Question about joint replacements
I have noticed that there are several in this forum that have had and need to have joint replacements. Is it because the disease has been perticularly agressive and the meds have not worked or not tolerated?
I had a TKR a year ago at 48. This knee was my main joint 30 years ago when my disease first started. Since then many other joints have joined in but it kept blowing up. Had various arthroscopies, a lateral release and a synovectomy over the years but eventually last year after several drug failures, struggling to gain any control over the disease and resorting to using a mobility scooter I had it replaced and do not regret it (did at the time as I had to stay on crutches for 6 weeks due to a hairline fracture when it was put in). They said many years ago it would eventually need replacing but I was not expecting to be so early. Farm
You have really had a hard time, Iam so sorry for that. In your case as I understood, you did not have much help of the meds.
Although meds have not fully controlled the disease without them I would be in a much worse situation as I found out a few years ago when we were trying to find something to help. I struggled with everything - walking, cooking, dressing, eating but with Abatacept I am able to lead an easier (although not normal) life now. Farm
I had my hip replaced almost 2 years ago. It's not clear whether it was because of the inflammatory arthritis or not, because I wasn't diagnosed then. At the time, I was told it was degenerative damage, and I was just 'unlucky' to need one so young (48). But at my last consultant's appointment, when the rheumatologist diagnosed me with psoriatic arthritis, he suggested that was a likely explanation...
In my case most of my joint damage was done in years (8 years) before I went onto the Biologic treatments as I wasn't well controlled till then, I had to have a hip replacement at 40 and a few small joint ops since.
Are you well controlled at the moment?
Thank you for your reply. During those 8 years were you onDMARDs or any other medication? I am trying to get some kind of a picture of how well the meds work in general.
In thoae 8 years I was on Methotrexate along with various other DMards including Sulphazalazine, Leflunomide, Gold, Hydroxichloriquine and Penicilimine. I took Arthrotec 75mg twice daily with tramadol pain relief.
I spent most of the time failing the DMards because of various side effects. I even took prednisolone for a couple of years when the Hospital had run out of options.
Hope this helps!
Yes this really helps. Thank you. Evidently there are many of us where DMARDs do not help and where where we are faced with a lot of pain an agony for a long time where the progression of the disease has not been stopped with the meds. For many biologics come as a lifesaver. The point where biologics are given is evidently more a question of money than real need. At least this is how it seems.
Since DMARDs do not work for a number of RD sufferers should we not be given all the available information about the meds in the protocol, the statistics and also enough serious information about the effects and statistics of less toxic treatment alternatives so that we as patients can feel that we are 100% behind the chosen treatment because we understand what it means. This way we can feel less like helpless victims and more like being in control of our healing process.
Well I feel my rheumy has either given me the information directly, or told me where I can find it. She was very clear when I was first diagnosed that there is a set out pathway of treatment (which you can look up) that tries to ensure that people are given the most suitable and effective drugs for them within reasonable timescales. She also pointed me to ARUK if I wanted to know about diet and so on, but was quite clear that there isn't as yet much robust evidence for these treatments.
Biologics are so expensive that I think it's right that other drugs should be offered first, so I don't object as long as there is then no delay if they don't work. After all, for some biologics are a disaster!
Sadly there is always a difference between theory and practice, and some hospitals seem so overwhelmed with patients that they can't stick to the pathway. And even more sadly despite the new drugs some people don't find one that works for them.
I certainly feel that I have an equal share in my treatment, and am as much in control of it as my rheumy.
Thank you for your answer helixhelix,
I think you are very lucky to have a rheumy that has helped you in seeing the big picture. Unfortunately not many have the same luxury.
Yes, I wish everyone had the same experience. But it did take time to build a relationship with her, and I do think that we have to be good patients as well as deserving good doctors.
I'm very lucky where I live in that we have a specialist Rheumatology Centre which always explain the pro & cons of any medication we are offered along with ARC leaflets.
