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Date: 04.06.2011
From: Wilms

Subject: supplements advice

hi, recently diagnosed RA and on 400mg a day of Plaquenil and 20mg methotrexate a week. helps but hmm! had steroids initially for the pain when it all started flaring up etc, not now though - well there goes my wonderwoman act!! My question for you to help with is ... my diet has always been terrible and am a very fussy eater, always doing things at 100 miles an hour - well did.
people give me contradictory advice - take multivitamins, st johns wort, etc etc etc - given diet is so bad i should take something I think but then someone says - oooh shouldn't take anything when on methotrexate, check with Dr - well no comment on him. My 'female' GP however, advised - find the RA forum, they'll help you more as they suffer the same, they know best - so here i am guys - help!
and is this total lack of any energy the illness or the pills or coming off steroids or or or -
thanks :)
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Date: 04.06.2011
From: Patricia

Subject: Re: supplements advice

Hi Wilms! I am also on Plaquenil although not methotrexate and am still on steroids (wow how they have helped! Was diagnosed a year ago but still not stabilised.

I have done a lot of reading/research on the internet and it seems that dietwise it is best to avoid dairy and gluten. That these are inflammatory. Not sure if this works or not but I am going to give it a try slowly but surely. Not sure if anyone on here has tried before?

The other thing that is meant to be good as a natural inflammatory is Omega oils. Apparently Krill Oil is the new thing out which also has a good level of antioxidants in. That is the next thing for me to try.

You have to be mindful though that some things can interact with your medication. Especially methotrexate because it supresses your immune system. Perhaps you could ask your rheumy nurse before starting anything?? I would think with diet you can start cutting things out very gradually, which is what I am doing, but you must replace it with something of good value. For instance, I am taking oat milk (oh dear!) but with added calcium and vitamins in it to make sure my bones don't get any worse!!!

The lack of energy in my experience came with the illness. Sometimes feel as though I have been hit by a truck. It is unpredictable too. You never know one day to the next the degree of pain/tiredness you will experience. The drugs don't help with their side effects but it is a double edged sword because without them we wouldn't be able to function at all. I have been grateful for them.

Hope this helps a little...x
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Date: 04.06.2011
From: wilms

Subject: Re: supplements advice

Hi Patricia, yes it does - Rheumy Nurse? what is that! dr at hospital has made it quite clear my seeing him each month is a waste of NHS resources and to get my doctors to do blood tests etc - well, getting appt is like gold dust - although finally I saw Mrs Dr yesterday so hence she advised me to go to fellow sufferers! good ole NHS eh! not
but big thanks to you x
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Date: 04.06.2011
From: Patricia

Subject: Re: supplements advice

Hi again. Rheumy nurse - there should be a rheumatologist nurse who is linked to your Consultant. If you have any worries/queries you can constact her first instead of going to your Doc or the Consultant. Sounds as though your Consultant is awful. How on earth can you be wasting his time if you have this horrible illness and you are on these strong drugs. it is HIS job to make sure you are okay and that includes bloods. At my rheumatology department the bloods are taken by the hospital and my consultant has a look at them. I am fortunate I think because my Consultant is brilliant. Having said that they all do the same thing because they are told to do so by PCT/NICE. Start off with one drug see if that works. If not add another, then another.

That's why I think it is good to educate ourselves if we can and find other things that may help. We just have to be careful it doesn't cause a problem with the meds we are on. Diet is a good place to start. Slowly does it though.

Pat x
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Date: 04.06.2011
From: bsk

Subject: Re: supplements advice

Hi Wilms. I was advised not to take any supplements at all whilst on Methotrexate and the patient leaflet says quite clearly not to take anything without checking first, not even cold remedies. This is because all medicines - alternative or otherwise, have to be broken down in the liver and mtx takes a heavy toll on the liver. Which is why you have monthly blood tests.

GP's don't really know that much about many arthritis drugs. Patricia has given you good advice about contacting your rheumy nurse.

The tiredness is the disease. Supplements won't really help with that but the drugs will, eventually. :)
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Date: 05.06.2011
From: dolly

