I posted on here some weeks ago when I felt that the combination of infliximab infusions and leflunomide was no longer working and I was hopeful my rheumatologist would change my medication. I live in Guernsey so only see her occasionally when she flies across. I honestly don’t feel like anyone’s patient in particular. Anyway, I saw her two weeks ago and she really didn’t listen to me or seem bothered about the burning pains I was reporting in my arms and legs as well as the extreme swelling and bruising in my fingers. This started well before Christmas and, at the time, she put it down to Raynauds. This time, she acknowledged it probably wasn’t Raynauds and wrote me up for an ultrasound, but her answer to changing the medication was that plan A would be to increase the leflunomide (I was only on 10mg but I am tiny and this medication has caused me to lose even more weight, I’m now only 6 and a half stones). Plan B would be to bring the infliximab infusions closer together- she just wasn’t listening to me at all. Well, I tried increasing the dose and lasted 4 days as I was in such agony , honestly, everything was burning and swollen. I saw my gp who was horrified and took me straight off it and put me on an 11 day washout treatment to get rid of the leflunomide and tried to make contact with the rheumatologist. This proved impossible as there was no direct line to her and apparently she doesn’t read her emails! Anyway, the gp has been extremely proactive and taken me off said rheumatologist’s list and got me and appointment with a new one coming over on the 13th. She also put me on 30mg steroid daily for 5 days and a short course of zopiclone as the pain was making it impossible to sleep. The steroid helps for a couple of hours but, unfortunately, by the end of the day the 3 lots of washout medication has pulled it out of my body so, consequently, I have a huge flare in my jaw and my hands are starting to swell again. I’m dreading tomorrow when there will be no more steroids left…To cap it all, I was born with a bicuspid aortic valve and had regular echocardiograms up until the pandemic to monitor it. Unfortunately, these have all been backlogged in the last couple of years and I finally saw the cardiologist last week. Well, you can imagine the physical state I am currently in (I’m normally a 5times a week gym person when the ra is well controlled). When I saw him, he dropped the bomb shell that my valve opening now only measures 0.6 cm and the operation to replace it is imminent. He is not known for his bedside manner and bluntly told me he didn’t think I would survive open heart surgery and that all the extra inflammation in my body might make the heart condition gallop so I could “drop off a cliff” (he has such a way with words). He is pushing for me to have a tavr valve through the groin but I really don’t want that as it’s very new technology. I want a minimally invasive surgery but all that has to be paid for privately here (Guernsey will only pay for straightforward open heart which means cutting through the breast bone). The only quote we have had so far is an eye watering £79,000….as you can imagine, that’s totally out of the question. I’m sorry this post is so long. Just needed to put it all down. I’d be grateful for any ideas as to what to go on to next - I’ve tried all the anti tnfs without much success. Well done if you got to the end of this!x
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Emye343
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We’ve used a private rheumatologist before when my husband was still working and we had insurance. It’s fine for the consultation but we then have to pay privately for the medication too, we can’t get it through the nhs, so it’s a non starter really, sadly. Thanks for the suggestion though!
That's an awful lot to deal with. I can only wish you well. Have you been on any JAKS? These are the newest type of drug that act in a different way to DMARDS and anti TNFs. Have a look at the NRAS medication booklet. I would strongly recommend you call their helpline too. Personally I’d be complaining about that rheumatologist but I can see that’s not a priority at present. Can you ask for more steroids?
Jaks were going to be plan C with the rheumatologist but they are strongly contraindicated if you are in heart failure and, as far as I can see (according to the tactful cardiologist ), I’m not far off unless something is done sharpish. So probably not the most sensible course of action at the moment- hopefully next time I need to change. I really need something that acts swiftly too to get the inflammation more under control before the op. Any experience of toczilizumab?
Yes, I think I will call the helpline too, it helps to talk if nothing else! Thank you x
I know my consultant has pre warned me once I have a full heart diagnosis I might have to Come off baritcitnib as does not work well with some heart issues.
