I haven’t posted here for quite a while and just plodded on with first methotrexate, then hydroxychloroquine and finally leflunomide and along taking 7mgs prednisalone...not feeling great but not bad either. Over the last couple of months my pain, fatigue etc has got worse and it hasn’t really helped me taking semi retirement and working part time.
I spoke to the Rheumy nurse and was given an ‘urgent’ appointment. She advised that I withdraw from the prednisalone a few days before the appointment. I’ve felt so exhausted and unwell I’ve been off sick for the last five days and now horror of horrors ..... the rheumatologist is unwell and my appointment is cancelled
What do I do now? Hopefully I’ll get an appointment quite soon. I really don’t want to go back on the steroids as the withdrawal had been horrible - diarrhoea, extreme fatigue, tears etc and Ive run out of methotrexate too ( it expired 8th March when I last took it)
I think I should just limp through till I get my next appointment - what do people advise. I also want to maximise my chances of getting biologics
Advice please?
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Barb66
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Its quite a journey and unfortunately it mirrors mine and probably countless others across the country. I was very distressed to learn that I had to stop steroids to gain eligibility for biologics/similars especially as I knew they were only thing keeping me going and the descent into fatigue and generally feeling unwell was very unpleasant.
To qualify for biologics/similars your DAS score needs to meet the (from memory) 5.1 requirement (need to check the score required) - this is due to NICE guidance for the prescribing of these drugs. This often means that RA patients have to stop essential meds such as steroids to prove eligibility and prove how bad their RA is.
I suggest you contact the Rheumy nurse, do they know you have run out of methotrexate? You may need to explain how unwell you are feeling - in my opinion you really shouldn’t have to suffer unnecessarily - it is my experience that we have to gently push to ensure we are heard and we receive the treatment we need and deserve.
Thank you Fiscal it’s reassuring to know I’m not alone. And did you get prescribed biologics/ similars? And have they helped. I’m sure Im also not alone in worrying that Im not ill enough to qualify either. Although without the steroids, I don’t really have a life and feel quite depressed that I might be stuck like this 🙁
That’s interesting, I started on a biologic last summer and I was on prednisolone, I didn’t have to stop it. I suppose different hospitals have different ways of doing things.
Hi Kittyj I was advised to come off the steroids to maximise my DAS score. You must have scored a high level of disease activity regardless of your steroids
I think you need to contact rheumatology and let them know how unwell you are. I suspect they will not have you unmedicated for long, but you do need to tell them.
I just started biologics 2 weeks ago , but I am also taking 10 mgs prednisilone a day. However, my DAS score was 5.17 then upped to 5.5 even on steroids.
Hi Mmrr I’ve spoken to the specialist nurse and she’s advising I go back on the steroids until a few weeks before my appointment which isn’t now till mid May with no chance of an earlier appointment as the Dr is off sick till mid April with no available replacement!
Aww I'm so sorry. I would too contact your rheumy's secretary and remind them how awful you feel. You need to start the biologics ball rolling ASAP. It makes me so sad as people are allowed to slip right down and then you take longer to recover. This happened to me with an inadequate admin and pharmacy team delaying the start of two of my biologics. I won't go into it all but it was handled badly. I had to push all the way as they kept forgetting me. Good luck x.
I was where you are last autumn. Very slowly reduced steroid dose as had been on them for two years and was back to square one again. Called rheumy and got an appointment the next week. Had a blood test so that it was accurate.
It was interesting to see the blood count as whilst taking steroids, it looked fairly average. Post steroids, it spiked massively for biologics to be added to the mix. I was prescribed a low steroid dose again (oh the relief!) to tide me over until the biologics kicked in. Now , 5 months later, the improvement is massive. I have my life back. Still stairs and stuff are tricky, but I’m back in my business, exhaustion has gone and I have a social life once more. Ow the inflammation has subsided, I’ve been referred to physio.
The tough bit is the bit between coming off the steroids and getting approval for biologics. Can you call rheumy and find out how long the wait may be? If it’s likely only a few days, perhaps tough it out, get another blood test too. When you’ve had that appointment, resume a short steroid course, as the tests should show your levels spiked and biologics agreed so won’t affect their decision then.
It’s a horrid time for you. Sending lots of love 💖💕
Thank you Cwendyn I’ve had my blood taken yesterday and am hoping my CRP will be raised enough to qualify me for biologics and then I can go back on the steroids 😊
Agree with other that you need to push, at least to find out how long the wait for an appointment will be?
