Has anyone else had a similar experience please? Had rheumatology appt (with a doctor at last!!) he injected my right wrist with a steroid but said I may never get movement back in it. My wrist has been really really bad since xmas and I've kept telling the nurses when I go - I got an appointment with the occupational therapist but the doctor appt came first. I am so annoyed. If it had been treated earlier maybe I wouldn't have lost the use of it... Also I said again that the MXT was still not controlling the RA - though to be fair it had taken some of the swelling down. I was told that when the dose was increased from 10ml to 15ml you go back to week 1. Meaning that it could take another 6-12 weeks for it to work. Despite the fact that I had already taken 7 weeks of 10ml before it increased - surely that must be in my system? It feels like whilst I'm waiting for MXT to work lots of other things are going wrong ie my wrist, dry eye, jaw problems, and now osteoporosis (due to all the steroids I've had since last October). I'm now back to waiting and waiting... so frustrating. The doctor said I might need an op to fuse wrist - costing the NHS more money for something which could have been avoided. Yet they refuse to give biologics when the disease is first diagnosed for monetary reasons. It just doesn't make sense to me. Sorry for the rant but am just frustrated and worried I'm being fobbed off.
Confused and angry - not sure...: Has anyone else had a... - NRAS
Confused and angry - not sure...
Can you see a rheumatology physiotherapist at your hospital? The times rheumatologists have said to me I would lose movement etc and the Physio has helped me regain good mobility and use of joints. Don't give up.
I will ask if there's a rheumatology physio, thanks for the advice.
Sorry for your troubles and I agree, why give meds that cause horrid side affects and don’t often work especially over the long term when there is a newer drug readily available that appears to work better. I don’t know, saving in one area then costs more overall. I don’t think rheumatologist really know how to treat these diseases, it’s hit and miss with the drugs available it would seem to me and anyway, they only treat the symptoms not the root cause being the immune system. Wouldn’t it be just wonderful if there was a holistic approach to our health worldwide, I can always dream on. Hope you get sorted out soon and some relief, wrist fusion is serious, physio would be a good idea as neonkitty suggested. I know certain foods that I haven’t really pinpointed make me flare up badly like today, every joint hurts.
Thanks, I agree an holistic approach would be wonderful!!
They have to start you on MTX and dmards to start with to see how it works with your body. You can't go straight to biologics I am afraid. Yes there is a cost involved.xx
Yes you are right! Doctors also do not tell you the side affects of these harsh drugs! You have to read the info that comes with your rx, boy will you be surprised. Taking there harsh drugs can cause other health problems, this means, seeing another doctor, more tests, more Rx’s. No wonder there are so many doctors! If you take a Rx the doctor prescribes and it does not work, you are left with pills you have paid for. I took methotrexate for almost a year, for psoriatic arthritis, it helped with the arthritis, but still had psorisis with an awful itch, plus hair loss. I no longer that methotrexate.
Hi. What do you take instead ?
Mine discusses any med extensively before prescribing them! I don't consider any med harsh if they are required & control or work for me adequately enough. Whilst it's true they are complex they have gone through 3 stages of trials before being licensed, the same can't be said for natural products, they're not necessarily risk free & can be bought by anyone, all from unlicensed sources. They too can cause liver damage & even kidney failure as they may contain heavy metals (mercury, arsenic, lead etc) & chemicals which are toxic, those promoting them never warn of the dangers of these ingredients though, only those of meds. What's even more concerning is that the recommended doses given on the packaging can cause harm. The issue is in the manufacturing of natural products, they don't go through the same rigorous testing so consideration needs to be made that many of those not in their natural form (ie made into tablets or capsules) also go through a manufacturing process & with the addition of these potentially harmful ingredients they step further away from the literal name of a natural product.
Although I haven't lost the movement in my wrist, a recent MRI showed extensive synovitis in my wrists and feet. I'm on a waiting list to have wrist surgery when I'm off steroids and am well enough to cope with it. I've been unwell for 2 years , hot, achy, stiff, sore and been on a merry go round of drugs, although it hasn't been so merry for me.
