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Joint Damage Options
Paula-C
#1 Posted : Saturday, June 26, 2010 12:13:38 AM Quote
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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
MrsWoman
#2 Posted : Saturday, June 26, 2010 9:56:18 AM Quote
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Hi Paula,

Sorry to read about the joint erosion. I think that RA effects individuals differently. I remember reading somewhere that you can have no apparent symptoms and teh disease can still progress or you can have loads of pain and no joint destruction. Consultants usually take into consideration how you are feeling. I was diagnosed 2 years ago too and funnily enough when through a pretty bad period between end of September when I failed Mtx until febuary when 2nd dmard kicked in. I have aches and pains intermittently knees back etc and not RA. Dont forget that not everything is down to RA. However,I think you really need to speak to your consultant/nurse about you fears and write a list before you go. I would definitely mention the feet x rays and pains and perhaps ask about an updated scan/x-ray.

Take care

Mari
PS I was told I had signs of damage but it was tiny and not to worryabout it. HOwever if joints are eroding then they should try you on different drugs
jeanb
#3 Posted : Saturday, June 26, 2010 10:28:18 AM Quote
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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
Tabbycat
#4 Posted : Saturday, June 26, 2010 1:50:50 PM Quote
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Paula-C wrote:
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?

Paula x


I think you can. My shoulders and elbows have eroded, I have no cartilege left, but they don't swell like knuckles or knees. When my hips eroded I didn't get swelling. RA destroys the cartilege, then the bones rub together causing pain.

I don't think it matters what DMARDS and NSAIDS anyone takes, RA will be working away gradually eroding bones. How soon that will happen will vary enormously from person to person, there would be many factors to take into consideration.

As examples, although I've had it 39 years, I didn't have hip replacements until 18 months ago. One of my shoulders wore out over 22 years ago and I was offered surgery 12 years ago but I still haven't had it replaced, just tolerate the pain. When my C3 vertebra subluxed onto C4, I didn't get swelling that I noticed. I had an MRI scan which revealed swelling in my spinal cord.

If you're concerned, I'd ask your Rheumatologist to x-ray your shoulder and knees, if nothing else, it will be a marker, giving you both an idea what condition your knees and shoulder are currently in.
Carol
jeanb
#5 Posted : Saturday, June 26, 2010 2:57:24 PM Quote
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That's a pretty fair assessment of the situation, I would say, Carol
Jeanxx
lyn2
#6 Posted : Saturday, June 26, 2010 3:28:53 PM Quote
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Hi Paula

I'm sorry that you've got this worry. I find that while I've been on Enbrel for 4 years, I still have pain in my hips and feet, and sometimes other joints. I don't seem to have much swelling or joint stiffness, so I often wonder whether there is damage to some of my joints. I feel that very slowly damage is being done. Like you, the rheummy always looks at the blood results, and they are fine at the moment.

I think you should talk to your nurse about what is worrying you, she may be able to put your mind at rest.

Lyn
Julia17
#7 Posted : Saturday, June 26, 2010 7:09:24 PM Quote
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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
Lorna-A
#8 Posted : Saturday, June 26, 2010 7:43:18 PM Quote
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Hi Paula,

Sorry to hear of your recent worry with bone erosion, you have had enough to deal with without this. Can it not be anything to do with osteoporosis my neighbour had that and was on tablets for it, I know this can affect people at our age. Try to get x-rays done to put your mind at rest. Thinking about you and hope whatever it is settles down and lets you have a spell without pain. Lorna xx Smile
Tabbycat
#9 Posted : Saturday, June 26, 2010 9:48:15 PM Quote
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jeanb wrote:
That's a pretty fair assessment of the situation, I would say, Carol
Jeanxx

Thanl you Jean. When did you take your BCU 3*?
Carol
ellie99
#10 Posted : Sunday, June 27, 2010 3:58:28 AM Quote
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Hi Paula,

So sorry to hear you are suffering at the mo....it is so daangerous when a team solely reply on bloods to get a snap- shot of ra, I am lucky, since I have lupus and ra and blood work has always been on the low side dispite obvious erosions and swellings, my rhumey is very good and doesnt depend on just bloods. If I look and feel bad he adjusts my meds accordingly.

You really need to think about getting a different team......it is possible to be in pain and not under control when bloods are telling a different story.

Its imperative you make your team understand how bad you feel and act upon it. I always take my hubby and for some reason if he says Ive been awfull, my rhumey really listens to him and trys to adjust meds etc. Is there someone you can take with you?

You really shouldnt be suffering, ra is best attacked from many angles and this I feel should be with a minimum of two dmards, I have found this works better.

