Recently diagnosed with PMR in need of advice.

Welcome Jan, though I am sure you would much rather not be here.

Glad that the Pred. has made you feel better and able to cope. That's all it will do. As everyone else on here will confirm. it is not a cure; there isn't one though it can go away but usually not very quickly and, as I know to my cost, it can come back but, as far as I know, there are only a couple of us on here who have had it twice.

Reducing form 25 to 10 in seven weeks is pretty good going but usually, the more the dose is reduced, the longer you have to stay at each level if the pain is to be kept at bay so don't be disappointed if you don't go on at this rate. We are all different. At the moment I am on 9 and am to try to reduce at the rate of 0.5 mgs each month but it is a case, as someone else has said, of suck it and see. You may be very lucky and have a smooth reduction but often it's a case of ups and downs and what your Doctor said is true; you have to find a balance.

As regards side effects, again you will read on tis site of every thing known to man from weight gain, weight loss, sleeplessness, weakness, panic attacks, and many more and often you will wonder if it's the steroids, the PMR or something else entirely. My Doctor sent me off for ultasound scans of all my innards because I was so uncomfortable at one stage. All that was found was a simple kidney cyst which the radiographer said I'd probably had for years as they are very common in the over fifties. You know what? my kidney area was one of the few bits that didn't hurt at the time. See what I mean? Almost any symptom can be described as normal with PMR as many others will be along to tell you.

As regards the calcium I haven't heard anyone else mention that they cause soreness. They are prescribed to counteract the effect of the steroids on your bones. The ones I have are called Calceos. They are not the treat of the day, being a bit chalky, but don't give me any trouble. You could ask if there is an alternative and certainly there is everything to be said for a good diet. Some people take bisphosphonates. I was prescribed Alendronic Acid but it doesn't suit everyone and I had to stop taking it. It made me wheeze and my lips go numb.

This site is a mine of information and I read a new sufferer advised recently to take time to read all through it. It will take a while but at the end you will be wiser about this painful and inconvenient condition and feel just a little bit better for knowing that you are not alone.

Best of luck. BettyE

Hello Jan and welcome to the forum although sorry to hear of yet another sufferer of PMR.

It's good to hear that you have managed to reduce from 25mgs down to 10mgs in just 7 weeks albeit that you still have \"pain in the pelvis\". In view of the continuing pain, it is important that you don't reduce any further too quickly and about 1mg a month is generally recommended providing the blood test results remain stable and the symptoms improve.

As there are more than 80 listed side effects of the steroids, then some of the problems you are experiencing can probably be put down to them. However, some people do suffer from some side effects whilst others suffer from no effects at all. The sore mouth you refer to is not something that I have experienced but as I have been unable to take calcium tablets then I'm not aware of whether they can cause this problem as you suspect. Perhaps someone else will come along and give their experience of this. Steroids can cause osteporosis and therefore the calcium supplements are given to protect our bones. In the absence of calcium tablets I have taken a daily live yoghurt immediately before the steroids for the last 3+ years in the hope that this will help to protect my bones. I also have milk, hard cheese and oily fish which not only acts as an anti-inflammatory but also provides Vitamin D to help the absorption of the calcium in the foods. However, I was diagnosed with osteopenia (the stage before osteoporosis) after 2+ years on the steroids - it is believed that once you reach the lower doses below 5 that the risk is removed so I am hopeful that I will not have any further deterioration (everything crossed!). Pain permitting, daily walking is recommended as a weight-bearing exercise to help the bones even if it's only 5 minutes on a bad day. Some people swear by aquarobics.

It is difficult at first to find the happy medium but it is generally recommended that we pace ourselves so that we don't over-stress our bodies, and after a day of high activity it is best to rest and let the body recover to give the inflammation a chance to dampen down.

I think a lot of people on here will tell you to enjoy that glass of wine - I'm assuming you did mean that you enjoy a few glasses a week and not a day :lol:

Do hope this has helped to answer some of your questions but do come back and ask anything else that may be worrying you and there will be someone here who has been there and got the tee-shirt!

Very best wishes,

MrsO

Jan101

I assume Jan you are not 101 if so, you are the oldest person I know of with PMR - the oldest so far is 91.

It will be helpful to you if you visit www.pmr-gca-northeast.org.uk.

