knees

Hallo Linda,

Sorry about your knees and the walking problems. I and others have found the pain moves around. I have had PMR twice and the pain is completely different this time being toatally absent from my arms which first time were so painful I dreaded anyone touching me. This time, although there was some shoulder and neck pain the worst were my legs; thighs, knees, calves and, yes, I do have to ration the walking. Not too bad on the flat but hills and even slopes are best avoided, I find. So far it has not exited through my feet I love your hopefulness!! :run That's us when it goes out through our toes )

My second bout began in Feb 2008 and has been a roller coaster.

I know how infuriating it is to be stuck on a dose for yonks when all we want is to get off steroids completely. It does happen but is never a straight line curve if you understand me. 3.5 is really quite a low dose ( I am currently on 8.5 ans aiming to reduce by 0.5 per month. So far not too bad but going from 9 to 8.5 as of two days ago, I am not quite as chipper as I was last week. Others will confirm that this is not unusual and often a couple of days patience and fortitude is all that is needed. but not always and sometimes we have to increase the dose again.

[size=18:b98b41b134]Eileen,[/size:b98b41b134] you suggested this to me when I wrote about what felt like groin strain. I decided to hang on and the pain is lessening by the day so perhaps it IS just groin strain. Plenty of opportunity here to strain anything.

[size=18:b98b41b134]Linda[/size:b98b41b134] So this time I was ok but from past experience I now know it is not worth suffering if an increased dose will help and, believe me I learned the hard way and was very grateful for all the info on this forum

I also found that there does not seem to be a very high correlation between the dose and the persistance or return of the pain. Sometimes quite a big drop is ok and others just a fraction will make a difference.

You might want to look at my first time reduction schedule. If you scroll down to Reducing below 3mgs I think it's there

Keep coming back. You will hear from lots of other sufferers. We all talk a lot about ourselves it seems but that is the whole point. We are not professionals but we ARE experts in how we feel and what has helped us. Good luck and best wishes. BettyE

I finally had to bite the bullet yesterday and call my Rheumy about the pain. He told me to increase to 7mg [I was down to 3].I went and had blood taken so I should get the results today to see whats up.

3 years ago [I was 59] the worst illness I had in my entire life was the usual cold and sore throat, I exersise everyday [bike riding], do not drink, quit smoking when I was in my 30's, now its been PMR, colon cancer last year [caught in the very early stage by a colonoscopy], ostioperosis [theres no spell check on this site] from the Pred and now I came home from a bike ride and found a lump just below the breast bone which hurt like you know what. So its off to see the doc again today.

I was going to delete this, I just needed to write it down because its so frustrating, but it is so nice to have a forum that is full of understanding people going through similar problems that I will post it. I read this through and its way off topic, sorry about that.

Well I am glad you did. I do hope you get on ok at the doctors it sounds like you have had more than enough to cope with and If it helps rant away. The good thing about this site apart from all the information you gather (I learn something news everyday) is you can say what you like you dont always want to keep ranting at your nearest and dearest.

Take care and best wishes.

Linda

A close friend of my husband once said that if, after the age of 50, you wake up in the morning and nothing hurts you are probably dead...

Have just read the entry regarding knees with some interest. I have not posted for some time as I have been gradually improving and managing to reduce the steroids down to 3.5 and have even tried 2.5 on alternate days. Two things have happened: firstly as I have reduced to low dosages the pain in bed has increased when I try to turn over and my sleep pattern is more disturbed but I am much more mobile as soon as I get up. Secondly, the last 2 days I have pain in my knee which I have never had throughout the 4 and a half years. I started by thinking I had twisted it but it is now the end of the second day and it definitely feels more like PMR. Looks like I will have to up the pred doses again! Good to see this seems to be the most active site on the Patient UK database. I have put several people in touch with it and its always good to hear about how other sufferers are progressing. Thanks for all the info. Greens

Hello Greens and it's good to hear from you again and especially to hear how well you have been progressing since we talked in London when we met up with the PMR Fighters.

What a shame that you have suddenly developed knee pain but I'm not sure that I would rush to up the dose again if I were you after just a couple of days especially as it is only one knee and it has never been a symptom in your 4+ years of PMR. Do you think it could be a strain that you haven't been aware of doing or even osteoarthritis as unfortunately arthritic conditions can arise from PMR? Could you perhaps try sticking at 3.5 for a while longer and then try tapering slowly to 3 rather than alternating with 2.5 and see if there is an improvement? I've been finding it very much more difficult to reduce on these very low doses probably due to the percentage drop being so much greater but we'll all get there in the end won't we and the flags can go up on the forum! :lol:

Very best wishes,

MrsO

Hi Mrs O,

Thanks for your advice. It seems it is gout in my knee which I am now dealing with with colchicine. Much better over the weekend and hopefully now on the wane. Off to see the Gp on Weds but have stuck with my Prednisilone dose and will have more blood tests next week. All in all much better :D . Glad to hear you are heading in the right direction as well. It sure does take its time!!!! Keep smiling everyone, there is light at the end of the tunnel... Greens

Hi Greens

Like you I am on 3.5mg even I too seem to get pain at night take 2 pain killers at bedtime which olny slightly helps as they seem to ware off by early morning. But like you after I get up after 1 hour or so I am fine. This has been going on for about 1 month not getting any worse/better so I am staying on 3.5mg as other than that I am fine. No more reducing though at the moment.

My blood results are all normal.

Keep well.

Regards

Linda

Hi Greens and so glad to hear that you got a diagnosis....not nice though, gout, very painful as MrsK can bear testament to, but good news that you are feeling better and heading in the right direction still. Keep it up and good luck. MrsO

Hi Greens

In the Arthritis Magazine, Summer Edition there is a load of information on GOUT and most useful is that it should be treated preventatively as well.

The Mag is available on line.

Mind I had pseudo-gout, which is different from gout.

But hellish painful just like gout.

Well worth a read.

Hi Linda

I am at the same stage as you, had PMR for just over 2 years and the pains are mainly in my knees and hips occasionally in my arms. But I have only managed to get to 8mg at present having been down and gone up again. I have heard someone elso mention that it travels downwards, hopefully out at the feet.

Best of luck

Spammy