Amazing : Started biological drugs last Wednesday and I... - NRAS

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Amazing

Buckybri profile image
35 Replies

Started biological drugs last Wednesday and I am pain free first time in 18 months , surely they can’t work that quick but this is the first time I have walked properly for 18 months I can’t believe it .

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Buckybri profile image
Buckybri
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35 Replies
Mmrr profile image
Mmrr

Biologics can work immediately, brilliant news for you.

Which one are you taking ?

Buckybri profile image
Buckybri in reply to Mmrr

Imraldi ,honest the pain has totally gone I have really struggled for 18 months been really ill on mtx then had the injection which I’m having no side effects from but didn’t seem to work so put in biologics and 4 days later I can walk properly. I understand why these medicines can not be given straight away due to price and side effects etc but it kind of makes me mad especially when my marriage was really rocky at times because of all the stress etc and all the money I lost from not working .

Mmrr profile image
Mmrr in reply to Buckybri

Yes, the amount of time lost off work, cost to the state in dealing with long term health issues caused by RD, payment of benefits and so on are not taken into account. If more people were on the advanced therapies costs would come down too.

Not to mention the human suffering !

Buckybri profile image
Buckybri in reply to Mmrr

Sometimes side effects don’t come into it if it gives you life back again .And I had to fight hard to get on these drugs .

Some people get an instant improvement others slow but steady. I’m delighted for you something as simple as walking makes life so much better.👍

Eiram50 profile image
Eiram50

Fantastic news! Enjoy and long may it continue x

Lolabridge profile image
Lolabridge

So pleased for you. Is it tango lessons for you now then?

Buckybri profile image
Buckybri in reply to Lolabridge

Lol no just walking my dog for now , but I now don’t take walking for granted and really enjoy it

helixhelix profile image
helixhelix

It happens for some, so enjoy!

Biological medication changed my life. They are amazing. If I had had them earlier I would have missed severe sickness and weight loss, pain, deformity and the need to retire two months before being eligible for a full pension. I'm very grateful for them now but when I hear of people with RA doing amazing feats I'm very aware that the playing field is not equal. The richest in society have immediate access to the best drugs. I don't dwell on this fact; I am extremely grateful that I have biological medication and I am looking forward to a time when they will be available for all. Hopefully generics will provide the answer.

Buckybri profile image
Buckybri in reply to

Exactly that’s how I feel as my marriage at one point was hanging on the edge of a cliff my children suffered and at one point I was suicidal that I had to get help for my depression. . I lost friends and most of all my poor dog never got walked 😉

springcross profile image
springcross in reply to Buckybri

I can understand how that would have upset you. Glad it's behind you now. Onwards and upwards. 🐕

Buckybri profile image
Buckybri in reply to

What sort of side effects did u get ? And what do u have to be careful off . I will be honest they told me so much with X-rays and then they thought I had latent TB i think some of the advice might of gone over my head

in reply to Buckybri

The side effect I have is that I am more susceptible to bugs and have a difficult time overcoming them. Some of this can be put down to age but not all of it. I take extra care to keep away from people who have respiratory illnesses such as colds and flu. I wash my hands frequently etc. I'm delighted that the rest of the population is following the guidance provided against coronavirus. It is the same guidance that stops the spread of all viruses. This is really helpful!

Silverpixie profile image
Silverpixie

My first biologic had the same immediate effect. After 6 weeks it stopped working. 4 years and 5 biologics later they found one that worked. In the meantime the stress of it all ended my 30 year marriage. However, I am now well and incredibly mobile. Ironically the biologic that did work took 3 months to work. I hope you have struck lucky first time.

Longlocks profile image
Longlocks

Getting my paraphernalia delivered today and a nurse coming on Wednesday. I can’t wait as I’ve really been struggling with my hands,wrists ,elbows and shoulders. I’m a self employed hairdresser so really really need to be able to work more than the painful few hours in the afternoon Which is all I’ve been able to do. My savings are depleted so I’m soooo hoping these new injections start to work quickly 👍😊

in reply to Longlocks

Good luck

Buckybri profile image
Buckybri in reply to Longlocks

Hope they work for you like they have for me , I really do I feel yr pain I know how u feel but hopefully sooner than later something will work , I really thought I was never going to get better , I even sold my camper van as I couldn’t see me going on camping hols no more due to the pain and movement in my joints . Good luck

I am so pleased for you Buckybri. You are very lucky to have got put on the biologics. I have been asking to try them for several years now and am always fobbed off. It would be so wonderful to be able to walk properly again as I have got to the point now where it is even hard to walk around the house.

