I have recently been diagnosed with G.C.A / Polymyalgia / Pulmonary Embolism/ Osteoarthritis
Basically I would like more information on what is considered a relapse when trying to reduce prednisolone
Also is anyone taking Leflunomide 10mgs daily and have you had any side effects
Hi. I've been on 20mg for more than a year and no problems. I had 3 flares at 22.5mg pred and couldn't reduce but with lef. I've managed to drop to 4.5mg. I've now reduced to 10mg as my pred is low. I had no side effects I believe but that's me. Sorry I can't guarantee you won't. Good luck.
I have been taking 10mg leflunomide daily since I was diagnosed with aortitis several years ago. I’ve had no obvious side effects and was able to come off prednisolone 6 years after PMR diagnosis.
A patient information should be found inside your box of leflunomide that lists possible side effects. Some people may have several side effects and others none and I believe I am correct in saying that if only one patient experiences a particular side effect it has to be listed.
I will fully read the information sheet when I get the medication ,thank you for your help
If you put up another post with a much simpler title - Leflunomide for PMR for example, you should get up to 10 Related Posts listed for you. Lord know how HU managed to offer shingles vaccine and not leflunomide!
A relapse is simply a return of the symptoms you had before taking pred and is most likely to happen if you reduce your pred dose too far or too fast. Very occasionally there may be additional symptoms - PMR in particular can change over time. And it may happen due to an increase in disease activity even though you are on the same dose and haven't decreased. You should have the same level of symptom relief at the end of any taper step as you did at the start and if you don't, you need to go back to the previous dose, wait a bit until it settles and then try a smaller and slower drop.
I just tried this to see what I got: at the top right is a box saying Search HealthUnlocked. I typed in "Leflunomide PMR" and limited the search to PMRGCAuk - that option is on the right on a computer, sure where it might be on a phone screen.
It brought up 211 posts (including yours) all of which are relevant to your question and should keep you occupied most of the day!! This is a post I put up about another member's experience with all the commonly used DMARDs, leflunomide being the best but not without its problems:
when I have reduced my dose I have been getting some symptoms back but not as sever as at the beginning so is this glassed as a relapse
Might be, or could be steroid withdrawal- have a look at this-
The word relapse seems to mean different things to different people. Doctors often call it a relapse when a patient gets to too low a dose and symptoms reappear. But PMR doesn't go away because of the pred, the pred just manages the inflammation. The actual disease is still there, going on in the background. To me, a relapse is when you have been able to get off pred for more than 6 months because the disease has burned out and you are in remission but then the autoimmune activity start up again.
If you are calling overshooting the dose you need a relapse - it is possibly a warning you are getting close to the dose you need or that you changed the dose by too large a step and your body is rebelling - as DL has explained.
I tried Leflunomide for a year. I persisted because I am having increasing side effects from Prednisolone and have had PMR for at least six years. I must admit I felt bad the whole time, nauseous and weak. I developed tendonitis, which is listed on the pamphlet but my rheumatologist dismissed. So finally I stopped and have generally felt better although still struggling to taper. I hope it works for you.
I am on 20mg Leflunomide and have a very occasional urgent need for the loo with diarrhoea. Apart from that I am not aware of side effects.
I started on 10mg early February this year and after 4 weeks increased to 20mg LEF. I confess my biggest worry was the advice to reduce or even stop alcohol but I am carefully measuring every gin (I've stopped having wine) and recording every (occasional) unit I drink (I have OCD tendencies!). I'm finding it less of a problem than I envisaged despite having moved my mother into a care home a few weeks ago against her wishes!
To safe you looking it up, I'd had PMR since 2020 and had reduced to single figures prednisolone by last autumn. Then I got GCA diagnosed in December, and after a few days of 60mg pred, reduced to 40mg. My consultant encouraged (pushed?) me to take LEF as a DMARD and I am now down to 10mg pred already. Whether that is due to the LEF, who knows, but I'm feeling good most of the time.
Admittedly, I currently feel like I'm getting a cold and have a sore throat so I'm a little worried I'm now more vulnerable to infections (LEF side effect) and I know my white cell count has gone down to the lower end of OK at the last count. We shall see.
Have been on 20 mg leflunomide for over a year. No side effects at all. Had very severe side effects with Actemra, and had to switch
I was on leflunomide for two years and suffered with diarrhoea for most of that time. This was an inconvenience but was manageable. I eventually stopped taking it because it caused peripheral neuropathy in both feet.
When did you start getting peripheral neuropathy symptoms?
Ok for the first year and gradually worsened in the second year
Oh dear and thanks. Just as I was thinking all ok, I’ll have another worry.
It doesn't affect everyone, I was ok for the first year and it did allow me to reduce my pred to below 10mg
I had a cataract op on Mon and still feel seasick with very different sight in my eyes. Has anyone else had this problem? Did it settle?
Recurrent thrush under bust and in groin.
Vitamin D and PMR
Update on head pain.
Eyes don't feel right
