passionflower

[Passionflower]

I’m now 70 and have had rheumatoid arthritis since I was a teenager this is in my family I went into remission at 15 married in my 20 ‘s had two children it came back when I hit the menopause and I’ve been on lots of medication and dmard the last being benipali injections that was very good until I contracted sepsis and was very ill in hospital thankfully the microbiologist found a suitable antibiotics that got me better I’m still on steroids I’m considering Jake inhibitors but feel sceptical because of sepsis returning seeing consultant in February

[Hidden]

I am so sorry to hear you had. sepsis ,but glad you have made a good recovery. Were you taking sulphasalazine before benepali ? and had your neutrophils dropped so that you you were neutropenic or borderline neutropenic after taking benepali ? Did you have an infection before sepsis struck? I have had RA for over 40 years, and I took sulphasalazine for years before being prescribed benepali .Since then my neutrophils droped and I have mild neutropenia. I fear sepsis but me consultant says not to worry. I understand your fear.I read that jood ac inhibitors are not given to those over70 as they have not been trialed on the older age group. I may be wrong. Good luck.

[Hidden in reply to Hidden]

Sorry about typo error. I had typed JAC inhibitors. Auto correct, for some reason changed it to jood ac !!!!!

[Passionflower in reply to Hidden]

I like you was on sulphasalazine for years and it stopped working went on to benepali for 15 months I had no symptoms of infection just became ill very quickly

[Hidden in reply to Passionflower]

I read a research article that show that if you have been on sulphasalazine for a long time , and then take benepali ,you are more prone to a low neutrophil count which makes you at a greater risk of sepsis. I also assume, you , like me, weigh less than 69 kg (9 stone six) I do think those of us who have been on sulphasalazine followed by benepali, should have regular blood tests every 2 months, or be given lower or less freqent doses of this medication. It will be interesting to see if others here have similar concerns or experiences. I share your fear.

[stbernhard]

Hello Passionflower, wow what a rollercoaster. It seems that RA is your lifelong companion, but you dealt with it admirably. I'm glad to read that you have made a good recovery from the sepsis.I hope you'll find a drug to get you back into remission. Merry Christmas

[Passionflower]

many thanks for your good wishes, with rheumatoid I’ve always tried to keep strong in my mind and not let it beat me because it s then won and that’s not an option for me wishing you a very happy Christmas

[sylvi]

I had sepsis two and half years ago and i was very ill, so i know how ill you have been. I too was worried it would come back but it hasn't so you can rest easy darling. I hope your on the mend now darling. Love your name it sounds exotic. xxxxx

[Passionflower in reply to sylvi]

Thank you Sylvi for your kind wishes, yes sepsis was the most scary thing I’ve ever experienced and nearly never made it I’m grateful for everyday now. You have also been through so much and are a fighter bless you. I chose the name passionflower because of the great love of flowers especially roses I have, I started gardening with my grandmother when I was little she was my inspiration and so very talented. I’ve seen your posts and see you too love flowers and your allotment. Hope you soon start to improve and wish you and your family a very happy Christmas and new year xx

[Bella59]

Hi,I am also seventy and have Rheumatoid Arthritis.I have been on many meds over the last fifteen years.Over four years ago on my birthday i became ill with severe Pneumonia and Sepsis.So i know it is a horrible illness.I am on a jak inhibator named Filgotinib for over a year now.To date this is so far the best med i have tried.I have previously been on two other Jaks Tofacitinib and Barcitinib but they never helped me.Wishing you well and hope you find a med that suits.Merry Christmas.

[Passionflower]

Hi, thank you for telling about the JAK inhibitor and so pleased you have at last found a medication that is working many thanks for your good wishes and merry Christmas &new year