Damaged joints

[nanawilson]

Hi again I am so annoyed has anyone else suffered permanent damage whilst taking dmards I may now need ankle fusion too I just can't understand how I have all this damage while taking my methotrexate sulfasalazine and up until earlier this year hydrochloxoquirine or however you spell it tia

[Annie122]

Hey yes i had bone and bone pain on my hip to the point i needed a hip replacement and im on a biologic drug hope ur ok?

[nanawilson in reply to Annie122]

Hi 👋 thanks for reply it's stressing me out i am hoping to be on biologic s now seeing nurse on 13th I feel it's a bit like shutting stable door after horse has bolted tho 😩 My ex rheumy said she would consider me for them 2 year ago but never did . After suffering for about 10 year I only had first x rays 2 year ago !!! Sorry for rant haha xcan I ask what drugs you take now and are they working for you ?

[Annie122 in reply to nanawilson]

Hey no problem im on enbrel and pain killers when i flare up what meds are you on? Were are u from?

[nanawilson in reply to Annie122]

I am still on sulfasalzine methotrexate and hoping for enbrel in next couple of weeks I am from the north east x

[Annie122 in reply to nanawilson]

I use to take metho i hope enbrel works for you

[nanawilson in reply to Annie122]

Thank you good luck to you too 👍

[Annie122 in reply to nanawilson]

Thanks have u been on this support group long? How do u find it? I just joined today

[nanawilson in reply to Annie122]

I joined 2 year ago when I had first x rays and was shocked at all erosions in hands I haven't used it much but when I have found it helpful ... nice to know you aren't alone dealing with all this crap !! Ha

[Annie122 in reply to nanawilson]

Yeah so true it seems good so far it does really make u feel less alone

[Annie122 in reply to nanawilson]

My enbrel does help me but i still feel pain most days its just controls it a bit better x

[Nettac]

Yes I've had same problem on leflunomide. Told docs it wasn't working and it fell on deaf ears. Now both hips have gone. Waiting to see what's offered at next appointment.

I stopped taking the drug, as I could see no point in taking a toxic drug if it's not doing anything. Not suggesting anyone else should follow suit!

[nanawilson in reply to Nettac]

Thanks for reply that's exactly how I feel !!! You think you're taking these drugs to help then when your hit with all this itslike a kick in the teeth !!! Hoping to start biologics in couple of weeks

[Pat64 in reply to Nettac]

Hi Nettac,

I was interested in your post on damaged joints. I took Sulfasalazine for 3 years but still had some flares in hands and feet. I was then put on Leflunomide which has controlled the pain and swelling for almost 2 years but suddenly I've been told my right hip is now bone on bone. How did this happen? Is it RA, the drugs or osteoarthritis? Pat 64.

[Nettac in reply to Pat64]

Not sure Pat64. In my case the drugs just didn't work. I think for some folks dmards just don't work. I'm not sure if being seronegative changes things?

I have friend whose first drug was methotrexate. It worked, and she's been fine ever since. She has RA though, and I have PsA. More of my joints seem to be affected. For her it was mostly hands and shoulders.

[nanawilson in reply to Nettac]

Must admit that's how I feel at the minute but keep telling myself how would I have now been if I hadn't been taking them it's all so worrying

[farm123]

I had a TKR at 48 but had issues with that joint since I was 19. I know from experience when I had nearly 3 years when no drugs would work that I do need them to keep functioning even though I know my joints are still being slowly damaged. Farm

[nanawilson in reply to farm123]

Thanks for reply suppose I shouldn't be too shocked as I have had problems for a while with wrists hands feet but thought methotrexate was slowing everything down but now need both wrists fused and partial replacement and going to see ankle surgeon soon so quite annoyed and anxious 😩

[Annie122 in reply to nanawilson]

I wish you all the best with ur surgeries yeah it can all be a bit over whelming at times i was really anxious when i was told i had to get a hip replacement five years ago so i no how u feel x

[nanawilson in reply to Annie122]

Thanks

[Nain68cariad in reply to nanawilson]

Years ago I was told that I need my wrist fused but I did not then they got fused on it own

[nanawilson in reply to Nain68cariad]

