It's been awhile since I have been on this forum. Was diagnosed last September and have since been on 15 mg methotrexate. My doc wanted me to get to 20 mg but I have a very hard time every time I increase the dose, extreme fatigue, nausea, headaches, etc.
I had an appointment and my doctor has suggested adding humira along with methotrexate. I am quite hesitant to try this route as I of course did what I should not have and googled! I guess I am looking for similar experiences because methotrexate is the first DMARD I have tried so I am worried that we are moving too quickly to the biologics. I am not a candidate for sulfa drugs due to an allergy and the doctor feels that my disease activity is active enough that I should skip adding hydroxy. I do have another appointment to discuss but want to hear about others' experience with biologics. Did anyone go straight from mtx to biologics without first trying other DMARDs? I am very worried about potential side effects and am not sure if I should push to first try a lesser route. I can of course do that but I also don't want to cause more harm than good.
When I first posted of my diagnosis on this forum it was so relieving to hear from others and I am hoping to gain some insight as I am still fairly new to all of this. I am in my 30s with a three year old and want to manage as best as possible. When I was first diagnosed I was told my disease was mild so this is all throwing me for a loop! I remember everyone saying it takes time to find a drug combo but I am nervous that I have tried nothing but mtx and now go to biologics.
Thanks everyone!
Written by
rue04
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You are fortunate to have such a pro-active rheumatologist. Biological drugs in the UK are rationed by people needing to reach certain criteria of inflammation before starting them. If despite the maximum dose of methotrexate that you can tolerate, you still reach those criteria, you should definitely consider biological treatment.
You can also look at the treatments pages on the NRAS website for further (reliable) information about specific therapies.
I guess the doc has their reasons for this suggestion. I had Humira and found it really really good . Lots of information on it , if you look at nras.org.uk they have a section on biologics xx
Hope you are happier when you decide and good luck , hope this is the one x
When I was first given mtx it took me three weeks to have the courage to take it. I understand the disease is much worse untreated than treated but I googled and made myself quite nervous. SO much better to hear from people on this thread with helpful insight
I was on mtx and then Humira for about 4 years , no side effects and only good things to say about it , ( apart from it stings if y dont take it out if the fridge 20 mins before you inject lol)
It really helped, indirtunatly the effect wire off gir me after this time .
Of course you worry about the drugs but in reality you manage more easily than you think on them and the consequences of possible joint damage or nor getting around was what swung me xx good luck x keep asking questions , lots of answers .on here
Hi, I was on Methotrexate and Cosentyx for about a year for Psoriasis. I was fine on Cosentyx but wasnt getting the 100% all clear the Consultant wanted I then developed Arthritis so Methotrexate was also added. It helped but not as good as they wanted.
I didnt have any problems apart from a bit of tiredness a week before my next dose of Cosentyx.
Ive recently changed to Humira only and tbh that seems to be working better for me than the combined Cosentyx & Methotrexate. But everyone is different.
I was on MTX for 2 years then it stopped working. Tried hydroxychloroquine but had a allergic reaction after one tablet tried sulfasalazine but had an allergic reaction to that as well. Started a biologic a long side MTX so much better but not quite there yet.
My friends cousin lives in Ireland and her consultant but her on MTX and a biologic straight away as he believed aggressive treatment on diagnosis is the best course she improved within 3 months . 4 years down the line doing brilliantly
I had bad reactions with MTX and the other DMARDS so I was put on a biological drug. It has made such an amazing difference to me and I am not aware of any side effects. I have very little pain or fatigue now so it has enabled me to continue to live independently.
So if your Rheumy is keen to put you on Humira do welcome it and I hope it works well for you and you get relief soon.
Unless the rules have changed you have to have tried at least two....sometimes three....Dmards one of which must be Mtx -before being offered a Biologic drug.
