Sorry guys more advice needed please. Rheumy has increased mtx by 2 tabs weekly & also folic acid daily insted of weekly. I take mtx on Mondays & folic on Fridays, will be starting increse of mtx this coming monday but dont know when I should start taking folic daily, can anybody give suggestions pleas?
Many thxs 
You can start today if you’ve got the scrip. No reason to wait - folic acid mitigates side effects of MTX so as you’re already on it and are increasing the dose then it’s sensible your folic acid dose is also upped but it won’t matter if you take it before you start the increase of MTX on Monday. Or you can wait till Monday and start the daily dose of folic acid then…….
Hi A/3637 oh thats great, yes I,ve got tabs for this mth (4) plus 2 more repeat scripts for next 2 mths just haven,t got increases for new increases. But I,m intending to go to clinic on Monday for new scripts Thxs
The usual thing is to take the folic acid every day except methotrexate day.
So you could start any day except Mtx day.
If in doubt get in touch with your pharmacist or the surgery.
Only take folic acid on 6 days. Don't take it on the same day you take mxt. xx
Is it really ok to take folic acid for 6 days all the time? How do you know if you are taking too much folic acid and a build up? How would one feel if suddenly too much folic acid in one's system.?
Hi MJ it,s been prescibed for me to help curb nausea & side effects caused by methotrexate I,m taking. I believe excess is excreted from your urine but dont know how you,d know if you,ve taken too much or symptoms. I do know women intending to get pregnant are adviced to take it also.
I think everyone taking mtx is also given folic acid alongside it & have full confidence in rheumy consultants knowing how much to prescibe for us. If you think you,ve maybe taken to much of it have a word with your dr.
I know plenty of people on 6 a week. Rheumatologist wouldn't tell people to take it if it wasn't safe.
Yes that true.
was told to up my folic acid too and took it 6 x week for months, but the nausea continued and it did look high in my bloods. I now do not get the nausea so much. Strangely this may be because I chose to reduce my folic to 3 x a week and also I switched hay fever medicines from Benadryl to Allevia. I don't think that my nurses or doctor have the time to consider my case and dosage. They never respond to questions.
Glad the nausea has improved.
hi MJSlide, I have always taken 6 days of folic acid (20+ years). I think how it’s prescribed it depends on your Consultant and illnesses. It’s prescribed daily during pregnancy, think you have to take loads to o/d.
Yes of course, makes sense now!
You can start taking the folic acid the day after you take the Mtx,then every day except the day you take the Mtx.
Hi A/C oh ok! I took 1 yesterday (as prescibed) & was intending to take 1 daily (as also told to by rheumy)instead of weekly as mtx is being increased on Monday from 4 to 6 tabs weekly & fa daily. When I was 1st prescibed mtx & fa I was told start fa on friday before mtx on monday. No instructions given this time & still waiting to hear from clinic so decided myself to wait no longer & increasing mtx this monday as will be near 2 wks since rheumy told me he was increasing both meds. I know not to take fa on day of mtx. Rheumy said was increasing mtx cos I had a flare shortly before I saw him on 1st june & reason I,m not waiting any longer to hear from clinic is because big knuckles on hands are playing up along with toes etc. So u think I should start daily after monday?
As long as you don’t take Folic Acid on the day you take Methotrexate it’s not really a problem what day you start.The only important bit is to take the Mtx on the same day every week. ..with no FA that day.
No I know that so I wont A/C anyway only got enough fa for today & tomorrow lol but going to clinic on Monday & will sit there until they renew my scripts.
*only important bit is to take the Mtx on the same day every week.* hah not according to nurse there! when they messed up my scripts awhile back leaving me with no mtx or fa for long w/end & when I went to clinic on tuesday to tell them he said oh dont worry if you take em a day late???? after 1st saying oh you,ve run out! No I didn,t run out you made a mistake & didnt add them to my script. My chemist gave me emergency ones thankfully. Maybe he needs to join this group he might learn something eh lol Thanks a/c
You just have to learn to go with the flow these days.I always keep a check on how much medication I have in hand,& start asking for a scrip well before I will run out.