Mine have been partially fixed quite a while so I have had to adapt to different ways of doing things so as surgeon says I am used to lack of movement I am also having partial wrist replacement I just want to ease the pain really

[Hidden in reply to nanawilson]

I have only just joined this site, but have been through a total wrist fusion on my left hand, and also left handed, I had my first operation 25 years ago after being diagnosed with kienbock's disease and had bone taken from my pelvis, 25 years on the pain had got so bad that no medication would help, I had total wrist fusion in october 2017 and pain free, however now in Jan 2018 I have full finger movement and the odd tightness I have adapted to this way, regular exercise and time will tell the tale, I wish anyone that is having this done to bare in mind it's a slow recovery but worked for me, good luck to all. Rod

[nanawilson in reply to Hidden]

thank you very much for reply when you say slow recovery how slow if you don't mind me asking

[AgedCrone]

Have you asked if the damage you have experienced is definitely caused by RA...could be OA which Dmards don'tbhelp?

[nanawilson in reply to AgedCrone]

Yes it's definitely r a damage thanks for your reply

[cheshcat]

My mom has always taken DMARDS and has severe deforming in her feet, hands and shoulder. (total shoulder done a few years ago and feet are just balls of toes on each foot).

She asked my rheumatologist how he's going to prevent damage like that for me and he didn't have any great answer. Just that I wasn't ready to do biologics but that I shouldn't have that level of deforming.

I'm going to keep pressing because I don't want that kind of permanent damage.

[nanawilson in reply to cheshcat]

Thanks for reply your poor mam I am hoping to start biologics in 2 weeks but as I say feel a bit like closing stable door after horse has bolted so you are right to keep pushing all the way good luck 👍

[cheshcat in reply to nanawilson]

Keep trying to prevent more damage for sure! She has a wrist fused too. There weren’t as good of meds back then and she didn’t get a biological until maybe 10-15 years into RA (she’s had RA 30 years). Biologicals weren’t around in the beginning for her. She just doesn’t understand why they can’t pull out some bigger/better meds early on for me, why I have to get damage before they pull out biologicals. I have two joints actively deforming right now and I see him on Monday

[nanawilson in reply to cheshcat]

Yes you would think if you are showing damage now is the time to act !! Even more so with your poor mam suffering as she has . Hope you get some help on Monday good luck 👍

[helixhelix]

I was told that the drugs slow down the disease, but can't completely stop it. I take MTX, Sulpha and hydroxy too and rarely flare but have had some minor erosions over past 7 years. It sounds like you have been very unlucky, but strange that you didn't feel it? With my feet it was painful and so I had a steroid injection into the joint which seems to have stopped it eroding further (finger's crossed!)

[nanawilson]

Hi thanks for reply oh I have felt it alright 😩 Have been wearing splints on hands and orthotic insoles for quite a while I think you just struggle on. My area are having a struggle with rheumatoligists at the min and as my bloods show low inflammation it's difficult I have had steroid injections in the past that have helped but because it's damage now and not inflammation they don't help at all.i have to say tho after reading posts on this site I am not feeling so sorry for myself 😀

[Nain68cariad]

Well, all these comments sure help. I feel a lot better after joining this group. I don't have much faith in the RA team yet can't do without them either. I worry if I had to go into hospital I won't be seen by them if I don't comply with them. So the story goes on. My mtx was increased from 5mg over the years and now I am on 25mg. Each time I visit Dr says need to add chloroquine then sulphasalazine. But the side effects were unbearable. So now only on mtx and meloxicam. No side effects. Now and again nodules spring up, the small finger base doubled up in size then they gave a steroid needle and it eased. But now the other small finger is tingling. Mtx causes nodules. Dr said chloroquine can cause retinal damage. I said I don't want to be blind as well RA is bad enough. She even once asked me to bring my family to discuss my medication, I am a qualified pharmacist for heavens sake. My hubby or sons don't have a clue about medicine. So my advice to people is see what works for you. Every BODY is different. Reduce stress. Do the things you enjoy doing. Do something good and wholesome and loving by word or deed everyday. It is hard but once it's done the results are great. As if the body settles down. Remember the ornement with the snow we used to give it a shake and watch it settle down. Our bodies are constantly shaken by out side forces. Mind agitated organs fighting to calm down.... I can write a whole book but must stop now. Feel better after the rant......