Subject: Re: supplements advice

hello wilms. i'd like to share with u what i've learned after having RA for 41 yrs. RA is an auto immune disease. your immune system is attacking your joints which affects muscles ligaments tendons which affects all your vital organs. my rheumy told me if i eat or drink anything that boosts the immune system that i more than likely have a "flare up". when i got first diagnosed with RA there was no meds like they have today. anti-inflamatories is very important. they help with inflamation that cause deterioration to the joints. 40 yrs ago there was no good anti-inflamatories so much joints deteriorated big time. so i ended up having over 30 surgeries consisting of joint replacements and joint removals. i believe the best therapy for excercise is swimming in a warm pool [mild excercise]. your immune system always attacking and fighting with your body makes you very tired and also having no appetite. i try and drink lots of water or something with no caffeine or added sugar. i dont worry too much about food. i'll have a bowl of cereal or a sandwich or fruit when im hungry which is not too often. keeping the weight down is also important. for meds i take humira [self injection] twice a week and prednisone [like a steroid] and a pain reliever. im doing ok but i had to go through alot to figure out what works for me. i call all my meds together a "cocktail". all arthritic patients will need a "cocktail" which can be different from the next patient. i can go on and on but i wont so you take care and feel free to ask any questions
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Date: 05.06.2011
From: Lynn B

Subject: Re: supplements advice

Hi wilms, Bsk is so right, you Should definetly Not take any supplements or over the counter remedies unless you check with your rheummy or rheummy nurse, especially while you are on Methotrexate, it is a immune suppresant. And until you find the right cocktail like Dolly says, the one thats right for you, every thing else is going to be trial and error, good luck here is hoping you find it soon. take care x
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Date: 09.06.2011
From: wilms

Subject: Re: supplements advice

hi all, thanks tons for answering as it was 'doing my head in'. gp has been great the past few weeks, chemist helped alot with any supplements etc (known him for years and he's always the first person my daughter calls!) my mum had RA 40+ yrs ago so i totally understand the advancement of the meds but the reality is i had no real idea of what she 'really' suffered. its the whole change of lifestyle i suppose that i've still to get use to it. kicking the cigarettes is the worst though - still trying to sych self up for that one lol the alcohol was no problem as the thought of a glass of wine turns my stomach which is a nice surprise as that was my fav tipple :) anyway prattling on - thanks for listening and thanks for helping - x
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Date: 10.06.2011
From: gill

Subject: Re: supplements advice

have you tried devils claw,you can get it from boots or holland and barrats,you chemist will be able to tell you,and oily fgish is good to you can eat that as much or little as you like,macceral sardines tuna or salmon,but you may not like any of those things,you can get fih capsules,if in doubt ask your doctor/nurse at tttthe practce yoou are at....hope you don't mind me saying hope this ok gill
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Date: 11.06.2011
From: louloubelle

Subject: Re: supplements advice

Hey Wilms
Welcome to the forum.

Ask a pharmacist - they are better qualified to advise than your GP, after all, it is their specialist subject. I found that the parmacist at my local Boots was dead helpful - they even reviewed all of the meds that I'm taking to make sure I was taking them properly - i.e. with food and not taking too many (my GP had advised that I could take 10 co-codomols a day instead of the recommended 8 but the pharmacist advised I only took the 8 and then topped up with codeine only as too much paracetamol can have a serious effect on the liver and kidneys).

Hope that helps
Lou x
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Date: 11.06.2011
From: Lee

Subject: Re: supplements advice

If you are really concerned about what to take etc NHS Direct are good to give advice.

Ive had to use them recently as my GP and local Pharmacy seem to be giving my conflicting information or not giving me any information(( was giving pain patches which are controlled substances locked up and no info)).

It does seem GP's change what it acceptable from what pharmacists say so it is hard to decide what is correct .

Sometimes it seems a bit trial and error to see what foods and supplements are best to avoid.
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Date: 18.06.2011
From: gill

Subject: Re: supplements advice

Hi,thanks for the point of the co-dydromol(excuse spelling not strong point)I take them and take more than I should all the time,I will see about the codeinne when I am the doctors again,I no that eating oily fish do help if you can eat that,thanks about the pills....and last but not least, this wet weather doesn't seem to help at the mo,or is it just me,and sorry to hear that some of you are having a tough time with this pain, hope you are ok soon.......you all take care,don't let it get you down,I am,like you all in alot of pain,but some of you have it a lot worse than me sorry.................gill
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Date: 21.06.2011
From: ScaryFeet

Subject: Re: supplements advice

Just a quickie to say that when I was prescribled mtx by my rheumy nurse she also prescribed folic acid to top up on all the goodies being flushed out of my system by the mtx. When I stopped taking it (due to hair loss)I was put on Lefunomide (spelling) and advised that it was still ok to be taking my folic acid. I also take multi vits and vit B daily and have now started Enebrel........

I like the idea of speaking to the pharmacist instead of your GP.....
Good luck
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Date: 22.06.2011
From: bsk

Subject: Re: supplements advice

hi Scary, I was told not to take any vitamin supplements with Mtx as they all have to be broken down by the liver I don't know about Lefunomide. Folic Acid is a different matter and is prescribed. Please, please check with specialist nurse. Mine said take nothing at all internally at all only topical treatments, i.e. on the skin.
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