MXT Advice Needed Please

breane

Hi,Saw the rheumy consultant today and she has changed my meds. I will still be taking Hydroxy and Omeprazole but she has now added MXT and Folic Acid.I am a bit concerned about the MXT as she is starting me off on 15mg a week and that seems a high dose as on the leaflet she gave me it says the usual starting dose is between 5mg and 10mg.What dosage did you all start on?Also how long does it take for any side effects to show up?I have another two weeks of Prednisolone(one a day) then I will be off them.It's the Pred that has been keeping me pain free but she wants me off them and that's why the MXT has been added.Each time I have an appointment with rheumatology I see a different consultant and each time they change the meds,it all gets very confusing.I'm supposed to see the rheumy nurse in three weeks time to check the new meds are working OK but she has no free appointments until July and the same with the consultant,I should see her again in 3 months but when I tried to make the appointment the receptionist said there was no appointments until Dec.!! They are going to try and see if they can arrange an extra clinic so in the meanwhile I guess any problems I may have will have to be sorted by my GP. Do any of you have problems like this when trying to make rheumatology appointments? Breane.

carolanivey

I started at 7.5 mg by infusion (though a vein), then switched to pills. Over the years I've been as high as 20; currently I'm at the equivalent of 15 mg, administered by self-injection under the skin.

Your situation sounds frustrating. I'm in the U.S., and though it may take time to get in to see a specialist for a first appointment, in general it's not too much of a wait to get the next appointment. (Which could all change with the new health care legislation.)

Is there any way you can ask to see the same consultant, or to insist the new one consult with the previous one before making a change? These meds need adequate time for you to find out if they're going to work, which could be months.

I would say don't be afraid to dig in your heels and ask for what you need. You are your own best health advocate!

carolanivey

Side effects depend on what type you're taking, oral or injectible. With the pills, you'll know pretty quickly if it's going to make you nauseous and fatigued. The folic acid should minimize the mouth sores. I never got mouth sores, but my tongue would be just sore all over. Over time, many side effects could lessen and fade away.

page35

Hi Breane

i started on Hydroxy it didnt work so they added Mtx with me too.
i took 10mg to start with then 15, then 20, i got side effects at 15, but also felt the benifits at 15 :roll: .
the side effects have now easyed greatly but sadly i am also seeing less benifits so think i will be upping it again in a few weeks.

could you call the nurse and ask her if you can start on 10mg? if it makes you feel better about taking it.
have they told you to get your bloods done every 2 weeks?

i wish you all the best with it
sharon

annie_mial

I was started at 12.5 and had no problems at all. Went up every two weeks until I reached the max (25mg) which is where I am now.

I am currently getting mouth ulcers badly but I see the Rheumy next week and will ask if I can put up the folic acid - I take 5mg x 3 times a week, but I have noticed that the amounts prescribed vary enormously.

Annie

breane

Hi Sharon,Yes I was told I need a blood test every two weeks to start with and then once a month after that.I take the Hydroxy and Omeprazole after breakfast so I guess it's OK to take the MXT at the same time as it's supposed to be taken with food even though it's only once a week.The rheumy just told me to take the MXT on a Sat. and the Folic Acid the following day.I've had no problems at all with the Hydroxy so was surprised when she added the MXT.I'll be starting it this weekend so hope all goes well!! Breane.x

lindalegs

Hi Breane,

I started on 7.5mg tabs
2 weeks later increased to 10mg tabs
2 weeks later increased to 12.5mg tabs.

I had vommiting 3 days after taking first dose, it settled till I increased the dose and then same thing. My Rheumy dropped my dose because of this and now I'm on 10mg tabs and have no side effects.

We're all different and you could be lucky and not get any side effects. Hope it works for you.

Luv Legs

skezier

Hi Breane,

I started on 10 and was fine, went up to 12.5 and get a bit of sickness but the folic acid is not so good for me either..... got liquid but will have to ask for some anti emetics I think.

The good thing for me is it does seem t show promise of working. Good luck and fingers crossed for you. Cris x

dreamdaisy

I started on low-dosage tablets which were gradually increased. After a few months I developed a skin rash and was taken off them. I later started injected meth (which I am not allowed to do myself.) I have no side effects, neither does it do anything to help my PA. I'm still on prednisolone, either 2.5 or 5mg in any combination I need. I did give it up but found I could not cope without it: that stuff works. Other people on here have had outstanding results with meth. As far as I'm concerned the hospital is wasting its money. I sincerely hope it works for you. Good luck! Dreamdaisy.

frogmorton

Hi Breane

Just me calling in to offer you my support .

I hope you are ok otherwise and that you have been able to get to the van this season?

Take care

Love

Toni xx

dorcas

Hi breane,

If your consultant wants to see you in 3months then the receptionist should be fitting you in...that's what happens with my rheummy; so my advice would be to stick to your guns and insist they give you the appointment that the rheummy says you need.!

When I first started on mtx tabs it was at a very low dose 5mg building up gradually to 25mg. Due to side effects I stopped the Mtx but was eventually put back on it and I'm now on Mtx injections 15mg which I can tolerate without any nasty side effects.

We are all different and on differing combinations of other meds; the rheummy's know what we can and can't take but if you are concerned about starting on such a high dose then speak to your GP about it...or even your local pharmacist who will know how and in what quantities Mtx can/ should be safely taken.

Hope it works out for you...x....Mtx is a very useful drug and can give great results.

Iris x

mightymam

I just started yesterday on 10mg then increasing to 15mg in 4 weeks. I would talk to your docto, you need to be happy with what you are taking. Gud look.

breane

What a fiasco this new prescription for MXT and Folic Acid has turned into. Took it to the chemist and the pharmasist refused it as the consultant had filled it out incorrectly by not putting the amount of tablets required.He also said the wording on the perscription didn't seem right,not sure what he meant.Went back to the hospital today but there was no one who could re write me another prescription so I was told to ring the consultant's secretary tomorrow to see if she can help.I'm starting to lose faith in the consultants as each time I see a different one and each time they change the meds I'm on.If I don't have any help from the consultant's secretary I will have to try and see my GP.Do any of you get to see the same consultant each time? Breane.x

dorcas

sorry you've had the run around....but at least your pharmacist seems to know what he's doing :roll:

I usually see either of two consultants at the rheummy hospital (there are 4 in the clinic I attend).
I also see the same rheummy sister who follows up the anti tnf patients for research trials; and the same Mtx sister. so there is a good deal of continuity.
hope you get things sorted out tomorrow.

Iris x

breane

Hi again, More trouble with my prescription for the MTX and Folic Acid. The rheumy consultant said she would start me off on a very low dose of MTX but as I explained further back on this thread,she had wrote out the prescription incorrectly and when I got the meds today,it's 6x2.5mg of MTX and 3 Folic Acid not I x 2.5mg.Also because she had put 'Pred' on the prescription and not the full name 'Prednisolone',the pharmasist wouldn't let me have those so I had to go to my Gp's surgery and get a new prescription wrote out for the Prednisolone.Have just collected it from the surgery only to find they have put the wrong amount on it so I now have to go back to the surgery this afternoon to see another doctor and get yet another prescription wrote out.Also I've only been given 4 weeks supply of MTX and Folic Acid because I should be seeing the rheumy nurse at the end of the four weeks but the only appointment I could get with her is July 28th so I guess I will have to try and speak to her on the phone nearer the time I run out of the meds.I've spent three days and 6 phone calls trying to get this prescription put right.Talk about feeling stressed out!!!!! Breane.

dreamdaisy

Welcome to the roundabout. Once you're on, you can't get off. It's a lovely ride. DD