biologic therapy

[Barrcroom]

I have been on methotrexate for 20 years for RA. I started at 10 mg. Went to 15mg fairly promptly and then 20mg last year. In general I had no side effects and good quality of life. Recently I started to have a lot of flares and my rheumatologist has recommended a biologic. He said I could try upping the methotrexate to 25 mg and that could work but he is going through the process to check my suitability for the biologic first and then I can decide what path to take. I think I am veering towards the biologic. Has anyone had any experience in a similar position. The biologic is adulumibab (spelling guess).. I am a 68 year old male. I don’t normally post but I follow the posts regularly.

[helixhelix]

I was sort of similar in having been on MTX+ treatment successfuly for years that started to be less effective. I wasted a year dithering about it, worried about infections etc. What a waste of a year that was!

Adding in a biologic (I still take MTX) really improved my quality of life. My side effect was a runny nose for a few months.

(I have just changed biologic and my runny nose is back - so hope it will soon go again. This seems to be ‘the’ side effect I get. It is individual).

I am a bit younger than you, but not by that much.

[Barrcroom in reply to helixhelix]

Thanks. That sounds very positive. I think I’m leaning towards the biologic.

[KittyJ]

I too put off starting a biologic as they scared me (mtx 20+ years but higher doses caused vomiting) I realise I was silly now as I was risking more joint damage but it has made such a difference. I’m still on mtx too but at a low dose. My only side effect was a bunged up nose/sinus but that gradually wore off. Let us know how you get on 🤞🏻

[Barrcroom in reply to KittyJ]

Glad to hear it worked out. Thanks for the feedback.

[Barrcroom in reply to KittyJ]

thanks

[Pythagorus]

I too am on Methotrexate and have been for many years. Four years ago after a big flare I commenced on a biologic,Benepali. I was then hoping to come off or at least lower the dose of Methotrexate. My consultant advises a reduction in dose if I can go six months without a flare. I now am on 20mgs down from 25mgs and all is now going very smoothly and hoping to reduce further at next consultation .Good luck.

[Barrcroom in reply to Pythagorus]

Thank you. All encouraging comments so far. Sounds good.

[Nyreedw in reply to Pythagorus]

They like you stay on mtx alongside biologics, as it keeps it working better and stops the building up resistance to it. Biosimilars seem to need them more than originals. I'm on humira(9 years) and have always taken 15 or 20mg mtx with it x

[Pythagorus in reply to Nyreedw]

thanks for that info Nyreed that has never been explained to me. I shall have more questions at my next consultation !

It’s so difficult to get answers if you don’t know the questions 🤔

[Nyreedw in reply to Pythagorus]

You're welcome. I was given this explanation by my rheumy at pre starting appointments. I've always done a lot of research and gone armed with knowledge. Get a notebook and right down questions ready for appointment, when you think of them, then you will be armed and ready x

[Barrcroom in reply to Nyreedw]

thanks.

[Scottishlad]

I worked my way up starting on sulphasalazine, adding hydroxychloroquine then methotrexate. Final dose of methotrexate was 25 mg. As my Rheumatoid Arthritis wasn't quite under control I was put forward for biologics a few years ago.

I noticed the effect fairly quickly, initially the cimzia was supplemented by 10 mg of methotrexate later the hydroxy was added back. I'm now pretty much in remission with the occasional flare reminding me I still have the disease.

I've not noticed any real side effects from the biologic.

[Barrcroom in reply to Scottishlad]

Thanks for the reply. I think I’m decided to go with it.

[Scottishlad in reply to Barrcroom]

I hope that they work for you. Of course there are no guarantees in RA medication

[Anniebl24]

certAinly worth taking the advice of the rheumy and trying it.

[Barrcroom in reply to Anniebl24]

Thank you.

[CagneysMum]

Hi. I’m a 60 yr old female, diagnosed with RA about 4 years ago. Started on methotrexate 10mg with lots of naproxen and then added in hydroxychloroquin (2 tablets). Slowly increased methotrexate to max dose and then switched to pen injections 20mg. Still not quite enough to control my RA so halved hydroxychloroquin to one tablet a day but added in adalimumab every two weeks.

That was a game changer and I felt so much better within a couple of weeks. That was almost 2 years ago, during which time I’ve been able to gradually drop my methotrexate back down to 10mg.. with no flares at all in 2 years. Can still get tired and achey but no joint pain or swelling 🤞🤞🤞

[Barrcroom in reply to CagneysMum]

Thanks. I hope you’re success continues.

