Feeling lost

Latest meeting with my Rheumatologist was so disappointing. He wasn't interested in my other joints just my hands. They aren't flared so wasn't interested. He didn't look up from his notes. Didn't really listen to me. Been on 15mg Methatrexate and wasn't bothered by my lethargy or migraines which I've never had before. Has just decided to up Mtx to 17.5mg and will see me in three months. I feel kind of left out in the open with no real support or guidance from him. He also told me to stop taking the folic acid. Now I'm concerned about that as thought I would need more. Yes it gives me reflux but I don't want to get the affects of not having enough. He wasn't interested in my concerns. Half of me wants to keep taking the folic acid and half of me wonders if I should stop it. I shouldn't be feeling like this after an appointment.

22 Replies

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  • Hi, sorry to hear you are having problems. I went through similar with my consultant, didn't appear to be listening to me, didn't appear intrestead, wanted to increase methotrexate all the time even though I was having problems on it. In the end I had enough and at my next appointment I actually asked if she heard me and when she said 'what makes you say that', I told her how I was feeling. Now I am no longer on methotrexate but I am now on azathioprine, hopefully this will work, and at last I feel as though I am getting some where. Hope this helps x

  • Thanks Maria-68, I think that the appointment was booked and everytime I felt bad it was "hey it's ok I see my consultant in a few weeks, then in a few days etc" and then I was left so disappointed and now I'm going to be waiting again while worrying what my body is going to do next.

  • MY next appointment is next year, they changed it four times, so I contact the rheumatology nurses if I get to concerned or worried, and they are really good at supporting, and help where they can, that's why they are there for us.

  • I have found the nurses helpful I have to say.

  • Hi, lots of questions for you!

    How much folic acid have you been taking? I wonder if there is a compromise solution between stopping completely and carrying on as before? How do you know it's the folic acid that gives you reflux?

    What a shame you had such a negative experience...are there other consultants you could see? I've changed so many times before finding someone I can relate to. Hope you can find someone you like.

  • Hello Matilda, I started on 2x 5mg tablets once a week when on Mtx tablets(10mg) , I switched to Mtx injection so they told me then to take folic acid daily for 6 days( 30mg) . I then started getting reflux. They assumed it was the Mtx and as my Symptons had settled the consultant haulted all meds. 6wks later I was flaring all over. I contacted the nurses who told me to start back on Mtx injections but to take the folic acid for a couple of days before. The next day (so before the Mtx) I was getting the reflux again. They told me to just have the folic acid then once a week again. I was getting so tired I upped it myself and am taking omeprazone with it. I just don't know what to do for the best.

  • Have you spoken to your GP? They should be able to help you sort out what's going on and the best way to deal with it.

    I only take 5mg folic acid once a week, but I know there is great variation in what people on this forum do and what is suggested by the medical teams. It's usually increased if there are problems with nausea, associated with high doses of MTX. I'm not aware it can help with tiredness.

  • Hi there what I usually do is write a list I want to ask as before the consultations are over before you know it and then you say to yourself oh I wish I said this and that but there is some rude consultants out there as I seen on this board and I remember at one off mine 1 year ago I was in agony and my rheumatologist was on holiday and I got a register , I walked in to the room and had to use a stick then as I was in agony and my balance was iffy, and she said too me what are you using a stick for and I said well if I don't I'll need you too pick me up off the floor , and I thought to myself what a stupid question to ask someone , thank god I never had her again.

  • I know how you feel that's exactly how my first appt With a rhumy went he wasn't interested in anything i said wouldn't listen and basically said i was crazy i didn't have RA but didn't want to help find out what was going on. I walked out and im finding anther and if you i would do the same you deserve much better treatment AND someone to listen to your concerns its your body you know it best. I hope you find someone to listen to your concerns better. Remember its your health and you deserve to be treated like a human

  • Hello Amhoarten, I think you have been treated with little respect at your last consultation, it sounds most demoralising. I think if I were you I would give the contact number inside your methotrexate record book a call, ( I'm assuming you have one ) and have a chat with one of the rheumatologist nurses. I have always found them quite approachable and helpful when I've been feeling confused. You may have to leave your name and number on an answer phone but they do eventually get back to you. Failing that you could call the NRAS helpline and talk to someone there for advice. I know the consultants are very busy but it's not nice to have to wait months for each clinic appointment only to be given short shrift and come out feeling even more muddled about our meds than when we went in!

    Good luck, I hope you get something sorted.

  • A teaspoon-of baking soda will nuetralize heart burn or acid reflux. Baking soda, ( sodium bicarbonate) is a base substance. It has a pH higher than 7.0, and therefore neutralizes stomach acid.

