I was on Sulphasalazine, Hydroxy and MTX for four months but had to stop the MTX in February owing to two major infections, one of which required a small operation. My RA nurse said I was to be put forward for a new treatment plan, with a Biologic or Anti-TNF in place of the MTX. Then Covid19 happened.
In late March I had a phone appt with my RA nurse and told her how much I was struggling. I was diagnosed March 2019, when the RA mainly affected my wrists. Since October last year it has spread to my ankles to the extent that I often can't put full pressure on them, have to go up the stairs on my hands and knees etc. The nurse put me on a 4-week course of Prednisolone, as a temporary fix, saying I couldn't go on to a Biologic etc at the moment because the clinics weren't running. Unfortunately the Pred didn't help at all. Very disappointing - previous injections in the wrist and bum have really helped.
I am due to speak to the Consultant on the phone next week and I just wanted to ask if anyone has been started on a brand new treatment during lockdown? I really want to make the case when I speak to her that I am not managing, I am worried about the damage being done to my joints whilst the disease is running rampant and I am willing to do/go whatever it takes to try a new medication. I understand that there is a risk there, and how Covid makes the nature of the risk more complex, but I have hit my wall/limit and want to make a good case for a new medication. It would really help me if you could tell me your stories of the whys and hows of you starting a new (for you) type of RA drug during lockdown, and what this has meant for you in practice e.g. practicalities of blood tests etc. Thank you so much xx
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JoWa
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I don't know where you are but here there is a blanket policy no new treatments as there was no blood tests, but last week they came back through GP's so things might have changed.
Blood tests are certainly up and running in my locality, so that should not be any reason not to start on a new medication which requires more frequent blood tests initially. And I can't see any reason why you should not start on something new unless it needs to be given by infusion - that might be a problem for some hospitals if they don't have access to segregated facilities.
I had a recent discussion with the rheumatology nurse about biologics as like you I am struggling despite being on Hydroxychloroquine, Sulphasalazine and Methotrexate. We agreed I would increase my methotrexate and she said she would pop some information in the post about Biologics to discuss at a later date after discussion with the doctor. She called me back 10 minutes later after speaking to the Rheumatologist and said no Biologics would be considered due to COVID at the moment. She didn’t even mention we had discussed it in the clinic letter 🤷♀️
I was on MTX but it failed and have been placed on Hydrox, steroids and Leflunomide all within the last month but suspect I won't be on some of them for long as getting some side effects. The benefit of a pick and mix is at present I'm not sure what is doing what!! A biologic treatment has been discussed as the next move. I have had to carry on with blood tests & blood pressure (Lefluomide requirement) every 2 weeks at present - done by GP no problem as the nurse has full PPE on + everything is cleaned between patients. I think the concern with a Biologic as a new treatment is that it does make you more vulnerable for the first 4-6 months (or so I have read). I might know more tomorrow as I'm getting another call from the RA department. It's all so tricky at present as everyone is doing their best to navigate through all the relative risks with covid19. The trouble is our risks are as variable as our diseases. Good luck and let us know how you get on if you can.
Thank you; it does seem to be that the risk of starting a Biologic in the current climate might be one the RA doctors are not prepared to take. Could you give an update tomorrow after you have spoken to your Rheumatologist? I will post here once I have spoken to mine - it could be anytime in the next 14 days! My phone will be permanently glued to me.
I had an appointment with my nurse a couple of days before lock down . She had already cleared with my consultant to give me new medication as they thought I was more at risk from having a very active disease than starting new meds.
They seemed more concerned about giving me a steroid injection actually and asked if I could manage on oral alone than risk it . Blood tests were still happening though so expect that makes a difference .
Thank you. I'm in very much the same situation; the disease is active and spreading to new joints so it's good to see that starting a new regime is possible in these COVID times x
Hi JoWa. Sorry to hear you are struggling. I am in the same boat, symptoms been consistently worse for last two months with a couple of major flares. Spoke to RA nurse in the phone and she has said they are not considering any changes in medication whilst they are unable to run clinics. I am on a biologic, Benepali currently, and nurse said that in normal times they would have been switching me to a different Biologic, but not able to do this with Covid around - as others have said they are concerned about the increased infection risk in first 6 months of starting a new biologic. I’ve been offered a short course of prednisolone but trying to hold off this for as long as possible, as my understanding is that steroids would place me at high risk and therefore require shielding approach.
Please let us know how you get on, May be different approach in your area as I get the impression there is no national policy, more view of each Rheumatologist. X
Thank you, Monkeysmum. it's tough, isn't it? It's partly not knowing when clinics may start opening, offering a light at the end of the tunnel. Sadly the Pred did nothing for me - 4 week course, 15mg, down to 5mg. I will be sure to update this thread once I have spoken to the Consultant - she will be phoning anytime over the next ten days x
Hi ..l started my new treatment on Bellepali Injections this week which had been cancelled twice beforehand .my consultant told me to up my steroids with no affect. I then started getting high temperature with my infection markers being high ..l rang up again said l wasn't in a good place ..to be told l could start my new treatment this week ..l feel 50% better already..l was losing the will to live ..Good luck xx
Thank you, Swimming20. That's really good to know - that it is possible to start something new. I guess it's balancing the risks. I am really starting to go under now, so to speak, so hopefully when the Rheumatologist rings I can get across that I am not managing as things stand. All the best x
I have my infusion booked for Tuesday, I am on Rituximab, I had called to see if it would still be going ahead and was told they have all the safety measures in place. I suppose different areas have different rules but I was told there is more a risk if the RA isn't treated.
