Are there any smokers out there( please don’t judge) that are having their meds changed due to the new warning on these meds
My Rhuematology team ( which are fantastic) are really concerned about this new warning which apparently is very unexpected .
If I’m honest the rinovoq hasn’t worked as well as we had hoped but just wondered if anyone else is are having meds changed and what to
Thanks for reading
I don’t smoke but was told ages ago because I’ve had blood clots even though it’s a risk related to RA that I’ll not be prescribed JAK stuff could it be similar as smoking puts you at higher risk of clots?
I have been told that this is a new warning but it is to do with heart disease and clots
I know my consultant is very concerned about it as it was him who rang me and not 1 of the nurses and I have an appointment with him to discuss other options
Do you mind me asking what medication you are on please
Thankyou for taking the time to reply x
For RA, it’s Benapali, Azathyoprine for clots Riveroxaban so in theory I’d be protected from stroke risk but I understand it is now classed as very risky. I take other stuff but not related to clots or RA. I’ve never smoked but it is very high risk for clots and believe me that is life threatening so perhaps they are concerned about the additional risk.
this is the alert from last year. I had been discussing with rheumy whether I shoukd change, and she then completely changed her mind as I am a (long time) ex-smoker and 65.
fda.gov/drugs/fda-drug-safe....
and here’s Pfizer’s statement
I have been told that this is a new alert on top of last years , I could be wrong but I’m not sure
RA, being overweight, family history and smoking all increase risk of heart disease. High blood pressure also increases risk of this and strokes.
I stopped recently because of high blood pressure, which came straight down 🎉. I was en route to hypertension.
You do what you like, just know the risks. My Rheumatologist had been telling me for years, but because I only smoked 2/3 a day, I thought I was fine.
I really am trying to at least cut down, the worse thing is when I’m inactive I smoke more, until I got RA 3 years ago I was a runner and like a lot of smokers even though you know the risks you ignore them.
Well done you for stopping even if you only smoke a few a day it can be a hard habit to break
My Rheumatologist told me a few months ago when I couldn't take MTX tabs or injections or Leflunomide ( terrible tummy problems with both) that she probably could not give me biologics due to me smoking for so long. Plus heart disease in my family. Although mum lived until 90! But like you when I'm in so much pain and can't do anything else I smoke more. I know I should stop but it it is so hard. I'm miserable again as the sulfasalazine and hydroxychloroquine isn't working and I can hardly walk or use my arms much again. Only predisalone makes it all go away but they are reluctant to give me this now too as we all know it can cause so many other problems with bones. My dad used to get me to light his cigs on the gas hob when I was young so he didn't have to get up! That's how it all started for me. I hate it but I'm an addict. Rang nurse today as my body is in such a state. She's got psoriatic arthritis and until recently was a smoker so she gets what's it's like trying to stop. Just waiting to hear back from her. So lord knows where I'll go from here even if I'd stopped 20 years ago the consultant says the harm is already done. I'm 64.
Thank you for your reply
My consultant has always known I’ve smoked but did let me have the biologics but it is this new warning that has made him look again, I’m also on methotrexate and like you the side effects are terrible . They are talking about giving me some sort of infusion now, not sure what it’s called
You sound in a really bad way . Hope things improve for you soon.Have you had RA a long time? x
Officially diagnosed in Nov 21 but due to COVID it took a long time to see a rheumatologist. So it started in my feet about a year before that. Probably around the same time as you. X
I started in July 2020 , just at the start of covid, I was really lucky because my blood were so high I saw a consultant in a matter of weeks
Funny thing is I had just started on some tablets to help me stop smoking and I became I’ll within 3 weeks, I’m sure it had something to do with it as before then I never had any aches or pains. And I still smoke as I came of them
I quit smoking 7 years ago straight after being told I had lung abnormalties following a routine chest x-ray to see if it was ok for me to start taking methotrexate. Been taking baricitinib for over 3 years. Just hope that taking a low dose of just 2mg daily have helped lower my chance of side effects.
