Hello Everyone

Need a bit of advice/input from you all.

Diagnosed just over two years ago and put on sulpa........... Been told by consulatant for over a year that everything is OK and RA is undercontrol. I have questioned this on many occasions. I have tried several times to stop taking painkillers but I can't. I have told him that I think that the painkillers are doing the controlling and not the sulpa.....

Had x rays done last July and was told when asked that everything was OK. Things started to turn for the worse last September/October, I haven't been in loads of pain, nothing like I was when it first all started, but I knew that it was getting worse. Consultant kept saying that bloods were alright so everything was under control.

I was given a steroid injection last January and I don't know if you can remember but I went to Gibraltar to my daughters late Feb. I was there for six weeks and while I was there I noticed that rings on my right hand would no longer get on my finger. They could when I went but couldn't when I got back.

Not long after I got home I saw another doctor at the hospital, just a routine appointment. She asked how I was and I told her. She said I needed another DMARD and gave me a choice of two. She totally ignored the blood test results, just listened to me. I saw the nurse about three weeks later and I went for the MTX. I showed her my fingers on my right hand asking if I would ever beable to wear my rings again. She said No, I had unrepairable damage to all my joints on my fingers, I am thankful that it is not my left hand, at least I can still wear my wedding ring.

I saw the podiatrist last Monday, on advice from Lyn on here. He had my feet xrays up when I went in. I have got the start of damage to my feet, white lines on bones, early signs of damage. These xrays were taken July last year, my feet have got more painful since then, so what xrays would look like now I really don't know. I told him about my fingers and he was pleased that I had started on MTX if I had had such rapid damage to my fingers in such a short space of time.

I have been doing alot of thinking since Monday, imagination going wild again. I have not had what I would call bad pain in fingers or feet and this has happened. I don't know if I am comparing the pain I had at first, when I use to just sit in a heap crying to what its like now. I'm beginning to get worried about my knees, they are hurting and my left shoulder is getting really painful, these have never been xrayed.

Can you get bone ereosion without the swelling, just with pain? How painful does it have to be to cause bad damage? Is it worth me making a fuss about my knees and shoulder. What would you do?

Any advice would be appreciated. I am seeing the nurse again on Monday.

Paula x

Hi Paula

I'm sad to hear about the bone erosion. I can only tell it from my own experience, and, as Maire says, we are all different.

My knees and one hip had already been eroded by the time I was diagnosed, so I had them replaced. In my experience, once you have any kind of erosion, there will be pain which cannot be controlled by anti RA drugs. The damage has been done and it is up to the painkillers to do their part of the job. I'm afraid my hands and feet deteriorated slowly over the next few years, despite my being told by my then consultant that all was well!! I changed consultants and other drugs were added into the mix. My bloods are never low, but they seem to be the "norm" for me.

Right now I am feeling good as all the horrid sickness has stopped since I changed to mtx injectable. This in itself has changed my life somewhat. As for the bone erosion - well, who knows? I'm having more X-rays next month, so we will see.

I'm sorry I can't be more help - but I'm sure there wil be others who can.

Hope you are feeling a little stronger after your recent worry and upset.

Take care, lovely Paula

Much love
Jeanxxxxx

That's a pretty fair assessment of the situation, I would say, Carol
Jeanxx

Hi Paula

I am sorry for all the problems you are suffering with. Your post has raised some very interesting thoughts which I share with you as well. Funnily enough, I basically went from wearing rings one day on my right hand too and now nothing fits, except my little finger. On my next visit to the rheumy , if my shoulders are still giving me trouble, I will request x-rays like Carol has talked about ( thank you Carol for your advice ).

I hope that you are able to get matters sorted, and have some peace of mind.

Julia x

Thanl you Jean. When did you take your BCU 3*?

Hi Paula


Hi Paula

I totally agree with Ellie, try and take someone with you when you go next time. I take a close friend who understands how I am, it really does help.