On that site, are diagnostic procedures (British Society of Rheumatologists guidelines issued June 2009).

Articles written by patients and checked by the Medics for accuracy - but in words of one syllable - no jargon allowed.

Knowledge is power and you need it on the journey you are undertaking.

The site is the best one in the world for asking the question - somebody has always been there, seen it done it or if not will try and find out about it.

Ask your GP for a Dexa scan. This will show what your bones are like now. I had one after six months of steroid usage (high dosage as I have GCA). The steroids had not had an effect. I have a scan yearly and so far bones are holding at 97%. Which is good for a 72 year old. So I have never need Calcium prescriptions.

Any medication you are prescribed or want to buy over the counter, check it out with the Pharmacist. They know better than anyone, and that included your GP - what drugs are compatible with steroids and what are not.

You mention 'night sweats' this can be either the PMR or the prednisolone.

Evening Primrose Oil or Sage Extract can help - but check compatibility.

'Bloating, swollen ankles' - sound like water retention - again this can be a side effect of prednisolone. I have been prescribed water tablets since two weeks of taking the pred. Ask your GP no need to suffer this one.

Ask also for a full spectrum Blood Test and ask them to include the Vit D test. They may hum and hah - but its your body and you want to know.

Remember that the ESR and CRP are only a guideline and its how you feel that matters. Keep a record of the figures given - it might show you a pattern.

Finally Jan, learn to read the peice of paper that comes with every drug prescribed and learn the side effects. And get a Blue Steroid Card.

Welcome to a whole new world, which I would rather not be welcoming you too.

Hi Jan

Sorry to hear you are suffering too

You have been given lots of good advice already Just a few thing I always take my calcium tablets just before I eat ( shouldnt be taken within 3 hours of your steroids Phamacista advice ) I then have a glass of water then my meal as I dont like the taste of the calcichew

You were put on a higher dose of steroid than normal Most people start on 15mg My Dr has put me on 20mg with both bouts of PMR I have had and your reduction is very quick With my first bout of PMR I sailed through and within a year I was on a mantenance dose of 1mg for a further year This time its been a roller coaster down to 5mg after 14mths then up to 15mg after 15mths now after 21mths down to 7mg and the one thing I have learnt with this bout is I have to listen to my body and if I am still aching I dont reduce

Can you see your Dr and not phone each time I see my Dr every 2 months and she gives me a blood test form each time for a monthly check IF I think I need it

Keep a note of all your blood tests results ESR and CRP so you can see the pattern doseage symptoms etc it does help ( If I had known it would come back and attack me again I would have kept better notes the first time ) !!

As for the smoking be honest with your Dr as it is part of your healthcare They do seem to help more than lecture these days its an addiction like other things Drink lots fo water that might help with the swollen ankles and look at your diet and see if its as healthy as it could be As for the wine I think if its in reccomended guidelines thats OK but I am very careful with it because of the weight gain as I have had to give up my exercise classes and am not so active

You will get lots of help on here but we all end up with different symptoms and side effects !! Even my 2 bouts are entirely different

Just make sure you have plenty of ME time You still have an illness that is being controlled not cured by the steroids ( It goes when it wants to ) !!

I went to a Riding for the Disabled end of term party yesterday ( used tp be a helper but had to give up due to PMR giving me too many pulled muscles ) and at least 20 people told me how well I looked ( A sun tan does help I know !!) It also doesent help when you say PMR Whats that ???

So good luck and if you are feeling you are reducing too quickly and the pain is too much remember blood tests arent the be all and end all of this illness (Mine both have to be under 5 for me to feel good whereas some people are fine around 20 ) so get back to your Dr and tell her /him

Best wishes

Mrs G

Thank you all,

For all your very knowlegable and prompt responses to my cry for help.

All the advice and information you have provided is really useful. I have been exploring the site as well and it is clear that experiences differ considerably.

I am going to ask for a more comprehensive explaination of blood test results so I can track my progress as suggested and a Dexa scan sounds useful. I did not realise that I should wait 3 hours after taking the pred before taking the calcium and the suggestion to take it after meals sounds good. I did read the patient leaflet but I have read so many lately it all becomes confusing. I am also taking the alandronic acid once a week, which is taking a bit of getting used to.