I’ve continued with my infusions throughout lockdown & it has been absolutely fine. Just wear a mask and continue to wash your hands - don’t wear gloves. Also if you have a bottle of hand sanitizer take this with you too. Good luck!
Thank you, that is what I am worried about - the damage that the active disease is doing. Especially my ankles which have gone from no issues to barely able to hobble about in 6 months. all the best x
The rheumatology teams have been told not to initiate new treatments during COVID, so you need to ask what they can do to help you meantime, stress how bad it is, and ask that you be started on new medication as soon as they are able to do it. Good luck, it's a nasty disease this one!
Thanks, Sue. I am hoping that if they can't do anything at present, then at the very least they can put a plan in place so that it will be all systems go as soon as they deem it safe. I think going on a Biologic has some administrative processes to go through to get approval, so I am thinking well that could be done now to get things moving. Best wishes x
I have changed the medication I am on during Covid and have still been having blood tests. So pleased they were able to change as I am already noticing a difference
I started a new biologic 2 weeks ago. Previously I had been on methotrexate both tablets and injections but developed terrible side effects. Then in Feb I was put on Amgevita. Once again I developed terrible side effects and infections. My consultant has been brilliant I can email anytime. She put me on a course of steroid tablets and arranged for me to have a blood test at home. I started my new biologic Etanercept 2 weeks ago and have only stopped the steroids today. I live in the North East of Scotland.
That's great, Knit. it sounds like your team are on it. i guess it does vary by area too - I am in Wales. I have e-mailed my consultant too, but no reply. But hopefully someone will have read it in advance of my telephone consultation in the next week. Hopefully it will get things moving. Best wishes, x
I had to stop taking Enbrel last November due to health risks and started a full flare of RA about Christmas. Saw Consultant in February who agreed to start me on Olumiant as it clears the system quickly should I have problems. I started this medication on 8th April ( so in Lockdown) and so far so good.Will have my first blood test in July at my local surgery. Hope this info help you to make your own thoughts.
As promised I said I would update this thread after I had had the phone consultation with my Rheumatologist. She rang yesterday and I explained how things had gone significantly down hill for me after coming off the MTX in February, in particular that the disease has spread to both ankles and further joints in my hands. Thankfully she offered me to be have an urgent F2F appointment in July at the hospital, to do bloods, DAS score and with the aim of going on a Biologic. I am so relieved that things are moving, I could have cried.
I am in Wales btw, where lockdown restrictions are still very much in place, although the First Minister has announced an easing of some restrictions e.g. opening up of non-essential shops from Monday, and further easing in 3 weeks time. It was just very reassuring to know that clinics appear to be slowly starting up again here. I will now wait to get the date through in the post and update further when I have had my appointment. Thanks everyone for your replies and support x
I am using Benepali (etanercept) weekly subcut injection which I was given some years ago (initially Enbrel) At the time I was like you with pain in wrists and ankles but also knees, elbows, feet and hands. I had been given a walking frame with wrist supports to help me get around. I needed help to stand up and sit down and could only manage stairs with difficulty and on my bottom. Couldn’t take lids off jars, even previously opened, couldn’t lift the kettle to make cups of tea etc etc
It was about 2/3 years of this before I qualified for biological treatment as I had to have two consecutive Disease Activity Scores (DAS) above 5.2(?) and I kept getting one then a none qualifying score from one particular member of the team. I wrote to the Consultant and told her what was happening and she stopped me from seeing this person...I got my etanercept. It was a long hard process!!
Since then I have regained 99% of my mobility and can now walk and do everything again. I worked hard too and had a lot of physio but it was so worthwhile...I do not have some osteoarthritis but it is relatively minor considering how my future looked then!!
Don’t give up. Keep positive and try not to worry too much.
Hi there, I said I would update after I had my F2F with the Rheumatologist, following a period of disease progression and being unable to access any new treatment during lockdown.
So, I saw the consultant last week and I have now been put forward to start on Tocilizumab injections. She gave me a DAS score, sent me for bloods and I just have to await a call now to tell me whether it has been approved and, if so, when to see the Rheum Nurse for my prescription. So a bit of a wait ahead, but my mood has improved so much just knowing that something is being done. I also had a steroid injection in my bum to tide me over. I was just really grateful to be seen and to know that there is a possible end in sight from the incredibly difficult last few months.
As an aside, it was a very quick appointment and from what I saw the clinics haven't opened up yet; the corridors that house the approx. 30 outpatient clinics were empty. Just the odd person here and there seated in the individual clinic waiting areas. Two people waiting for blood tests, whereas normally there are about 30. One of the nurses said that normal clinics wouldn't be opening just yet, and within Rheumatology they were looking into doing video consultations to start dealing with the backlog in a safe way. This is a large hospital in Wales.
Thank you all for your supportive comments. It has been tough for so many of us during this period of time. All the best, Jo x
So pleased to hear you seem to be getting somewhere now. I hope you get a teatime that works as well for you as mine does for me.
RA can be such a lonely place as even those close to you don’t really understand u the mental impact and frustration of the pain, tiredness and helplessness you sometimes feel, but it’s such a lift when things start to improve. I wish you all the best.
I had my first rituximab infusions last October and November but unfortunately it hasn't kicked in yet. Someone I know couldn't have her second infusion at the end of last month due to covid restrictions.
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