I wonder whether you can request an NHS rheumatology appointment with another rheumatologist on the mainland. My sister is in Shetland and goes across to Aberdeen for consultations when needed. She even gets her travel paid. Even if you have to pay for travel though it may be worth the expense. Regarding the TAVR, my dad had this done at the age of 90 and it worked really well for him.
Yes they are good if you have a normal valve and they tend to use them on aged people as they are pretty new technology and not really for people in their early 60s from what I have read. Still some way to go in their development. Also, because my valve is bicuspid, the fit isn’t as tight because my valve is apparently more oval than round (fish mouth they call it!)
The problem is that Shetland is still part of the uk - Guernsey isn’t so the government pays for a contract with Southampton whereby a couple of rheumatologists come over occasionally on a private basis additional to their work In the nhs. There are no rheumatologists actually based here either, so no one gets to know you as an individual really. X
Is there any way that you could get an NHS referral to the Royal Brompton in London ?
We were told yesterday by our super Consultant there ( he’s treated us both for over 20 years ) that my beloved 86 yr old husband is a candidate for TAVR , through the groin . I’m still getting my head around it
thanks Alessa. The only place Guernsey has a contract with is Southampton general and, from what I’ve been able to discover, they don’t offer minimally invasive aortic valve replacement and, if they did, we would still need to pay privately.
I do hope your husband comes through his Tavr procedure without a hitch! X
Just wanted to say I am glad you have been able to share this with us as it really sounds like you have so much going on and it can get overwhelming to say the least. Where do the rheumatologists fly from? I was wondering this because if the consultant is based the UK would you qualify as a UK patient to receive treatment/surgery? I'm not well versed in this kind of thing so excuse me if this is not the case. I remember when I was staying in Guernsey some years ago now a local lady telling me that you paid for GP consultations at the time. Sounds like a fresh pair of eyes as in another consultant is a good idea. I do hope there is a solution for you as the stress from all this wont be helping your health. Take care and sending you some supportive wishes xx
The rheumatologists fly from Southampton but we only have access to those contracted to Guernsey. I will be seeing a new one next week and am trying to come furnished with ideas as to a new medication!
I’m most worried about the heart issue at the moment but realize they are intrinsically entwined. The first (and only) quote so far for minimally invasive surgery was mind blowing! Still awaiting others but wish I had a timescale Of some sort. X
Thanks for letting me know what the situation is regarding the consultants. I wished there was some way around it for you. Good idea to be as prepared with ideas, questions etc as you can be for the new consultant. Keeping my fingers crossed for you. xx
Oh Bless you. No wonder you are feeling down. There are a lot of points in this post but I will try to give you some support. Thank goodness you have a GP who knows what they are doing. It sounds like your Rheumatologist needs to retire. I am glad you are being changed to a new one. I think you should go back to your GP and tell him/her how you are feeling now. Your weight is a concern and needs to be discussed. Unfortunately, Consultants tend to be very brusque and don't pull any punches but when you think how many people they see there really isn't time for TLC although they should still be polite and sensitive to how people are going to react to the bombshells they drop. As for the heart surgery, he can't just say you won't survive the surgery then just leave you to it. Consultants are not God although some of them think they are. You are entitled to a second opinion and you need one. Do you have any medical insurance that would get you a private appointment? If not I would pay for that then you can get a better picture and make a more informed decision. I can only offer you my best wishes and prayers for a good and acceptable outcome. xx
thanks Sheila. The pains have got much worse today as I expect, on day 7 of 11 for the washout! There’s not much helpful medication left. We have no health insurance as my husband is retired. Gp appointments are £62 a go here, so nothing is free! My gp thinks a second opinion is not really worthwhile until we have more of a timeline and can choose a surgery to push ahead with. Just feeling so absolutely rotten today: it’s no fun!
Hi Emye343 I know what it's like to feel like you're not listened to and to be given information without explanation. At the very least you have a gp who seems to be very proactive. Also, perhaps you could have a formal word about the completely inappropriate language the cardiologist is using?
thanks Brychni. I have told the gp. Unfortunately, he is well known for his “lack of tact” but we don’t have much choice here - the penalty you pay for living here if you have a chronic problem. My 3 sisters are all in very good health - I seem to have pulled the short straw!
