Have just joined and looking through the many posts, it does seem to be a great support. I have had RA for 31 years, was also diagnosed with stystemic lupus in the early years. Mostly affecting my feet, ankles hands and wrists. Had many steroid injections, plus bed rests and took daily steroids, Azathioprine with volarol retard as my main painkiller. I also had an underactive thyroid, diagnosed in my thirties. I have had many operations on my hands and feet. A Carol tenden transfer on my left had, a tenden op on my left thumb, new knuckles on my right hand, triple foot fusions on both feet, toes straightened. I need an fusions but have decided against it due to the long recovery time. The last 4 years have been on Humira this has been a wonder drug, however have been getting small skin cancers so we decided to swap Humira and Azathioprine for Rituxamub and Mxt. Have been suffering greatly with back pain , pains in my bottom and backs of my legs for the last 5 months. Was due to start the Rituxamab the end of this month but backed out and stayed on Humiria, have come off Azathioprine 2 weeks ago and am flaring up badly as can't start the mtx for another 2 weeks. Also they stopped indemeticine a few months ago as I'm the wrong age and with high blood pressure. Was put on Naproxen, didn't really work so have been on Amitripline for two weeks,10mg makes me like a Zombie. Just wonder if anyone has any suggestions that don't include codeine. For pain relief. I am also worried about going on Mtx. Have suffered side effects with many of the Medicines given. Also have osteoporosis.
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Gigi71
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It's all trial and error, give it a go and if it's not for you, up the steroids for a short while, till something works. Although diet helps, a high protein low carb has been good for me, need to get back on track.
Thank you Silvi. Have seen how helpful people are. Enjoy your Sunday.
Hello and welcome. I'm glad you've found this community and you may also like to join the Lupus UK one as both have helped me a lot. I've just learned that I have primary Sjogrens with a very MS like presentation so I haven't been coming here as much as I used to when first diagnosed with seronegative RA five years ago. But I am highly drug allergic so I thought I'd put in a good word for Methotrexate - which I took to excellent effect with Hydroxichloraquine for two years.
I attribute MTX for seeing off my RA symptoms almost entirely. Unfortunately Hydroxy gave me anaphylaxis so I had to come off it after 18 months. And Methotrexate just became increasingly hard to tolerate even by injection - and I didn't feel that my non erosive RA warranted these severe GI effects I was getting.
But you have tolerated Azathioprone well and this drug hospitalised me twice last year with pancreatitis. Your RA is obviously very erosive and we are all different in what drugs we can tolerate. So I would not be scared to give MTX a go - it's an amazing drug and no more potentially toxic than Azathioprine - far less so in my case! My RA symptoms are slowly coming back but I now know this is because I have primary Sjogrens that is currently untreated. I do not have a form of RA that destroys my joints - just my peripheral and sensory nervous system. If my rheumy recommends that I retry Methotrexate again I would definitely consider it. Although I'm hoping he offers me a treatment which prevents further destruction of my small nerve fibres instead.
Ps Amitriptyline was good for me until it stopped working. You need to take it at least two hours before you go to sleep though as it will make you feel sluggish and groggy otherwise. Some people just can't take it and prefer Pregabilin. I can take nothing apart from paracetamol now..
Thank you Twitchytoes, for your positive advice. I think I just feel out of control at the moment. Took Amitriptyline at 7 pm last night, slept better, luckily am retired so can rest in the day, although I like to live my life as full as possible. A recent blood test revealed no lupus factor which is a relief. I think all the information you get when you are about to take Methotrexate makes you apprehensive. Although the the blood test are reassuring. Did take it many years ago but didn't think it was as good as Azathioprine so put myself back on it. I do hope you stay as well as possible, paracetamol is such a good drug. I do need to look up Sjogrens as I haven't heard of it before am finding many different conditions I have heard of on this site. Enjoy your Sunday.
Thank you for your sincere wishes Npkb. I have had good and bad times like you I presume, I think you just hope it will burn out as you get older, no such luck. Best wishes to you too and a hug back to you.
Welcome to the site!! You'll find that we are a good group who will do our best to help you.
So you've had RA for 31 years and never been on MTX? Well I just finished dose 2 of mtx and it just makes me tired for 2 days. Everyone is different and I was so scared to try MTX because I had such bad side effects with hydroxychloroquine.
Glad you like the photo, it's Sao Rafael, Albufeira, Portugal. I have very good friends who live there. I did take MTX many years ago for about 3 months and didn't think it worked so I went back on Azathioprine. That was in the days before the new drugs came on the market. I have found Humira very good, but there is a worry over my skin and small skin cancers. Azathioprine is meant to be a culprit for this. I feel tired when taking Humira for 24 hours so can deal with that. Hopefully you will get a good result taking Mtx, Thanks for sharing your experience. My ankles are so swollen so going on Mtx will hopefully help. Think I am going to stop the Amitripyline as I don't feel myself. Too many changes. Thank you for your concern.
Small doses of metrotexate are ok start whit a small ammount, and see if that help you, I did that, also CIMZIA is a good biologic , my Reumathologist likes Orencia it is an l-6 blocker, and suppose to be very safe, Humira is a TNF so if a TNF is causing skin problems you need to try another type of biologic, CIMZIA is a TNF to , but when I try Humira I had said Effect , no side effect on CIMZIA for me whatever you try start whit the smallest dosage avelable, I personaly stay away from infusion , to much medicine at one time ,some predisone will help you in the mid time ,green tea ginger and turmeric alleviate the inflammation to
Thank you Aurelibert for your helpful advice. I do get to see the nurse in about 3 weeks so will mention this. I do drink herbal drinks and not black tea, ginger is one of my favourite's so will try adding turmeric, I know this is good. Yes it does seem a lot of medicine in one go, also it's meant to take 4 months to work and knocks all the B cells out for a time. Have also decided to stop the Amitripiyline, felt like I was in a fog. Have gone back on Naproxen for now till I speak to my GP, it's not meant to been taken when you take Canderstarten fo BP. Or so another doctor in the practice advised me. Hope you are keeping well and thanks.
So much better off Amitripyiline, can cope much better, had a telephone appoint with my GP, will stay on Naproxen, in an ideal world you wouldn't take with canersarten, but as will be having even more blood test when I start mxt. This coming Thursday they can make sure no problems with my kidneys. Waiting for physio for my back. Have also asked to be referred to the Falls clinic as had another fall last week. Nothing broken but have a big bruise on my are, my metal garden chair stopped my fall. Was coming out of my French doors with 2 cups of tea.... Has anyone been to a falls clinic ? Hope to hear from you.
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