how long between appointments for uncontrolled RA and for medication trials

[smilelines]

I have been on leflunimde for almost 10 months now. I was on 20 mg for 4 months, then she reduced it to 15 mg for 4 months due to stomach issues and now I am back on 20 mg for 4 months. When I see her in January I will have been on the leflunimide for a year. The leflunimide is not working very well and I really feel sore and uncomfortable. It seems like a year is a long time to test a medication to see if if is working. My doctor says we don't want to breeze through the medications but I feel we are getting no where with the leflunimde. I was on methotrexate for only 3 weeks before I ended up in emergency with huge stomach cramps. Maybe that is why we are moving so slow with this. Are we moving slow? It sure seems slow to me because I want to feel better.

[ruth_p]

A year seems like a long time to me, I don’t understand why they reduced it if it’s not working properly. Your quality of life is clearly being affected by the RA . When you go for your appointment you need to be very honest with them and don’t let them fob you off. Good luck

[smilelines in reply to ruth_p]

I was on it for the four months and she reduced it because she said she wanted me to be nice and stable on it before she put me on a second medication. I had been having some stomach problems but they were not bad enough to warrant a decrease IMHO and I stated this. I had swollen joints still so I did not want to drop down in the dose. She insisted. So I was then on 15 mg for four months. During that time I had the covid vaccination and was pretty sick and after that the leflunimide did not seem to be as effective. When I went back after the four months on 15 mg I had more swollen joints than I had perviously so she increased the dose back to 20 mg. She decided not to give me another medication to keep things simple. I don't really understand either.

[helixhelix]

You are sero-negative? And have your blood markers improved? As if MTX has been ruled out then Lef is the next most effective drug, so probably keen not to ditch it too soon. You had mentioned about hydroxy or sulpha being added in. Did that happen? With me when I started on MTX it worked but not completely until other drugs were added.

Don’t know how system works in Canada but if you are not eligible for biologics then choices fewer.

[smilelines in reply to helixhelix]

No, she decided to increase the leflunimide rather than add something else. I am serionegative. I am not sure which markers you suggest might be improving.

[helixhelix in reply to smilelines]

Have you had a blood test recently to look at your inflammatory markers - ESR and CRP - and compare then with before you started on drugs?

[smilelines in reply to helixhelix]

My CRP skyrocketed right after the covid vaccine. Other than that everything is normal but I think that is expected with serionegative but I am not sure.

[helixhelix in reply to smilelines]

Seronegative people don’t have the rheumatoid factor or the anti-CCP antibodies. But their inflammation markers (CRP and ESR) usually respond pretty normally - high when in flare, and reduced to normal if drugs work.

[medway-lady]

I'm sorry but don't think its a long time as most RA meds take 12/14 weeks to work but if the dose was reduced and your still having issues I'd be asking why carry on ? It is true its's not good to whizz through medication although some are obviously more problematic for some people and cause other issues so then it's a question of asking is it a fleeting side effect or a side effect that is constant and outweighs the benefits of the medication. I'd not rush into changing but the aim is remission and getting back to a normal life as soon as possible. I'd write down how you feel and your symptoms and in January show your Consultant your diary and ask if it's possible to change to something else that may work better. Gently remind them that you've given it a really good go and it may be that you need a Biologic on top of the LEF as sometimes these drugs run in tandem or they may introduce something else. I take Azathyoprine and Benepali but even together although I'm in remission they don't work as well as LEF but sadly I can't take that anymore for medical reasons. I found LEF to be great and worked really well. Have you thought that it might be something else going on ? I'm not suggesting that the LEF is working just that sometimes we get other things like thyroid failure and that can mimic some of the symptoms of RA. Just worth thinking about.

[smilelines]

I also have fibromyalgia, I guess. My family doctor disagrees and says it is just RA. My rheumatologist says I have both RA and fibromyalgia. This complicates everything because all of my symptoms came on at the very same time. I am still learning which is which. My rheumatologist says she will not speak to the fibromyalgia until we get the RA under control. My hand joints are sore and throbbing at night as are my feet so I am pretty sure it is the RA that is keeping me awake at night. Hopefully, she will add something to the leflunimde in January but it seems a long ways away.

[Deeb1764]

Oh yes finding the right med can take time but a year on one and no change................. I could not cope with MTX so after 5months put onto Sulfaszine- coped only 3 weeks with this and changed to Leflumide- coped 10days as BP went thro the roof and put forward to Benepali- coped 8 weeks before my asthma and lungs almost created a riot. So then onto Barcitnib.Sounds great but from stopping to starting each new drug was 13weeks of no drugs. RA out of control adn still trying to keep the Barcitnib going but still not managed a full 13 weeks straight on it due to chest infections.

I personally would say enough is enough I need to move on as I am over not improving and lost faith in this drug.

It is a team decision and you are part of that team.

[smilelines]

Thank you for the inspiration. I think maybe I should call and see if I can get an appointment before the end of January. My worry is she will say when we change the dose we must give it the four months trial period. That seems to be her criteria. I am so grumpy and tired of the self doubt and unfun painful life.

[Deeb1764 in reply to smilelines]

I get they have trials but you have PAIN! Just do a few notes re meeting so armed and dangerous x

[AgedCrone]

Sounds like you have a good doctor….both my rheumatologists over 20 years have given given drugs a good go before either adding or changing my meds.At times I have not been pleased but I am doing OK with no major joint problems & no ongoing side effects.

RA takes time & lot of patience….so hang on in there.

[smilelines]

Thank you. I am thinking I will call and say that I am not doing great so if they have a cancellation then I would like to come in. I have had this since Feb. 2019. If a quick diagnosis and aggressive treatment is the key to remission then I am not on a very good path.