Not sure what to expect?

[Akaka]

Hi all

I’ve managed to get an appointment with the Rheumy nurse today f2f. I started on Sulfasalazine just over 2 years ago, I was slow to improve and had steroid injections to help along the way. I changed trusts after one year due to lack of appointments and just general mayhem prompted by my GP.

The new trust are much better, but after trying all 4 dmards I am still in pain and just feel like I’m deteriorating very quickly. I was put on Methotrexate, Sulphasalazine and Hydroxy last October after having the biggest flare ever trying Leflunomide. I cut out hydroxychloroquine in Feb due to stomach problems. I had a steroid injection last October at the same time I started this combination and felt things were improving but now realise it was probably the steroid injection and not the meds. Since January my CRP has gone up every month (it has not got below 9 at its best Nov/Dec) from 49 in October. The last test was 29, but I can feel it’s just going up I now know the signs.

I now realise I’ve been surviving on steroid jabs. My wrists are swollen, hands are painful middle fingers swollen, ankles inflamed etc etc. Driving is painful and I am worried they will just want to put my on a higher dose of Methotrexate and change me to injections which I tried 18 months ago briefly and ended up in bed feeling nauseous and generally unwell.

I know you need to fit a certain criteria to take biologics which if I’m honest I feel quite nervous about. I know I’m quite sensitive when it comes to taking medication, if they don’t agree my body soon tells me, I usually end up being physically sick. I’m hoping that they give me another steroid injection today, which is not doing my bone density any good (I had breast cancer and the drugs seriously depleted my bone density 11 years ago) so I’m stuck but can’t live with this much pain much longer even with pain killers that take the edge off at best and they are not doing my stomach much good after 8 months!

If they do suggest biologics how quickly does it take to get them and how do they choose which one? Feeling apprehensive about it all, but know I can’t keep on like this. I am widowed and live on my own and struggle to keep positive, I sometimes think it would be nice to go to sleep and not wake up, I’m so fed up with the morning pain.

Thanks for listening

[AgedCrone]

Try to stop worrying about what might happen. I don’t think Biologics make people feel any worse than DMards.I was diagnosed 20+ years ago in my late 50’s…& in 2016 I went on to a Biologic & it was the best treatment I have ever had. I too live alone,& had had breast cancer…..so be assured your rheumy will only choose to use drugs that are safe for you.

The criteria for Biologics differs with Area Health Authorities..but I think it still includes failing in Mtx which may apply to you. You say you have a f2f with your rheumy today….ask him /her if Biologics would help you…..not everyone with RA needs them.

RA is no walk in the park, but once you get settled on the right drug for you…there is a good, 99% pain free life to be had…I hope you get some help very soon…..don’t just put up with the pain - do ask for help.

[Akaka in reply to AgedCrone]

Thanks, when I saw my consultant in October she did say it was a possibility in a letter she wrote to my GP, then in January she didn’t think I needed to, but I’ve gone backwards since and as I suspect it is the injections that have improved things!

[KittyJ]

As AC has already said, different health authorities have differing criteria for biologics, your nurse will discuss this with you if they feel biologics are the next step. With me the DAS score had to be above a certain level too. Once you get approval, various checks ( chest xray, blood checks etc) are done before you can go onto biologics. It’s not a fast process I’m afraid and you then have to wait for a nurse to come and show you how to inject if that is the way the biologic is administered but the consultant will decide which they feel is best for you taking into consideration other health concerns. NRAS have a publication about medication that you might find helpful. I’ll put a link below. Let us know how you get on and don’t forget to write down all the questions you may have before you get there 😊

nras.org.uk/product/medicin...

[Akaka in reply to KittyJ]

Hi, I had a chest X-ray, foot, shoulder and hand X-ray back in October, I know chest was ok, I did not get any feed back on the others except when I saw the nurse and she just said I had a little OA in the base of my thumb. I’m making my list of questions now …..I’ve asked my podiatrist to write to my consultant as he is under a different trust and said my ankles are full of inflammation even after steroid injections but it doesn’t count for biologics as it is above the waist only! I’ll see what they say, I hope it is the nice nurse!

[KittyJ in reply to Akaka]

they’re to check for latent tb so may need to be redone as it’s a while since the last on but maybe not. It’s a bugbear of many that feet aren’t included, my ortho consultant said they won’t do anything unless I can’t actually walk. Mad. Good luck at your appointment

[Neonkittie17]

Hi there, I am sensitive to many tablets. Sulpha didn’t upset me but high dose Mtx affected me with nausea, and Leflunomide made me very sick/nauseous and had to be stopped, so I have fared much better with no tum upsets on biologic injections (easy to use click pens and an infusion.) As others have said, there is no reason to think you’ll feel awful/sick on biologics. If you’ve had Mtx plus one other DMARD and they’ve failed to work/you’ve had a side effect which isn’t tolerable, etc., you can qualify for a biologic. You will probably have to have a routine, pre-start of new med chest X-ray, depending on which biologic and blood tests before you start a biologic.

The steroid shots dampen down the RA inflammation, but my rheumys have always said the steroid shots can’t really be a choice of permanent control for RA long term instead of RA meds, if you haven't tried biologics. I hope you are soon moving to another med and feeling much improved. The rheumy will decide which is the best biologic taking into account the previous health issues you have had.

