47 years old and have Polymyalgia Rheumatica

I think everyone worries about taking steroids I am on my 2nd bout of Polymyalgia 2 years with it 3 years without it and back again from last October !!! Each time my highest dose was 20 mg and the 1st time I did put on about a stone but this time I am trying very hard not to I feel that you have to concentrate on yourself while you have this and do everything you can to look after yourself because as soon as you take steroids and the pain HOPEFULLY goes away people think you are well again !! Rest as much as possible cut out carborhydrates as much as possible and as you say this website is great I know as soon as I overdo it I deteriorate so good luck and take care of yourself

hi

Good advice from Mrs G. Ive had PMR for 3 years now and I honestly think us sufferes are the experts in this. My 'specialist' wasnt all that knowledgeable and basically left it to me to manage my own steroid reduction. With a bit of luck you'll be put on a high dosage 20mg or upward for a few months and then it will taper down. My own expereince of steroids was not so much weight gain - although I put on about a stone at first - it was more about the 'dumming' down you feel which is hard to describe, but if youve had any 'zest' about you - it will be affected in all probability. As Mrs G says, when you go on steroids you appear to everyone else that you are 'cured' which isnt true. Good as they are they dont take away all the symptoms and it can be quite a miserable condition. That said you have to be positive. Ive just come off steroids after 3 years and whilst Im not pain free I can live without steroids just now so fingers crossed and hope you are feeling better.

Hello Everyone! I'm 47, female also and am been treated for polymyalgia rheumatica. 8 weeks ago my muscles ached especially finding it harder to turn in the bed and thought that I was over doing it with the boys in the summer holidays. 5 weeks ago I could not get out of bed, stiff and in agony. The ambulance had to be called and luckily a top consultant was on over the weekend. He took blood tests and put me on steroids asap reckognising pmr even though he said I was young to have this. I felt great the next day and able to leave and now begins the journey of my recovery. Started on 40mg prednisolone and anti-inflammatories. Was reduced to 30g after a few weeks and then down to 20mg and couldn't cope so self went back up to 25mg and was then able to cope. My GP concerned why I'm still so sore and stiff especially in the mornings she had more blood tests and urine test taken to see if anything else is going on. I will let you all know if anything shows up. I'm trying to stay positive and receiving reflexology and neck, shoulder, arms and head massage once a week which is lovely and very therapeutic!

I was just wondering had anyone had any trouble with their neck and finding it hard to actually hold their necks upright, the reason I ask is because for about 4 years now I've had this problem with weakness, stiffness and pain. I've been to many experts and MRI scans and xrays due to other back related problems I have such as Scoliosis and Spina Bifida (slight) anyway my GP has said that she doesnt think it's related but the steroids are sorting this problem out also so two for the price of one. I cant tell you getting a diagnosis is half the battle and I just feel now I can get on with getting better and stronger! Thank you for listening to my story and I'm sure I will find this forum very beneficial to me and my recovery. Jackie D

hi both of you to the club you do not want to join make sure you also visit the other website to get informed about pmr because we have all found there are drs with expertise and those who have not ,this has implications because often the main issues the drs have is to reduce the steroids as quickly as possible but despite the side affects including the dreaded weight gain that everyone hates steroids are the only thing that controls the symptoms it does not cure the condition ,that burns itself out when its ready and on average for a women this is around two years but can be shorter or longer with some flares where the steroids have to go up .the main key is to learn about slow steady reduction on the higher doses this can be as much as 5mg at a time but most people feel its safer and more easier to monitor if they have smaller reductions ,the trouble with bigger reductions is you can miss the optimum dose that is holding the condition and that ends up with more pain and the need to increase again . however be aware when reducing that you will have withdrawels so dont rush to increase, bear with it for at least a week and then if things are getting worse reasses the dose, also make sure you get plenty of rest on these weeks and always remember if you over do it you will pay the price !!make sure bloods are done on a regular basis eg esr or crp and they shoud do your liver kidneys hb blood sugar at least once a year .i presume someone will do a bone profile but you should be on a calcium/vit d supplement .keep coming back to us with you questions and we will guide you through alwaysremeber pmr is life changing not life threatening and at the moment steroids are your friends not the enemy carolk

