Dx today/scared to take medication

[wowzerbowzer]

Hi all-I was dx'd today and am to start mtx and fa. Low dose to start of 7.5mg/1mg respectively. I have panic disorder and hate/fear taking medication. I've decided I'm going to start on the weekend so I have my husband and no work responsibilities. Doctor said I should get a pneumonia vaccine first. Just need some encouragement. I'm feeling a little anxious and bummed at the same time. I can handle stomach upset and diarrhea (I don't want that though lol) ...just don't want anything messing with my heart-like racing-or head-like dizziness/goofiness. I'm a control freak....but I know I must do this because my foot and ankle is shot (MRI that lead to the rheumy appt) along with all the other painful joints, Schamberg's disease (rash), and fatigue. UGH. Thank you.

[Kate23]

Hi, oh how I know that feeling regarding medicines, I was exactly the same 2years ago when I was diagnosed with RA...the more you read the more afraid you become.. You get some good tips on here though. The best tip I had regarding MTX was to take it in the evening so you sleep through any side effects... I started on MTX and had Hydroxychloroxine added in 6 mths later.. Hope your symptoms are soon under control, stay positive and let us know how you are getting on. (Lots of wise owls on this forum)

Kate x

[Beverley-NRAS]

Hi wowzerbowzer,

your feelings are quite common but you will get a lot of support and encouragement on this forum. Where are you based? If you are in the UK then you can always ring the helpline and have a chat with us:

0800 298 7650 Monday - Friday 9.30 am - 4.30 pm

Regards

Beverley ( NRAS Helpline)

[nomoreheels]

Sorry to hear you've been diagnosed but welcome, I'm sure you'll find it helpful being amongst others who understand how you feel.

Having to take meds for most likely the rest of your life isn't anyone's idea of fun but the fact of the matter is without them we'd be in a pretty poor state. So, that said, you need to find the wherewithal to start them, try not to think too much about it, that's best. I take it you're not in the UK? You may notice here we take 5mg folic acid, anything up to 6 a week just not MTX day, they help with side effects. It was my second DMARD so I guess having taken tablets for a while wasn't so much a bother for me, that said I was just pleased to have a name for what was wrong & would have eaten a scabby dog if I thought it would have helped. My first MTX dose was 15mg so double your starting dose & I took 2 with my meals, breakfast, lunch & dinner so maybe you could try the same but just the 1 tablet with meals. My Consultant advised against taking them all at night in case they sat on my tum & caused nausea or even sickness. I've not heard of them affecting you the ways you're bothered about but if they do then just report it to your nurse, you should have been given a helpline number.

I've been on MTX 8 years, injections for 7 of them & it's been my most successful DMARD. I'm currently on double therapy with leflunomide, problematic feet, constant disease activity. Guess they've lost touch with the rest of my body & unaware the rest is pretty well controlled!

If you have any more questions or need hints & tips we'll be only too glad to help, we've all been where you are just now so know just how you feel. 😉

[Hidden]

Oh hun, you are preaching to the choir. It is scary to start a new drug, but I discovered my fear of the drug was worse than the drug. When I started mtx, I became a robot and "just bit the bullet" . The only advice I can offer you is to drink plenty of water. Even if you aren't thirsty. Water kept the headaches away for me.

All the best to you

Sue

[Gnarli]

Hi and welcome to the club you would never want to join. Like you I was overwhelmed at the thought of serious drugs for life. Worried myself silly over it all. However I felt it would be better to take the drugs rather than risk joint damage. So I am taking 20mg of MTX a week and 5mg of folic acid 6 days a week (never on MTX day). I take it with my evening meal and a big glass of water and - nothing. I may be one of the lucky ones but no side effects apart from feeling a bit icky the day after.

Wishing you all the very best

Jan

[wowzerbowzer]

Thank you all so much for your replies and encouragement. I will "bite the bullet" and get them down. The folic acid is 1mg every day and then the mtx in one day...just to clarify. The lower dose is because my doc knows how phobic I am and she said after my first month on that it will go up in dosage if labs all look good. I don't like being part of "the club"....but there are worse clubs to be in, so I will have to make the best of it and grow a pair!! lol

[nomoreheels in reply to wowzerbowzer]

Did you take them or have you booked to have your Pneumovax first?

[wowzerbowzer in reply to nomoreheels]

Getting the shot first. I work for hospice in many area nursing homes so I am around very ill people continually. Can't chance it.

[nomoreheels in reply to wowzerbowzer]

I have it just because I can! No, seriously, here it's recommended we have that & the flu vaccine each season (sometimes it's also recommended that anyone else who lives with you does too, or is your carer).

[Entero]

Hi Wowzerbowzer, I'm also quite new to this club and like most others here I felt the same as you re drugs - particularly Methotrexate, which I started in October. It helped with the RA but I felt really headachy and generally unwell, along with v low neutrophil count so when a new Consultant took me off it I wasn't exactly disappointed. However in those few weeks boy did I get to see how much it had been helping! I'm now back on it, injection this time, with 5mg folic acid 6 times a week and it's made a huge difference to the side effects. I never thought I'd say this, but I'm really hoping I'll be able to continue on it this time. I wish you luck 😊

[FionaHerts]

Hi Entero. Did your headaches come back on the methotrexate injections? I've had problem with headaches (shooting pains) on methotrexate tablets and had my dose reduced right down to 7.5mg and then a gradual increase to help my body get used to it. Unfortunately that's caused an awful flare which had been going on weeks. Just got up to my 12.5mg usual dose and starting to feel that headachy feeling coming back. I've heard conflicting reports about injections, some saying they got migraines the day after injecting. Pleased to hear injections are suiting you well. Best wishes.

[Entero in reply to FionaHerts]

Hi FionaHerts, I've only been back on it a couple of weeks but early signs are that the injection is much better. My guess at this early stage though is that it's the increased folic acid that's also making a big difference- I ran out and skipped a day and have that oh so distinctive Mtx type headache today I'm sure you know what I mean....

I'm still only on 7.5mg (had a big shot of steroids last week so pain is good) as my main issue is it seems to impact so negatively on my neutrophil count. Best wishes to you too x

[clementlu]

Hi, what a coincidence i just started my mtx for scleroderma dx 3 days ago ..15mg once week for 2 weeks and then will be 20mg alway follow next day by fa 5mg...like you and most of us i was sooo afraid of side effects........i thought to start on a monday morning but after reading some post i decide to take it sunday night..so side effect would be while sleeping...that night i slept good and no side effect ..maybe only 1 hour very little foggy brain (not even sure if from mtx or need to eat!!) i dont know if i could have some at my next dose or when i ll go to 20mg...my dr told me to split the 20mg in 2 dose 4pills morning and 4 at night..i ll try this....

so and if you do have some chance are that they will temporary..

[clementlu]

i drank a lot of water and eat food..probably that help