Most people would be very grateful to be offered the chance to be started on Biologics less than a year from diagnosis......it took most of us years......but with Biosimilars the newly diagnosed are now fortunate not to have that wait.
Over many years I have found taking my rheumatologist’s advice has been the way to go......trying to second guess him usually came back to bite me.
Of course can read up on RA drugs...but as we are not trained to know what to look for to treat our own RA...”research” usually just confuses.....Dr Google is no substitute for your own doctor .......so if he recommends trying a Biologic ....I would listen to his advice.
Well said AgedCrone I totally agree, I've been on Biological medication for a number of years after going through what seemed the full list of drugs for rheumatoid arthritis, I believe the cost of Biological medication was primarily the problem that's why we can't go mush sooner onto the good stuff, when Enbrel first became available it cost over £200 each injection that's over £10.000 a year for every patient on Enbrel besides what other medication they were on, like most meds when developed and approved the suppliers in Enbrel's case was Pfizer held a ten year patent on it so could charge what they wanted or as much as they could get , copycat biological Benepali came out when Pfizer's patent ended on Enbrel so most health authorities proceeded to take people off Enbrel and put them on Benepali because Benepali was cheaper, RA is different for nearly all suffers so to compare experiences taking medications is in my opinion very misleading what suits me wont necessarily suit you, but what it does do it gives some weak minded people a preconception that they will get side effects , for instance MTX gets such a bad press on here how many times do you read I'm going on MTX and I'm worried about the side effects, its like the old which-doctor who tells someone they are going to die the person goes back to their mud hut and dies, the which-doctor planted the seed and they believed it, make your own mind up our bodies are different there is no one size fits all, literally thousands and thousands take MTX every week and rely on it to help them fight RA without a problem, the only difference is they have no reason to come on here and promote the fact that MXT works for them, the original point about someone going onto a biological medication after a short time my guess would be they are in a really bad way regarding suffering which doesn't seem to be the case, or more likely the hospital and foundation trust that serves them feel the can afford to prescribe it and take the hit, I haven't bothered to check the latest prices of the biological med's I've mentioned,the last time I looked there wasn't a lot in it. after 30 years of suffering I'm now in remission and had no flare ups or pain for over a year, so doing what I was told and advised hasn't done me any harm, apologies if I come over as being abrupt its just my way, I sympathies with all RA sufferers I know what its like I've gone through the mill hospitals stays operations the lot, but you've got to hang in there if something isn't working for you tell your consultant speak to the experts, but you've got to give it a go or you could be missing out on the one thing that could make you better, god bless everyone.
I agree with you100% PB..... I can’t see the point of going to see a highly qualified rheumatologist and then not taking their advice.lt’s no good taking a drug for a couple of weeks ...then if you feel a bit off .....you stop taking it-then you get upset you can’t get an appointment to see your rheumatologist to get another drug......that just doesn’t help you to get the right treatment.
Like you I am 20+ years diagnosed, doing as I’m told and 90% of the time I’m absolutely fine.
You’re in It for the long haul with RA and there’s nothing you can do about it except get your head around it...listen to your doctors & just hope you find the drug that suits you quickly.
I know that is easy to say & hard to accept.... but I’m afraid it’s the truth.
Thank you for your response! I have had a hard time wrapping my mind around this disease and that it is here to stay. I appreciate the advice and honestly of this group.
I have only been on mtx but cannot try sulfasalazine as I have a sulfa allergy. My doctor believes going for combined therapy with hydroxychloroquine will not be strong enough and is why she is offering me the humira. I was just thrown as my first doctor told me my disease was mild.
Hi I was changed to Humira with MTX last August and must say after couple of months of problems they altered my dose of MTX to 12:5mg and Humira to every 3 weeks I have not had a flare since (touch wood) I get a slight ache occasionally and I am still a bit stiff in the morning for about 3 mins, after flares every 2 weeks I just hope it keeps working, good luck I hope it works for you as not everyone is the same I am a lucky one .