Finally have started biologics.
And the answer is , yes, better drug treatment should be offered to begin with, but biologics are expensive and some people do well enough on cheap alternatives like MTX.
For folks like you and me , we most probably do cost the NHS more in the long run, but they save on the folks who do well on MTX.
I believe there is plenty money in the magic money tree we just use it in different wasteful ways: bonuses and salaries, excessive admin, poor use of people time, poorly trained staff, but that's all a different story.
The damage done in the meantime is not accounted for, as far as I am aware. Hopefully biologics will become cheaper over time and new meds developed, but for now we must go through the system. Unless you are wealthy or a medic that is, the you get preferential treatment.
Frustrating ? Don't get me started.
It really feels like RA is the poor relation in medicine. I wonder if there is any other chronic, disabling condition where the approach seems to be to give everyone the cheapest drug and ask them to stick with it for months even if other related complications appear in the meantime which end up costing more money to treat, because the RA isn't being controlled? I happened to have an appt with a RA nurse around xmas time who said that in 30 years of RA nursing she had never seen an awareness/fundraising advert on TV like the one Versus Arthritis ran in December. That's a start! I feel like we need to get our voices heard, I just dont know how!!
I think that cheaper drugs are given to people wherever possible saving the NHS etc and I am sure others here with additional health complaints may be experiencing that. I have Graves Disease (overactive thyroid) and take Carbimazole tablets which are awful to swallow as they have no coating they go fluffy and stick in the throat. My Endo said that's how they are .. Cheap and mass produced .. But they actually do the job! As the drugs we are given are trialled and tested to rigorous standards it isn't that we are being given rubbish as such, but I know people who have been allergic to change of brand due to the binding elements/ stearates/powders etc in them. You can though have just as many side effects on expensive meds for your RA. I did with a £500 time a shot anti TNF drug and another similar med did nothing. The rheumatologists used to start patients on Sulphasalazine when I was first diagnosed in 1995. Then Methotrexate was the next med to try. I have had both. Both worked very well for me but as time goes on your RA can get used to med and the med loses its efficacy. Many biologics are currently being replaced by cheaper biosimilars too to save the NHS money. Many people on here have told us of their experiences and opinions on that (myself included!) I agree that it is awful when you experience a side effect on a med which you need to be able to function and find yourself on another med for that side effect. It is often luck of the draw with what suits you or doesn't. Due to the NICE guidelines we have in the UK the rheumys are not allowed to get approval for the next drug unless you have proved you have given it a certain length of time to prove it is starting to work. That's unless you have a severe reaction or allergy. I had that with Enbrel and was changed almost right away. The protocol for biologics was basically you had to have failed Mtx and one other DMARD and also have evidence of joint damage/swelling via your DAS/examination and blood tests. Mine were all crazy so I qualified. I haven't seen the TV ad if it is in the UK? I don't have a TV!! Mmrr I hope your biologic works well for you. Sorry Dobcross for your frustrations. Good luck guys xx
Thank you. Venting on here to people who understand really does help.
But MTX has so many side effects for so many people, and of course once on MTX your response to biologics is changed forever...noone tells you that pre taking MTX. I certainly wasn't and was unaware at the time of starting MTX, and I'm reasonably well informed.
NICE guidelines do try to create a standard and level playing field , but that doesn't mean MTX should be given to everyone, just NICE says it should. It is a catch 22 situation that has been created.
Wealthy people and medics are treated differently by the medical profession, biologics being a first stop shop. There are reasons behind these decisions !
That said I had a good response to MTX, it was the side effects that made me stop, but i should have been informed of the potential future issue with biologics. A medic should not be making those decisions on my behalf, unbeknown to me. We would not tolerate that behaviour from anyone else !
I know that's another of my frustrations! I did know that response to biologics was compromised by taking MXT so thats why I asked about biologics when diagnosed and discussing starting treatment. Flatly refused.
Now because of this perhaps trieing doxymycin instead of Mtx as a firstline treatment since it would spare the illeffects of Mtx. It has been shown in research that monotherapy with Doxy is just as effective as Mtx monotherapy. So why in the world are doctors not giving patients this option?
