Recently diagonosed with PMR

Hello pmrjean

Welcome although I'm so sorry to hear that it is your suffering that has brought you here. However, you can be sure of receiving a warm welcome from all of us and, hopefully, will soon feel more optimistic and much better for losing that feeling of being alone on this journey.

It is likely that the inflammation in your body has not quite settled down therefore making it difficult to make that first reduction successfully. If you had felt comfortable on 20mgs for a couple of weeks, then perhaps it would have been preferable to try a smaller reduction, perhaps to 17.5mgs. The tablets are available in 5, 2.5 and 1mg doses so it is quite easy to make smaller reductions.

Did you have blood tests (ESR and CRP) pre-diagnosis which showed raised markers? If so, then it would be wise for these tests to be repeated to ensure that the inflammation is under control before reducing.

I note that you feel concerned about the possibility of having GCA as you occasionally have pain in the temple area. Do you have any vision problems, such as blurring or any facial swelling? Can you feel a pulse at the temple area?

Don't worry about the facial swelling - that will disappear as you reduce the dose, and it is very usual to feel low when you are first diagnosed. Treat yourself to something special if you can as that will help to boost your morale, and I found that a daily walk or any such gentle exercise really helps to release those feel-good endorphins.

Hope to hear back from you soon.

MrsO

Hi Jean! And a hearty welcome to the club where we don't really want any more members!

How does it work? Well - if any of us feels an urge to start a \"thread\" we click on \"Post an experience\" as you did and write about it. If we see a new experience or additions to a thread when we log in - we come along, click on reply and write what we want to say. An addition shows up as a brown flag next to the title and you will know someone has offered an opinion, advice, sympathy or just a comment with a laugh (maybe).

We are not allowed to give you direct links to another website without it being approved so you may find someone suggests you \"google\" a set of words to find another link that way. I will do so in a minute to give you other places to find medically-based and reliable info.

You WILL meet people here - and you may find there is someone who lives locally to you so you can meet properly to exchange experiences. there are also support groups in a few areas which meet regularly though not frequently. To find these try googling pmr gca uk northeast support and you should get a link to the UK charity website where you will find articles about pmr and gca and steroids etc written by healthcare professionals and patients in language you can understand. The charity was set up last spring and there is also a DVD with info for both you and family and friends to explain the delights (!) of pmr and what it does to you.

If you have any specific questions - ask away and someone will try to answer them. I've had my head bitten off for supplying a broad and comprehensive explanation that the person who'd asked a question felt was surplus to requirements - but if you want to know, I'll tell you! So will any of the others who contribute to this site. None of us are doctors (as far as I know) but there are some healthcare professionals (past or present) and experienced people with sound advice.

If you have time, having read the pmr/gca support site info, try and read various threads on here. You will find a mine of information and get an idea of what we try to do here. If you want a moan - here's the place to have it. We have all been there, we know what you are going through and have wrinkles to make it a bit easier. You have a problem you think is unique to you? I bet it isn't! None of us minds repeating ourselves if you ask a question that has been asked before but you haven't found it.

If you tell us a bit about yourself and where you are it often helps us know what to recommend. We've recently had a thread asking \"where is everybody\" which started because there had been very few posts for a while - and what happened was that many of us told who we were and where we were and how we got here! It was such fun to get to know our \"friends\" so much better and I recommend you scroll down and have a read. We may not always stick to \"business\" and we do aim to have a laugh as well. Contrary to what you might think we are not alcoholics though!!! :roll:

As a first bit of advice - don't try to drop from 20 to 15 overnight! Either use 2.5mg pills to go via 17.5mg or take your doses 20/15/20/20/15/20 and so on for a week or two, then try 20/15/20/15/20/15 increasing the amount of 15 in the mix until you can go down to 15mg. You might even find it better to do 20/17.5/20/17.5. There are several threads about reducing gently but if you want more detailed instructions ask and I'll do it. But basically, never try to go down more than 10% of your current dose at any time - so for a 20mg dose you should go down to 18mg. Alternating the daily dose as old/new using 2.5mg pills is near enough. Don't feel there is any virtue in reducing the dose just for the sake of doing it - if you go down with a bump and the symptoms come back it will be more difficult the next time, many of us have found by experience.