Of course, ideally you take your drugs as prescribed, but as we often read here, there are hiccups ……& if you run out for any reason you just have to “carry on regardless”….& if possible make sure it does’t happen again……….
I do try A/C but feels like I,m being taken out by the tide & using the little energy i have to get back to shore, its an uphill battle!! Thing was repeat scripts rang me to say mine was ready & had been sent to chemist of my choice, long w/end but thought I had everything I needed. Great so I went to pick it up & came home, not opening it because I didnt need anything till the Friday. Opened it friday evening, no mtx no f/a no vit d & no 2.5 preds. Rang chemist who confirmed they weren,t on my script but they checked computer & could see they should have been so told me come in morning & they,d give me emergency supplies. I have no extra supplies of these meds & didnt want to miss taking any especially the preds as I,d only been on reducing dose for few wks really didnt want to go back to 5mg. Bear in mind rheumy clinic told me my scripts had all been updated so I didnt have to do anything 
Yes I,ll now check meds before leaving chemist lol
I had to go back to clinic more than 2wks after starting mtx to tell them I didnt have appt for blood tests. He tried to tell me I needed a letter?? I questioned him what letter, anyway he went away came back about 30mins later with appt for blood tests staring 3 wks after taking mtx. At the same time when I went later about mix up with script because they hadn,t updated them he told me I was to stop taking preds anyway. Had to tell him that was not what rheumy said, was told only to reduce to 2.5 until at least July.
Then when I had flare few wks back & I phoned clinic(was a Friday) he told me go to clinic monday after Id been for my b12 jab but go to xray first (these were ordered by rheumy 10 wks earlier) & he,d speak with rheumy about steroid jab. When I got to clinic a woman opened door I told her I,d been told to come, back she came told me he would ring me with appt?? Told her what he,d said back she came he,ll get in touch with appt. Fortunately flare had eased but I came home & cried on & off for most of wk. What if flare hadn,t eased? when would I have had xrays if I hadnt had to ring?
I got in touch with pals who told me he said I had appt for Sept. That meant being on mtx for 6 mths with no further review for 6mths after knowing I,d had a flare, so I wrote them an email detailing everything. Anyway finally he rang me, apologised & told me I had appt for 1st June which was when rheumy upped the meds but now still no script for increase of meds. I,m so worried if I dont up mtx I,ll have another flare thats why I,m uping them myself on Monday as I have enough to do that but not enough fa. Oh & nobody not even rheumy has mentioned anything about how long I stay on preds for when to decrease further or when next bood tests will be & rheumy said see you in 6mths which,ll be December. I,m just so tired of chasing them up for everything, dont think it should be this way.
Don’t you have a dedicated rheumy nurse in Gibraltar you can get to write everything down for you? Especially get her to explain how to manage reducing the Prednisolone.
When on Mtx you get a form saying which blood tests you need……the laboratory needs to see that & know the results are satisfactory before a scrip can be actioned.
Once you are set on the new dose everything should run smoothly, but you must keep an eye on how many tablets you have in hand & request a prescription well in advance. If you don’t understand what the doctor is telling you to do….you should ask him there & then so that you don’t leave until you are sure of what you need to do…it should all fall into place then.
The staff nurse is the one running rheumy clinic & he,s the one I,m talking about. When I finally decided to speak with pals & asked who was head of dept she told me him! But he did have a boss didnt tell me who tho & then when I deatiled everything in an email to pals is when he finally rang me to apologise & tell me appt with rheumy for 1st June. Very awkward situation eh. I,ve never run out of any meds needed on my repeat scripts ever. I only run out because the clinic had not even put them on my repeat script. chemist showed it to me & I took a pic on my phone of it, they had not been included on it.
Not been given any form, only stressed not to take fa same day as mtx nothing else! I know what I know from here, this forum & members & what I look up.
Believe me I have & do keep track of all my meds & what I need & when. It was me who made appt with gp & he updated my repeat scripts just few wks back but now because rheumy increased mtx & fa on 1st June I need them updated again which clinic said they will do. Now 10 dys later still not heard from them. Rang them last wk 2 dys on the run constantly engaged. Thne rang switchboard on thursday & they told me you have to report it to pals & they put me thru to them! So explained what had happened, she got back to me telling me staff nurse said oh it can take couple of wks for script to go thru. Told her that wasn,t right, she said ok I,ll speak with him again & she,ll get back to me later that afternoon or following morning(friday). Didnt hear from anybody yesterday, tried ringing pals & clinic but phones not answered all afternoon.