[AgedCrone in reply to Nain68cariad]

I so agree with you...I found accepting the fact I had RA, getting my head round what it meant & investigating what I...not my Rheumy....could do about it, lessened the stress one feels after initial diagnosis.

My attitude might sound simplistic...but it works for me!

[nanawilson]

Hi thanks for reply love your snow ornament theory like I say I feel better after reading posts on here too onwards and upwards ha I loved meloxicam when I took it but was told couldn't have it with methotrexate as increased risk to kidneys So now back on codeine phosphate which makes me to drowsy loving all these replies as you say nice to have a rant think maybe overdoing typing tho ouch ha good luck

[marie66 in reply to nanawilson]

I was told that too by a good but then rheummy said most patients use them in combo and advised restarting them. It sure helped with puffiness! M x

[Simba1992]

Reading the inputs on this forum and doing my research I really do wonder about the dmards. Evidently they do slow the disease process for some but there seems to still be a lot of patients that have very little benefit and what's worse they often have debilitating side effects and still go on taking the meds that are not working?! Who is the one who makes the decision whether to go on or stop? If the doctor does not have anything that will help and your quality of life becomes increasingly worse should the patient not take a strong standpoint in the treatment plan?

[marie66 in reply to Simba1992]

I don't feel much better at all and I'm now 2 years down the line I failed both sulfa and leftflunomide. I kept methotrexate as it is supposed to stop damage and I still inject it in hopes it may have helped slow the progression further down the road. Who really knows for sure! M x

[Simba1992 in reply to marie66]

I am so sorry. You could ask to have an mri to see what the situation is(?) Then you would have more than hope to go on. The doc should give you time to go through your situation, in my opinion. Xx Simba

[nanawilson in reply to Simba1992]

Easier said than done tho like I say I have only been x rayed twice since starting with this about ten year ago was always told didn't like doing x rays at this stage 😡 My doctor has told me he has people on his list waiting 2 year to even see a rheumy

[Simba1992 in reply to nanawilson]

So that his how it works in UK? I thought there was a law on the waiting time? I would imagine that you could take the mri privately also? Not cheap I can imagine, but if you get real info on your situation, perhaps worth it? Unfortunately going private is something many are forced to do.

[nanawilson in reply to Simba1992]

No just my area at the moment have a shortage of consultants he is referring elsewhere till it's sorted . I feel the care I have been given has been acceptable I have auto referral to my physio who has been fantastic with access to hydro pool at hospital I have occupational therapist and podiatrist when needed and when needed referred to orthopaedic surgeon I only had to wait 2 weeks to be seen I think it is just such an unpredictable disease I was in remission for a couple of years and perhaps I was overdoing it back then who knows now I just want to get these ops over with and hope for good results onwards and upwards and there is new research going on every day so I am told 👍😂

[nanawilson in reply to nanawilson]

I will be pushing everything a lot more tho including MRI scan thanks for your replies

[marie66 in reply to nanawilson]

My area inear Scotland too. It's currently 31 weeks for a non urgent scan! I've been waiting 20 so far! M x

[marie66 in reply to Simba1992]

I'm waiting on anew ultrasound scan ofyour hands before rheummy looks at biologics M x

[nanawilson in reply to marie66]

Good luck hope you get treatment that will help

[Nain68cariad in reply to Simba1992]

Yes we should. That's what I have been doing for the last 22yrs. The doctor doesn't like it. The nurse does not like it. But it is my body my life. I am trying taking turmeric now. A. Spoonful of ground turmeric with honey in hot water. See how it goes....

[Simba1992 in reply to Nain68cariad]

I think many docs and nurses have got it wrong. ULAR recommendations stress very strongly that treatment plan should always be done together with the patient. I f the patient kept as a passive bystander the results of the therapy will suffer. The doctors and nurses are there for you, not the other way around.