[Hallwood]

Hi, I'm just endorsing other comments about the benefits of moving onto a biologic after years of methotrexate. I wish it had been sooner as I suspect the permanent damage done by RA would be less.

[Barrcroom in reply to Hallwood]

Thank you.

[Ghugs]

I was reluctant at first but finally went with Humira in a self-injection pen. I haven't looked back .....one jab every 2 weeks.....worked straight away....no symptoms since I started

[Barrcroom in reply to Ghugs]

thanks

[Sunshinereturns]

I went up from 20ml injectable methotrexate to 25ml and it’s had a massive positive effect. I tolerate methotrexate well, though it’s had to steadily increase. My dosage is now teamed with sulfasalazine and so far so good. I’m 20 years younger so expect biologics to appear in my future. However my experience in upping methotrexate to the max has been a positive one.

[Barrcroom in reply to Sunshinereturns]

Thank you

[oldtimer2]

Adalumimab has transformed the control over the flares in my case. Well worth the injections every two weeks.

[Barrcroom in reply to oldtimer2]

Thank you

[Bails67]

I was just the same on MXT higher dose an sulphasalzine. They stopped working and I was put on a biologic( HUMIRA, original adulumibub) This was many years ago. It put me in remission, I stopped the MXT ( side effects) and I have stayed on Humira with no problems. I was concerned about the side effects as it was a fairly new drug years ago. I am so pleased I took it and my quality of life improved so quickly.

[Barrcroom in reply to Bails67]

Thanks

[Doodlereggie]

I was on Benepali biologics for last 9 months,pen injection once a week.I had no side effects at all,apart from a runny nose initially.however,just changed to a JAK2 tablet,as my rheumy is very progressive,and thought I might do even better on that,although it is quite new.As I am nearly 80 he thought it was well worth a try.I did not have any other meds with biologics,although it looks as if people who combine them may do better.Maybe ask your rheumy about JAK2 treatments,as no injections,just a daily tablet.I have been on filgotinib for nearly 2 weeks and have already noticed a difference in pain and mobility in my hands and wrists.Good luck and don’t hesitate to try new meds,they really are a miracle treatment,so take full advantage of the best on offer!

[Barrcroom in reply to Doodlereggie]

Thank you

[HamHammy]

I ditto helixhelix in that I was on methotrexate first but it did nothing on its own. Was on 20mg plus. Never looked back once I went on the biological as my symptoms improved no end. Not saying that it has completely disappeared but definitely improved so significantly

[Barrcroom in reply to HamHammy]

Thank you

[bienassis]

Hello Barrcroom

Like many others, I have been through the same ritual as you.

25 years now on Methotrexate. After a severe flare in September 2019 it was decided to start me on a biologic - retaining the Methotrexate (10mg). So, in March 2020, after various tests, I had the first infusion of Remsima (Infliximab).

I persevered for the first year in spite of difficult side-effects. I was encouraged to continue for a while but finally had to stop when Heart Failure was diagnosed.

Since then, I have been managing well enough on the Methotrexate - although I had a minor flare recently which quickly abated. I did not start on a new biologic.

This post is not meant to discourage you - we all have different experieces on these biologics. And remember, if one drug doesn't suit there is always another waiting in the wings!

I wish you the Best of Luck,

bienassis

[Barrcroom in reply to bienassis]

Thanks. That’s interesting as I am on heart medication but I’m sure the nurse preparing me for biologic will go through the relevant possible problems

[bienassis in reply to Barrcroom]

Yes, that will certainly be the case. Just to add a couple of points: it was my GP who discovered the protein in my blood that indicated Heart Failure and recommended I halt the biologic, as it was implicated.

Later, I learned that Remsima doesn't actually cause the heart condition but does make it worse! I didn't quite know what to make of that as I had had various tests on my heart and lungs before being prescribed the biologic. I assumed all was well.

I am now being treated with a cocktail of drugs for the heart condition ; and everthing is going well. Another point: I am quite a bit older than you - 87 - and age may have something to do with the decision to cut out the biologic.

Frankly, after 56 years with RA I feel I'm lucky to be still upright. 1967 was not a good time for diagnosis as so little treatment was available.