Julia xx

I did the White Water assessment, Carol

Thank you all for your replies. I have waited until now to reply because I have been to see the specailist nurse today (6 week appointment since starting on MTX).

I told her about all of my concerns and this is what she told me. (Well what I can remember). It was an half hour appointment.

I asked about what normal blood test and disease under contol means. When they say normal it is not for a person who hasn't got RA, it is in the normal range for a person with RA, the disease being undercontrol means not progressing quickly. I will always have the problem of arthritis and its there goal to make things bearable for me and to slow down the damage as much as possible.

I asked about the damage to fingers and feet and was told that the MTX that I have just started should hopefully slow things down. You have the first xray done on diagonisis and then one year later to see if there is any damage, she still said that there was no erosion shown on x rays. You then have them on two yearly intervals after that. I asked about my shoulder and because the joint is so big and its like a ball and socket joint, any damage would not show up.

I have found out from the OT (I saw him first) that the body attacks the joints because the RA makes something that surrounds the joint (can't remember what he called it) inflammed and then the immune stystem attacks this thinking something is wrong, hence the swelling and fluid. The nurse told me that erosion can be caused by this inflammation so that's why you can get joint erosion without swelling and fluid, it's something to do with the cells. The OT also said that they don't like doing too many xrays because it's not safe to do so. I can understand that.

I don't really like my husband coming in with me. He asks if I want him there and I always say No. I don't think I could talk so openly about things if he was there. What he doesn't know, won't hurt him, I have started to talk about things more, but I just don't want to worry him too much.

I don't want any of you to think that I am in lots of pain, I'm not, it's nothing like it was when I was first diagonosed, but things are not as good as they have been.

Paula x x

Bone erosion in the hands and fingers shows up very clearly on x-rays Mari, I've seen it on my x-rays.

Glad you got some good explanations Paula. Is it all becoming clearer to you now? It is all very confusing when you are first diagnosed, in fact I didn't learn much at all in the 6 years I had it before joining NRAS!
By the way, it's the synovial membrane in the joints that gets attacked and inflamed.
I hope the mtx kicks in soon for you.

Love, Doreen xx

Hi Paula,

I just want to clarify if they saw erorisons in your x-rays or perhaps its bone thining on the joints which also shows up on xrays as a light white lines which I was told in my case is osteopenia of the joints wheni got with the 2nd lot of x-rays. I only ask this as in my experience with a brief time and so much information it can be confusing when you are having a consultation. Which is why I asked you about being told the joint damage is irreperable if it was backed up with a marker of some sort rather than an off the cuff remark. I am not sure that I would put to much credence on an OT and would ask my consultant as OTs look after a range of disabilities and are not specialist on RA.

When I make a fist my knuckles are abnormally prominent but with the drugs they went down quite a lot though they are still a bit prominent and boney and I was told it was due to nodules on the joint and probably wont go down anymore. Though I am not clear on this last bit. My finger joints so far have not been effected. I just say this as this so that you know that when mtx kicks in they may go down. However I have drift on both of my middle fingers though unsure if its the RA as could not get any confirmation on this.



Before diagnosis I couldnt even apply deodorant as it was too painful and any pressure or use of fingers and wrists were agony. Also with the heat although I am relatively fine my soles of the feet and my index finger is painful. The soles feel like I am walking on growths or sore swollen pads that I can feel are under the skin. Thankfully it has started to rain so this foot thing has eased. But then I suppose its a reminder that I have RA. I was told that my bloods show that I am in teh aggressive cohort but that so far my RA has been mild.

I have tendonitis too in the hand and wrists and my palms were lumpy and things seems to be ok now though tendonitis seems to be RAs companion. The tendons get so sore that it can be as painful and restricting if not more than RA, so hopefully the tendonisitis will ease off soon. It is a shock to be reminded that its progressive when drugs seem to be working fine. It good that you go splints and when things get bad for me I put on resting splints at night to help.

Take care

Mari