Can you be referred by the rheumy for physio at the hospital to strengthen your muscles and you more mobile/less pain? I thought living on steroid shots early on in my RA diagnosis back in 1995 was the best thing to do .. it wasn’t. The best thing did was physio/hydro long term and to keep moving. I hope you can soon be given a new med which will control the RA inflammation and RA disease activity and In turn stop the RA pain and allow you to move more. I believe that is going to happen and hope you do too. 💗

[Madmusiclover]

all the drugs you described made me feel awful and didn’t work. The biologic just didn’t work then I got to my JAK. The drugs you have still to try and likely to be more efficacious. You will be monitored closely. Good luck:

[Akaka in reply to Madmusiclover]

I have been seeing a physio and have done muscle strengthening exercises as I’ve had bursitis and now have tendonopathy in both shoulders but need to be careful of tearing my tendons, I’ve already had one small tear. My wrists are now making those exercises difficult, it’s a viscous circle . How I’d love to get back to my Pilates classes….I feel like I’m at least going forward at long last. Thanks for the support ❤️

[Runrig01]

I found it took 7-8 weeks from starting the process of bloods and X-rays, to nurse visiting. I suspect they will want to redo your chest X-ray, as it’s important to rule out latent TB as it can be activated by biologics. They may also suggest your vaccinations are up to date, which may include shingles depending on your age. Once your tests show no problems, they have to apply fir funding, due to the high costs. Most Trusts hold these funding meetings weekly or fortnightly, but needs approving before they can send the prescription to the delivery company. The company will then organise a nurse to do a home visit, to talk through the benefits and risks, as well as supervising your first injection. It then takes 3-6 months to see an improvement, so although they can be excellent in easing symptoms, it’s not a quick process.

[Akaka in reply to Runrig01]

Any step in the right direction would be good at the moment, I’m not old enough to have had a shingles injection, I didn’t get chickenpox until I was 19 and have never had shingles. The nurse said she has no idea which biologic the consultant will choose. Apparently I don’t present RA in a typical way according to my consultant whatever that means….🤷‍♀️

[Hidden]

It took 2 years for me to get onto the right meds, and another 2 to get movement back. It was only 10 years in that I felt I was ‘in control’ of my life. We are all affected differently.

With Mtx a staggered uptake is standard, and 3 months is usually the point when they increase again. It is a slow process. I was an extreme case. I had rapid onset and couldn’t move for 2 years. Not everyone is this severe.

I would strongly recommend counselling. Get an IAPTS referral and insist on more help if you are still feeling 💩. Their’s is also an incremental approach ….

Being assertive is the way to go..

Good luck. This is a marathon not a sprint….

[Akaka in reply to Hidden]

Hi, I’m beginning to realise that, if I don’t hear anything about the steroid injection or what’s happening I’ll be on the phone before the end of the week. I’ve learnt now you have to make yourself heard, if you sit back and wait you get lost in the system . I had some counselling after I couldn’t get help with the pain during that first lockdown and it was through the counsellor contacting my gp service that I managed to get a f2f appointment with my gp, although it still took 6 months to get a rheumatoid appointment after that..but at least I was on the radar. My gp has been very good and got me more counselling a year after.

[Hidden in reply to Akaka]

Glad to hear your GP is good. Yes, you need to be assertive and ‘be in charge’ of your own care. Keep a notebook and write symptoms and appointments down. A ‘to do list’ etc. Chase things up and go over it all now and again for anything missed.

It does give back a bit of control which helps with MH stuff. Remember to not be hard on yourself. A day in bed with the covers over your head is perfectly acceptable behaviour xx

[aliplayspiano]

I have been on all four DMARDs in the past, all of which had side effects. For the last 5 years 8 have been on a biologic (tocilizumab). It has worked really well though I think it is starting to be not quite as effective now. The only side effect is that it sends my neutrophils/white cell count low so consultant advised injecting fortnightly instead of weekly. I have monthly monitoring blood tests and for the most part the neutrophils stay at just about acceptable level.

[Akaka in reply to aliplayspiano]

That’s good to here, they do like to make you feel as you are a bit odd when you don’t get on with the medications, I was once told 99% do well on methotrexate without side effects! I Didn’t believe it…!

I hope your biologic continues to work, I dream of some relief 💭

[EmmaS-NRAS NRAS]

Hi Akaka,

Sorry to hear that you're struggling with your RA at the moment and it definitely sounds like it isn't well controlled at the moment. KittyJ has posted about our medicines booklet which we hope you found useful but do have a look at the specific Biologics page too: nras.org.uk/resource/biolog... If you use the search box on HealthUnlocked you can quite easily find others with similar concerns about starting on new medications like biologics and JAK inhibitors. The DAS (Disease Activity Score) is used to assess the qualification for these treatments but it does include knees in the 28 joints that are assessed so your podiatrist wasn't quite right. Hopefully your rheumy team can get you on the right treatment soon and do give the Helpline team a call on 0800 298 7650 (or email [e-mail]) if you have any questions or concerns following your appointment.

Best of luck,

EmmaS- NRAS

[Akaka in reply to EmmaS-NRAS]

Thanks for the info, I definitely feel like the disease is getting worse by the week, I’m so much worse than when I was diagnosed just over 2 years ago although I now realise I had RA the year before but all my appointments were cancelled due to lock down and just as I had my scans but never the results. I try to live in hope of something working ..it’s a cruel journey!

[Rachmaninov2]

I agree you just can’t get the results of scans. I had a DEXA scan 10 weeks ago, tried chasing up the results and found out the rheumatologist received them on 2 February. Like you I am feeling worse now and not up to all the chasing around we are expected to do. Best wishes to you.

[Akaka in reply to Rachmaninov2]

Yes, I think it means they have viewed it or at least opened the report, it’s just hard work trying to find what it says, it’s our body at the end of the day!

[Rachmaninov2 in reply to Akaka]

🤷🏼