I wish you the best of luck that it continues and gets even better as time goes on. xx

in reply to

That’s not right Holly/ willow if your suffering and meds are not working they should help you . I made a right nuisance of myself. I phone the clinic nurse sent photos and emails ever day I was struggling I copied my Rheumatologist in. They gave me steroid injections I would get maybe one day relief then I would be sending email. I wouldn’t be fobbed of. ( also kept going to gp who would contact them) I could only be proactive due to the support of people on hear. Time to make some noise.

Buckybri profile image
Buckybri in reply to

That’s exactly what I did, I told them my marriage was suffering , I went to the docs every week telling them I’m struggling with life ( because I really was ) . Like I said it’s worked for me hopefully , but we are all different but if nothing it working then you should be able to go them . So reading a lot on here r these meds hard to get on ? And if so why ?

charisma profile image
charisma in reply to Buckybri

In the UK, biologics are far more expensive for the NHS than DMARDs. Therefore, we have to have tried a specific number of DMARDs before being considered for biologic meds; and of course we have to be screened for previous TB and other diseases that may be reawakened by biologics.

As others point out, the savings if we got biologics strAight awAy are obvious in terms of quality of life, ability to earn instead of claim benefits etc. :-)

Buckybri profile image
Buckybri in reply to charisma

When I spoke to the rhumy doc i asked about prices and she told me that when the biological meds first went on the market they would cost an average of £9000 per patient but now that there are multiple company’s producing the medicines it’s now around £2000 per patient , is this right ?

charisma profile image
charisma in reply to Buckybri

I don’t know... but the new biosimilars are much cheaper than original brands. It is saving millions of ££s.

AgedCrone profile image
AgedCrone in reply to Buckybri

Yes.....prices have fallen dramatically ..as soon as the bio similars started appearing on the market the NHS was switching over as quickly as they could..... so the original pharmaceutical companies were losing orders left right and centre .

Thus deals were done and the prices of the originals were dropped....which is why it is so much easier to remain on an original Biologic now.

charisma profile image
charisma

I hope that continues, great news!

I had Adalimumab (Brand Amgevita instead of Imraldi) last year but it had no effect. Now waiting for drug infusions to work; hoping they will! 🙂

Leics profile image
Leics

That’s fabulous news long may things continue to improve for you. It’s amazing how the right drug treatment can make such a difference to a long suffering R.A. patients life. I’m hoping I can go back on my baricitinib soon because my life is much easier with them but have to clear this infection up first. Each time I finish a course of antibiotics it comes back again. Just had my last pill so 🤞things will look up for me too soon.

rab1874 profile image
rab1874

Great news long mate it continue xxx

Buckybri profile image
Buckybri in reply to rab1874

Thank you

AgedCrone profile image
AgedCrone

Don’t knock it...just enjoy it & pray it lasts!

Justanothermama profile image
Justanothermama

Congratulations! Enjoy it!

KittyJ profile image
KittyJ

I'm so pleased, thats great news for you Buckybri, it does work quickly for some people 😀

Buckybri profile image
Buckybri in reply to KittyJ

Thank you , But after reading it does sound like it could last for a while then back to normal again I hope not , but it’s amazing how u can just take one injection and the pain and stiffness just disappears, it’s like a miracle. Ra is a horrible disease that most people don’t understand because they don’t have to ,but now if someone tells me that they have it I totally understand how hard and painful and frustrating it is and that’s without the horrible side effects of the medication they might have to go through .Also family members don’t understand what you are going through and I found that so hard to ,not that i was looking for sympathy I just wanted my loved ones to understand why I was miserable but they didn’t .

KittyJ profile image
KittyJ in reply to Buckybri

Yes Buckybri thats what's so good about sites like this, everyone knows what you are going through and can support you, we have al been there. Try not to think about the fact that you've read it might not last, lots of people do very well on biologics for a long time, you can be one of those people too 😊

juliea793 profile image
juliea793

When I started Enbrel some 14 years ago it worked almost instantly. As I said at time the greyness disappeared, then the joint stiffness all in a matter of a month.. I felt human and went and increased my hours of work. And by paying my taxes I felt I was helping pay back the cost. Enjoy your freedom.

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