I do hope you feel better soon and get the help you obviously need and get the bone erosions under control soon

Much love Ellie x
Julia17
#11 Posted : Sunday, June 27, 2010 10:14:24 AM Quote
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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





Calmwater22
#12 Posted : Sunday, June 27, 2010 1:43:44 PM Quote
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Hello Paula
so sorry ehar the start of erosions,im told the pai isnt touched so much by dmards at that stage moroe painkillers.
id ask input more from rheumy nurse to explai thigns more clearly.
for me rheumy looks at bloods but only after he actauly asked me how i fel thigns are then examines me and from all 3 he goes for rounded view before making drug changes.
i found this so helpful,glad your on mtx now.
steriods dont halt progress of ra at all only calm flares down and reduce some of swelling.
thats where dmards come in ive expericence 2 dmards and also being on just 1 i felt the 2 did alot more for ra than 1 alone .


like ellie i also have ra and lupus,luckily ra drugs most of them can also be used for lupus.

so your question can ra errode without large swelling yes in some areas/some patients in does,from what ive read above anyway.
genlte hugs
melly
cuddly cats make my world seem so much more fun
jeanb
#13 Posted : Sunday, June 27, 2010 2:16:12 PM Quote
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Blink I did the White Water assessment, CarolRollEyes Huh
joeyvt
#14 Posted : Monday, June 28, 2010 11:40:34 AM Quote
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Hi Paula,

I get a lot of pain from all my joints but with very little joint destruction. My RA is characterised by very high levels of inflammation and low levels of destruction. So I'd go along with the others ... it seems to be different for everyone and I think the poor rheummy doctors have to try their best to work out what's best for you as quickly as possible.

Hope you get some relief soon!

Joanna
Paula-C
#15 Posted : Monday, June 28, 2010 8:09:08 PM Quote
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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
MrsWoman
#16 Posted : Monday, June 28, 2010 9:13:40 PM Quote
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Hi Paula

Glad you got things cleared up. I hope you feel better about it. Iam just curious about your hands though and wearing rings. Are your fingers just swollen or a bit nobbly. I say this as my fingers knuckles went well wierd as it large and then shrunk down again ? Though not all went completely down but say over 80% normal. Its just that it seems very matter of fact without doing a ultrasound to access the damage as with a u/s can show more detail than an x-ray and without the safety issues too. I would raise this with the consultant the next time you visit.

Regards

Mari
dorat
#17 Posted : Monday, June 28, 2010 9:23:03 PM Quote
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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
Paula-C
#18 Posted : Monday, June 28, 2010 11:32:10 PM Quote
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Mari

My finger joint just look bigger, like they have been squashed down, just alot wider. Thats the only way that I can explain what they are like. Sometimes the joints go a purpley/pink colour too. They are stiff when I first get up in a morning and it doesn't wear off like it should do. They do get easier during the day but still feel like I've got rods in them in the evening. Sometimes when I use a finger to do an everyday taks, i.e. switching on a light switch, pressing a button or even undoing my seat belt, I get a sharp pain, sometimes I squeal. It's when use them to put pressure on something.

If I bend both of my hands and make a fist, then butt the finger joints up to one another you can clearly see the difference in size, especially the middle finger, that looks even bigger than my ring finger. I think that even the top of my hand, just underneath my fingers looks broader than the other one.

Funny you should mention about the nobbly bit. I noticed this morning that the other hand thats Ok had a small lump on the palm. I had tendernitis in my middle finger a month or so ago, I had a gutter splint made by the OT for it, he felt to see if I had any nodules there, I hadn't at the time. I asked the nurse today what it was, its only small, she said it's come from the tenderntis, its on the tendon from that finger.

Paula
MrsWoman
#19 Posted : Tuesday, June 29, 2010 8:45:02 AM Quote
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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
MrsWoman
#20 Posted : Tuesday, June 29, 2010 9:19:03 AM Quote
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Hi Paula

What i am trying to say is that even though at teh moment your finger joints look abnormal they can go down particularly if you have tentonitis as that all adds more swelling.

Hi Dorat

I havent had an xray for a whle but I did have a lot of ultrasounds done on my hands and wrists. I suppose its worrying that damage is done so quickly. Unfortunately i failed mtx which is suppose to be brilliant at stopping/slowing the progression. I suppose I have to do what the consultant said to me and be positive and not think about it. Which is easier now as I feel better in my new hospital although I dont get monitored as much so I am in the dark so to speak. I am hopeful with all the research done they can fix RA without the side effects of the cure.


Mari
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