Just had lovely chat with my Consultant. MTX has stopped working for me, after being on it for 7 months. Shocked to re-read my initial letter from the Consultant in October identifying 8 joints in hands painful and 3 swollen, now 15 sore and some swollen. Don't even get me started on my feet! So starting Leflunomide and a quick dose of steroids. Relieved to be moving forward.
I'm sure lots of you have been on it! Anyone done the swop recently?
Good news it’s great when you are listened too such a relief.I’m on entanercept started in January and have been on methotrexate 20mg for 4years . Have been suffering with fatigue most of diagnosis but slowly since September getting worse. March was so bad 5 out of 7 days sleeping on and off with the worst when I slept 36hrs straight. Entanercept knocks me out for 48hours so basically sleeping all the time. Had a 5 week break from methotrexate felt so much better but starting to get aches and pains and some stiffness. Restarted methotrexate at 7.5mg on Monday have slept on and off since with desperate brain fog. I will keep trying and monitor it. Feet sore no swelling or sore joints but entire body like a plank of wood. Think I may be joining your club and coming off methotrexate 🥺keep us informed on how your doing I will be very interested.
Yes, not only is MTX not helping joints, the last 5 weeks have made me like an extra in Shaun of the dead (sounds like you could be too). Consultant calling in 3 weeks to check, if still not right I think it's a face to face to consider a biologic as I'm already taking Hydroxcholoquine as a top up. Oh happy days.
I have both together and have done for many years.
I'm pleased they have worked well for you. I'll be topping up the Leflenomide with Hydroxchlorquine (already taking). Just so hoping my tummy copes as it is really my weak spot - I have trouble taken Naproxen, steroids, had to reduce the hydro even when taking Omeprazole, I end up with terribly invasive upper abdominal pains. Here's fingers crossed.
I hope you get sorted soon. I am on MTX and dread ever having to change as my stomach is so ultra sensitive that I'm sure I would have problems.
Thank you. I'm with you on the tummy. Luckily the consultant instructed me not to persevere if I had any stomach issues but to stop immediately and contact them. So I feel reassurred that I don't have to be stoic. It has given me peace of mind to give it all a try. I start on Tuesday after bloods and blood pressure test. Seemingly, you have to ensure that you don't have high blood pressure as Leflunamide can elevate it! Who knew!!
Yes, I spoke to the Rheumy nurse a few weeks ago when my MTX was increased and I was having a few problems. She mentioned the Leflunamide but said I wouldn't be able to have it yet as my BP was still high. If I have to change, I hope whatever I have doesn't make my hair fall out (MTX does) or give me stomach problems or affect my sinuses and chest - I have COPD - not a lot to ask!! 🙁
I believe that Luf.. is still possible with high blood pressure, as long as, the blood pressure is under control. It's all a complex balancing act with other issues we are facing. I have a dormant absess on a molar. I've been told that the change in meds might re-kindle it but it's a risk I'm taking as my RA is certainly out of control. Heads you win etc.
P.S. I'm sure my hair is thinner since taking MTX too.
Let's hope the change to Leflunamide stops your hair from getting thinner. Dormant abscess on a molar sounds dodgy, I hope it doesn't kick off then. Take care. 🙏 xx
In my experience Leflunomide made hair loss significantly worse. I added it to methotrexate which was already causing hair loss. Since stopping Leflunomide I’m growing new baby hairs.
That's good - I'm jealous. 😁
Hi Rosie, I am so pleased that you have had a good chat with your consultant. I really am hoping that the change of medication really works for you. What a time of it you have been having for a while. x
Thank you. Must admit that have all body parts I can are crossed. Know it's not ideal to go on steroids at this time but needs must when the devil rides. Difficulty is that having a rough time becomes the norm, so determined to dig myself out of it. Hope your doing a little better yourself. x
I admire the determination and strength you continue to show despite this awful time you are having. I’m doing much better myself at the moment. x
Thank you. I think we are equally on a new and unexpected journey with our RA. x
No I've been on a long journey and honestly my life is pretty normal. Its because of being grounded I'm not out walking but do have a home gym in the shed. I do 20 mins now of cross training and dumbbells for same time 3 times a week as vital to stay fit and I only have 24% kidney function. Life is not over with RA and the vast majority to achieve a good life just have to take the meds and see what happens. It takes at least 12 weeks for the LEF to really work and I had no issues with it after the initial side effects wore off. be warned though it tastes vile so get the drink ready when taking it. In Oct 2018 I did a few rambles over 10 miles and am working towards doing that again but AKI took some time to get over and normal function will never return. Still it is what it is and life does go on. So don't be too worried the Summer is coming and you might feel a whole lot better very soon.
