hello my name is monique

i am a newly diagnosed 46 year old mum of 3 young men and 2 step young men. and have just started on mtx and plaquenil its quite a thing to actually write on this board and realize yes i actually have this ra and am actually posting something . after taking the dose of metx last week of 10 mg i was petrified after reading about all the side effects i felt fine , i took it at 10 pm in the hope i would sleep off any side effect i had read that on some of the forums here im due to take plaquneil on wednesay and start taking that twice daily does anyone have any advise on taking that too ? i hope by posting this it might help someone else who is feeling scared too as i think fear is one of the worst things of this illness next week is my second dose hoping to feel fine once again any help or advice out there greatly appreciated. so nice to have somewhere to vent

Hello Monique and welcome to the forum, though sorry you have the diagnosis that brings you here. I am Naomi, aged 48 and I was diagnosed just over a year ago. I'm on the same combination of drugs as you and although I'm not feeling great, I am so much better than I was at the beginning of my illness. I want you to know that for most people things really do get so much better over the first year. Also many people find that first year very difficult to cope with. So if you are struggling with fear, shock, anger, or any other unpleasant emotions, it is entirely normal and will pass in time as you slowly adjust to your new situation. One other thing is the matter of drugs. I would advise that you don't listen too much to other people's bad experiences as our reactions to drugs are hugely idiosyncratic. Also you will have to learn to be immensely patient now that you have RA as drugs can take many months to work and may need some sort of alteration over the first few years of your illness until it is felt that you are getting the best that can be achieved.
Congratulations on joining the forum. Wise move! You will have a lot of support available to you here so if you have any questions, need to vent or just want to reach out to share your experiences then feel free. I look forward to getting to know you better in the future. Hugs and best wishes from Naomi.

Hi Monique

I echo what the others have typed.
I've had ra after having my daughter when I was 34, I'm 40 and joined nras in May. I don't talk to anyone about ra except my hubby and rheumatology and the forum.
Emtions are like an unpredicatable rollercoster or a wave crashing here there and everywhere!!!

Meds are sulf, hydro, methtrix, leth. Diclef anti inflam & solphadol pain killers oohhh and thyroxine,

Had first ra related op June this year on foot, hammer toes and bunion....rather unpleasant, was awake for op! And home later in the day!
Waiting for total knee replacement, week three of 18 week wait - no date. Asked to be awake so I can have "me time" and listen to music on my ipod! Also, I don't recover well after general ops

The people on the forum have a mass knowledge and pull together their experiences to others that ask for their take. We do like banter as well to give us a lift when we need it!

My life is amazing, happy, make the most of the day with my family!
If I could have some wishes.....another baby. Under the guidence of my consultant I stopped methtrix for 2 years, but my body wasn't strong enough to full fill my wish and fought ra

So now, I'm on a mission to take anything thrown my way to keep me mobile

Wow, 4 lads.......sounds like fun and banter!
Take care
Xxx

hi Monique,

welcome.

when first diagnosed i felt like i had been hit with a slege hammer .. to the point i lost over half a stone in the first week with the shock and stress and i was eating!

i also take Methotrexate and Plaquenil ( Hydroxy ) and i am also on an Anti-TFN now and under control, it did take a while to get there for me though. i take two Hydroxy daily, one with breakfast and one with my evening meal, to be honest i can't remember if they are supposed to be taken with food but i have always been fine doing it this way.

you won't feel so alone now you are on the forum, as it is very isolating i think when newly diagnosed, and i have learnt a lot from being here.

i'm nearly 60 now ( Gulp!! ) married with a 30 year old daughter long flown the nest.

can't begin to imagine how i would feel with four men still at home, must never be a dull moment in your house.

do keep posting,

Suzanne

Hi Monique - I'm Sylvia, 54 and diagnosed earlier this year. Welcome to the forum - this place is a godsend as there are so many lovely people and we chatter away most days. Sometimes we talk about RA and the various issues, but sometimes we just chat as friends. When I was suffering really badly, it was lovely to hear that I wasn't alone with all these confusing and scary problems, and now 6 months later I'm feeling much, much better but I still love coming here because RA is for life and even though I'm very well at the moment I have to take extra care of myself to stay that way.