So thats the situation I,m in A/C. I tried to make appt with gp but nothing for least a fortnight. Thats why I,m doing increased mtx this monday & fa daily from today I,m not going to wait anymore to hear from him. Oh yes when appt with rheumy finished I asked nurse should I start increase with next dose of mtx he said no I,ll be in touch. I,ve got no confidence in him at all. My mistake was not asking rheumy specifically when to increase mtx, I assumed it was obvious he meant straight away/next dose as otherwise he would have said 2/3/4wks or whenever. Especially as he said increase was because of flare I,d just had. Thats what its like in rheumy over here, not good is it!
I’m afraid rheumatology is a bit of a Cinderella specialty everywhere,
Here in U.K. there aren’t enough consultants,& rheumy nurses are thin on the ground here too. All I can suggest is you make a written list of all your enquiries & take it with you each time you see either your rheumy nurse or your doctor…& as soon as you can write down the answers you are given…..
Right now it seems you are going round in circles….but things should settle down when you get your new supplies of both Methotrexate & Folic Acid….do make sure how regularly you will need to pick up new supplies.
I hope you get sorted out very soon.
Hi A/C *rheumatology is a bit of a Cinderella specialty everywhere,* Thats terrible, shocked & sorry to hear it I,m using energy I haven,t got chasing things upI shouldn,t have to & being given no clear instructions about anything. Thing is we get 3 repeat scripts & we can,t order more until last 1 has been dispensed. When it has been thats when I ring to order more couple of dys afterwards & usually everything is fine but last few mths new meds have been added & add to that Iv,e been told only 1 script for 1 mth being given as dr wants to see me. Then u have make appt see doc then you get repeat scripts Now that is good means they,re taking care. Did make me laugh tho as this happened about 4 wks ago & doc wanted to know if my eyes had been checked because I was on hydroxy for more than 2yrs.Told him.. again..yes optician referred me to opthalmogy last Dec & I was now under them. Such a waste of an appt & both of our time But that had been flagged up by another doc I,d never even seen or heard of. Talk about right hand not knowing what left hand is doing! But that was how I got my rheumy meds he updated my scripts with new meds.
Anyway I,m going to clinic tomorrow & will not leave until I,m given my scripts. Once I have them & also know when blood tests will be needed thats it & I,ll be able to make definite plans getting back to UK very very soon. I dont think UK clinics can be as bad (please no)& at least I,ll get to be seen face to face. Thanks for advice I,m doing my best really I am lol
Sorry I don't take MTX but havecalso Ben advised to take folic acid because I'm on sulfasalazine which hinders the absorption of folic acid and I take it daily
My support is non existent. Hospital decided to change folic acid from 6 a week to 1 a week with no consultation. Sometimes i get 12 tablets when i pick up injections (12) and sometime non. I tried 1 a week when they changed their standard a few years ago and felt sick all the time. I had it increased but that only lasted a year. Luckily it is still on my GP script so i order from them.
Pals tried to get blood test results for me and were told that people would be retrained and results would be sent to GP system so I could see them. It never happened. If you have a good Pals support make the most of it. Keep pushing to get what you need. I wish you all the best.
Hi Gillian so sorry to hear that it doesn,t sound good at all. Over here we can go/ring records & ask for our medical records & they,ll be given to you that includes blood tests, xrays etc. maybe try asking for your records? Thats what I,ve done as I,m only being told they,re good, no details. Can you not ask your consultant why fa has been dropped to 1xweekly as it does make you feel nauseous tho then u end up not eating it,s awful along with tiredness just a vicious circle. I,m not on injections only tablets. I,ve only used pals once, 2nd time it was hospital switchboard who told me I had to report to them rheumy clinics phone being constantly engaged for 2 dys when I couldn,t get thru last wk, pals said they would ring me late thursday afternoon or friday but they didn,t, not sure if they,re good or not yet! Thank goodness your gp can give you fa hope you can get your blood results soon
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