No injection!

[Sjhoney]

Hi all, just back from my appt, no injection in my knees offered as rheumatologist sees it as a short term measure. She wants me to take the dmards even tho I’ve had pretty rotten side effects.

I feel more stuck than ever!

She’s offering lefluonimide, has anyone taken this?

Also is anyone not taking dmards and if so how are you dealing with RA?

At the moment I’m on 2mg steroids and naproxen. I also take turmeric capsules, not sure if they help but worth a shot!

Any advice gratefully recieved 😊

[Doughnut61]

I have been off all meds owing to a major op. It’s been 5 weeks without, and just starting to get niggles in hands and feet 🥺 I am waiting on seeing a liver consultant as meds’ are not agreeing with it? So scared, what’s next? Drugs helped my pain and stiffness a lot !! But liver has never liked them 😢 Everyone is different, so good luck and hope your pain free soon 💕

[Sjhoney in reply to Doughnut61]

Thank you. It’s a rock and a hard place really 😟

[medway-lady]

LEF put my RA into remission I'm hoping to go back on it once the kidneys are ok. Its great and be careful with tumeric it can be bad for kidneys. Not all so called health foods are actually without risks. I know as its been talked about but like all alternative ideas they can react with prescibed medications or simply do harm.

[Sjhoney in reply to medway-lady]

Thanks, how long were you on it and did you have any side effects?

I’m going to wait for blood results and take it from there 😊

[medway-lady in reply to Sjhoney]

Four years and side effects for a couple of days the pain got worse! but it took 12/14 weeks to work. It changed my life, until got hit by kidney failure I had no swelling or symptoms or pain. Just normal life with no problems. But make sure you do the regular blood tests as thats how they picked up kidney failure which was not due to LEF but Omeprazole. I stress very, very rare so don't think about it the number of people had this happen is 1 in millions worldwide and I promise you I'd still have taken it. LEF is a serious drug but one which works and I took at night with a glass of water because it tastes vile if stuck. Make sure you give it a chance and don't read the PIL either if your like me - read it and get that effect. Really what have you got to loose ?

[Mmrr]

I've not been on lef, but have been in almost all other DMARDs, the side effects have been a but if a bummer for me, but MTX has also been my saviour. Its worth a try.

[Sjhoney in reply to Mmrr]

I’ve tried them all too, this is the last one 😳

[Mmrr in reply to Sjhoney]

Have biologics been mentioned ?

[Sjhoney in reply to Mmrr]

No not yet. What are they? I’ve heard of them obvs but not sure what they are 🤨

[helixhelix in reply to Sjhoney]

They are a different type of treatment where the drug is made from living cells rather than a vat of chemicals, and contains antibodies. Tend to have fewer side effects, but have increased risks of serious infection.

However they are very expensive and the NHS will only prescribe them to people who fit certain criteria. Basically with active disease that has a DAS core above 5.1 - so raised inflammation markers and a number of tender amd swollen joints.

[helixhelix]

If the main side effect you get from all the drugs you've tried is anxiety have you discussed that with your doctor? As perhaps there's something else that could help alongside the drug to stop it happening again, as odd to have the same effect from very different drugs?

Could be something as simple as not drinking anything caffeinated, or maybe eating other foods that are interacting with the drug to cause you anxiety?

[Cheylann]

I take methotrexate and as only been on for a short while had no results yet. They annoy me so much that they won't help out with a steroid shot for short term pain. I agree u cannot stay on steroids long term but a bit of pain relief when u r really bad is a great relief. I've been refused steroid injections and been left in crippling pain. They make me sick!!

[Sjhoney in reply to Cheylann]

Hi, it’s been a bit of an ongoing saga tbh! Tried all the dmards and none have suited. Rheumatologist has lost patience and given me an ultimatum sonits not great.

Waiting for blood results and take it from there 🤨

[Jules13]

My sister takes lefluonimide combined with 5mg mtx. It really has been her best drug combo. X

[Sjhoney in reply to Jules13]

That’s interesting. It really seems to depend on the individual 🤨

[netball7]

Hi I have been on quite a few Hydrox..Metho..Sulfra..and now been asked to try Leflunomide ...I have also had several steriod joint injections. Metho helped after I got over the sickness but after 16 months stopped working. So went on Sulfra...side effects are not great and as I am not getting any real benefits form it have been asked to try Lefl - I have read up on this and there are mixed results but it has also been a banned drug as caused fatal and severe liver damage as it takes a long time to get out of the system so if there are any issues the buffer medication doesn't work and damage continues, this has put me right off. I have now started to research Bio drugs as I know a few people on them are doing really well but the side effects are not yet all found due to lack of long term use. They are more expensive and you have to hit a certain criteria but if all else fails they have to be given. There are risks with all medication even DMARDS but I guess each person has to make their own choices...I will stay on Sulfra until I have completed more research even though I am still suffering its better than not taking anything. Good luck and I hope you find something that suits and helps your RA