Good for you. Must admit we we're planning to get a cross trainer just as lockdown started but they had all sold out. Now wondering if our all hayloft could take the weight!!
We bought one years ago from Decathlon in Essex, still going strong and it measures heart rate, calories used and slow down rate. I do it with a Laptop watching a tv programme at the moment its Last Kingdom on Netflix. I trained through episodes 1 to 3 of series 3. I find music is a bit boring. So go on get one, they are fun and improve lung capacity too. My Nephrologist said when the crisis began that having good lungs was going to be important and that was before we all knew about the Pneumonia risk. Best of luck and ours wasn't expensive but is very sturdy.
May I ask which one you got. The reviews are like walking through treacle - hold on that sounds like my daily bread at the moment!
I agree keeping fit extremely important and so easy to let go of when RA is doing it's best to dissuade us from exerting ourselves.
No idea off top of my head as its over 10 years old, so tomorrow will have a look at it. I know its pretty sturdy and heavy as it doesn't wobble at all when its used. It has virable pressure I use 2 my husband 3 and it has to be told weight and height then it calculates how many calories used too. It times us and you then use your own setting which it remembers as a programme. It trims measures blood pressure and cooling down pressure. Its grey and black and fun.
Sounds perfect. Will get OH to check out those beams in the hayloft!!
Four years ago and LEF worked so well. I am no longer able to take it but thats not down to not wanting too but a medical issue. It put my RA not remission for 4 years. Stick with it I had side effects then bang they stopped and the RA had well, just gone !.
May I ask if you are meant to continue with folic acid when taking Lef... So used to taking it with MTX I forgot to ask the Consultant and GP unsure.
No I did'nt take Folic Acid with LEF. I took at night with a glass of water. No hair loss but the pain got worse after about 12-14 days. It hurt for about a week, then the cloud lifted and the pain went from everywhere. It was like a miracle just gone!
Thank you for your very positive respone. I'm so pleased it was so effective for you. Here's hoping. I'm hoping that you are now on meds that are equally effective.
Good luck with Lef. I'll be interested to see how you get on with it as I'm thinking of coming off MTX and changing to Lef.
Do you know when? Will keep you posted. My consultant is phoning in about 3 wks to check up on me. If this doesn't work then it's probably going to have to be a biologic!!
I've got a review on 3 August so will be discussing it then... really hope it works for you!
Good luck 👍🏻
I’ m on both lef and metho. The hospital took me off hydroxychloroquine when I started lef. I have found my mood is better and I’m not so tired.Was worried re side effects but ok.
Good luck.
So pleased for you -it's good when it all works. I think I am remaining on hydrox as the meth isn't working at all- some joints so swollen when I woke up I could hardly close my hand and am now wearing a wolly glove. Taken first steroids - so hoping for a happier day. Thank you for replying it's great to hear that you are less tired - certainly something I'm aiming for.
Hi, I am at my wit's end with MTX now, feeling absolutely terrible, feel I have an allergy to folic acid, such bad indigestion which caused a slight panic attack this morning. Such a nightmare as I am in Madrid and have to speak to my specialist through his secretary. All so unprofessional and worrying. I want to go back on Leflunomide as I think I tolerated it better. Can I just stop MTX and start Leflunomide (still have some)? Has anyone been told to do this?
I truely empathise with you but I honestly couldn't advise you. It is something you will need to discuss with the specialist, apart from the fact that you will need to start fresh monitoring and have your blood pressure checked before starting. All the changes I have made have been on the advice of the consultant. Can you not arrange a phone call / email / facetime with the specialist. Are there any RA specialist nurses you can speak to? Let us know how you get on. Try not to worry too much, all things get resolved - sometimes it just takes longer and more effort than usual.
Thank you for your reply. No, it's difficult here. When I mentioned Coronavirus to my specialist at my last appointment in February, he told me to take the same precautions as I would for flu. Obviously I didn't take his advice and have been inside since March 14th, only venturing out for a walk early in the morning since we've been allowed to do so here. So, when I read on this website about you receiving letters to advise about shielding, I feel really neglected. When I contact my specialist, his secretary relays his message by email. My next appointment is July 7th and even by then I will be very wary of going anywhere near a hospital here in Madrid!