[Barrcroom in reply to bienassis]

Thanks again. I hope I reach 87. Take care

[Green230461]

I was on humira for eleven years and it was great. Then caught covid and it stopping working! Now on baricitinib. Good luck 🤞🏻

[Barrcroom in reply to Green230461]

thanks

[Green230461 in reply to Barrcroom]

I think we all end up climbing the drugs ladder. I used to worry about it a lot but pain is a great leveller! In the end you will take anything for some peace. My gp even suggested oramorph at one point. I took a teaspoon and saw pink lizards climbing up the wall - not for you he said!!🌺

[Blackwitch]

Hi. I’m in a similar situation, although I have multiple health problems as well as RD. I’ve been through all the usual DMARDS, eventually reacting to all of them. I was just left with Morphine Sulphate, paracetamol, diazepam for muscle spasms and regular IM Depo-Medrone steroid injections. I’m now going to be starting on a biologic, in my case Benepali. Like you. I’ve been worrying about side effects. There are so many little niggles in the back of my mind. Do I keep wearing a mask, how spotless should everything be kept (we have 3 dogs)? We just have to take the plunge I suppose and see what happens. Good luck with yours It sounds as though I have to wait about 4 weeks for my first injection. I’ve purposely asked for small injections and not the huge contraptions I had with the Methotrexate Metoject pens as I couldn’t use the plunger. I’d be interested to see how you get on. Nic 🙂

[Barrcroom in reply to Blackwitch]

thanks and good luck with the treatment

[Kariss]

Hi, apart from the fact that I am female, I am 68 and my medication history is very similar to yours. I was on metoject methotrexate for 13 years, having tried other drugs first and failed, starting the mtx high and reducing as symptoms improved. Then my consultant left and the new one recommended that I ‘Should be able to do better.’ And wanted to try another drug. So he took me off mtx (which had kept me steady but had a few side effects), and put me on fluonomide which made me very ill. That was stopped and I then passed the assessment for adalimabub. I started this with no problems - no side effects at all, but after using it for 6 weeks I was reassessed by a rheumalogy nurse via a telephone consultation during Covid lockdown. I was asked if I had seen any positive effect on my disease activity and being very honest, I replied: ‘Not yet.’ The nurse told me I would be seen next in clinic, but I then received a letter from my consultant telling me to stop the biologic immediately as I had not seen improvement, and that I would be seen in clinic shortly. I never got my clinic appointment and the consultant didn’t offer me any alternative drug. I have not been on any medication for 17 months now and I have now been told I qualify for pain management only, (although my RA is constantly active in some part of my body and I have gone downhill health wise.) I fear I have been left by the wayside! I personally don’t think 6 weeks on a new drug is long enough to make a judgement, but would just like to say that if you do decide to try the adalimabub, please, please make sure you will get further treatment afterwards if it doesn’t suit for you as it seems to be very difficult to get back into the pipeline once medication is removed. (Sorry, this wasn’t meant to be a whinge, but more of a Good Luck positive warning!)

[Barrcroom in reply to Kariss]

thanks. I Hope your situation improves.

[Therapy6650]

I was similar and was diagnosed with an aggressive RA when I was 30 yrs old I was on methotrexate for years and getting steroids 3 times a year, until it all stopped working and I was having constant flares and in constant pain - I was put onto biological therapy, tried a few. Until I received the same one your about to have. I have to tell you that it has been the best thing that could have happened to me - it was and continues to be a great relief - I had quite a few chest infections for a couple of years but they have really decreased over time. I hope the biological therapy is as good for you as it has been for myself. Ps I only take 15mg of methotrexate weekly now. So that has been a real bonus too. Good luck with your treatment.

[Barrcroom in reply to Therapy6650]

Thanks. That sounds very positive.

[suecole71]

I am on a biological injection. Have been on it now for about 8 years, it's the best thing I have ever tried. Mine is Cimzia and is in an epipen taken every 2 weeks.

[Barrcroom in reply to suecole71]

thanks

[Zip1]

I have recently changed from MTX to idacio (adalimumab). No more nausea! No flares so far and feeling much better. Best move ever! Good luck hope all goes well for you .

[Barrcroom in reply to Zip1]

thanks

[Jackie1947]

I'm on Benipali and it's changed my life . Go with it. What have you got to lose.

[Barrcroom in reply to Jackie1947]

thanks

[LadyJan]

I also am on Methotrexate for a good few years 15mg...cannot go higher as react... so also given Adalimabub!! (Humira) as you. I inject fortnightly and it has kept the fares in bay.

I am a 79 yr old female

Ladyjan

[Barrcroom in reply to LadyJan]

thank you.