New to the RA didnt think i have it this bad so quick

Hi My Names Angie,i am also finding it hard to adjust to the RA ,i was on hydroxychloroquine for 3 months the side affects where very painfull,burning hands and feet...i am now on Methotrexate

I take two folic acids on wednesday and 6 x 2.5mg methotrexateon saturdays 3 at lunchtime and 3 with eveing meal .

Sunday last week was ok , this week i was feeling sick and very tired is this normal ?Today im still feeling queezy.perhaps i should take folic acid every day

should i speak to my RA nurse?.

I take paracetal and ibrufen daily to help ease the pain in my hands and feet.Never taken so much medication,cant be good for your insides.

I am so pleased i found this site,and to understand you are all out there supporting each other ,its great .

Thank you

Angie

12 Replies

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  • Hi Angie - welcome to HU but sorry for the reason you've had to find us. Now you have please stay around it's a very supportive place to be. Take care, Tilda x

  • Hi Angie,

    Welcome...glad you are here, but sorry for your pain. I too suffer from RA. I saw that you only take Folic on Wednesdays. I take 1 mg daily,..so I would confirm with your doctor that you increase yours as it is crucial you take it with Methatrexate on a daily basis. I also wonder if you track in a diary what your pain days are like. This allows your doc to have a clear picture of what he or she is dealing with. I often noted what the weather was like, what I had eaten what the pain level was 1-10 and where the pain and swelling was worse...this allowed her to see if there was anything I needed to do differently.

    One last thing, I too take hydroxychloroquine (plaqunil) 400mg a day but never experienced the pain you explain. I also take Celebrex instead of Ibuprofen as it causes ulcers. (200 MG) Feeling sick is normal...finding the right cocktail is crucial and it sounds like you have not found the right cocktail so keep searching..It does get better I promise.

    As I close, I also take Remicade which saved my life and stopped the pain and progression of pain, and swelling. It is an I.V. therapy drug that is given in the hospital every 8 weeks. So I take 4 RA meds,...when you are in your flares..try hot baths, heating pads and Medicated lotions that relieve pain...

    God Bless you,

    Sherrie (Portland Oregon)

  • Morning Angie,Welcome to our site, shame its through ra, but this is the best place to find out any info. I was told not to take folic acid on the day i take mtx. Hope this helps you.

    Sherrie is right about a diary as it helps the medics see how your doing and how the drugs are doing.

    Welcome and hope we are all of a help to you, and feel free to rant on here as it helps.

    love sylvi. xx

  • I too take 1mg of Folic acid daily. I tried Remicade, but found I am severely allergic to it. Unfortunately, it was the first med I had ever taken that relieved my pain. I now take Kineret daily injections. It has helped the pain and my mobility immensely. Good luck in your search for the right combo for you.

  • Morning Angie,

    I take my folic acid just once a week like you mine is 5mg on a Tuesday as I inject my methotrexate on a Friday.I think it depends on your Rheumatologist when I asked mine should I increase because off the sickness and nauseous he said no however he did prescribe me anti sickness pills but I still had the tiredness so eventualy he changed me to injecting methotrexate which made a big difference for me on the tiredness side.

    I too have taken many other drugs and at the moment I'm still trying to find the correct cocktail.

    If there is one in your area.I recommend you attend an nras group that is the support you can get from them is amazing.

    Hope you find your right treatment soon

    Take care

    Julie X

  • I think that the advice concerning folic acid varies widely. I take 5 mg 3 days after taking my MTX. Good luck and I hope you feel better soon.

    Carole

  • Hi Ange

    I was diagnosed in Feb, and put straight on MTX, I started taking 10mg on a Monday evening with folic acid once on a Tuesday. My neurophils (white blood cells) went down to below 2 so had to stop taking them.

    I too suffered very painful hands and feet so take 2 x naprosyn a day, 500mgs, these really help.

    I was very pale and very soooo sick.

    I am now back on the MTX but been told to take folic acid 6 times a week, but NOT the day I take the MTX, I have been told this will help with the sickness.

    If your pain killers are working ask for stronger ones, mine are stronger!.

    Like Julie suggested above, see if you can find a support group. I have major problems with coming to terms with this RA but I am going to a support group tomorrow for the first time. Will let you know how I get on.

    take care Ange and everyone else who suffers. So basically, ask for stronger painkillers and ask about taking folic acid 6 times a week to help with the sickness.

    Alison

    x

  • Hi and welcome, sorry to hear your not so good but there are lots of lovely people here who can help you out with any queries. I take 20mg MTX and 5mg of folic acid 5 days per week. I seem to tolerate the MTX well where sickness is concerned. I have just had my first blood test since the increase in meds so will anxiously await any news. Good luck and keep logging in xx

  • Hi Angie, sorry you've had to join us. From what you say it sounds as if you need to have more discussion with your GP about managing pain and with your Rheumy about treating the RA and feelings of sickness. If you don't tell them how you feel then they probably will assume you're fine!

    And everyone's different with MTX and folic acid. It's a balancing act as the MTX reduces the folic acid in your body so you need to top it up. But at the same time taking folic acid reduces the effectiveness of the MTX so you don't want to take more than you need to (and not on MTX day as others have said). Talk to your docs about your queazy feeling as they may suggest other things to try. And lots of people find ginger biscuits really helpful too!

    Take care, Polly

  • Hi - Don't be too dejected. You will figure out what is best by trial and error and if you have a rheumy nurse or cons. that is easy to talk with they can advise you. I take 20mg MTX every Thurs night and then folic acid every day starting Friday (just not on same day as MTX). I still feel nausea the day after taking MTX but not every week and to varying degrees. Feel tired as well after taking it. But I do take supplements that I sttrongly believe help me. My GP prescribed me Lansaprazole (sp?) - take one before dinner to eliminate gastric upsets due to taking anti inflamms. I take paracetemol for pain and only take Naproxen when necessary, i.e. if inflammation is really bad. I've rubbed Voltarol on inflamed areas which works well and then I dont have to take as many pills.

    Nausea can also be helped with ginger -in tea form or using it in meals.

    Don't despair, and although I say welcome, as Polly says, sorry you have to join us, but it is very helpful to use this website, you gets loads of support and some great hints.

    Lynnx

  • Hi...I was diagnosed at Christmas and was in a state at the time. The condition came on really quick and I did not know what was wrong for a couple of months. I was put on Sulphazalaline and since them have had this increased up to 6 a day....inbetween I take an antiinflamitory and lots of painkillers. Sadly the specialist has not got on top of my condition at all...the only time I get relief is when they give me steriods (you cant have these often) when on them I am better but as soon as I come off them the symptoms come back slowly to pain, swelling, sleeplessness and lack of any appetite. I have lost lots of weight (Too much). I go for blood monitoring every 2 weeks and tell them how I am but until I get really bad there advice is just take more pain killers. Originally I was off work 3 months as could not do much more but get in and out of bed. Dont worry I think the advice that they are offering on this site is great especially the note of keeping a record of the condition and also then you have the information when the appointment with a specialist comes around. Also dont be afraid to ring your clinic if you have a question or are really struggling as they will call you back with some advice and support.

    Su

  • Welcome to the site, folic acid can be taken every day except the day of the methotrexate, if you think this will benefit you as per your blog suggest it to your rheum nurse and seek her advice. Hope they get you sorted soon x

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