biologics

[Amb1xkr]

just had an appointment to Rheumatologist that was scheduled for last October but cancelled three times. After complaining with pain issues got an appointment and rheumatology has suggested I add Adalimumab to my methotrexate 25 mg injections . Did bloods and chest X-ray whilst I was there. I have now read the pamphlet given me and am really nervous of adding this drug. I have RA and Ankylosing spondylitis. Any one know of other alternatives. thank you

[J1707-]

unfortunately when we hit the biologic stage every drug comes with a leaflet that frightens the Beejazus out of us. I will try any drug if it doesn’t work or causes side effects I’m not happy with I stop that drug and onto the next. I decided to keep trying . I’d rather a good quality of life for a shorter time than no life for much longer. It’s never easy with this disease

[Amb1xkr in reply to J1707-]

thank you . I have only been diagnosed for just over 2 years and only given methotrexate in ever increasing dosages. Now on max dose and it’s obviously not working as it was. I used to get cross with my mother for reading all the leaflets on medications from GPS or hospitals and now I’ve turned into that person 🤦‍♀️

[J1707- in reply to Amb1xkr]

my dad was the same . 😂

[Twitty999 in reply to Amb1xkr]

2 years ago I was at the same stage as you, highest level of MTX injection but still in awful pain.. so I requested Rituximab Infusions (after reading about it) and my Consultant agreed to give it a try & I can honestly say it has given me my normal life back!! No side effects, no pain killers & am able to do my Aqua-Excersise again ☺️ So maybe you could give it a try? & I hope it’s as successful for you too 🙏🏻🤞🏼🤞🏼X

[MJSlide1958 in reply to Amb1xkr]

Hi Amb1xkr,

I am a Mother of my Daughter who was diagnosed in middle of her A levels at 17 years. She is now 31 years old and I am constantly worried (it seems more than her) and looking into healthy lifestyle. She is also on Enbrel since 2010 to now and after 8 years on Enbrel on its own has now to add 15mg of Methotrexate tablets to keep the Enbrel alive for her! She did get through her A levels and Foundation Acting and 3 year Acting Degree and is now a professional struggling Actor. Enbrel helped her! A very scary drug, but quality of life was much better when she eventually got on the Biologic. I hope this helps you. She now wants to consider having a baby one day. But this will be difficult and has to be planned well. She has already had an op to her ovaries because of bilateral dermoid cysts in both ovaries and was fine for 5 years and they have started to grow back and will need another op to remove. Then she will plan her pregnancy?? I myself wish her so much luck, but I do not think I would bother if me, but obviously keep this opinion to myself. Wish you very best luck and hope biologic treats you well too.

[Madmusiclover in reply to J1707-]

me too. Quality over quantity.

[AgedCrone]

I’m afraid we can’t give you any clinical advice. All we can do is say how a certain drug affected us.

However, you have had a clinical opinion from your Rheumatologist- after tests, so I really think your best way of finding out if the drug is the one for you is to try it.

I do know how reading Dr Google can be scary, but if you research every drug, you are recommended to take…..You will find they all have some very nasty side-effects for some people, but for others they are their magic pill….so let’s hope Adalimubab will be the right choice for you.

Good luck..let us know how you get on.

[medway-lady]

To put in perspective, paracetamol kills people on a farely rare but still happens basis. So it’s about risk v benefit so then what you got to loose by trying it? I got kidney failure from a common medication but my risk was minute and so I’d still have taken it. The risk sometimes has to be just taken with consideration to benefit. I think if 10 % get a side effect then 90 % don’t and stastically you’re more likely to be in the 90% group. Please try not to overthink things, and this could be the medication that puts you into remission. I do hope so and RA is a long journey so patience is vital but it’s better to go forward with hope rather than frighten yourself silly with some PILS listed side effects when if you don’t get diarrhoea you get constipated. Lol

[Oshgosh]

I’m not on biologics,but every tablet I get comes with reams of information re side effects.

When I’m given a different drug,I don’t read the leaflet straight away.

I start the tablets and see how it goes, I’m sorry if this seems a bit casual,but I always try to assume that it will help me.

Generally if the drug won’t go with what I’m already on, U assume that the computer would pick up any contraindications as it does at the GPS surgery .

I was prescribed Nintendanib last year,that time a number of us had a counselling session with the consultant and lung nurse.

