I've been suffering from flares in different joints the last few weeks , but my right hip is really painful , keep getting stabbing pains in it . Right knee is hot and sore and so is left elbow .
Rang rheumy nurse today and told her that I think enbrel has stopped working ( it will be 2 years in August ) I've been on it . Asked if I could see consultant earlier than my September appt but she said there really busy and arranged for me to get my bloods done . So went to hospital this afternoon to get bloods done .
She said she will see what comes back and then talk to consultant , I feel terrible and scared as I know they will be telling me to get my right knee replaced before I try any more drugs , but this pain in my hip is horrible .

Sophie x

Hi Jane
Had a horrible flare last night , only got to sleep at 5 this morning , my knee and hip have settled ( no shooting pains thank god )
Left elbow still hot so got ice pack on it
Mum came this morning and took son to school for me as I could not drive .
I was scared because I started to worry as my hip has not troubled me like that before and was thinking how the hell I would be able to get up and get moving when I do get right knee done !
When I went hospital yesterday I realised that it was 4 years to the day left knee was replaced ( thought it was strange as I pulled up in disabled car park and was looking up at the window next to the bed I was in last time )
Asked the nurse when I rang her why they say erosive arthritis now on all my forms , she said its because I have gone up a gear now and have a lot of joints badly damaged .
I'm 40 next year and when I had the knee op 4 years ago I kept saying to myself to try to get to 40 before any more ops .
I've tried Rituximab before Enbrel but it didn't work ( had two lots 6 months apart) consultant did it that way round as I am ANA positive for Lupus .
Resting today and going to try and have a sleep

Sophie x

Ps you do inspire me how you just went in for your knee op no worries and how you coped with it after

Well done !!

Hello
It's me!

I'm having my right knee done in sept
Left knee replaced in April last year

I'm 37
The hip thing I'm hoping might be better for me once the knee is done

For me, it's the sacral Eliac joint that's horrific at times
Plus the radiator bones in the bum!
Lots of spine involvement I'm afraid now :(

With the elbows they are reduced in scope a lot
When I asked the dr he said they could do a clean out and reduce the amount of bone in the joint
So not a total replaced joint from the off
I can't straighten either elbow
But have some movement in each

As for the enbrel, there are lots of options
Not least the tocilizumab
Keep your chin up xx

Interesting. I have no major problem in my knees but I do get radiated pain in my hip from my sacroiliac joint. For me, walking helps relieve that pain, So, you can see (I think) why the rheumies want your knees sorted out before they prescribe anything else.

Imagine that Jane that's would be fun !

Paul I can see what you mean .

Hospital rang this afternoon bloods are back and are normal ! She's got me an appt for Monday morning to see consultant.

Sophie x

Hi Jane

Once RA has caused damaged to any joint or joints, it is "erosive" ie it has caused damage to a joint/joints and started to erode it/them. This disease has no cure, and the best we can hope for is remission and if not remission then control through the various drugs available. Sadly, for many,joints become eroded before diagnosis and treatment, and there are others for whom it takes a long time to find the treatment which works for them. Again, in this case, joints start to erode. My RA was deemed erosive from the start and having had several replacements there are still many eroded joints even though I am now technically in remission. If this sounds strange, it probably is! I have spent the last year fighting a life threatening infection in my right replaced knee. The replacement had to be removed whilst I underwent IV antibiotics (6 different types) for 6 weeks and then spend 7 months in a toe to groin plaster cast. I had a hinge, various steel rods and bits of screws and what looks suspiciously like chicken wire put in 10 weeks ago and now feel wonderful. I have had no RA treatment for a year now (had to stop it when the infection started) and the specialists reckon that the infection was such a huge shock to my immune system that it has shocked it back to normal. However, remission is just that, remission, and there is every chance that at some future stage it will make its presence felt again! Goodness-I'm rambling g again, sorry, but don't worry about the classification of erosive, it's much more the norm than you probably thought. Take care

Hi Jenni nurse said its good news that bloods came back ok , but I asked why I'm getting pain in different joint that I don't usually have pain in ?!?! She said to come in and see consultant .

Good luck for Monday at your hospital appt ,

Sophie x

Oh Jean I hadn't realised things were so bad and glad to hear you are now on the mend. Do many folk get an infection with knee replacement and did you get the infection whilst you were in having the knee done?
With best wishes
Sheila

Hi Girls.

No Sheila, I didn't get the infection when I was in hospital. The joint was replaced some 13 years ago and was fine until a couple of years ago, when it began to cause big problems. I was given stronger and stronger drugs as it was thought RA was the culprit. Last July I collapsed with septicaemia and was carted off by the blues and twos! The joint was removed and debrided the day of admission and some two weeks later a further debridement was carried out. Apparently they removed over 3 pints of gunk!! The infection was caused by e-Coli believe it or not which is technically not possible! I had microbiologists and every Tom dick and Harry in the hospital wanting to talk to me about it. I had around 12 lots of med students talking to me as well, so became quite famous. With hindsight, I suppose my rheumy team were negligent in that they didn't refer me to a surgeon but hindsight is a very exact science.

Sophie, don't worry about infected replacements. I think the percentage rate is about 2%, I was just one of the unlucky ones! I try to be always positive but can admit to my friends on here that I DO get frightened the infection may return as I know it will probably mean either amputation or arthrodesis if it does. I am blessed with the most incredibly supportive consultant surgeon who has gone way beyond the call of duty to look after me. We actually got to know each other quite well whilst I was stuck in there for 9 weeks last year and again for 3 weeks when he put the hinge in 10 weeks ago. He gave me a huge hug when I was discharged! He's never had to virtually rebuild a leg before and spoke to surgeons all over the country for advice and help before he did. Amazing guy!

Well, off to sit in the garden soon and top up the tan and the Vit D levels. One of the joys of no methotrexate! Enjoy the weekend girls, and hope you are as free from pain as possible. Take care.

Yesterday I bent down to pick some thing up and my lower back went in to spasm

My back has not been the same since I had a spinal 4 years ago , it does trouble me on and off but has never just gone on me !

Took pain killers and lay down with pillow under my legs but this morning my back is still killing me , had ice on it every couple of hours ,

Has any one got any tips to help ??

Sister in law is taking my son to hers for tea and to play with his cousins later so might go to A&E they might be able to give me some muscle relaxers or advice .

Feel like I'm falling apart

Sophie x