What a journey so far this year starting with a react... - NRAS

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What a journey so far this year starting with a reaction to Leflunomide roll on 2026

julie1908 profile image
9 Replies

Sorry if i have gone on too long but so much in a short time.

What a journey i have been on but so pleased i can see a light at the end of the tunnel. It all started back in December i had been on Leflunomide for about 3 months and it had just started to work, i had experienced the odd bout of diarrhoea but all of the sudden i started to be sick after eating food and at first it was happening every few days and then nearly every day where i ended up not eating as it got to the stage where anything i ate i was straight in the bathroom, this went on for 4 weeks and because it was over Xmas/new year i couldn’t get to speak to anyone at rheumatology they had turned there answerphone off. I ended up phoning my GP who saw me immediately and gave me a thorough examination including special blood tests and also gave me anti sickness tablets which unfortunately didn’t work. The journey to see my GP and way home i couldn’t stop vomiting. When i started be sick with drinking water i thought about going to A&E but i managed to get through to rheumatology and leave a message and when they phoned me back i explained that i think it’s the Leflunomide causing it and may i have the drinks to flush it out of my system, she said she wasn’t convinced it was the drug causing it but said she would speak to the consultant and a few days later the hospital phoned me to say they have the drinks to collect from the hospital pharmacy so my husband went straight there to collect them so i could get started all i can describe them as is looking like wallpaper paste and i had to drink 3 large glasses a day for 11 days but i really struggled with 3 so drunk 2 a day for 17 days, i had never felt so ill in my life so after a few days i started to feel a bit better and was able to drink a small cup of tea and a biscuit and kept it down and it got better day by day. I had a wrist replacement due to be done on the 13th February as i had to postpone it in January due to the sickness but my Rheumatologist consultant advised me against it as she said my RA is so aggressive and my CRP is 155 but when the time came i decided to go ahead with it as i felt so much better apart from RA pain as i am now on no medication for it. Then because i chose a block and not general i was able to come home that evening as operation went really well but that night i was in the most horrendous pain even though i had morphine and my hand started to swell but never having a plaster cast before i didn’t know if this was normal. The next day it got worse and 2 large blisters appeared between my fingers so by the afternoon i phoned 111 and they said a Dr would phone me and when he phoned he said go straight to A&E and as soon as 2 Dr’s see me they both thought it was compartment syndrome so removed the cast and observed me for a few hours and then was satisfied it wasn’t but said i was very lucky i came in. So the Dr said they would put a cast back on how it was but looser and to take a seat and wait. Then a sister called me very abruptly and because i take my time to get up from a seat and walk she kept repeatedly calling my name and she could see i was trying my best. She took one look at it and said your not having a plaster on that with them blisters and was quite rude about it and called an orthopaedic dr over and they both said we will put a splint on it to which i said no i want a cast back on as my surgeon had done to protect the new wrist and rod. Then the Dr tried to force this splint on my very swollen blistered hand and pushing down on the incision i just screamed and said you are really hurting me and i want both your names so i can put a complaint in to which the Dr totally changed and couldn’t be nicer he put me in a wheelchair and wheeled me round to the orthopaedic department and said if you want a cast back on i will do it for you but i am not very good. So he put this cast on and it was 3 times bigger than the original and a right mess but he said as it’s Friday evening come back to this clinic on Monday morning and someone in the plaster room will put another one on. The next morning when i got out of bed my pillows and sheets were covered in bloody water stains where it had all leaked out from all that pushing and prodding trying to get that splint on.? On the Monday went back and the plaster man couldn’t believe the state of the plaster but put a nice neat one on and he was the only medic i see that didn’t ask me what them blisters were and told me they are called fracture blisters. I thought to myself that’s it now no infection in it nice new plaster i can see light at the end of the tunnel after these mad few weeks but the next day Tuesday i had a blood test at 1pm that the pharmacist had requested for my medication review and by 7pm a DR is phoning me telling me to go straight to A&E as my magnesium level is dangerously low and is below 0.2 so the panic began i no it’s bad but i was absolutely exhausted and went early the next morning. I had to stay in a few days as i had a 6 hour infusion of magnesium and when they done my bloods next day it was 0.2 so had to have another 6 hour infusion and the next days blood test was 0.9 so they sent me home. The next day was the weekend and i started feeling nauseous, dizziness and loss of balance and actually being sick and thought oh no! On the Monday i phoned the GP’s and they sent a clinician round to see me and she done loads of checks I did tell her that 5 years ago I had similar symptoms and was diagnosed with BPPV but not had it since and why now with everything else going on. So she said she is going to get a nurse to come round and take my bloods just incase i have had too much magnesium. But the results came back that evening that my magnesium had dropped to 0.6 and my sodium was low so a GP phoned me and said he is sending magnesium tablets to my pharmacy and some anti nausea tablets and to introduce salt into my diet. He said the nausea dizziness etc that he couldn’t say what caused it as I have too many things going on. It ended up also had low calcium and low potassium as well as the low magnesium and sodium probably from being sick for a month. Starting ritixmab on 1st April and hopefully no reactions this time. Can’t wait really as my CRP is through the roof and my pain is unbearable. X

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julie1908
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9 Replies
Spanelmad profile image
Spanelmad

Hopefully your feeling much better and can enjoy the better weather

julie1908 profile image
julie1908 in reply toSpanelmad

Thank you i am in a better place now apart from RA pain at a high due to no medication for it, this weather certainly cheers you up x

GrannieD profile image
GrannieD

Good heavens that sounds really scary. I hope you are soon on the road to recovery.

julie1908 profile image
julie1908 in reply toGrannieD

Thank you i am certainly in a better place now x

Leics profile image
Leics

oh my goodness what an absolutely awful time you’ve been through. I will hope that things start to improve for you and you can look back on that truly terrible experience. I wish you well with your recovery and hope everything goes well from now on. The only way is up hey. Best wishes to you.

julie1908 profile image
julie1908 in reply toLeics

Thank you so much for your lovely message x

Petrina_gmfc profile image
Petrina_gmfc

Hi i am really sorry to hear what you have been going through I am on morphine tablets and I have also have morphine liquid to take at night if the pain is bad but at first before I was on them I was taken tramadol for my knees but is did not help the pain in my stomach as I now have cirrhosis of the liver through medication it was my stomach doctor told me to ask for my GP for strong pain killers I went to see my GP he told me to up my tramadol I said it is not working I told him that my stomach doctor told me to get something stronger and then he gave me them .

Petrina_gmfc profile image
Petrina_gmfc

Hi sorry to hear that you are going through I am on morphine tablets and liquid at night when I need it as i have cirrhosis of the liver through medication that i was on .before I was on this I was talking tramadol for my knees and after I had my knee replacement and it did not work and I am in a lot of pain i went to see a stomach doctor that he told me I have cirrhosis of the liver and I was still on tramadol but not helping so he said go and see your GP for strong pain killers I went to see my GP he told me to up my tramadol but it did not work so my stomach doctor said to me to tell your GP that I send you need strong pain killers then he gave me morphine tablets and my stomach doctor also said that I have to get something else the pain at night I did get something .

julie1908 profile image
julie1908

I really feel for you as i have been in so much pain now for some time and wish i knew what a good nights sleep was. My GP gave me codeine tablets but they are not touching it .. still roll on 1st April as i have my first infusion then and that has a steroid in it so i am praying that it will work x

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