Hi Carolk thanks for the information yes I feel steroids are my friend at the moment after initially dreading and fearing them but we've got to do what we've got to do to get through this. I know I am over doing it and am paying the price as I'm still early days, very hard with two young demanding boys and husband who has a very manual job but am gonna get help with the housework until Christmas at least. Will I be like this for a year or two? When does the weight gain happen? My GP says its due to the increase in apetite which I don't have as yet. No-one seems to know how or why pmr occurs. I was wondering does anyone have any theories mine is the lack of Vitamin D. Especially with the lack of my getting the sun over many years and anytime I'm out its on with the factor 15+ on the face so even less chance of getting what little there is. Dr Chris Steele has said that we all need at least 15-20 mins of sunshine a day without protection. I'm now taking plenty of foods with Vit D and also a 50 per cent supplement because its NOT GOOD to overdo the Vit D either. Anyway thanks for listening to me I hope we can all help eachother in any way we can to impart some information and continue Good Health and Recovery!!!

hi re weight gain there is a possibilty of increased appetite especially during the withdrawel periods during reductions but weight gain also comes re fluid retention and you can find fat deposits around the face neck and back of neck also abdomen ,these take time to develope but some people even reduce their weight !!vit d and calcium called adcal or calichew are given because our absorption of these are impaired and we are at risk of bone problems due to the long term need for steroids .this is why people have bone profiles done or a dexa scan to check if you need more than these supplements .if anyone is very low on vit d they need exrtra medications this is been discussed on the other forum at the moment .i am afraid the average woman takes at least two years with this condition and as we are all different it could be shorter or longer ,i can appreciate its difficult with your busy life which is not helped by the fact we do not look ill but you will adjust and i am afraid you will have to say no if you cant manage something .good luck carolk

Thanks CarolK will take that on board and thanks for the advice much appreciated!

Hi Jackie - and welcome to the world of PMR. I havn't replied before as I have been at my daughter's wedding and our internet access was very on/off - mostly off!

First of all - are you still on antiinflammatories? If so be very careful as they should not be taken on a regular basis if you are on pred as the risk of stomach problems (common with either) is much higher if you take both. Many of us find they don't do a lot for PMR pain anyway, it is the pred that reduces the inflammation that causes the swelling that leads to the pain symptoms. This is especially a risk if you are on ordinary white pred tablets, you can also get coloured enteric coated versions where the risk is lower.

You were started on a very high dose for PMR at 40mg and it will have dealt with the intial symptoms like using a brick to crack a nut! However, if there is a lot of inflammation it may take more than 8 weeks to get it to subside properly. 20mg is also the top of the normal recommended range - but it may be not quite enough to cope with the symptoms yet. You are very young for PMR and it is acknowledged that the younger patients present differently and often react differently to the pred. It may also have something to do with the fact that often they have - like you - a young family and that is hard work which doesn't mix well with PMR. Elderly ladies can take life a bit easier when they need to!

Another lady who we met on this forum (50s girl) had a similar experience to you. At 25mg she was fine but when her doctor reduced her to 20mg she wasn't! Although 25 and 20 are doses that should be enough to control the symptoms, in some people a drop of 5mg at this sort of level is too much. The main cause of a flare in the symptoms is reducing the dose either too fast or too far. That was the case with 50s girl. When she joined this group and we coached her (for want of a better word) to drop her dose 1mg at a time she was able to steadily reduce her daily dose to below 10mg without PMR problems. She did, in the interim, develop bad osteoarthritis in her hip which deteriorated very rapidly and has had a hip replacement but is now back on track with her reductions.