That was really comprehensive,he stated the risks and the benefits.

- you won’t feel any difference,hopefully it will slow the progression of fibrosis.

He stated the potential risks,to liver and kidneys upset stomach.

The higher dose did upset my stomach.the pharmacist told me to stop it and s he sent me the lower dose a month in and alls ok bloods ok.

I’m sorry for long post.

If you’ve in pain,perhaps it would be worth giving it a try,we have to weigh up the benefits and Rick’s of treatment

Please look after yourself .

[KittyJ in reply to Oshgosh]

me too Oshgosh, I don’t read the pil, only go to it if I have reason to check the possible side effects. Just the worrying about the possibility can give you symptoms.

[Oshgosh in reply to KittyJ]

I agree.

[Brian1977]

I've been on methotrexate since last September been on 25mg since January It's not really helped yet but mri scan in March showed inflammation has spread to my sacroiliac joints so they have started me on amgevita. I took my first injection last week I'm praying it's the one that finally gets me some life back. Good luck with your choice 🤞🤞🤞🤞🤞

[Runrig01]

It’s important to point out that biologics only target one cytokine, in this case tnf. It turns the dial down to that of a normal person. I worked as a nurse on a busy ward, and been on MTX and biologic for 6yrs. I’ve had far fewer infections, as my body previously was too busy fighting inflammation to notice infections sneaking in.

Nass have published several papers showing the risk of cancer is extremely low. Personally I’ve not known anyone in the last 6yrs to get cancer from biologics, and I’m on a couple of forum with thousands of members. You are monitored closely on them, and can stop without weaning if you decide it’s not for you. I went from struggling to reach my knees to touching the floor. My basdi went from 7.4 to 3.2, I just wish I’d been offered sooner, as my quality of life is so much better.

[Marionfromhappydays]

I think Inflammatory arthritis medications are akin to you can't have your cake and eat it.

Stay un medicated and all sorts could happen, things we can't ever change, take these medications but have to be aware of the possible side effects.

I'm on biologics, I would have no quality of life without them. I recently had a bad flare and wow it all comes flooding back how bad things can be.

Now I think of my benepali as my champagne (well I don't drink but you get what I mean), I will accept the risks, be self aware of possible infections but I try not to be over stressed.

I will say I found methotrexate sucked and with biologics I haven't had any of the same side affects as I did with mtx. I appreciate mtx is different for everyone

Good luck x

[oldtimer]

Adalumimab transformed me from constant pain, swollen joints and difficulty doing things to almost normal. It was marvellous after so many years of struggling. It may not work for you but it's worth trying!

I haven't had any problems with it. Best of luck!

[Bookworm55]

I’ve just had my second Adalimumab injection and so far so good - much less pain and minimal side effects 🤞 After being on hydroxychloroquine, methotrexate ( and sulfasalazine which I still take) and leflunomide (which did absolutely nothing ) fingers firmly crossed for this one.

[netballnow]

Within 10 days of my first Adalimumab injection I was free of all pain and back to normal with lots of energy. I only had side effects after the first; now had 4. Go with it because if you don’t try it you won’t know . I wish you a pain free life going forwards.

[linmar]

After sulphasalazine stopped working, I was put on methotrexate. This didn't help with the pain. I then went onto Adalimumab. That was in 2011. Ive been pain-free ever since and no more flare ups or fusing of the joints since then. I use the injection every 3 weeks now instead of every 2 weeks and take 10 mg of methotrexate. I hope it works well for you too.

[Brikel]

cautionary tale

I was on Biologics ( Benepali)

I was telling everyone how good it was as it WAS a game changer for me. No pain or swelling etc.

I was on it for about 4 years

Well , come the Coronation weekend and my oxygen levels hit the floor I was very unwell and had to spend nearly a month in hospital After a variety of test it was discovered that I had

( amongst other things) PCP

Pneumocystis Pneumonia

It transpired that taking Benepali or etanercept as it is also known by had reduced my immunity to near zero thereby opening the flood gates for other infections

’Im now off all my R A drugs and so far have not had any problems

I hope this helps

Brian

[Anniebl24]

I have tried anti TNFs and now on JAKs. They all come with risk and benefit. I would say read the information put out by NRAS or versus arthritis and see how you feel. If you still feel worried about the anti TNF discuss one of the other options with the medical team and see what they think. You can call NRAS for a chat and they are really helpful too.