    I don't think folic acid has anything to do with acid reflux. Our bodies produce folate and folic acid is a man made supplament. MTX interfers with folate in our cells it also causes our cells to release adenosine. According to my rheumy, for RA we need the effects of the adensone which mtx releases from our cells. Cancer patients need both the decrease in folate and the release of adenosine. Please ask your doctor about this. I take 5 mg of folic acid a day, even on MTX day.

    livestrong.com › Food and Drink

  • Hi suzannedale,

    Folic acid interact with mtx, you are not supposed to take it on mtx day. That is because folic acid will cancel the effect of mtx that you take on that day. It will be as good you take nothing. On other days, folic acid helps to minimize the side effect of mtx hence we need to take folic acid on other days beside the mtx day.

    livestrong.com/article/4206...

  • There are 2 schools of thought on this Amy-lee. Some doctors prescribe folic acid with mtx, even on the same day. Mtx does interfer with folate. The interference is needed for cancer, not RA. MTX works continuously in our bodies, throughout the week after taking it. So when people take folic acid the day after, before or anytime durring the week, it does not cancel the positive effects for mtx for RA. MTX is still causing the cells to release adensone throughout the week. This is according to Health Canada, the FDA is leaning towards this too. Having said this Please follow the advice of your doctor and the health board of your country.

  • Thank you for the clarification. Since I am okay so far, I will continue to work closely with my rheumatologist in the same way. Anyhow, this will add on to my knowledge where I can ask my rheumatologist when I see her next.

  • The different rules each country has, and the difference in each doctor prescribing folic acid is confusing.

    I wish there is a world wide rule when it comes to this question on folic acid.

  • You are very right to say that. Have a look at the link below, it is very much depend on the decision of our doctor:

    medscape.com/viewarticle/58...

    A consensus for folic acid or folinic acid dosing or administration does not exist, and the decision to initiate supplementation is physician-dependent. Folate supplementation may reduce low-dose MTX adverse effects and prevent earlier discontinuation of therapy, potentially allowing for a more durable response to MTX. Clinicians should consider that folic acid supplementation may have the additional benefit of cardiovascular protection[11] due to its ability to prevent MTX-induced hyperhomocysteinemia.[2,11]

  • Can you contact the Rheumy nurse or GP. You shouldn't be left feeling si unsure after seeing a so called specialist. When you go next time ask them to look at you while they speak and you speak. It is hard to dismiss someone if you have eye contact.

  • Hi my names Gaz ive had R.A for approx 15 yrs. I,m on 12.5 mg of methotrexate wkly, i also inject with humira once every 2wks, also 75mg of anti inflamatory daily and at the moment im taking folic acid daily as my folate levels had dropped i used to take it once a wk but stopped as i felt it didnt do anything but hey so much for self mecication. Anyways dont stop the folic acid ot can have an adverse effect. Best bit of advice iwas ever given was off a rheumatology nurse who was looking after me when i had a stay in lancaster hospital. She said do whatever works for you cos you have this for life and thats exactly what i do. Increase painkillers just do it. I also wrap my joints with tubigrip bandages. Short term relief is what its about. Take care n good luck

  • I don't know if this helps but the Arthritis uk booklets I was given say folic shd be taken 48 hrs after methotrexate [mtx] pills or injection as it helps clear the system?

    As for reflux I swear by ginger , crystallised or for a treat stem ginger in syrup or for a really big treat in dark chocolate lol. Early dinner and don't lie down for 2+ hrs...?

    Off mtx 3 weeks now and cautious - still no sign of CT scan for lung tho and won't see consultant till November - 8 months....

    Has anyone tried CBD oil as painkiller ? Can't get any response here tho' it's legal stuff now.

  • Thanks for all the support everyone. I will get there I'm sure, it's obviously going to take time and lots of trial and error. Wishing you all a pain free weekend xxx

  • Hi Amhoarten,

    I am very sorry to know your situation. My suggestion is to change another rheumatologist. We are already in great pain and we need good and concern rheumatologist to give us confident and advice to look forward to, not something like what you had experience.

    Anyhow, I am not sure what he has in mind for you, folic acid is to minimize the side effect of mtx, therefore those who take mtx will be advised to take folic acid too. Please read the link below and ask him about this.

    livestrong.com/article/4206...

  • Hi Amhoarten - Unfortunately, there are docs out there like that. When I my toes started turning, I told my rheumy and she told me that it could not be RA. Because the deformity was causing me to be unable to walk at all, she sent me to the orthopod, who took one look at my x-ray and said "of course it's RA. Your bones look like they are covered with frost." When I got back to her, she just shrugged and said, "Oh, who knew". I won't insult you by offering advice however since I am in the US... Good luck though. That is totally frustrating.

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