I was given the option to choose from 2 biologics treatments and I opted for Tocilizumab which is currently administered 4 weekly by infusion.
Have you been offered any of Biologic treaments?
I have 2 hip replaced and pins put in small hand joints yes it is very aggressive it is not as bad but still not controlled ,i am now on biologics.A lot of the damage was done in the early years
Thank you for your reply. Many say the same that the damage was done in the beginning. Does that mean that it took too long to get the diagnosis or the meds to kick in?
When the RA started 23 years ago the thought was to try the milder drugs first and there were no Biologics available, since then it has been decided to his the disease hard with the stronger drugs including Anti-TNF much sooner which if they are suitable for the patient will prevent the joint damage.
I have went through a lot of meds but they made me unwell or did not work for me .i am on Tocilizumab at the moment but i have to get that reviewed as that is not working well enough .
That's a $24 question if there ever was one & the reason why I become concerned when the diet only believers recommend their lifestyle choices. It's difficult enough to predict the course RD will take, add into that late diagnosis, for whatever reason...lack of symptoms or missed signs, & damage already incurred it can be a case of catch up & damage limitation, literally! Severity of the condition obviously dictates the treatment pathway but if the control is not there & inflammation continues to do it's best then damage occurs & necessary joint replacements are needed. Remember too that control of symptoms is not the same as disease control, whilst we can feel well it's not always a good indicator that damage is controlled & why Rheumy's still rely on examination, blood tests & imaging. It's important for a Rheumy to also listen to his patient, I can't emphasise how necessary this is. If my Rheumy had listened to me I'm convinced my arches wouldn't have collapsed causing no end of problems, one of many.
The disease is so variable, some people are managed well on DMARDs, others do not tolerate them & need to go onto anti-TNF's & biologics by which time having remained uncontrolled on DMARDs the likelihood of the need for joint replacements can increase. Unfortunately none of the meds we have available are without possible side effects, including ant-TNF's & biologics but that applies to all meds, not just those for RD, similarly for food types of course! But there is plenty you can do to try & help your joints, keeping to your treatment plan & eating a healthy balanced diet helps, ensure you're including enough protein, calcium & necessary vitamins such as B, C & D, ask your GP if you can be tested if you're unsure if you're deficient in any. Your Rheumy will be able to advise on recommended diets/foods to eat & to avoid.
There are also joint protection techniques & exercises you can do to help, ask your Rheumy to refer you to Physio or OT's have plenty at their disposal to help you.
By the way I was diagnosed seropositive in 2008 & I've not had any joint replacements. I also have Osteoarthritis & I'm borderline for osteoporosis, medicated.
I was told that my very creaky knees were down to osteo- and then another surgeon said that it was academic as to whether it was OA or RA. Well anyway.
I'm going for a pre op for my right knee soon and will ask them about how to look after your artificial knee. I did quite a bit of physio leading up to and after the op and it really wasnt too bad.
Well I had to phone the helpline yesterday to see what was happening regarding starting my Biologics , when they phoned me back they said that my specialist nurse was off long term sick , so where does that leave me I said to her, I'm not on any medication at the moment as I've had ulcers on my throat which was affecting my breathing , so they were supposed to phone me back today and guess what they still haven't phoned so 9 on the dot I'll be on the phone t my consultants secretary, the joint injections I got 2 weeks ago are starting to wear off already so I want t start new treatment soon
I have personally found that keeping your joints as strong as possible.. making sure that you do exercise every day .. even if you are having a flare make sure you keep your joints moving and strong.
Try not to sit down for to long basically try and move around as much as you can.
Ra unfortunately makes your joints very weak so the stronger they are the less likely it is that one will suffer from ra damage.
Also get some blood work done make sure that your calcium, magnesium, vit d levels etc are ok.
You may even want to talk to your dr about getting a bone density test at some point.
