Feeling despondent

[Akaka]

Hi

I last posted when I was waiting for my first biologic Imraldi which turned out to be Hyrimoz another bio similar.

Before getting my first biologic injection on 7th June, rheumatology did in fact give me another steroid injection 80mg in the bum 19 days previously ! That eased thing’s slightly enough to make everyday tasks a bit easier.

By the second week after my first Hyrimoz injection my knuckle and finger swelling reduced, wrists and ankles were a little better, but no difference to my knees. After the second injection not much change. Towards the end of that second week my symptoms started to get more painful again. I had the 3rd Hyrimoz injection last Wednesday and am pretty sure the steroid injection is not doing much now, my rheumatologist said they only last about 6 weeks. My pain is back, stiffness in my hands etc . My knees are puffy and no way can I kneel. It is painful walking although I do try every day. I was so hoping this was going to work, I have lived in pain for the last year and then my knees joined the RA party around April and not been able to walk very far is depressing me as a lot of my friends like walking so I’m just becoming more isolated.

Sorry for the moan, but it just feels like a never ending battle. Do you think I’m not giving the biologic enough time? I realise it’s difficult having had the steroid before hand but I was hoping as that wore off the hyrimoz would take over.

Just looking for that light at the end of the tunnel!

[Amnesiac3637]

Sorry you’re in such pain and feeling low. Unfortunately, as all will tell you on here and your rheumatology team should have said, it takes at least three months for a biologic to be properly effective which is why you (usually) get checked up on to see if it’s working after twelve weeks. The steroid shot wears off at a different rate for people but you’re obviously now finding that it has and that’s why you’re getting the pain back before the Hyrimoz has kicked in.

Some of the JAK inhibitors people are on now work much more quickly - some have a really good effect within days - but the biologics take longer so you’ll have to give it another month or two and if it hasn’t improved your symptoms by then you may want to ask to try something else or you may find, as the weeks pass that what you’re on now will be good for you but it does all take time.

Phone your rheumatology team as you clearly need more pain relief while you’re waiting for results. Good luck and hope you get sorted soon.

[Akaka in reply to Amnesiac3637]

Thanks, that puts into perspective a bit, when I saw the nurse at the hospital; who looking on the positive side said some people feel a difference quite quickly and if you have felt no benefit after 3 injections it is likely not for you! I never even saw the consultant before getting prescribed biologics only a nurse and the only way I knew what was going on was by phoning. I would have had no idea it would be delivered by Sciensus and I’d get a visit by a nurse etc unless I phoned. The positive is Sciensus have turned up when they said and I have already had my next delivery. I have been on pain relief for the last year and not much helps to be honest, even morphine which just made me feel worse. Fingers crossed it improves, I have a podiatry appointment in 10 days so it will be interesting to see what the inflammation in my ankles is like as he has been trying for 2 years to get the inflammation down to no avail.

[Amnesiac3637 in reply to Akaka]

What different experiences we all have with our rheumatology teams! Very best wishes and let’s hope the positives outweigh the negatives!

[Deeb1764 in reply to Akaka]

I have a love hate relationship with the saying “

We have heard people say they feel better within 2 injections”

it gives unfair and probably not scientific % of the approach to the medication and what to expect. If they said need to give 3 months mentally you are ready for that!

When a medi. Says we have heard. 2 or 3 say quick reaction against how many taking it……

Keep pushing thro and seeing how you are in 8 weeks it will be a better analysis.

It took me 5 drugs and 3.5 yrs to find my drug

[Madmusiclover in reply to Deeb1764]

similar here. 5 drugs and 5 years.

[KittyJ]

Sorry but I agree that you’re not giving it enough time, yes some people feel it working quickly but that’s not the case for the majority if you read back on here. For me it worked very gradually over a few months and I didn’t notice any improvement for the first 6 weeks. Give it time, you’re going to be very lucky if anything works after a couple of weeks. Patience 😊

[helixhelix]

when I first started Enbrel my rheumy said to give it 12 weeks. I was despairing at week 11, and then it started to work!! Try to hang on a bit longer.

[aliplayspiano]

Same story here! When I first started on tocilizumab I felt no improvement for several weeks. In fact after 3 or 4 weeks I felt worse. But I felt I had nothing to lose by just plodding on with it for a few more weeks and after about 5 or 6 weeks I started to feel a slight improvement and by 12 weeks I was LOTS better. Sadly these things seem to take time and patience which isn’t easy when you’re in pain.

