Hiya everyone. Hope this post finds you having a good start to 2015.
So, I've been on methotrexate 4 doses now and the steroid injection has run out and I'm taking Napraxen twice a day with top ups of solpadine. I currently on holiday in sunny Spain visiting my dad with my husband, my sister and her child. I'm really struggling with the pain and I'm terrified how much pain I can and could be in and the fact that the pain is settling in my right knee, left wrist and fingers. I'm terrified of my husband going back to work after the holiday. I couldn't walk yesterday and my right knee swelled up and couldn't lift the children today due to pain in my wrist. I've been, and my family too, surprised how quickly the RA seems to be advancing. My HV is looking into referring me to Homestart and I've posted on my local FB network for help and childcare.co.uk. Money is tight (can't return to work as my wage as a veterinary nurse doesn't cover childcare) so just wondering how everyone else copes? My twins are almost 2 (25th of this month). Tips please. Thankyou x
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jlmack
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Hiya jlmack from cold UK! Hope you're having lovely 20 odd˚ like my f-i-l who's at his house over there at the mo. It's doing him the world of good he tells us each evening when he rings updating us on his day, not envious at all lol! Payback time though he's got a shopping list from us for all the goodies we're missing now we're back here!
I'm sorry I'm of no use regarding help with childcare but I hope someone else is & you're sorted soon. What I can help with is MTX. I've mentioned this before I think but it can take a little while to reach it's full potential (though it seems an age), up to 12 weeks is generally advised though I did have a better reaction earlier. I had also been taking the higher dose of hydroxychloroquine for a year when it was introduced so that likely had some bearing on my earlier than average reaction. I'm also seropositive which I understand can make a difference to how effective MTX is.
Try to relax as much as possible, I know that's difficult with 2 young ones but whilst you have the opportunity of family to help the less you exert yourself the better the chance of your meds working, I find anyway.
If you find the pain is intensifying you could always go to a chemist (farmacia) & see if there's anything a little stronger they can give you in the way of pain relief or anti inflammatory until you get home to see or speak with your Rheumy or GP. The named pharmacists are more highly qualified than ours & can dispense in their own right without the need for prescriptions from a doctor or hospital. I don't know what strength of Solpadeine (co-codamol) you have it is available there in a slightly higher strength, Dolocatil codeine 650/30mg. I used to be prescribed this but the nearest dose we have available to us in the UK is 30/500mg (the same codeine quantity it's the paracetamol that is a higher dose & just the other way round in Spain). The other alternative is if your dad is a resident you should find you'll be covered as an immediate family member to see his GP if you're really stuck.
I hope you can enjoy the rest of your holiday without your pain increasing. All things being equal it should start lessening as the MTX gets a hold but do ask for help if it gets too much. Don't forget if you buy any meds & if you wish to claim the money spent do ask for a receipt. If you tell the pharmacist why they'll be able to sort you out. Keep any packaging too.
One last thing! Do remember that MTX can cause sun sensitivity so do use a higher factor than you would normally & be aware of burning even in the Spanish winter sun. x
Go have a talk with your local CAB disability officer - they have info about everything that will be on offer in your area, and can tell you how to get in touch. Also, if you haven't had any social worker involvement, ask if they can do a home assessment of your needs, and tell them everything you have difficulty with. Things could get a lot better for you quite quickly though - MTX can take 12 weeks to build up, and there is always the option of adding in another DMARD, so make sure you keep in touch with your rheumatologist or rheum. nurse to let them know how things are progressing.
Hi, I actually work as a childminder so you can imagine how hard it was when the RA set in big time....I had niggley aches and pains for a few years before but then it accelerated and I was diagnosed with RA and osteo arthritis.....I managed to carry on working although I used to have to get up two hours before the children came to give the painkillers a chance to work and for the stiffness to be bearable! I'm glad I didn't give up because four months into taking Methotraxate I started to loosen up and the pain became more bearable. I've been taking Methotraxate for nearly fourteen years now and have very little stiffness and hardly any pain and am still working looking after children who are from 11 months up to eleven years! It does get better, as soon as they find out what suits you , you will start to see the benefits. Hang in there!!!!
Hello. I'm gonna pipe in. I have had steroid shots, mine last a long time, but for others the relief wears off rather quickly. Steroid shots are directed at a certain area of the body. My rheumy put me on a low dose Prednisone, it gives all over body relief. For the first time in over five years I feel like myself, full of energy and am able to do things pain free. These oral tabs have changed my life. I was very apt not to go on them, like any med. But my Rhumy prescribed them so I tried it, and am thankful for them.
Perhaps you need a review of your meds, sounds like you are suffering.
Taking care of little ones is exhausting for anyone, let alone living with RD.
Thankyou all for your replies. As ever, a wealth of knowledge and support. I've just got my accp result (taken 13 December!) which was 1, so normal. Feel a little down it wasn't higher! Isn't that totally nuts! Anyway, I've been to the pharmacy and got some higher codeine/paracetamol (10mg/500mg). I have 30mg codeine tablets that my gp prescribed for me but find they knock me out! So only take at bedtime. It's such a balancing act and my sister is right, she says just go with the flow. It's too early to predict and question why I feel as I do one certain days, just accept it and remember it and see if a pattern emerges. Not easy when you are in it though, ay?!
No! I think that entirely normal to be disappointed your bloods don't equate to how you feel. It's natural to want some form of justification or proof to verify you're not a fraud or a wimp. This is one reason I prefer a Rheumy who listens to how I am & have been since the last appointment & doesn't just rely on images & bloods to treat.
Enjoy the rest of your holiday, the emphasis being on rest!
Hi, I've been on hydroxy since 2007 plus a low dose of steroids. My rheumy now says my RA is not under control and is talking about adding MTX. I have to change docs so will wait and see what the new one has to say. I was recommended to a gel by another member of NRAS a few years ago which I find invaluable. It is called Pernaton and when my ankles, feet and knees hurt I slap it on and it really helps me.
My main reason for replying however is that my daughter is a volunteer for Homestart and is currently assisting someone. She finds the work really rewarding and when she was on the training course she said everyone was really nice. Please get in touch with them when you get home and see if they can help you. They really will if they can.
Sorry you are having such a difficult time. It sounds like you are in the UK and i'm in US so i can't help with local assistance. However, it sounds like you need to talk to your doctor to figure out how to get RA managed. In the meantime, have you done anything about your diet? When my meds weren't working right, i go very strictly on the blood type diet. It really helped calm inflamation down in my body when i avoided food that can cause inflammation and eat foods that are known to be anti-inflamatory. I really noticed a huge difference after 3 days. I was very strict about it. Author of books and you can search on line for him is: dr.peter j. D'adamo. His book is called arthritis: fight it wirh blood type diet. I was very strict on the diet for months and felt very good on it. Once meds were sorted out, i felt like i could go off the diet a little bit here and there. But for the most part, i try to stay on it. It's a very healthy diet and i did feel like i had more energy. I also lost 20 pounds as a bonus. Good luck!
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