Hello, Mmrr - Can you share your knowledge on how taking MTX changes one's response to biologics? I had never heard that before.
See below
I have never been told to take anything tbh by my rheumys. They suggested meds and let me decide amongst a selection of these similar meds what could work for me ... always been that way .. but told me what was most beneficial to patients and then I met people taking the meds and made the decisions myself so been lucky that way. Do you mean that biologics won't work as well if you've been taking Mtx or that if you stop Mtx when on a biologic then it will fail? There is someone I know who has done the latter and is doing fine with their biologic as a mono RA treatment. I mean it was approved by the rheumy and not stopped by the patient! We shouldn't suddenly decide to stop a med with no consultation with the rheumy. One of my GP's feels Mtx is not my friend and would like me to stop that. Says it is one med too many. Not the one that is holding off the RA. Agree .. but he is not the rheumatologist ... This is not one too any med for other people as combi's work well in many cases. For me.. undecided.
I don't think Drs tell people to take drugs, they offer the next , but often very limited step in treatment, and again often without explaining potential consequences. You only need read the posts on this site to appreciate how common the practice is.
I've stopped several of my DMARDs because the side effects have been too great, I would not wait on a Dr telling me it is ok to stop putting chemicals into my body that are making me unwell, I don't see that as their decision. But I do I form them of my decision immediately through the helpline. I'm not suggesting people stop medication.
The best option for 'drug free' remission is aggressive treatment early in the disease by biologicDMARDs. I have tried to find the article I read about a less likely remission from biologicDMARDs once MTX has been used but I can't source it right now. I'll again look tonight. There will be others on this site who have more detailed knowledge than me.
But a prolonged time on a variety of DMARDs, before biologics are used is less likely to give remission. However there is some evidence, far from conclusive, to suggest using low dose MTX and a biologic together do reduce antibody development to the biologic. However the evidence is far from conclusive and several, of the studies I have read, lack control mechanisms. The reality is no one really knows, but biologic treatment as a first choice seems to be the best option, based on the knowledge we have now.
Of course some people get very good control with DMARDs, but the outcome is unknown before the DMARDs are tried!
A catch 22 situation with the practice we have now.
Totally in agreement with you Mmrr.
I would not suggest people continue taking things that are obviously harming them/making them allergic etc .. totally not .. been there myself with allergy and reaction and I have done the same and phoned and said I had to stop Leflunomide/Enbrel today as I am being sick/have huge areas of irritation and swelling all the time. Keeping them informed. Try find the med asap that works well for you, Often though people give up on meds when they have the slightest side effect and that's another issue. I had a friend give up quickly on Mtx as he said he wasn't allowed to drink the large amounts of beer he was used to ..... I wish I could have had my current biologic many years ago but it wasn't invented then. I had to go through a few oral DMARDS and two anti TNFs before I got to where I am now and yes I've suffered widespread joint damage with failing meds. Catch 22 .. you are right. Maybe with so many biosimilars being made now there is a chance for patients to be offered these much earlier in their RD.
It's the fact that we have to suffer joint damage whilst trialling the meds which I find really hard to accept. It really doesn't feel like we have a collective voice in regard to meds - I was definitely told what I could take and that nothing else was a available to me. We are usually so ill at the time we take what is on offer... well that's what happened to me.
I meant when Dobcross had said it's Mtx or nothing ... meaning being told what to take.
I was told it was MXT or nothing!
I was so unwell at the time of starting MTX, that I saw it as my potential saviour, and to be fair it did improve my quality of life manyfold. I had to stop due to side effects, now on biologics, early days. But I wish I had known before starting MTX that I could be undermining possible future treatment.
I rant often about the medical profession, this is an example of one of my complaints. Can you imagine another professional you employ making life changing decisions on your behalf without consulting you first ?!
Dobcross, this seems harsh and seems they want you on Mtx. Is there another rheumatologist at the hospital who might have different opinions? I know if I felt so bad about being on a certain med my rheumatology team would offer me alternatives. It's your wellbeing too. However, as Mtx is one you need to show you have tried before you qualify for biologics, that is awkward. How long have you been on Mtx? I have never noticed going backwards each time Mtx was increased for me, quite the opposite. Sorry you are going through all this.
