I've been on leflunomide for over eight months. During that time I've had flares, and my hips are now damaged. I really don't think the leflunomide is helping! Not only that, but it gives me nausea and a banging headache.
I was off drug for two weeks, and headaches went. Rheumy insisted I go back on the stuff `as was running out of option.`
Tried it,again and feel awful, plus pain in hips and partial achilles tear. I've got to the stage where I feel there is no point in complaining. It either falls on deaf ears, or one is told it's fibromyalgia. Rubbish...fibro does not cause joint damage!
I note from appointment in August that I'm due to see a prof and not usual rheumatologist. I don't know whether it's worth contacting rheumatologist before August to let them know I just can't stomach the leflunomide. I think I'm just getting a name for myself as a difficult patient. I don't want to make things worse for myself.
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Nettac
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I had an awful trial of leflunomide and would advise you to definitely contact your Rheumatology team if it is disagreeing with you, especially as you don't feel it's helping.
You are not a difficult patient, Nettac, you're just taking control of your own illness and giving them information about what helps/ what doesn't. A perfect patient I would think, for more enlightened doctors x
You're not difficult. You're not tolerating a treatment, that's not difficult, that's just reality and doctors should know that.
I'd let them know because then when you go to your appt, they know the rough outline of the plan.
Just for the short term, have you tried any natural anti sickness remedies such as; ginger capsules?
As above let your rheumy team know - 8 months is long enough to know whether a drug will suit you or not. Not a difficult patient just your body does not like the drugs its not something you have any control over (mine hates DMARD's but it will show up in my bloods - will just about take 200mg hydroxy but that's it but loves the right biologic). Farm
I have been extremely lucky with my rheumatologist and he took me off it as soon as I said I had lost a lot of weight.....he reckons if something makes you feel that bad it's not doing you any good.
I came off the Lfl, & very soon got my appetite back.
To tide me over he gave me a Depomedrone injection & recommended I go onto Biologics as I had tried every Dmard he felt I could take.
You have to stand your ground with some Rheumies...they seem to have a list of pills they think work, & if you upset their list they get uppity!
Good Luck...hope the Professor gets to grips with your meds!
No one size fits all is the problem and 8 months is a fair while. I love LEF it has no side effects and is very good but MTX the hair fell out in handfulls. I'm limited too as also take Riveroxaban for clotting but my RA nurse and consultant have listened and I'm very happy with them. It seems to me to be a lottery and that is a real shame as its so unfair. I hope you get some help asap. x
I've had a pretty rocky time with docs. I can't really understand why, after only trying two dmards, I am running out of options? Methotrexate is out, but there are other options surely?
I wonder if I shoukd write to professor I'm due to see in August? What do you think?
I'm not a Rheumy of course, but it does seems that they are some quite standard drug pathways. So it sounds as if you have quite active/aggressive disease so by trying MTX & Lef your rheumy is trying to find the best anchor drug for you as these are seen to be the most effective. Hydroxy and Sulpha can help boost these anchor drugs (as they do for me) but on their own may not be enough to exert enough control.
So, if you can't tolerate MTX or Lef then options are fewer as he/she may not think worth trying the other two on their own (but a question to ask). There are the more old fashioned DMARDs like Gold and Azothioprine, but not used much now I think.
And then it's on to biologics, so your particular health trust and DAS score starts to get important. Again another question to ask, as if the rheumy is saying "running out of options" then sounds like these are being ruled out as there are loads of them. So why??? Could be things like other medical conditions, but hope it's not another dreadful case like we've heard on here recently about people being denied access because they just miss the threshold by a millimetre.
Why not draft a letter and then leave it a day or two, and re-read to see if you think it conveys what you want? Busy professors are n't going to read more than a couple of paragraphs, so it could be hard to make it have an impact.
You're not a difficult patient-s/he may be a poor doctor?
To my ear, you're a woman who has given things a shot and have come to a considered decision that they're not working for you? Keep pushing this and don't be palmed off with less than appropriate treatment .
Nettac, seeing the prof may be the best thing that ever happened to your PsA. Make a list. Be clear. Question the FM suggestion. Dont second guess yourself Don't be afraid of being difficult.
It's your body that will be damaged unless you speak up for yourself.
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PIP appointment with Atos, is there any point in going?
Could this point to fibro?
need peeps help those who suffer point the way
oh only got 12 points
Doctor's at 2.10 this afternoon. But quite honestly, I don't wanna go. I don't see the point.