Hi, I was diagnosed with RA last October and my joints were so inflamed that I ended up in hospital as my inflammatory markers were so high. I was put on steroids for 6 weeks and this helped a lot. I am currently on 20mg of methotrexate and hydroxychloroquine but my RA was still active and was still in a lot of pain therefore I received my first adalimumab injection last Tuesday and feel much better already. I am now hoping that I am on the right path and never have to experience that awful pain again. I would take the advice from you consultant/nurse. Good luck x
Thank you for sharing! I was diagnosed around the same time and have just been on mtx. I haven't been on steroids or other DMARDs which is why I wasn't sure if the biologic was the next logical step. I think I need to take everyone's advice and listen to my doctor that know far more than I do about this while process. I am glad you have found something that is giving you relief!
I don't know if this will offer any re-assurance (hope so), but I've been on Methotrexate for 30 years, and Humira for about 11 years. (Unfortunately, due to severe long term disease I also have to take Prednisolone, Cyclosporin and Hydroxychloroquine too, but that's another tale)!
Although I've had effects from the long-term pred and Cyclosporin, with regard to the MTX and Humira, I've been fine. Mainly just the normal nausea with MTX and a runny or stuffy nose with Humira. I haven't even had any of the injection site stinging that some people have, I'm very pleased to say. I'm forever forgetting to take it out of the fridge in advance, for instance!
I'm guessing if your Consultant has advised this they must think it's necessary. For me, the bioloigcs came a couple of decades too late, but honestly, I know it's absolutely a personal choice, but if Humira had been available when I was near the beginning of it all I would have grabbed it with both hands (if I could - haha)! Anything, that could have meant avoiding even a bit of the damage I have now! Believe me, prevention really is better than trying to repair and replace things afterwards!!😳🙄
I wish you all the best and fingers crossed it all works well for you! 😊😊
On diagnosis my rheumatologist wanted to put me on Humira immediately, in his words "the good stuff". Much to his frustration I had to follow the NICE pathway and it was the best part of a year before I had 'failed'on methotrexate and sulfasalazine. I was then able to drop the sulfasalazine and progress to Humira. I have not had a flare since 2005 when I started Humira. I am still more tired than before diagnosis but the only limitations in my joints is from the damage done waiting to start Humira. If you have a way to get onto biologics quicker, and your rheumatologist recommends this route, grab the chance. You may not be as lucky as I am with the outcome but you won't know if you don't try. I have recently been switched to Amgevita and it seems to be just as effective. I have had no side effects from the Humira or Amgevita; some weeks MTX makes me feel like I have a hangover. If I had the choice I would stop MTX before Humira but it is not recommended so I keep taking it. Hope this helps.
Thank you! I don't think I have much change in my joints but clearly have several that are still red and inflamed with just the mtx. My doctor wants to prevent the damage as she was explaining that once the damage is done it's done and much better to get ahead of it.
I would definitely give humira a go. I was on it and had no problems at all. Was on methotrexate to begin with and although it helped my arthritis, the psoriasis wasn't completely gone. My dermatologist said methotrexate is a first line treatment but its a very toxic drug - her words. Biologics are alot less toxic and kinder to the body than methotrexate xx
Hi rue04 I'm on methotrexate, hydrochloquine and biological retuximab. Before the biological I was on injected embrel for a few years but this wasn't helping so stopped this and hence put on biological 8yrs ago, been the best combination for me ,I have it every 6mths x
I'd like to know the answer also, I used MTX for 5 or 6 years and in the end got so sick of it I ceased taking it and managed flares with Pred for the last 3 years. My previous health authority wouldnt give me biologics and none of the other dmards worked very well. I had got to the stage where the occasional flare had morphed into almost constant joint pains requiring Pred. So my new health authority are putting me on Humira which is an early Christmas present TBH ! But I do fully acknowledge that many on this board are much more disabled than myself.
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