Remember - steroids do not cure PMR. They reduce the inf

MrsO - how do you do it? We are so often on writing at the same time! And saying the same thing - it's scary!!!!! :lol:

Eileen - well at least if we're saying the same thing, we must be getting something right :lol: Either that or it's well time nigh that my PMR and GCA took a hike! :roll:Enjoy your first ski of the season tomorrow. :ski:MrsO

Hello PMR Jean

Sorry to hear you are suffering too !!

You have been given all the practical information in the last 2 replies so I wont repeat that What I will say is all our journeys are different and I have had this twice and each time my recovery has been different With the first bout I sailed through it in 2 years reducing each time with no problems but with this 2nd bout I have a very up and down journey but 2yrs2mths later things seem to be getting easier and now on 4mg for the 2nd time

There is tons of information and help on here all the time and we all share our ups and downs

Just remember what you have already been told by the other posters steroids are only masking the PMR so you need to put yourself first and make sure you rest and eat properly The main things with steroids is to cut out carbs as much as possible too avoid the weight gain and bloating Dont worrry about the puffy pace it goes as you reduce and personally that was for me a small price to pay to be pain free

I keep records of my bloods ESR and CRP my steroid doseage and how I am feeling At first I was having monthly blood tests and now it is 2 monthly prior to seeing my Doctor for a chat about my reduction programme

Ask as many questions as you like and hope you start to feel better soon but if you are in pain dont delay see your Dr again

Best wishes Mrs G

Eileen, you are an excellent teacher. All relevant information in everyday language and that's not as easy as you might think.

PMRJean. Very sorry you have to join us but you will have seen already how helpful this site is.

I've had a quick look at my reduction schedule when I had PMR for the first time in 1999. I began on 30 and stayed there for 4 weeks, 20 for 11 days, 15 for 10 days 12.5 for 2 weeks so approx 9 weeks from 30 to 12.5 but when I tried 10 it all got more precarious and had to do lots of adjusting. We are all different and your needs will be unique but I ( and many others on here ) have been comforted to read what happens to other people.

If you need to reduce very gradually a pill chopper from Boots is a help but if you have to have the coated tabs for stomach protection they must not be cut. Also you can achieve small reductions by taking, for example, 12 and 10 on alternate days. There are many examples on here of individuals' methods and you have to pick what works for you ( in discussion with your, hopefully, co-operative GP. )

Come back often and good luck

Hi PMRJEAN,

welcome to the forum. I am also a 66 yr old woman living in Cheshire, diagnosed 12th October with PMR. As others have said, to drop from 20 to 15 is rather a big reduction. I was put on 15 and was told to reduce to 12 and a half and then 10. Having read on here about the problems others have had with a rapid reduction, I asked if I could come down slower than that, and the rheumatologist agreed to a 1mg reduction each time, 15 days on each dose, starting tomorrow actually. If I were you I'd ask the same question, to reduce much more slowly. I would prefer to reduce slowly rather than too quickly, and have to go back up again.

Keep coming back to the forum, I'm a newbie at all this but there are plenty more experienced people post on here who can give you lots of help and advice. Hope you get some pain relief soon.

Take care and the best of luck.

Molly.

This is a PS to my last post. I've just re-read your post PMRJean and see you are concerned about aching temples. I don't have GCA but did become alamed when I had throbbing pain above and behind my L ear. Two doctors at our surgery looked very carefully and told me to put my fingers where the pain was. They reassured me that there was no sign of claudication ( I believe that means clotting but Eileen will correct me if not.) They said all was well while I could feel such a strong pulse which I believe Eileen mentioned in her reply to you but I was certainly treated seriously and I would not hesitate to go back if worried. GCA is serious and must not be neglected. We cannot afford to take chances with our sight.

Eileen, I love your idea that there might be closet doctors reading this site. If so I do hope they are sharing our expert insights with their colleagues. BettyE

No BettyE, not clotting. Of all the strange definitions: claudication means \"limping\" and the word is used to describe the pain, weakness and cramping that results from arteries not supplying blood to the affected area properly - mainly because it occurs on legs when the leg arteries are blocked due to the fatty plaques from deposition of cholesterol or if they are inflamed and do not dilate properly in response to exercise. So in our case it is cramping that is meant when claudication is mentioned - most of you know about the jaw claudication which is one sign of temporal arteritis. It is also what happens to cause the pain in the large muscle groups, especially the bicep and quadricep (upper arm and thigh muscles) that we often experience in PMR.

