Seriously, has anyone ever with pmr been in remission?

[112045]

Seriously, has anyone ever with PMR been in remission?

[Rose54]

Hi

I know a lady who had it about 8 years ago was unable to cope with steroids so managed without. Not sure of how much pain she suffered or for how long, she only had a month off work .And has had no problems since .

I was only able to get a diagnoses of PMR for myself due to knowing about her as GP was hopeless.

Rose 

[Sheribrim]

Yes I can honestly say I stayed on a reducing dose of steroids for two years and went into remission for 18 months. It returned after a bout of flu at xmas. I hope to reduce from 17mg to nil by this Xmas and then try the flu jab, may help who knows?

You will get there but don't try to get there too quickly or it will flare up again.

[Hidden]

I know what you mean 112045. It often appears as if there is no end to this. I've spoken to people who have weaned off pred completely and been fine to present day. I've read of people who have got to zero and then had a relapse months, even years later. I've heard of people who remain in a very low dose of medication 2 or 5 mg because they never quite reach that pain free state that allows them to function. Seems everyone ends up at a place that is right for them. 

[tina-shelley]

The lady I clean the church with had pmr. But she was never given any medication? I've quizzed her to make sure that it was pmr that she had and she swears blind it was. She said that she was in pain and stiff for aporox 2.5 years and has been in remission for about 5 years. She's 83 years old. Regards, tina

[highwood]

Hi I am in remission, have been for 6mths.

Highwood

[jinasc]

Visit pmr-gca-northeast.org.uk and read the story of Betty in the last Newsletter.

We also have three other ex-members, all in remission, but come to a meeting at least once a year to tell people how they are doing.

[Annodomini]

Yes - I don't think we meet them very often on here because perhaps their cases are the straightforward ones. My good friend had it (a classic case) about 10 - 12 years ago and has been clear ever since. One of the lucky ones.

[PMRpro Ambassador]

There are a few people on the forums who have had PMR twice - they went into remission for a few years, then had a flare but are actually off pred again. There are others who still hang around the forums and support groups even though they are in remission but stay to "spread the gospel", work with the charities and because they have made "friends". 

By definition this is a skewed population - for one thing we are internet users and many patients who go to the support groups aren't. And secondly we probably tend to be the patients who are proactive in dealing with our illness or their relatives who want to be proactive - many others just accept what is happening to them as part of getting older, particular the older ones. Add to that the fact that if you DON'T have problems then you also don't feel a need for support in the same way. Plus, for many they do not want to be reminded of what may have been a very dark place in their life.

I know several ladies who have had PMR who spent the first year or so on the forums but then learned how to manage their symptoms better and got back to their old pastimes or found new ones that required less or different physical input. You use pred to be able to do that - it is there to manage the symptoms until remission happens. I use pred to do that. PMR doesn't stop me doing most things - in fact, in the early days I still skied with PMR, even without pred, it was really other things that made me change my mind. I still travel. I take the pills and I forget about the PMR most of the time. I take pills for hypertension and for atrial fibrillation, pred is just another. 

[Celtic PMRGCAuk volunteer]

112045, as you will have read in the replies you have already received, there are many people who are in remission - I am one!  It took 5-6 years with both PMR and GCA, at times seeming as though it might never happen, but it did, some 4 years ago now.....and it will for you, too.  It's true to say that remission doesn't necessarily just drop on our plates - we have to do as much as we can to help ourselves to reach that goal by alternating resting periods with having sufficient gentle exercise to help with the stiffness, eating a healthy diet that includes plenty of known anti-inflammatory foods whilst avoiding those known to be inflammatory, reducing our steroids slowly but surely in line with our personal level of inflammation, and above all remaining positive.  You will get there.

[Hidden]

Yes. I came off steroids just over 2 years ago. I have been left with some muscle weakness but am so very much better. No stiffness at all and I am so much more active. Hope you are better soon.

[112045]

Thanks for all the encouragement.. I've had pmr since 2011. I am now 70, the lowest I ever got down on the prednisone was 7 mg. Then something would happen such as a virus, and it would put me in a flair and then right back up to 20mg. It's a merry-go-round. Currently doing a 9mg alternating next day  with 8mg. I am doing okay, able to walk for about 45 min. a day and do flexibility exercises to keep my muscles strong. This is a wicked disease, but remind  myself there are so many people suffering from much worse things in life. The support on this site is wonderful and informative. I read just recently someone said doctors should read this site, it would be an eye opener. I agree.