Not done it recently but leflunomide was the only one I didn't have side effects with. Was on it for 7 years with only 3 flares in all that time. I'm still on it but take biologics too now. Good luck. It was great for me.
Oh. Didn't know you could take with a biologic - interesting. So pleased it worked so well for you for so long. Fingers crossed (well metaphorically!) that I do so well. Thank you.
I switched from MTX to Leflunomide a long time ago for similar reasons. I was on it for a long time and it worked well, but when I started getting more frequent skin infections I was taken off it and told this was “one of the drawbacks.” Then followed a few years of trying to “beef up” the MTX by adding HCQ, low dose prednisolone etc. At the time, biologics were restricted to a very small range and for the very worst cases (who weren’t considered too old).
In the end, upping the dose of MTX to 20mg and moving to sub-cut finally calmed it down and I entered a phase of blissful calm where I could almost forget I had RA. That didn’t last, but is another story!
Good that it gave you some relief, albeit temporary. I do so hope you are finding some peace from your RA at present.
I started it in addition to methotrexate injection, for the first month or two I had crippling fatigue on L. Eventually it lifted and I felt amazing. No pain anywhere. I would say I was practically in remission. After 4 months I stopped it however as I was losing too much hair and had chronic diarrhea which had me wondering if I was developing chrones. Bloating, terrible gas, incredible abdominal discomfort. Dang. So wish I could have stayed on it as it worked so well. The tummy issues resolved a bit but the hair loss did not. Now I am on Methotrexate and Olumiant (u guys call it baricitinib). Not sure how that will go...early days. Best wishes!
Are you in the States? Funnily enough, since starting Hydroxychloroquine I feel that I could solve the world's global warming problems as I have enough wind to keep several turbines going- sorry but true. I'm sure I put New Zealand sheep to shame. I'm hanging on to the hair but am reassurred by the Consultant that I do not have to be stoic and put up with side effects - especially tummy related (not sure wind counts), so it's down the hatch and off we go - another RA adventure. I do so hope Olumiant works well for you. All the best.
Oh I do so envy you being on Baricitinib 🙁
I had a crippling flair that lasted for about 10 months in 2018 and had the script in my hand almost, but then decided to check with the specialist nurse the slight worry over a small infection on my ankle.
I’ve not managed to scale anywhere near those heights again.
Ah I’m sorry. I really hope you find a solution. So far so good with the B. I notice my hip pain has already reduced (3 weeks on B so far) and my energy seems to be improving a wee bit. My frozen shoulder feels slightly better. Early days yet. Great part is this drug seems to have the fewest side effects of all that I have tried. I don’t think 4 mg B. Is approved in Canada due to embolism risks. I am on 2 mg. I could be wrong but for some reason have that in my head.
No I’m Canadian from Vancouver BC. Where are you? I feel so grateful to have found this site which is a rich resource. I could find nothing like it in Canada or the States. Nothing beats peer experience.
Oh us and our tummies! Lol. In retrospect I kind of wish I had tried longer with Leflunomide. After the initial adjustment I felt absolutely amazing but those two side effects lingered. However perhaps the combo of methotrexate and Lef were just too taxing on my hair and tummy. Perhaps just taking Leflunomide on it’s own will do the trick. All best wishes to you!
Yes. It's a great source of both information and comfort and has been invaluable as I journey through my first year since diagnosis. It's also wonderful that we can share experiences with others from around the world. I am from a small hamlet in the South West of the UK, quiet and relatively rural. I will try to persevere but the Consultant was adamant that I should not continue if I experienced severe abdominal pain. Thank goodness - tummy aches are my pet hate. Best wishes.
I was on both for over a year--then there was a huge recall on Leflunomide due to cancer concerns and plastic contamination so he took me off both.
Oh Blimey! Was it a bad batch? I assume that the cancer scares have been overcome - I know that there were some initial concerns over biologics and cancer but that the latest research appears to indicate that there is no more risk than for the general population. What are you on now?
Leflunomide
Anyone on Leflunomide, Hydroxychloroquine and MTX?
Losing balance and feeling rough with MTX
New treatment leflunomide
Leflunomide.. ?
