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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Just back from steriod injection.
Methtrix not working its magic, now I have leaflets and presciption for leflunomide.
I'm on sulfz, hydro, methtrix, co-codomal, dicflen, thyroxine as well !!!
Any experiences good or bad please.
Also, I have a NRAS booklet for biologics (next process).
The nurse showed me xrays of hands, feet, and knee.......couldn't possibly belong to me. Its a shock to see my joints looking "worn and old".
Good news the nurse told me a date for orthp surgeon - mid november....that was quick.
Happy days!!!
Jane
Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Jane, I tried leflunomide for a while. Initially it brought my esr rate down quite well, but by the next blood test it had gone right up again!!
It was shortly before going onto biologics.
Hope it works better for you, I'm sure others will have had more success with it.
Zena xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jane Good to hear you have your date with the surgeon ! honestly the things that make us happy  I had a go with Leflunomide but it really didn t help at all, I took it with hydroxy. Of course many people do well on it, as we are all different, I didn t suffer from any side effects with it and as you say, if it doesn t work, you can then go forward with the biologics which I did eventually. Take care, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jane
Good news about the appointment with the Surgeon.
Unfortunately Leflumonide did not work for me. I had to stop it because of terrible headaches. However, I would strongly advise that you try everything that they throw at you. There are many medications available but they only work for certain people and this could be the one for you.
I have tried and failed so many medications I have lost count including three biologics. I really was ready to throw in the towel and put up with the pain and deterioration. I gave one last chance to a new anti-tnf called "Simponi" and it has worked and I am still in shock that something is finally working and I am so pleased that I persevered.
Let us know how you get on.
Jackie
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Rank: Advanced Member  Groups: Registered
Joined: 12/13/2010 Posts: 118 Location: Shrivenham, Oxfordshire
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Leflunomide is the DMARD that worked best for me. I couldn't tolerate MXT but have had no side effects from leflunomide. It brought my CRP down loads. Unfortunately it didn't quite work well enough so I have just started on the biological drug Cimzia. Hopefully it will work for you.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Leflunomide did nothing for my RA, but it played havoc with my liver so I had to stop taking it. Everyone is different though, so it may work well for you. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 9/30/2010 Posts: 55 Location: St. George, Bristol
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I have just started leflunomide. Mtx plaved havoc with my liver and Gold made me sick. No side effects as yet and still taking sulfasalazine. I havent really seen any improvement but its still early days. I am having elbows and shoulder joint injected every 6 weeks which is great at the time. Will let you know if I have probs with leflunomide Rosie x Rosie
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hello Rosie and everyone, Its nearly two weeks, I'm plodding along.......be lovely when I feel things start to work. I've got ankle pain.....I called rheumy last week for advice but not to see anyone. A lady called me back to say my usual nurse was off for the day (my angel, who understands and listens) so I tried to pick this nurses brains.......she wasn't listening so I gave up! All I wanted to say was, my ankle pain on the same side as my bone on bone knee has started to hurt when walking. Does rheumy think poss ra or because of the way I'm walking/compensating with my knee!! The nurse that refused to listen said you only had a steriod injection the week before, are you complaining the injection has failed!! I said no, not at all just wanted quick advice or noting on my records that I called with ankle pain!!! I said I look forward my visit to rheumy next month!!!!!!!!! The receptionist at the doctors did not understand crp/markers when I rung last week, so bless him I have a print out (I don't understand either) but along with this months blood results (in a few weeks) I can take along to rheumy to show them and they can explain the read out to me, so I will know for the future. And mr orth surgeon will know next month about my workings!! So, frustrating with rheumy.......glad to see a truly lovely nurse that I have built a good rapport with the past few months (other lady retired) and she listened and took me seriously to organise xrays, and called me with results which I'm seeing orthpedic surgeon next month. I'm impressed that the doctors kindly did a print out.....all blood tests say high and not normal range...... If the blood tests are not good in a few weeks, the rheumy is looking into bio injections. Got a nras bio booklet to refer to. Meanwhile keep taking the pills!!! Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Jane - you are being really brave, you've got such a lot on your plate, I really feel for you - you have such a strong personality and I love reading your posts, I do hope you get some relief soon. All the best - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 big cuddles Sylvia Thank you, I try my best to let things go that don't need fixing and just deal with things that mean something! I feel sad reading posts from people that are new to ra......our roles are to nuture, cuddle and let people know its not the end with ra (wished I had a magic wand for us all to be better)! I have a long forum to type re work, just wait for my cauliflower and broc cheddar cheese bake to finish cooking in the oven, Don't forget - more gadgets & photos please! Jane Xxx
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 . Can anyone help? Nras helpline is closed for help (4.30pm) Surgery called, dr won't prescribe leflunomide.....have hospital letter saying they can! I've left msg for rheumy to call me......the surgery said to tell the hospital RED !!!! Does this mean: money/financial reasons? I'm in a bad way?? Post asap any ideas? Thanks Jane Xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jane
I am sorry I have never heard of a GP telling you to say "Red" to the Rheumatology Department. I don't think it will be money. I personally think it may be your blood test results. They could be talking about your red cell count but that is only a guess.
Can you ring the GP surgery in the morning and ask them to tell you what is going on and say you are really worried? It is silly they have not given you any further information. Don't take no for an answer and insist that someone gives you more information.
Hope you can get this sorted.