On a personal note I used to dance, box and take pole dancing lessons and all sorts of crap but the moment I stopped for while that is when my joints started getting weak and I ended up getting joint problems. Honestly even if you have a crappy day don't stop moving always try and do something even if it just some at yoga at home.
I had neurosurgery to decompress and fixate cervical spine at 38 and 3 THR's - first one had nasty infection and had to come out. I was 44 then. My RA is the aggressive type that keeps attacking despite being on meds and all joints are damaged. However, I was diagnosed age 6, back in 1971 and one of the first to go on MTX. Had I been much older, say 50 when diagnosed, then I'd be 95 now.
All my initial damage was done in the years before I was on biologics. Initially diagnosed pre-biologics in UK so was on MTX, steroids, diclofenac etc. Then went off everything useful have my daughters during which time RA was devastating. Since being on the biologics (2007 onwards) my RA is well managed but the erosion and deformities I already had are more pronounced and there is the knock on effects of severe secondary osteoarthritis (I am now 44) in many joints that were damaged.
Thank you for your answer. Here is where I would like to make my point. When you receive your diagnoses you start experimenting with the DMARDs. Unforunately they do not work for everyone and actually add to the stress caused by the dysfunctional immunesystem. I think many of us would benefit greatly if offered information and support on diet along side of the info on meds. Recent reaserch have shown the importance of a healthy gut in normal imunesystem function and the the many gut issues that are seen in patients with autoimmune diseases. Integrating knowledge could really make a difference for many patients. There are numerous cases where patients have been able to cut down on their DMARs and even left them all together after some time on AIP.
At my first appointment with my Consultant (3 months after diagnosis) he discussed diet & gave me what I suppose you could call a diet sheet, a sort of good & bad foods affair. it was basically what I ate anyway but he did recommend what to include more of weekly percentage wise & what I should think of reducing if that's helpful?
This is just it, the diet part should be just as serious as the med part. It should reflect the latest in research not just fragments. A diet that has proven to make a difference and that clearly addresses the gut issues in RD. The AIP diet and Wahls protocol are clearly diets that make a difference and could be seen as a valuable support when being on harder meds. It is sad that the medical professionals seem to have some kind of conflict on this issue instead of working together for even better patient care.
I should say I wasn't diagnosed in the UK but certainly the meds were discussed more frequently than diet after my I initial consultation, except if I initiated it. To be honest that's more important to me & I'm convinced it's those which do the majority of the work to keep me well. Proof if it's needed was not being on them for 3 months when I returned to the UK, diet alone didn't hold the RD back. But still I think eating healthily & avoiding processed foods if possible & as time permits is helpful as is exercise.
And numerous cases with no improvement. I was diagnosed with sero positive RA in 92 but my consultant thought it may have been bubbling away for a couple of years. In those early days they did not prescribe the heavy drugs that they do today but started out with the mildest possible. My RA continued uncontrolled. I bought into the miracle diets leaky gut theories in an attempt to get my RA under control. I paid for tests for dietary intolerances, bought books, spent hours in the library, you name it I tried it. (The internet was not really up and running at that time and you researched in libraries.)
It is the development of drug treatments since 2000 that got my RA under control and gave me my life back and halted joint damage. No diet I tried did that. Many of the folk on here who have had multiple joint replacements did not have access to effective drugs in the early years of their disease hence the permanent joint damage due to the erosive nature of RA. It is not the DMARDs or biologics that do the damage but RA being out of control. Often inflammation can be hidden and undiagnosed as with myself in the early days but it is still damaging.
I don't want to put you off your enthusiasm for following a dietary path, it may work for you, but it isn't the magical cure for all. Eating a healthy diet is important for health in general whether you have RA or not and yes fish oils have been shown to help reduce inflammation and some foods may aggravate it, but they are not cures. Research into RA and link to gut is being done and I await the outcome with interest.
Many other possible causative factors are associated with the onset of RA, smoking, virus', toxins, hereditary factors, don't be blind to these In your search for answers.
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