've been pretty bad with my feet ( not properly diagnosed yet definitely rheum factor in blood and think fibro aswell. I know I definitely have that ) anyway I've been drinking loads of water, flushing through , only on sulfazalsine , 1 a day , jus t ticking over , not working , ..... I've been trying to cut out aspartame and don't drink tea or coffee, alcohol , but am also finding other foods really trigger it i.e. We had KFC and chips are bad and last night I had a small section of diam cake covered in chocolate to celebrate my daughter turning 24 ...... I was up 4 times to empty bladder in night and tossed and turned , my feet elbows and hands are really swollen sore and I'm in such pain , whereas two days ago I had nearly come out of the flare up , last night has really convinced me ,!!!! I've also been researching on you tube about health benefits of a plant based diet , no diary or meat , it scares me as my brain is programmed that way but I'm so sick of feeling this pain and knowing the medications don't work and cause even worse side effects , people on plant based diets are tablet and pain free within weeks , watch and see for yourself , I'm about to plan some meals and give it a try , .... hoping this gives you another option, good luck , I've just followed you , I'm 50 years old and in uk x

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In case you haven't already seen this Sulphasalazine (SSP)/ Methotrexate (MTX)/ Hydroxychloroquine (HCQ) capsulised summary, astrajewel, here's the infographic that may help place these 3 DMARD treatments in context:

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Managing Patients Taking DMARDs

(Disease Modifying Anti-Rheumatic Drugs)

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🛅 INFOGRAPHIC (pdf): bmj.com/content/bmj/suppl/2...

A visual summary of the 4 most frequently used DMARDs, including recommended monitoring & conditions that may interfere with treatment:

1 • Methotrexate (MTX)

2 • Leflunomide (LEF)

3 • Sulphasalazine (SSP)

4 • Hydroxychloroquine (HCQ)

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"Symptoms of inflammatory arthritis are often controlled in the long term using DMARDs (disease modifying anti-rheumatic drugs).

These are usually initiated by rheumatologists, with patients commonly taking two or sometimes three DMARDs simultaneously.

This graphic shows information about four of the most frequently prescribed DMARDs, including recommended monitoring and other conditions that could interfere with treatment."

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📰 ARTICLE: bmj.com/content/358/bmj.j32...

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[Many thanks to Man_Oeuvre 'BMJ DMARD infographic': healthunlocked.com/nras/pos... 🙏 😌 ]

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Wishing you the very best, astrajewel. 🙏 🍀 🌺 🌞

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I'd make an a appointment with your Rheumy nurse. They usually have more time to explain why you are being prescribed a particular Dmard. Sometimes if you react badly the first time ...., when a drug is given a second time you tolerate it better.

You may have other conditions that mean there are limits on what you can take.

Make a list of all your questions & ask the nurse when you see her!

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