[nanawilson in reply to Simba1992]

Thanks for reply but looking back to my quality of life when this journey began before taking drugs don't think I'd have coped at all without them

[Jesnaskah in reply to Simba1992]

I am so glad you said this! I have been going nuts back and forth with my rheumy.

I have been getting all the "rare" side effects of 3 out of 4 DMARDs that I've tried and now they want to move me on to biologics. I haven't even tried Sulfasalazine. I said whoa! I still have one more to try, calm down and let's give it a chance first.

I am still dealing with neuropathy in my hands and feet due to Leflunomide and I have been off of it for almost 2 months. I hope it isn't permanent damage to my nerves. And even when I mentioned it to rheumy, she didn't believe me. I had to send her case studies. That's when I decided to take control of what I will and will not take.

In the end, it is OUR decision, not the doctor's. And so of course, while what works and what doesn't is different for each individual, in the end, the patient should be informed enough to be able to make their own decision.

A good friend of mine told me a story of an acquaintance. She had cancer and so her doctor prescribed chemo. Apparently, she had no idea what chemo entailed. When she was sitting in the room and people dressed in astronaut gear came in to administer her chemo (with a poison symbol on the bag!!!) she started to freak out and asked what they were doing. Okay, so I know this is an extreme example, and probably rare, but it makes the point. We need to take control of our lives and our treatment. Her doctor said this is what you need and she didnt even ask for an explanation of what it would do, etc. Sad.

I will be changing my health insurance soon and will find another rheumy. Hopefully one who can empathize a little more, and believe me when I tell her I am feeling things that I shouldn't.

Best of luck to you!

[nanawilson in reply to Jesnaskah]

Thanks for reply I am definitely trying biologics I don't have any other option really but reading through replies I could have been a lot worse without using dmards my physio tells me everyone is different some can have r a for 20 years and have minimal joint damage whilst others damage quite quick good luck with your journey hope you get the treatment you deserve

[Jesnaskah in reply to nanawilson]

Thank you, I appreciate it. And I'm hoping you have more success with biologics. Like with DMARDs, everyone's experience is individual, but I have read a lot of good experiences with enbrel and humira. Wishing you the best. Keep in touch. Let us know how you are getting along

[nanawilson in reply to Jesnaskah]

Thank you yes I certainly intend to after great response hopefully next posts will all be positive 👍 Take care

[Simba1992 in reply to Jesnaskah]

Hello jesnaskah,

The relationship between the treating doctor and patient, especially in chronic diseases is of such a great importance for the whole treatment process and it's success. Everyone knows this, and still it's here that healthcare is increasingly failing The patient often feels frustrated, helpless and anxious with her pile of meds. We know that the stress caused by such a situation is in fact detremental to health.

If diagnosis is solely made through collecting symptoms and then checking meds that may help with the symptoms, if this is all what is offered the patient then you really wonder wouldn't it be just as well for the patient to do the googling?

I am so glad you have taken the control over your situation. The doctors are there to help YOU, if you feel you are not getting the help you need, you need to find an other doctor. Trusting yourself and your feelings gives you strength to live with this difficult disease. All the best to you and good luck! Simba

[Nettac in reply to Simba1992]

Yes! I think docs often do their best, but when the treatment is ineffective I feel they become frustrated. My big issue is with not being listened to in terms of side effects and lack of drug effectiveness.

Steroids work well for me, dmards don't. It seems odd to me that docs are reticent to use steroids and yet are happy to put.p me full of ineffective, toxic dmards. Of course steroids have appalling long term side effects. However, I wonder if just having a shot twice a year is better than continuous consumption of a dmard that doesn't work? The steroid does at least stop the pain and swelling, which in turn allows me to take less pain relief.

I see rheumatologist end of the week. I'll ask.

[Simba1992 in reply to Nettac]

A good question actually. If you only need the steroid shot twice a year and this is sufficient for you I would definitely choose this over long term immunosupressants. Here I think is the point. The patient should really be given alternatives. They may not please the doctor but if this is the way the patient wants to go the doc should do his best to explain the effects of the options, to his knowledge, and then leave it to the patient to decide. The doctors are in a hard place too because they can not promise a cure and infact may with the treatment make it worse for the patient so the patient and the doctors both hope that something good will come of the treatment. I can well understand the frustration on both sides. I am really wondering if some patients in fact are over medicated?🤔

[Nettac in reply to Simba1992]

I believe so. At one time I was on about ten different drugs, for various things.