Thanks so much for your help and support. I appreciate it. Been on MXT 10 weeks but only on 15ml 3 weeks. On Saturday the dr said I need to give it longer to work. He did accept that the damage to my wrist the dry eye and osteoporosis (due to steroids I've needed since being diagnosed) were a direct result of the MXT not controlling the RA yet. Others on the forum have said it can take MXT 3 months to kick in so I'm still hoping. I think it's the irreversible damage to my wrist that started my rant!!
I am sure I was told that Mtx has to be taken for 12 weeks minimum to satisfy the guidelines but that was quite some years ago when I started it. It took about that time for me to feel improvement (12 weeks I recall) but maybe a little longer for full benefit. It's also often hard to know what is working to control your RA if you have steroids too. I understand re your wrist. I'm sorry I hear that. It isn't a rant at all from you. Quite controlled! I have several deformed fingers due to not being able get in for an RA infusion due to too little space in the infusions clinic. Heartbreaking. Infuriating. For us all when this happens. Keep trying to do what's best for you and don't give up as it can be so wearying but in the end you'll know you've done all you can to try get the best for yourself. X
Thanks again. The support on here keeps me going!
When diagnosed here in France I was told that takeing Mtx first was the only way to get biologics. Yesterday I went to see a gastro who wondered at one point why I was not on RA meds. I told him I never wanted to take Mtx and then they did not want to help me. Oh he said you just need to find the right rheumie and they will just jump over the mtx!! I wonder if this is true?
I didn’t find that Mmrr...I was on methotrexate for seven years and then had to stop & then after six months I went onto Rituximab in 2016-and that has been very successful. I haven’t taken any other drugs apart from the odd naproxen or paracetamol since I started the Rituximab. I am now mostly pain free with the odd hiccup,& have just been told I can now have it on demand...... hopefully only once a year.
I think everybody has to walk their own path with each drug they are
prescribed.
Many of us have other unrelated conditions that will affect the success of RA drugs.
Unfortunately, although they try their best, rheumatologists can’t always foresee which drug will work 100% for each person.
No one can know whether any drug will be effective or not, but the medical profession do know the potential issues that we might come across, which should be explained to permit an informed choice to be made. Sometimes patients want the Dr just to get in with it, that's fine too, but you start from the position of asking patients?
Unfortunately these days the time it would take to explain to the majority of patients what X,Y,Z drug is aiming to achieve,would take up the allotted time for the whole appointment.
I know when I had cancer the oncologist had a written explanatory note of my alternative chemo drugs with their side effects....but there weren’t many, where as with RD drugs the list appears endless.
That is where this site comes in so useful people can ask their questions here and somebody has usually got the answer. I have always found the rheumatology nurses are excellent at explaining the ins and outs of the drugs we are offered.
But until more rheumatologists are trained we have to muddle on.
I'd be happy with a rheumatology nurse explaining the main issues to me, or a pharmacist, or any other knowledgeable person. But not telling the big potential issues is not justified and most probably would not hold up to challenge. In fact ut is probably illegal. This site is amazing, but it does free the medics giving the big picture information. You wouldn't let your bank make decisions with your money, or your decorator choise the colour of your paint, why a Dr with your future ?
As the average time you get with an NHS rheumatologist is 15 minutes tops I expect rheumies make a decision how much to tell each patient from their experience as to how previous explanations have been received.
We all know that trying to explain to someone who will never ‘get it’ is pointless....especially when newly diagnosed, people are in pain & scared & as far as Mtx is concerned it would be interesting to know how many people offered it actually never accept to have it, because of the horror stories they have heard.....which may never affect them.
I think there is something wrong with a system where you are offered one drug only at the start of your treatment and, whilst waiting months to start treatment and then to see if it works, irreparable damage is caused... yes, it's all down to money as we've said but it's a bitter pill to swallow (pardon the pun!)... For me personally that has been the bigger issue.