Jackie
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Jackie I had a callback from rheumy nurse, she thinks it could be a flag/indicator on the surgery system regarding the drug was an unlicenced product from some time back. And/or financial cost involved?! The nurse at rheumy will speak to my consulant in a weeks time once she (doctor) has retuned from holiday! Glad a managed to speak with someome in the medical world, just have to wait for the answer! I explained that I had nine tablets left and was glad I chatted to the rheumy nurse because of some side effects I have - small bruises on my leg, awful headaches at the end of the day (hadn't had headaches for a year or so) and can't keep anything in my tummy! Endless dashes/shuffling to the loo. I said I was waiting for my rheumy appointment in a few weeks first to see the results of my blood test, blood pressure, and see if side effects would settle. We struck a deal!!! I have a lefl pill every other day for my tummy to settle down and so I don't run out of pills. I'm happy "red" doesn't mean surgery regular, she's had her years worth of costings spent and come back next year!! Hopefully I eat more than a banana at work!! Monday, I ate nothing at work :-( I update u all with saga! Jane Xxx
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 following last post (wednesday) taking this medication every other day - first day yesterday of not taking it was better, no upset tummy. Today back to (trying to think of the right word) water. I know it is a side effect.....I shall mention to rheumy when they ring me next week regarding funding. I don't want to be reliant on a loo. Also the headaches lifted yesterday. Seems like side effects v ra I think ! Good job I haven't ate at work. Tonite I'm on a day off for the drug...tomorrow will be a bit better! I've read old drug posts regarding peoples experiences, really interesting to look back at others thoughts/questions. 
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Jane - I'm so sorry I missed this thread as I've been a bit distracted with daughter's 13th birthday party. I do hope you're feeling a bit better today - it sounds as if lefl doesn't agree with you. Having an upset tummy is no joke and that really is bad news combined with all the other things on your plate - poor you!! It's good that you got to talk to someone about the RED flag - how unsettling for you, and rather unprofessional of your surgery. It's just as well that you've got a good support network, or you might be feeling totally overwhelmed by all these complications. I find that when it all starts to get too much, I try to step back and look at what's actually important and write it all down - the good stuff first. I ask myself what's been going right - like in your case how is the foot - is it straighter and more comfortable? How are your family? Is your little girl back at school and doing well? Then after I've thought about all the nice things, I feel calmer and better able to deal with the not such good stuff. And I write down the pros and cons of each decision or action, and make a plan of what I need to do. Sometimes I find that I just have to wait and let things pan out, and I do hope that's the case with you. Maybe you just need to give yourself time with the lefl. Anyway I do hope you're keeping well inside yourself - you're such an inspiration and I love your posts - and I hope your list of good stuff is much longer than the list of rough stuff. Many hugs - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Sylvia and everyone! Belated happy birthday to your daughter! I'm around, battling bad tummy/headaches from lefl, knee pain/crunching, not able to straighten my leg BUT let's not do doom and gloom hey! Doctor surgery left message earlier whilst I was picking up my daughter from holiday club to say they can NOW authorise my prescription! Me thinks rheumy done their magic and told them off (hehehe). I still take every other day, until I go to rheumy. Haven't had headaches since I've had ra.....side effect and let's just say the most urgent need to dash/stumble to the loo . My daughter loves school, in a high brain group (not got that from me)!!! She is sad that the teacher doesn't do half term working....she counting down to halloween!! Bought her wig today to go with her witches dress!  she likes going out around the street all blinged up, for trick or treating - but doesn't like sweets - so I take them to work for others to enjoy the sugar rush and e numbers!  Before we had our daugher, we used to sit at home with the light off, candles on tv on so trick or treaters thought no one in! my husband is a hum bug! Being a mum and having a giggle, felt tipping, peppa pig dvd, playing on the wii - my daughter is a little mover on the wii sports games! We have lots of hugs from my daughter is my tonic/happiness  .....so so cruel to have ra at such a happy fantastic time in my life though. Off to rheumy in two weeks, shall ask them if I can come off this lefl - the side effects are not nice! Also appointment with orth surgeon - glad in one way to see him, but a step closer to surgery but time off work! With the lefl side effects headaches for example, I don't have any energy and prone to bright lights to respond posts on here in the evenings....but hopefully lefl isn't forever! I do things to do lists/shopping/what my daughter fancies doing......not pain lists or negitive stuff. Take care Jane Xxx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Jane - hope you and your daughter have a fun halloween. My kids always do the dressing up bit and trick or treating and come back with bag loads of sweets!!! My daughter's actual birthday is the 31st, and she normally has to have a halloween themed birthday party, but this year she decided she didn't want that (she'll be 13, so a proper teenager, with all the attitude that goes with it!!). So in effect we're having double parties this week - I just about survived having 6 friends for sleepover at the weekend, and tomorrow it'll be neighbours kids popping in and out. My girls are now the oldest ones around here and generally escort the littlies around - it's lucky that we live in a nice neighbourhood and nobody seems to mind a constant trail of masked and face painted kids leering in at the windows. My eldest girl is now 18 so hopefully she'll finally decide that she's done enough and will take herself off to the pub and join the ranks of us adults!! We've got a busy half term this week with loads of horsey stuff to do. Today they're off hunting (well it's more of a mass cross county ride, cos they're not allowed to chase foxes anymore!). It's all very exciting - even the horses know and get frisky - they love a good gallop as part of a big group - it's the herd instinct I suppose!! Anyway, the riders all gather at our local yard - about 50 expected today - and then the huntsmen arrive with the hounds. All the riders have to wear smart riding jackets and get dressed up properly as it's a real social event. Us foot-followers hand around food and glasses of port and mulled wine and eventually they all head off to follow a pre-defined route through the local fields. They come back a few hours later, all wet and muddy, and that's when I disappear off home. The kid still have to clean their horses and tack and eventually they'll get home about 7pm totally exhausted but brimming over with stories of who got run off with; and what happened when one of the horses mis-behaved; and how often they got lost or how many times the huntsmen told them off for overtaking the leader!!!!! So 'd better get up and start making 3 loaves of sandwiches - my contribution to all the fun! Have a lovely day - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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