Thanks for the info. It’s interesting as I was about to start Baracitanib in 2020 had the nurse appointment to go through it all & given the leaflets etc. I was then diagnosed with Bronchiectasis on a final CT to monitor lung nodules. There was a quick turnaround & I was told it wasn’t a good choice due to my lung issues from RA so it was changed to Abatacept. They obviously knew the potential lung issues then. I was 65 then & JAK’s are not recommended for over 65’s anyway.
Thanks yes they are so far but I’ve developed a circular rash pretty much all over & biopsy says may be drug induced. I’m having allergy patch tests this week. Had 200 patches put on my back on Monday they took them off yesterday & I go back again tomorrow. No washing all week so can’t wait to get in the bath tomorrow! I think the age thing is recommendations not set in stone as such so I wouldn’t worry. It’s something I read but can’t remember where. Hope with Methotrexate added it helps. Take care x
Abatercept gave me discoid eczema and it’s now been stopped, luckily the rash has gone. It never worked that well either. Back to Benapali hopefully it won’t cause too many problems now the nfection problem has been solved.
Poor you. I’m sorry you have had to stop it. It’s quite interesting though. They are saying mine it’s a type of excema. Mine is also symmetrical in some areas. I’ve been off Abatacept for surgery since February & the rash has vanished but I restated about 6 weeks ago & the rash has just started a bit again. My dermatologist did suggest photo therapy but I don’t really feel I want it or need it currently. I also don’t want to stop Abatacept. I currently don’t have a follow up with either Dermy or Rheumy so will just have to wait I guess. Can you go back onto a Biologic once you have stopped it? I didn’t think you could. Anyway good luck x
Discoid Eczema is a well known side effect of Abatercept and yes I’ve gone back to Benapali because it was stopped not at my request but because it was thought to be causing UTIs but it’s been proved not the case so the consultant requested the funding panel to reinstate and they agreed. So yes you can go back in special circumstances. The rash was awful and patches increasing from one arm it had gone onto legs, shoulder and hands. It was something I could have coped with if it had worked but it didn’t work that well as definitely not as well as Benapali. I found Clinique body wash and cream worked better than the NHS prescribed cream without being greasy. X
Thank you thats really helpful. My dermatologist must know this but has never said. She said the biopsy showed Esinophils which shouldn’t be there suggesting it was drug induced. I’m wondering if I may possibly stand a chance of re starting Rituximab as it was stopped due to me feeling very ill & exhausted. It turned out I had undiagnosed Temporal lobe Epilepsy for at least 4 years prior to starting Rituximab & that was what was making me so unwell. I will see how it goes now the rash has started again & take it from there. Guess I need to do some research myself. The thing is that Abatacept is working really well for me. Humira caused Pustular Psoriasis of my nails ( I don’t have Psoriasis) so it looks like I’m prone to skin conditions. I hope Benepali works better for you & thanks again for your input it’s really helpful xx
Is Benapali the infusion stuff and why did they take you off it originally
There always seems a price to pay for every medication but I really hope this 1 works for you x
No it’s a weekly injection. It worked really well but I had a lot of blood in urine, so thought to be UTI’s and so many lots of antibiotics over a couple of years. I then refused any more and asked to see a Urologist and did. Mr M at the Medway he said yes a silent infection and I’ll talk to Nephrologist with you. My Nephrologist said my CKD would not cause blood in urine but he looked at the biopsy and said they rarely but it does happen hit a blood vessel causing weakness inside the kidney. It’s not dangerous as a single drop of blood can turn a bucket of water pink, but I need a Doppler to confirm. That is because I’ve had ct’s but the function is too low for contrast. All my cystoscopes have been normal and last week I had a special blood test to look for cancer cells. They are just doing this to cover all the bases but are sure I don’t have cancer. I have to photo the blood and drink a lot of water but feel great. It just may be that they will never find out more so I’m not too bothered. I haven’t taken any antibiotics now for over a year but do take Hiprex an antiseptic agent. It must be working. The RA stopped the Benapali because it can cause UTI’s but I still had blood on Abatercept so clearly it wansnt Benapali. So back on the Benapali and will wait and see what happens.
Having reactions to all biologics
Biologics
biologics 
Biologics Nurse
Travelling with biologics.