I’m really hoping the new rheumatologist is empathetic at least. I need medication that will work quickly so that the cardiologist doesn’t see me in my current state - I can hardly move today. X
Oh, you do have a lot going on. You asked about experiences with tocilizumab. I have been on this for 5 years and it has worked really well. I feel it is maybe slightly losing its effectiveness now but I’m still doing ok.It does send my neutrophils down quite low so I just inject once a fortnight. I’m not sure about how it might interact with heart problems. I was on methotrexate, Sulphasalazine and hydroxychloriquine when first diagnosed but for various reasons had to come off them at different times. Then I was switched to leflunomide. Like you, I lost lots of weight on it and went down to 7 stone. I ended up seeing a dietician to try and get my weight back up! I took it for a year but it wasn’t really effective on my RA. That was when I was moved to the toc. I really hope you can get some effective treatment soon.
thank you! Interesting to hear about that medication. As far as I’ve been able to discover, it seems to be ok with heart problems. I need something that acts fast, but I know we all react differently to medications. I feel very much out on a limb…x
Hi, I can’t offer much advice as I’m new to this battle (as it seems at times) myself. I can understand your predicament and just wanted to say I hope you manage to get an understanding rheumatologist who can get you in control of the inflammation and that you can get your heart problem sorted the best you can. It’s good to get it off your chest, keep us informed, I’ll be crossing everything for you 🤞…
First of all so sorry to hear your issues. Falling off a cliff is something we all do with RA but the choice of words when you live on an island is extremely unhelpful! I would take this all back to your kind GP and put it into their hands. Good luck my lovely 🌺
thanks Green. Currently debating whether to ring her secretary (and to fork out another £62 to see her) if there’s nothing she can do until I’ve finished the washout. Wish I’d followed my instincts and never started the leflunomide after a disastrous 3 years on mtx. No point in crying over spilt milk though…x
Just put as many questions on a.piece of paper as you can think of- each one is just the cost of a magazine! You are worth 62 quid think of it as an Easter gift! To you and your sanity 🌹
phoned her secretary- the gp is on a half day! Will get back to me tomorrow morning. Just had a long chat with a lovely lady called Sarah from the nras helpline. Good to talk it all out anyway. X
Hopefully you have a decent ra consultant now, I had a useless one checked her feedback on trust pilot 12 feedbacks all negative, I told her ehat I thought of her, and walked away and lodged an official complaint. I now have a great consultant, if you look on the web at the jak inhibitors and variouscdrugs write them down and ask the consultant they often appreciate you putting forward suggestions, good luck.
Hello I am really sorry you have had all these negative experiences Sometimes things seem to hit all at once then comes a period of calm so lets hope yours is around the corner. I am glad you have a new consultant appointment and definitely do your research and have some ideas. You need something new ASAP. Steroids are useful while you wait for the new treatment to kick in. They should be used with care and you should always build them up and down not suddenly start and stop Also I know the GP was trying to be helpful but RA disease modifying drugs of any sort are build up too and you should never stop them instantly so the GP was remiss in that and has given you more problems but at least she organised the new appointment. Do not leave the room until you have said everything you need to and have a result! Some consultants are good at getting you out of the room before you've finished although some are great and do really listen. Its luck of the draw. Never feel bad about second opinions. It sounds like you need the RA under control before an op but I don't have enough knowledge on the cardiac situation but don't give up just be knowledgeable and assertive[but polite] In the meantime arrange a few things you love even if they are a while ahead.