I think you will find the majority people with RA are offered Dmards as a first line treatment.....once they get to see a consultant rheumatologist.
Sulphasalazine seems often to be the first Dmard prescribed once a Definite diagnosis has been made...there is no point giving these sometimes unpleasant drugs until the doctor knows for sure RA is Present. If you mean being offered only one drug only you think more than one should be offered at the start, that is usually down to how each particular doctor approaches treatment.
It can be seen on this site how many people often refuse these drugs on first offer because they have read how unpleasant they can be.......Methotrexate being one that is often refused....despite being an old drug it is still considered a so called Gold Standard drug & many people do very well on it with protected joints for many years.
I think the much mentioned lack of consultant rheumatologist & the wait for that first appointment is the reason it takes so long to get a firm diagnosis & being prescribed suitable drugs.
Yes, that seems to be the system. Apologies if I've repeated myself replying to various posts - think I've exhausted my rant now!!
Yes AC, but the slow, one size fits all doesn't work for many, many people and causes so much damage, for what? How much is actually saved ? (Apart from considering any human cost, lets leave that aside for now).
Perhaps if GPs were adequately trained in common MSK issues; we had quick snappy consultant appointments on a one day diagnostic stop shop, which has been spoken of in Edinburgh but never funded to get off the ground ( but once up and running would costs no more then now). Appropriate treatment started within weeks rather than months or years, some people might just might be able to continue working, even in a part time basis, and hence contributing rather than taking from the system.
I was an above average earner and hence contributor, now I access benefits and will do for the rest of my life. Through tax and NI I was easily paying in the price of yearly biologics and more , but now I take out, I cost the state a fortune. Had I continued working until my retirement date Imy contrubutions would have funded biologics for nearly 8 years.
I counted that I had 166 appointments to the NHS, including GPs, phlebotomists, rheumatologists, plastic surgeons, podiatrists, neurologists, endocrinologists, chest physicians, nurses and so on. The latest average out patient cost I could find was £120 an appointment, that is nearly £20k in appointments alone. My biosimilars could have been funded for 2 and a half years for that money. Many of these appointments were concerning side effects of medication, or deteriorating problems with RD.
Then there is the cost of repeat MRIs, CTs, Xrays, steroid injections and so on mainly due to deterioration. And the cost of my 2 FOI requests, due to poor care, otherwise I would not bothered; and my complaint over waiting times; I'm guessing but let's add in another £5k, a little over half a years biologics.
And the cost of HDQ, SSZ, metojet, lab costs for weekly blood tests (yes) , PPI, antihypertensives, antibiotics, steroids.....many for iatrogenic issues. Another few grand perhaps ?
So at a very rough and ready count, I see 11/12 years of potential biosimiliar funding going down the swanny. And possible surgery on my wrist, if I can ever get off steroids. What a disgusting waste of NHS resources.
My money is on more of us doing well, at least better and costing the NHS and DWP no more if we were given good care from day one. The reserach base is strong in this point, the evidence is there, early aggressive treatment gives the best option for drug induced remission. Biologics can be compromised by prior MTX usage.
I have 2 letters from my new consultant, one which acknowledges sub optimal care and another apologising on the length of time I was kept waiting, last year and into this year. What a waste of the 2 prior years inadequate care, and the salary paid to the previous consultant too. And don't get me started on excessive admin and nonsense protocols.
We get the type of care we expect and accept.
Rant over too.
Oh wow Mmrr, you have put into words everything I was trying to say so so eloquently and sensibly. Thank you.
Unfortunately the many like you and I who contributed to the NHS during our working lives is getting smaller and smaller,but those needing treatment who have often not contributed at all, is getting larger and larger-so unless those paying in now pay more - things will not Improve & recruitment of all staff will get harder & harder.
The situation is that politicians think far more of how they can earn more by keeping their jobs than how to improve the service,
& think we will vote for them if they don’t increase NI contributions...& often they are right.....but that has been said for years & nothing is done.
It is almost inevitable that the NHS will have to start charging at point of use, & no matter how unpopular it would be,the public will have to take out some sort of top up insurance like they do on mainland Europe.There already schemes like that in operation here.