I think less is often more when it comes to medication. Don't get me wrong...some drugs save lives, and we've come along way. I've certainly been extremely grateful for antibiotics, steroids etc. However, I do think drugs are often handed out when other things might be useful. I'm not just talking about arthritis here. But, I also think that we as patients are sometimes to blame for taking too many drugs. I know I've wanted a quick fix for many ailments I could have fixed by other means.

Autoimmune disorders are a living hell. There have been times when death seemed preferable. I am grateful for the steroids and pain relief...absolutely! But increasingly anxious about the probability of biological medicine.

I'll try everything else I can first.

Rock and a hard place.

[Beviejon1]

Yes I've had several foot surgeries knee replaced and lots of others.You have to think how much worse would I be.

[Beverley_F]

I have just found out that I need a total knee replacement and hip replacement, Ive had this horrid illness for 30 years and the drugs were not as advanced as they are now. I'm on a biologic called abatacept now, if these drugs had been available back then I probably would not have the damage so for people just starting on this horrible journey of this condition there is the benefit of fantastic new medication. I hope all goes well for you. x

[nanawilson in reply to Beverley_F]

Thank you so much for that and you are so right it's a struggle but things could always be worse

[Hidden]

I remember my poor late gran, who had RA before any of the drugs we had were brought out. Her hands and feet in particular were very deformed. I think, OK, I might still be suffering even with the drugs, but how much worse would I be without them?

[nanawilson in reply to Hidden]

Thanks for reply yes my grandma was very deformed bless her and you are so right things would be a lot worse I just think it's a shock when you've been taking them so long sulfasalazine about ten year and only got first x ray 2 years ago you think you are quite controlled so takes some getting used to when you are told about all your damage never mind onwards and upwards

[Simba1992 in reply to Hidden]

Actually impossible to know. Not all have deformaties and meds do not work for all. It's always a risk taking☹️

[helenlw7]

I’m on methotrexate and Enbrel but need an ankle fusion!

[nanawilson in reply to helenlw7]

I am hoping to begin enbrel soon was damage already done before you started and has it helped thanks

[helenlw7 in reply to nanawilson]

Damage wasn’t caused before I started the Enbrel, and taking these drugs slowed down the rate of damage, but I do now have damage in my left ankle, my shoulders and some of my knuckles. The damage is less than it would have been if I hadn’t taken Enbrel and mtx.

[nanawilson in reply to helenlw7]

That's good to hear thank you so much take care

[helenlw7 in reply to nanawilson]

And you

[nanawilson in reply to helenlw7]

Sorry that is obviousley not good to hear about your damage just that the damage was less with taking drug 😩

[helenlw7 in reply to nanawilson]

I’m just glad that the damage has been lessened. My life was awful until I got the right balance of drugs.

[Jetxav]

Yes well I have been on various medication since 2005 when the rare auto immune disease 'Bullous Pemphigoid' suddenly appeared, despite the fact I was keeping fit at that time and best I had been for years. It meant massive very high doses of steroids and Azathioprine for almost five years, when it finally burnt itself out. High continuous doses of steroids left me with Glaucoma and, as the steroids were gradually finally reduced I was told they had 'masked' my Rheumatoid Arthritis + other things. Next came Methotrexate and all the other drugs were introduced that people in this site have had, including Biologics Rituximab, which all caused dramatic rashes, fevers , migraines and generally very unwell. I caught every bug going, so was then placed on Mycophenolate, supposedly in an attempt to stop catching all these coughs, colds, chest infections, plus many bladder infections. Until now I had no idea that these drugs possibly erode joints, as I am on a waiting list for s hip replacement and later (when recovered, which I'm told will be 9 months) a knee replacement. Is this partly due to all the drugs I have taken? ?

[nanawilson]

Hi I guess this is difficult to substantiate as has so often been the case I have been told where would I be without the drugs. Good luck hope things work out for you

[nanawilson]

yes that's been my problem too little too late