Newbie & day 1 of mtx/hydroxychloroquine

[Seble1]

Hi, I’m a newbie to all of this. Diagnosed yesterday with positive RA with a very high CCP. Had a steroid shot yesterday and starting on the meds this morning. Keeping everything crossed that don’t get too many side affects. Although have been off work for last 2 weeks, I work full time and hope to get back ASAP. I also own a horse who I look after myself and although struggling, I’m still getting up at 5.30am to see to her and back to stables again in pm. I’d really love to hear if there are any other crazy horse people out there who still manage as that is my greatest fear.

[oldtimer]

Welcome, although sorry that you have had to join us. I don't have a horse myself (my granddaughter has a part shared horse and spends as much time as possible with her!).

However, a friend of mine who walks with one or two elbow crutches (depending on her fluctuating state of health) manages three horses. It does mean getting up very early in the morning and it keeps her slim and fit looking. She also manages to compete in dressage. I must admit she often makes me feel rather lazy and inadequate!

So I think you can do it but don't be too hard on yourself and remember to ask for help - no one else knows what help you need until you ask!

[loppyloo12]

Hi Hun hope u ok I have had taken since 2014 and still work full time nights is a stuggle but I do it I work 12 hour shifts as a care assistant one thing it does do in my job is as much as we feel so bad at times there is a lot of people worse off then me at times it don't feel that way get your pip claim in its not means tested so you can get it while working and applie for your blue badge to Hun and keep intouch with me as hard as it gets Hun stay warm as the cold is a killer hunny and don't give up on your dreams and your horse for as long as you can but keep warm and safe xxx

[Hidden]

Hi and welcome Seble

Is it high CRP or high anti CCP?

No two people have identical disease symptoms or the same effects from drugs.

Hope your path through will be as pain free as possible.

[Doughnut61]

Wished you lived local to me. I adore horses although I don't own one and haven't ridden since 2010 . I was diagnosed with high anti ccp positive RA and could hardly get out of bed. 12 months later I seem to have got drugs that agree with me. I just listen to my body more now and say no to people which I found hard. Good luck and enjoy your horse 😘😘

[nessa11]

Hello

I don't have horses but understand how scary it is to be diagnosed and to not know how well you will feel and what will be possible. I am very new to mtx (2 weeks) and so far so good with definite improvements in pain. So just wanted to say be hopeful that you could be pain free (or very low pain) and be able to look after your horse and do all the things you want. I have been on plaquenil for years without problems and my last two weeks of mtx have been fine. Many people do really really well on these drugs. I hope you are one of them.

Be kind to yourself. All good wishes.

[Jules13]

I would be prepared that the medication will not be a quick fix. You probably need to slow things down a bit and tell your work that you may need more time off.

I had to take 3 months off work because most medications take 8-12 weeks to have any effect. Try not to do too much that involves your joints. This is a tricky time and you need to be gentle with your body. Xxx

[nomoreheels]

Hiya Seble1, welcome. I don't have a horse but kudos to to you to be determined (& dedicated) enough to be newly diagnosed & still getting up so early to see to your horse & then back again in the afternoon (I guess you'll realise I know none of the terminology!). We have friends with horses & lots of people who stable them close to us so know it's a big commitment.

I have seropositive RD (Rheumatoid Disease or Rheumatoid Arthritis, some of us prefer to use Disease because RA is often misunderstood as being OA, the more common & generally age-related arthritis). You'll find a guide to abbreviations under 'Pinned Posts' to the right of the screen. I was diagnosed with both 9 years ago. My first DMARD was hydroxychloroquine, then methotrexate which I'm still on, 8 years now & my best med to date. I also take other related meds & pain relief etc for my OA. Don't forget to take your folic acid, they're intended to help with any side effects from your MTX you may have, though it's not a guarantee you'll have any. I've tried just the one the day after MTX day & also the day before as well. I currently take 5mg every day except the day I inject. That's another way of delivering MTX, by injection, usually if side effects such as nausea become an issue or, like me, your liver results rise too high. As there's greater bioavailability delivering it into the bloodstream the dose can often be reduced without any loss of efficacy.

I hope you respond well to your treatment, I guess your Rheumy will have prepared you & explained that DMARDs don't work immediately though you may notice subtle improvements before the average of 12 weeks or so. Should you find you're struggling before that do contact your Rheumy nurse, you should have been given a helpline number, if you're in the UK that is, not sure about elsewhere. It's often an answerphone but a nurse should return your call promptly. The steroid injection should work on inflammation & with that any pain you might have.

Try not to overdo things for the new few days, let the steroid do it's good work, ask if you need help whether it's personally or with your horse, drink plenty of water & hopefully you'll find things a little easier soon.

I hope you find it helpful being here. If you have any questions, however daft you may think they are, don't hesitate to ask, between us we've lots of info we can share & there's always someone online whatever the time of day. 😊

[Seble1]

Thank you all, I’m blown away by all your responses, I feel much less alone.

Sorry I haven’t responded earlier, I actually had a few really good days and been keeping busy (a flat battery and then snow the main causes!). I guess the steroid took effect after a couple of days. I’m not having such a good day today and I’m going to have to get used to the ups and downs I guess, I probably didn’t pace my self enough.

My doctor is ringing me this morning and I am going to ask to have my sick note extended. I would be due to go back tomorrow and that is going to only be the second methotrexate day, and my wrists, shoulders and knees are feeling bad so sitting at a computer for 7 hours is definitely not going to help. I still have carpal tunnel caused by the RA and reduced strength in my hands and arms.

It is high anti CCP antibody (over 300) I did have raised CRP and ESR but I don’t know the actual results and my Rh factor was mildly +ve.

I didn’t really notice any side effects from methotrexate last week although I was still feeling shattered from the actual flare the day after and took my folic acid 2 days after as per consultants instructions.

Luckily I’ve got physio appt next week, I had physio in October for what I thought was a shoulder injury in the summer (I hadn’t actually done anything to injure it so probably was a start of things to come) and she left me with an open appt until the end of November so I saw her just before my rheumatologist appt and the actual diagnosis and she booked me in to see her again after.

I have just the best care, I went to my surgery on Monday 20/11and saw a nurse specialist, she took bloods and booked me to see my GP on the Friday, my GP had the ESR and CRP back so sent an urgent hosp referral and I had that appt only 10 days later on 6/12. I’m at the hallamshire in Sheffield and my consultant is an early arthritis specialist so am in the best hands.

Thanks again for taking the time to reply to me, it really has helped how I feel about all this and boosted my determination. I’ve warned family that Xmas is going to be low key for me this year and they are all totally understanding. My wonderful step daughter has also made a donation to NRAS in lieu of Xmas presents this year, she’s so lovely.

😊 xxx

[nomoreheels in reply to Seble1]

Good to hear an update. Beware of good days, we can tend to overdo it especially in the early stages but RD has a nasty habit of making you pay for using the good days to the max & biting you in the bum so be aware!

The Carpal Tunnel symptoms may ease as the inflammation reduces but if needed do ask for splints for your hands. I've had CT release & recently had a flare up in both arms/hands so can appreciate how annoying it can be.

Do let your Physio know you now have a diagnosis & on meds, we have specialist Physio's trained in RD, usually connected to Occupational Therapy, so if she isn't qualified do ask your Rheumy team to refer you.

I hope you have a calm Christmas, lots of help that's the key. Do thank your stepdaughter for her donation to NRAS, that was a very thoughtful of her. x