Do the specialists care about knees and ankles?

[stbernhard]

I was diagnosed with RA in December 2009 after months of misdiagnosis. Like most of you I have experienced this condition as really shocking, painful, restricting and it made my live thoroughly miserable. Affecting not only me but everybody around me as well. In the last few months my condition has improved considerably. I am very lucky that the joints in my hands and fingers are now the least affected, but my main problem are still my knees and to a certain extend one of my ankles. This stops me from doing all the things I loved doing most. Walking, cycling, swimming. The specialists and nurses seem to focus on hands, wrists and upper body joints, which is understandable in a way. When I press them on what can be done to improve the knees, they appear quite non-interested. Has anybody had a similar experience? Does anybody know about depot steroid injections into a knee? Any tips or exercises to improve muscle strength around the knees?

I have much more to say and am very willing to help others in any way I can, so more another time. Be positive!

[Hidden]

HI willyb

Sorry to hear you are struggling. I cannot advise, but can commiserate. I have similar problems to you and similar reaction. When I told the rheumy nurse about my knees she said Oh I think that is probably osteoarthritis, not RA and that was that. Presumably pain for OA is acceptable!! Good luck with the struggle and I hope you get some help very soon. Sue

[Hidden]

feet/ankles don't seem to be taken into consideration when you have RA I don't really no why and yet they can be some of the parts most affected. Have you seen a podiatrist? who deals with RA patients they are very helpful and will most certainly help with your ankle problems. As for your knee if its the same leg as your ankle one can affect the other, you can have steroid injections into your knee and they can help some people, be persistent with your nurse or specialist as they can refer you for some physio or even to see an orthopedic consultant. let me know how you get on and as you say, Be positive. x

[Tricia-P]

Hi

We are a positive litle bunch this morning, it must be the sunshine,I always feel I can climb mountains when it's like this then remember a mole hill will probably see me off beacause of the right KNEE and ANKLE, you are both right Mand and Wonky is that nickname beacause of your knees? I diverse, when they do the Das score they only do the upper joints thats fine beacause I can still score 5.6 the latest 2 weeks ago, my first Das 2 yrs ago was 5.1 a year later with Humira 3.1 now as I say 5.6 but what would we score if they put the knees ankles and toes in?

See there trying to make us feel better by only using the other 28 joints is that what the DAS score is and which joints count we need LynW on this, I'm pretty sure she will know.

[Hidden]

Here I am!

The DAS used in rheumatology units is the DAS 28. This involves assessment of 28 joints in the hands (10 each), wrists (1 each), elbows (1 each), shoulders (1 each) and knees (1 each). Each joint is checked for tenderness and swelling and scored on a chart accordingly. There are other DAS methods available, DAS 56 and I think, DAS 78. It was found that the DAS 28 provided very similar results in terms of synovitis in the joints representative of disease activity throughout the body as those used for checking many more joints. Obviously the time involved in checking 78 joints is rather more than 28 and it is now standard practice to use the DAS 28 method.

Feet are not included because it is inevitable that in most people there is going to be a degree of damage and are most likely to 'feel bad' anyway because they're in constant use.

I have severe damage to both feet (metatarsal heads have been removed) and ongoing knee problems. I'm hoping (that sounds daft!) to be having radio-isotope synovectomy of the knees, if that can't be done or fails it will be replacement time. I have had both knees aspirated and injected with steroid regularly but this tends to be a temporary reprieve only. As the synovium thickens it becomes difficult for the steroid to reach the actual knee joint hence the need for synovectomy. Physio can offer a good selection of knee exercises that are appropriate to you and that's the important thing Just any old exercises could do more harm than good! Definitely worth trying to get a referral Willyb. My clinicians have always considered me as a whole with no particular preference to specific joints unless required. Think you may have to be a little more persistent! Good luck,

Lyn x

[Neonkittie17 in reply to Hidden]

Oh my I could get so angry about feet being disregarded in this. It's so so wrong. Good luck with your knees. Both mine need replacing.

[Gina_K]

Hi,

I have had my right knee injected a couple of time and she took some fluid rheum stuff ugh off, it was instantly better and has'nt given me much trouble since. My right ankle and foot were agressively attacked in the initial onslaught of the disease, I started with palindromic arthritis settled down to bog standard RA tho!!! Anytime I get swellings my Rheumy just drains and injects drains and injects - she can bill my health insurer for more if she does, it really helps and TG my bloods are normal now and just have permanent damage to wrist and ankle. Hate having any type of steroid put in because of the long term damage to bones, but what can you do???