The guidance given to hospitals is that you have to have a DAS score of 5.1 or above measured on 2 occasions at least 6 weeks apart. Some hospitals stick to the letter of this, others are more flexible. You can also check your DAS yourself to give you an indication
It is a miserable, miserable system. I don't think doctors like it either as they'd prefer to use professional judgement about when biologics are needed rather than being replaced by an app.
Hi Helix I asked the rheumy nurse about the assessment and Im pleased to say they don’t do the repeat assessment anymore so I just have to be ill enough on the day ....
There must have been a reason your apt was cancelled ring the dept. and ask them if they can explain and when you can get another urgent apt. asap and explain to them why you need to see someone. I had mine cancelled due to the consultant having been in a accident and had whiplash injuries. He is back at work this week though. Good luck.xxxx
I’ve been on prednisalone for 2 years but have been slowly reducing but once I get to 6mgs I start getting RA symptoms back. I took a couple of weeks off work to come off steroids so it wasn’t too bad although my mood has plummeted 🙁
Sorry to hear your suffering at the moment. Doesn't your Dr prescribe your methotrexate on repeat prescription, I put mine in every 3wjs to be sure I don't run out. If this isn't the case contact rheummy nurse. I'm on retuximab biological and was told if I feel bad coming up to next infusion I can have a steroid injection to keep me going . As it's been said all hospitals have their different ways. All the best for a quick appointment xx
Hello I’m so sorry things are so bad but really concerned that you have stopped your pred so suddenly. It may be that you have been on them only a few days or a couple of weeks but depending on the dose and how long you’ve been taking it it can make you really very seriously ill if you reduce too quickly or stop suddenly. This is because the body’s own adrenal glands get used to the pred and they get “lazy and they need time to “wake up” fully. And sometimes they don’t which is why reducing slowly is the usual advice with very long term tapering for higher doses or longer duration. It can take months or years sometimes to reduce - I’ve been on them for years and usually taper at 1 mg every three months when trying to reduce longer term. I’m not a medic just a long term preduser who has experienced the scary effects of reducing too fast. But the symptoms you describe over past 7 days as you have stopped the pred seem too coincidental to me not to be potentially pred reduction related. My advice to you would be to contact GP, rheumatology or pharmacist ASAP and ask their advice. If they feel it’s pred related they may suggest restarting immediately, possibly at a higher dose then reducing much more slowly. Or possibly even a steroid injection to get you back to where you were more quickly. And if you feel worse please call 111 out of hours etc for advice cos steroid withdrawal can get pretty serious. I really hope I haven’t scared you but it’s potentially too serious to ignore. Thinking of you. Tillyxxx
Oh I’m so pleased you are ok with the steroids. Having experienced the effects of too fast steroid withdrawal myself I was v concerned for you. Really hope you get sorted re your biologic assessment soon. It seems utterly cruel to make people so ill just to tick the boxes for the biologic . I have not had good experiences at all with rheumatology over the years but thankfully that’s never happened to me. The assessment has always taken account of the steroids, recognising that without them I would qualify. Thinking of you Tillyxxx
I was on lefluonimimide plus Zamene plus Accoxel. Methotrexate didn't work for me.
I am now taking baricitimide and my consultant doesn't want me to come off the steroids yet. I am struggling a bit with chest infections but if it prevents horrid flare ups then I will put up with that. I also receive steroid injections into my foot but they can only be given a couple of times a year.
I also have osteo arthritis.
I had to be approved by the hospital to receive the new drug but it didn't take too long. We don't have rheumy nurses here so my appointments with the consultant are guarded like gold dust.
Being on steroids was no barrier to my receiving the new treatment.
I am glad not to have to inject myself.
Extreme fatigue is a daily struggle.
When desperate with the pain of a flare up I take Palexia.
Hi I have been on Methotrexate Prednisolone and Naproxen for at least 10 years which have all worked ok and in the middle of all this I tried biologics which made me feel great but had to come off this as immune system got to
low and I got loads of colds laryngitis etc but I would secretlygo back on them and give it another try if they if they would let me
Hi could I just ask you as thought was me going mad,been mtx since Oct last year ,had 6 colds and bad ones, last one with me at moment, never known anything like it,usually get one a year they bring horrendous cough and like that cannot shift, and had laryngitis which is not good as I am a singer lol...feel truly awful and wiped by these "colds" stopped mtx now till see rheumy on monday , feel immune system compromised. Does his sound like you were. Thank you Debra
Hi, sorry to hear what you going through yes I take methotrexate but it seems fine with me the only time I had all the things you are getting was when I went on biologics Enbrel and I had all the things you described horrible losing voice was really frustrating so rheumy took me off Enbrel and all that trouble stopped the only thing now is that I am getting more attacks from the RA which is slightly better than all the colds and things I wish you well
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