I inject tocilizumab weekly and have found it pretty effective in controlling my rheumatoid. It worked much more quickly than my previous biologicals, too, and hasn't caused nerve problems (unlike Enbrel, which permanently damaged my left leg). If you can get your rheumatologist to prescribe, it might suit you. Best wishes for resolving your medical predicament - RA is the gift that keeps on giving, especially when you're trying to cope with multiple health problems! I wish you well. XX
how dreadful sibilant! Thank you for telling me about your experience with toczilizumab. I didn’t get on particularly well with enbrel either, but at least it didn’t cause any permanent damage. I am in extreme pain tonight. Currently wondering whether coming off a 5 day dose of 30mg without being given any ability to taper is adding to the problems ….x
I don't think it will have helped - falling off a cliff isn't advisable for any meds. I sympathise on the pain - my left hip has flared up (I've missed a couple of injections due to an infection) and I now have numbness all the way down to the sole of my foot, accompanied by severe hip pain (worse at night ☹️). I have to laugh when I catch sight of myself hobbling about. The unpredictability of RA is one of the hardest things to cope with, but after 40+ years of it I've found that stoicism and a sense of humour work best for me. Plus the occasional tipple! XX
poor thing! I do hope it eases off and you are able to get some sleep. I’ve decided to move into a bedroom downstairs tonight as there’s no way I’m getting up those stairs tonight. The fun will come when I need the loo as I can’t even stand up without my husband’s help at the moment and getting his attention when he’s upstairs and fast asleep will not be easy! X
I'm glad your GP at least is pro active, I'd speak to them again about going on a lower dose of steroids. I appreciate with imminent surgery this might not be a possibility. It's likely that you would have to come off RA drugs for surgery so it might be worth focusing on your heart.
No Brainwaves regards that....but I suspect your cardiologist just lacks tact and they probably wouldn't be going for surgery if you're risk was very high.
It's very exhausting dealing with all these medical challenges. Sorry we can't be more helpful.
Hi Eyme, after reading your post and the replies, I can't really add much other than my advice about tapering from prednisolone. It's always considered best to taper slowly especially after a high dose. I've found tapering down, even from 10mg is difficult for my body. It can affect your mental health just as much as physical. It definitely messed up my mental health when my GP tapered me down quickly over a fortnight. Since then, when I had to go through the process again, the Rheumatologist had me taper extremely slowly . It was reduced by 1mg every fornight so it took 10 weeks. Sending healing thoughts and wishes to you xx
thank you! I’m feeling a bit better now I’ve gone back on it I order to taper down - I think some doctors don’t necessarily take account of how sensitive our bodies can be. I was definitely in a mess yesterday: couldn’t even stand up on my own. Very thankful my husband was around!
yes, I wouldn’t like to be facing all this on my own. I’ve got a possible date for heart surgery now, but we have to wait 6 weeks for the steroids to clear my system….always something! X
Oh it sounds as if you are having a really difficult time with no support , I really don’t know what to say as I feel most of us are just left to get in with our own care , I rang over 5 weeks ago , I had burning in arms , pain everywhere still haven’t heard from them . I pray you will get some help , some of these professionals have no compassion now it’s not what you say , it’s how you say it , we just need them to listen , good luck .👍
you poor thing Angel!Have you still got those burning pains? I have them with the leflunomide induced peripheral neuropathy.
I’m hopeful that the new rheumatologist I’m seeing on Thursday will be more clued up and sympathetic. The heart surgeon today told me that I can’t go on a new medication before the op now as I have to have a clear gap of 6 weeks to rid my system of it and a similar amount of time afterwards to allow the breastbone to knit back together: I’m going to be in an interesting state! X
just sending a hug as a lot going on there but we hear you and sometimes being heard is so good for the soul just a pity so many consultants don’t have this ability x
It’s an age thing I think. I would have hoped to have a conventional valve now and a tavr via the groin in 10-15 years when the valve fails. However, Guernsey won’t pay for tavr either and they are apparently currently even more expensive than ohs as they are quite new technology.
We’re in Australia and aged pensioners and all hospital and medical is free, so no fee for the procedure. Hope you get the help you need and feel better soon. Xx
sounds excellent Lozz. It would be free on nhs in uk too, but I live in the Channel Islands where we pay privately for everyday healthcare and there is a limited contract with the nhs, but that only covers procedures like full ohs surgery which my oh so tactful cardiologist told me I might not survive. We are stuck between a rock and a hard place…
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