[Akaka in reply to aliplayspiano]

That gives me hope, I’m hanging on in there 😊

[Runrig01]

I agree with others, it was unfair for the nurse to suggest you’d get a quick response, as you then have unrealistic expectations. It takes 3-6 months to build up to therapeutic levels, so you will find in the early days that the pain creeps back before the next injection is due. I would give it longer, and it does sound like your steroid injection is wearing off, so it may be worth contacting your team, and see if you could have some oral steroids to take whilst the biologic does it’s job.

[Akaka in reply to Runrig01]

I wish everyone had not given me that hope that it would work quickly, even the first Sciensus guy said 10- 12 weeks but could be a few hours or even a few days and they plant the seed of hope! If they said give it 12 weeks and left it at that it would have been better and I suppose I was hoping to be one of the ‘lucky ones’. My knees are so painful and swollen if they don’t improve soon I’ll contact rheumatology .

[Runrig01 in reply to Akaka]

hopefully with each injection you’ll find the relief lasts slightly longer than the previous one. My Trust only allow you to try 2 tnf biologics, so if yours is similar I’d be cautious abandoning it too early. Fingers crossed your knees improve soon. 🤗

[CCL_JMFAN]

Don't despair, I know finding the right treatment feels like it will never end but I live in hope that the right treatment is out there (one that works & doesn't upset my liver). Give it chance and if it isn't right for you, move on to the next option.

Take care

[Akaka in reply to CCL_JMFAN]

Will do, thanks

[Deeb1764]

you need to think the long game there is no quick fix all the drugs are usually with the caveat of 3months. So you need to keep going unless the medication is actually making you feel really ill. Took 3.5yrs to find the right drug so on number 5 and it keeps the lid on things of not perfect.

I also was told for some steroid injections can stop working as well so bear this in mind or they have a shorter time frame. Worth discussing with your team.

[Akaka in reply to Deeb1764]

Yes, I’m sure the steroid injections do not work as well as they did, I’ve had quite a few now in my feet, shoulders, wrists and the depo in the bum! At least two in each of these places 🥺

[Happy5]

Feel for ya the early days are trialsome. I'm on different meds to you but know it took a year for my body to adjust and benefit. Know it's sounds easy but I used things like music, massage and other distractions to help my mind. When in pain as well as analgesics I have to try distraction techniques to help me cope. At times was in so much pain had to contact the advice line for help, in my case the good ol' steroid injection either intra muscular or in the painful joint.

Wish you well offloading here helped me so continue to share.

[Akaka in reply to Happy5]

I think it’s the fact nobody really understands unless you have experienced RA what it is like, this is a great place to off load and get a better understanding of the reality of taking these medications. Everyone so far in the medical profession has told me Biologics work more quickly- which doesn’t add up to the reality of people’s experiences 🤷‍♀️.? I was going for infra red saunas, I might treat myself again.

[Jacey15]

Hi. Humira and Imraldi have taken 5 months to work for me ( I've stopped and started treatment a few times.

[Seatgeorge]

You have to give them time to work,usually upto 3 months with bio jabs and methotroxate is the same, there's no quick silver bullet, you might have to get dosages adjusted as well, just keep plodding on you will get there.

[Lolabridge]

I have had to try several different biologic drugs and the time in between whilst the new one gets to work seem longer than one would hope. I have often needed a short Prednisolone taper programme to get me through it and you could ask your team if you could try that too.

[Akaka in reply to Lolabridge]

I would love a steroid injection in my knees right now, just got to be patient and see how things go!

[Deeb1764 in reply to Akaka]

have you tried oral steroids for short bursts?

[Miasnana]

like many of the contributors here I’ve tried a number of drugs to combat pain and stiffnesssince starting imraldi April 2022 it took 4 months to begin to feel a difference,one of the things I was able to do was hold my 🙏together the first time in many years. I am now reducing my sulpha from 6 pills daily to 4daily this has taken me15 months. I am now almost cross my fingers!

[Akaka in reply to Miasnana]

That’s good to know, well done for coping with 6 sulfasalazine, I managed 4 for several years, but could not cope with 6, I’m still taking methotrexate tablets. Hope you continue to improve.