In addition - you can also get similar pains to PMR when you reduce the dose of pred. We usually say that pain that starts quickly after reducing the dose but then improves after a couple of weeks is from the lower dose. If the pain takes several days to develop and then steadily gets worse - it is probably the inflammation starting up again. The larger the drop in the dose the more likely this is to happen - either way. You are looking for a dose that is enough to control the symptoms but at as low as possible a level to try and avoid the side-effects. The top experts say the reductions shouldn't be more than 10% of your current dose - so at the level you are at you shouldn't be more than 2.5mg/day at a time. This is especially important once you are nearer 10mg and some people have to reduce 1/2mg at a time then.

We all react differently so don't let a doctor tell you "but all my other patients..." - most patients taking pred and reducing the dose are only on it for a few weeks and PMR is totally different. Always remember - the pred has not cured the PMR, there is no cure as such. The pred controls the inflammation which is caused by an underlying autoimmune process that makes our body attack itself. That underlying process isn't affected in any way by the pred, all you can do is control the symptoms as best you can. You can help the pain etc by managing your lifestyle - NO is a very good word to learn. Not in a nasty way - but tell people you have a chronic illness that causes a lot of pain and fatigue and whilst you would love to help/do it/whatever at the moment you are unable to do so. Do what absolutely MUST be done. Then what you feel able to do and want to do. You must leave some energy to do thinks you like or life will become a drudge and you will get depressed. How old are the boys? They can learn to contribute to running the house - I had a single parent friend, a full-time teacher, whose boys were able to do their own laundry at the age of 7. They did brilliantly! (Wish my girls had managed that ;-) )

I bet you overdid it on reducing from 25 to 20 - got all excited at feeling better. The higher doses of pred often do make you feel you can conquer the world - I'm afraid not! Other side-effects vary from person to person but noone gets them all (83 at the last count) and some get very few. I didn't really gain weight - and my appetite went down once I started on pred. I had craved carbs, sweet carbs, every afternoon after the PMR started really badly (I had already it for 5 years at a milder level when noone came up with an answer for the symptoms) and had put on weight previously because I was no longer able to exercise as much - as soon as I started pred those cravings went and I didn't eat anything like as much. My daughter is the same - pred equals eat almost nothing! The weight redistributed though - to around my middle, the buffalo hump and on my face. That wasn't too bad on prednisolone but I was put on Medrol last year and that was far worse. Yuk! But some people don't put on weight and some even lose weight (honestly). It is possible to lose weight on pred though - you have to be very careful about what you eat and resist the desperation for a piece of cake! You are far less active - it makes a big difference.

Do come over to the other forum which is much more active and varied and we have a good social life over there too, lots of laughs like you can find at a physical support group meeting but all over the internet (the moderators here have very kindly put the link in one of the headings at the top of the discussion thread) and you will find lots of info on the PMR-GCA northeast support site whose link is also there - stories of patient journeys and recovery, a dvd to explain what PMR is all about to your family and friends.

Hope this info helps - lots of it as usual on a post from me

Eileen

OOOH - silly me!

I forgot to say: low vit D can also cause similar problems to PMR and you should have been tested for that as an exclusion when the diagnosis was made. If it hasn't been done - ask your GP to do the test. Some are very reluctant but the guidelines for normal levels are being revised and it is a good idea to know. You can also get symptoms like this during the menopause due to hormonal levels and there is a thread here about that which has been active recently so have a look. One relatively young lady had her "PMR" (which is only a description of the symptoms in latin, many painful muscles) cured by hormone treatment - so worth a thought and tests too.

Eileen

Hi EileenH, Thank you so much for taking the time and trouble to type. What and where is the other forum to follow? My boys are 9 and 7 and they are both helping me around the house, reluctantly and willingly depending on their moods and the introduciton to pocket money has helped. The dvd sounds very helpful. My blood tests came back and inflamation levels are normal, all the tests ie: vitamin and liver, kidneys all normal to tell you the truth she said over the phone so didn't get a chance to go into detail. So very happy with those results and now am on the waiting list for dexa xrray. My gp still cannot understand why I'm so sore (especially burning in the shoulders) in the mornings it actually starts around 9pm and carries on throughout the night and then I end up very stiff getting out of bed in morning and then come around well around 12 noon ish. I'm taking Naproxen 1 per day as well as the 20mg prednisolone and also a Ranitide tablet for the stomach. I take these at around 7-8am every morning. I will look into the fact that low Vit D is contributed to this condition and I will look at the hormone treatment also. Take Care All! Jackie D

Hi Jackie,

See patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708 which you can get to by clicking Polymyalgia and GCA in the breadcrumb trail at the top of this page.