What the doctors were looking for was a tender swollen artery in the temple which didn't have its usual pulse which is typical - but like everything else with this disease isn't a \"written in stone\" presentation! I had jaw claudication (pain behind the corner bones on chewing) and for a few days a really tender scalp but nothing else and it went away with no permanent damage. But that IS unusual.

That all said - went skiing this morning (after waiting for it to warm up to -10.5C!) and had a lovely time. Not long but I start with very short essays and do prefer the sun to be shining to warm things up a bit. It had been promised but didn't really materialise and they changed their minds for the 11am forecast for the rest of the day :roll: ! I suppose it's better than the UK where they don't even get the weather now right never mind the forecast!

EileenH

[b:a716996f7d] :P Thanks everyone who has replied to my post. It is wonderful to get the advice and support. I do have a doctor who seems to think that the dosage of steeroid should only be decreased in small amounts once you are on the course for very small dosage. I did ask him if I could go down just 2.5mg last time and he insisted on the 5mg. He is well known for not having a good bedside manner and I know I am going to have to find away of communicating with him. I will continue to come onto this site now I have found it so I can see what is going on. I live in the area of Worksop, Notts so if anyone out there lives around here it would nice to hear from them. I have 24\" of snow on the patio table at themoment so I am just glad I have a roof over my head today. Once again thanks for the support.[/b:a716996f7d]

Jean - you must have other doctors in the practice you can see. If he won't play ball, find another who is easier to talk to and tell them about the PMR GCA support site and this forum. I can't remember offhand what the guidelines on there say about reducing - but I do know that the rheumatology text books written by the big boys (and girls) say not to reduce by more than 10% of the current dose at any time. 10% of 15 is 1.5.

Reducing steroids in PMR is not the same as reducing it in other illnesses where you are merely aiming at getting you off steroids. You are not only dealing with the steriod withdrawal aspect which can also cause pain and stiffness but there is also the fact that the PMR is almost certainly still active. The steroids are managing the PMR, they haven't cured it and never will. You will only get off steroids once the PMR has gone into remission and the inflammation has subsided. You are aiming for as low a dose as possible without those symptoms reappearing. It does seem that a very slow and cautious taper is less likely to result in a flare which might need you to go back to an even higher dose.

I will repeat something I posted a bit back: more than 50% of all PMR patients are on steroids for at least 2 years before getting off them - another approx. 25% never get off them altogether (remaining on a very low dose, maybe only 1mg) or are on them for several years. Less than 25% start on steroids and are off in less than 2 years, and they are more likely to have a relapse later. There is no virtue in tapering the dose just for the sake of it and the pain and stiffness returning. Many doctors - who it has to be said have never had PMR - believe the oft quoted mantra that it burns out in a couple of years. It doesn't and there are plenty of people here to bear that out. I've had it for 6 years or so now. It hasn't ever gone away altogether. And it's worse in winter (well, when it is damp) and you have winter in Worksop this week!!

We have winter too today - a good 4 or 5 in since breakfast and no sign of stopping. Forecasters got it wrong!!!!! No surprise there then! You can't see to ski today!

EileenH

I wish I knew a way to get some of these unco-operative GPs to read what we say here. It's almost impossible to persuade this sort of person face to face,( face being what they must not lose! ) I used to get cross when mine would say\" I don't know\" or \" I cannot account for that\". Now I have realised how lucky I am. Having solve one of my problems by saying to try taking Pred. in the evening he admitted it was a shot in the dark and, when it worked, said he would add that to the sum of knowledge. Isn't that what any professional should aim to do and how can you if you just follow my leader?

It's not just some medics that like the set-in stone approach. Gardening cookery and teaching \"experts\" are just the same and doubtless others outside my sphere of interest and experience. Once, cammellias were treated as tender but they were proved to be more or less bone hardy and I've lost count of the cookery dragons slain by Delia. We need inspiration and intuition as well as the text book.