Not Private Insurance like in America - but if some top up isn’t added the Quality of treatment provided by the NHS will inevitably go down...... and waiting lists will get longer.
Yes, particularly with politicians and other high paid decision makers. They suck our system dry and we let them do it.
Nothing is inevitable if the will is there to change it.
Too many people accept poor whatever.....so it remains poor.
And it doesn't change the fact that poor care can end up costing more money in the long run.
Unfortunatel’y although the clinical expertise is there - but to bring our NHS up to the standard we would like will cost money and lots of it,and the only place it can come from is the public because that’s where all the money comes from, so we just have to pay more
I remember about 10 years ago various businessmen were brought in to do an efficiency study on the NHS ....all of them could have saved the NHS £millions - the report was ignored .
If the grey suits were halved & and the clinical staff doubled and paid more there might be a chance of bringing the NHS back to the standard we remember-but I can’t see it happening any time soon .
We get 20-30 mins with our rheumys. Seldom do I need more than 5-10. When you are stable of course you need less. When I was ready to start another med I was given literature and advice in a separate appointment with the rheumy nurse. Then prior to biologics it was an hour appointment with the biologics nurse specialist to talk it all through. Take home three biologics packs with DVDs and literature and then another smaller appointment to arrange the X-ray and blood/TB tests. My hospital is very good the way they counsel you before meds. I wish more were able to and also have a dedicated biologics nurse specialise.
Crikey...... I think most on here would settle for that in a trice.
When I lived in London we had service like that but once I moved away from the big city I have found rheumatology is definitely the Cinderella speciality, and more often than not you see the rheumatology registrar rather than the actual consultant.
Don’t tell anybody where you live they will want to move there!
It is very good and I'm so thankful. That is the good side of things. The pharmacy and some of the admin are poor at times and let me down in 2015 badly, and the rheumys had to come in to save the day, so it's half wonderful and half .... rather frustrating. That's being polite! We are never left more than 4 months for a rheumy appointment as they say we have to see someone every 4 when on biologics, so I feel very frustrated and sad for those who've said here they haven't had/can't get an appointment with a rheumy for 6-12 months. 😖 I don't mind the Registrar every other appointment if I see the consultant in between. Usually there's not much to say but ... feeling well? Bloods fine and lets just check out your joints. Then anything else to report re the meds or change of dose etc and off I go. I like to be off asap, as often there are patients who need longer. I've been there myself too.
Yes, a new post would be beneficial. I've written what I know below
My understanding is our immune system can develop antibodies to biologics or biosimiliars (bDMARD) and therefore making them ineffective. There is some evidence to suggest taking MTX alongside the bDMARD reduces the likelihood of the antibodies developing.
That's what my rheumy nurse said too. Not always the case as I said as I know people do have a biologic as a sole RA medication. x
😖
I have a similar issue with my wrist and I was told biologic treatment was based on a scoring of inflammation/number of affected joints and knuckles. It sounds as though you meet the criteria - can you possibly switch to an alternative hospital under the right to choose and book? Salford Royal are very good
Thanks for your reply. Yes I'm pretty sure I'd qualify on the DAS score but I haven't failed on 2 DMARDS (yet!!). I asked my GP in January to be referred to Manchester Royal Infirmary which is supposed to be good and last Friday I got an appt letter for 25th June so until then I have to stay under Oldham.
Hoping they can help you more in Manchester RI. Good luck.
Thank you.
What are you taking for the Osreoporosis? TheROS also have a group on here, we'd be happy to see you on there. 😃
Thank you for the info I'll have a look on here. I'm due to see my GP on Thursday the recommendation said Alendronic Acid, Calcium and Vit D. I rang the NOS helpline today as I'm concerned about taking Alendronic acid as a known side effect is hairloss and I already have that! One thing the NOS nurse did say is to take my time and maybe get the RA under some control before starting and further medication and not to feel pressured into taking meds at the moment.
Please read info that comes with the methotrexate! I quit taking this because of not helping with my scalp psorisis.
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