Alan

Emis Moderator

Thanks Alan - I spent nearly 20 mins this morning trying to post this unsuccessfully! I also have problems finding this thread - it doesn't appear under my discussions for some reason. I'll try again

Jackie: This forum has become SO clumsy and slow to navigate round - I find it infuriating! However - I'm sure someone somewhere loves it!! The "other" forum is also complex in some ways but that's because it is so big now!

I don't know how you access your latest reply here - do you come directly from your email notification? If after have read your latest post here, you then scroll back up to the top of the thread of all the comments, you will find Discussion forums -> Conditions P -> Polymyalgia Rheumatica. Click on the Polymyalgia rheumatica bit and at the top of the list of threads (all the different topics being talked about) you will find 3 pinned topics - that means they remain at the top even though there isn't a new response. I think it is the third one down that, dated 7th October 2011, gives links to the pmr gca northeast support site and its associated forum. It was initiated by MrsK who also posts on here and provides a vast amount of info and other links - the info is all monitored or in some cases provided by medics in the PMR and GCA field so is absolutely reliable.

Your GP may have said your vit D is normal - that all depends on the local area's definition. Not all PCPs have adopted the latest information and some will still tell you that 20-ish is fine. It's NOT. If it is hovering in that region now in the autumn, it isn't going to improve in the next 6 months - 70% of people here in the north of Italy are deficient and are officially being told to take supplements of 2000 units of vit D per day over the winter (not just 800 as we get from calcichew!). If we are deficient with our amount of sun heaven help people living in the UK!

Anyone - If MrsK suggests you contact her, do so! It will definitely be to your advantage!!!! She knows all sorts of things and people that may be helpful to you.

Eileen

Hi Eileen,

Re the My Discussions list - the ordering of that tab is still reverse date but when the discussion was started rather than latest reply so as this was first posted in 2009 it will (hopefully) be way down your list. It is on the second page near the bottom on my My Discussions tab. The quickest way is to go to the PMR link for latest threads. I have asked for the ordering to be changed on that tab to be latest reply sorting as per the Latest tab and more user control for sorting the My Discussions tab including removing inactive ones etc.

Alan

Hi Alan and EileenH Thank you so much for your information it is much appreciated. I've decided to go back to my 25mg of pred instead of 20mg and see how that goes. I'm getting great advice here and also my friend who has said all along that I was been reduced too quickly down from the pred and its still early stages 9 weeks now therefore I will monitor myself and keep a record. Heres hoping that I will be less sore and stiff over the next week. I'm getting my alerts from this site directly through to my email so handy enough. My gp did say to up my Vit D and Calcium supplement als, which I've done. Also I will consider moving to a hotter country ha ha no seriously this may be on the cards. Take care all Jackie D

Hello All, My last entry that same night I took 1 of 5mg of pred and had a good night I was even able to get up to my son in the middle of the night without any stiffness and pain also the next morning still the same feeling good. Phoned my GP and she was reluctant to approve of my upping my medication to 25mg but I explained how sore I've been and feel that this is the dose that I'm comfortable with and we will look at it again in a few weeks but long may it last. I even went out last night to dinner and a show.

What is over doing it I am ignorant of this and just really getting help with not lifting heavy stuff and over stretching myself but I'm worried that I'm not maybe taking it as easy as I should. I'm staying in bed in the mornings after the boys get the bus for school, when I get the chance. Driving is a bit difficult as my left shoulder pulls on the gear stick. My next car is an automatic please Santa.

I would love to hear from comfortablecat as you are the same age and wondering how you are getting on? Take care and keep well all!