Whatever is worrying you, just ask away - there's bound to be someone who's had something similar and can help.

I see you're on MTX - me too and HDX - they do take several months to really kick in fully, but I haven't had any side effects along the way. No doubt you've got more pills than you ever dreamed of, and getting organised is a big part of early adjustment. I kept forgetting to get my repeat prescriptions, but now I have a routine and my GP has an online system for ordering them, and an arrangement with the local pharmacy who collects the script - so all I have to do is turn up at the chemist to collect them - ask at your GP and find out what they do, because each one is slightly different. But anything you can do to make the routine easy is good. I also got a set of pill dispensers, so I can organise my pills for an entire week - that way I soon notice if I've forgotten to take a set!

Good luck and do keep posting - Sylvia xx

Hi Sylvia and Claire
thank you so much for your posts they are great in the past few days im already feeling so much calmer and that's thanks to you all really Sylvia that's a great idea about the pill dispenser ive been writing it all in a pad as i take each dose too so as to remember what ive had , but the dispenser will be good for me to . im happy to say i took my first HDX this morning and then went and did an hour Pilates class and feel fine so am so relieved, Claire you mentioned a volunteer calling you and giving you some help what a great idea, i didnt know you could do that , also are there any groups in north london, that is where i live does anyone know ?
Thank you and big hugs Monique xx

Hi Monque - Lovely to hear that you're doing better now - don't overdo it though. Pilates is great exercsie - enjoy - Sylvia xx

Hi again Monique

You can find out about local NRAS groups on the website. My group is friendly and not too far from where I live. We have had some interesting meetings. The Volunteer Helpline is accessed by ringing the NRAS Helpline.

As Jackie posted what we must do is ask for help with the dishes or the shopping now that R A has arrived.

Claire L

Hello Monique

Welcome to the forum, so pleased that you have found us. I've had so much support, help and advice from the lovely members on here.

I was diagnosed May 2008 and to be honest at first it was a relief to find out what was wrong with me and I was going to be given medication for it. I had to go private because my GP was as useful as a chocolate tea pot when I saw him. It wasn't until I started looking it up on the interet that I realised just what it was all about. It can take time for the right combination of drugs to be found, we are so use to going to the doctors when ill, getting a prescription for some drugs and taking them and things are back to normal. With RA it is different, we really have to be the patient patient with this illness.

I would take up Sylvia's advice about having some sort of drug dispenser. I used to think it was silly, but on the odd occasion I have wondered it I had taken my drugs. After a while you take them on auto pilot and it doesn't register that you've taken them. I got one from Lidli when I thought I was going to have my drugs changed. It takes me a few minutes once a week to do it, it is so much easier that having to keep opening bottles and trying to get tablets out of blister packs, especially first thing in the morning. Boots do my meds, they do all the ordering and picking up of prescriptions for me, all I have to do is pick them up. All of my drugs are on their computer so if I am ever prescribed something that interacts with any other drug the computer throws it up. Also, I don't know it you know about it, but you can buy a pre payed certificate for your drugs, again I do this at Boots. It costs £29.10 for three months and £104 for twelve months. Depends on how many drugs you take, but I save alot by buying one. I buy the three month one, with careful planning I get four months supply of drugs out of each card, saves a little bit.

I was first put on SLZ and had MTX added two years later. I had read many post on various forums about side effects of MTX and was worried about taking it. I came to the conclusion that with it being the most popular drug for RA most patients are on it as apposed to other drug, there is bound to be more post about side effects from the unfortunate people who do have some sort of reaction. I had no side effects what so ever until I changed to injecting a year last September. RA wise I was better than taking it orally, felt fine but my liver didn't like it. I had to come off it, after two blood tests (one month in total), everything was back to normal and I was then put on a lower dose of 17.5. My hair did thin a little as well so my folic acid was increased.

Nice to see that Barbara has put up her email address, it's nice to talk to someone person to person who understands.

Paula x