You all sound as though you have managed your conditions amazingly well and this reasures me that I will learn to manage PMR as well as I can. I am sure I will have lots of other questions and in time will be able to give guidance to others joining the site.

Thanks again everyone.

Regards Jan

Ps. Hi Mrs K, thought I should mention that I am not 101 (54yrs old) I just couldn't get the system to accept any of the user names I entered and the addition of 101 is easy to remember. It made me laugh when I read your reply because it never entered my head that anyone might think I was 101. I know you were joking but thought I should set the record straight just incase anyone else really thought that might be the case.

Jan 101

Glad you laughed, we all need laughter and sometimes on this site, you come feeling all gloomy and down, write you piece and then the hilarity starts. It all helps.

When I read your PS, I grinned. Thank you for making me smile.

Hi Jan,

I think we might all have been seriously impressed at a 101 year-old with such a grasp of the internet!!!! :lol:

Everyone else had said most of it - but the only true guide to what dose should be your clinical state. The blood values (ESR and CRP) are only a guide - mine have NEVER been abnormal even at the height of the PMR when I could barely move. Your GP doesn't sound totally clued up and you might consider another in the practice maybe? That reduction is very fast - 25mg was very high, the recommendation MrsK has pointed you to state 15 as a starting dose, possibly 20 if necessary. Yes, you needed to get down from there quickly but after 7 weeks I would feel a reduction from 15 down to 10 would have been good and 12.5 more reasonable and be about to be trying to go down again. The drops should be as small as possible each time and if you can't use the non-enteric coated tablets (the white ones, some people get a sore stomach) which mean you can drop 1mg at a time you will have to use the 2.5 and 5mg pills. You can reduce the size of the drop by alternating the doses e.g. 12.5/10/12.5 for a few weeks, increasing how often you have a 12.5 mg dose, once a week the first week, twice the second, 3 times the third week, spaced out over the week and then go down to the lower dose. If you still have pain at 10 I would say you need to go back to 12.5 and drop more ggradually once the pain has settled a bit. You'll find several suggestions for tapering the dosage elsewhere on this site. There are also a couple of articles about steroids and PMR on the PMR-GCA northeast support group site (as per MrsK) which explain it too.

I would be less likely to blame the sore mouth on the calcium than on the steroids or PMR - I had some problems before I ever took steroids and I think the PMR progresses or changes in some way with time whether you are being treated with steroids or not. You must remember the steroids are only controlling the symptoms - they are NOT a cure for the PMR, they just let you live normally. You need the supplements not only for the calcium but also for the vit D - and there is no way you can get enough of either with a normal British diet as not enough foods are supplemented and the normal amounts preent in food are just not enough for anyone and particularly not for people with autoimmune disease who are generally deficient in both. For vit D, for example, you'd have to eat oily fish at least twice a day every day! And you must have enough vit D for the calcium to be absorbed at all.

The reason for not taking the calcium tablets within 2 to 3 hours of your steroids is that they interfere with the absorption of each other. If you are not absorbing the steroids properly you'll effectively be on a lower dose. I found my PMR symptoms improved markedly after I changed the regimen to steroids for breakfast and calcium for lunch and supper - supper because taking them at night is held to improve the bone density loss seen overnight (yes, it's that quick!)

Cramps - try taking magnesium supplements. I live in Italy and everyone - including doctors - over here recommend it and I have taken them for ages and notice the difference when I forget. Especially in summer. Night sweats - had them before and after steroids but they have finally just about disappeared. It's very difficult to tell what is due to which as many things are manifestations of both! :roll:

good luck,

EileenH

Hi Eileen,

More and more interesting info keeps surfacing on this sight. Thank you for the info re the calcium suppliments and how they are most effective. I will definattly be taking your adice about taking them with lunch and supper and eating more oily fish. Magnisium suppliments also sound good. This is really valuable info and would have expected my GP or the consultant to have explained this in more detail. it is becoming really hard to differentiate between everyday/age related niggles and symptoms or side effects of PMR or medication. Thank goodness for sites like these that let us share experiences and knowledge.

Note to Mrs K and everone who had a giggle at the 101 gaff! Lets keep laughing. Please include me in any of your funny PMR related stories or experiences. It is good to keep laughing. :lol:

Regards

Jan101

Hi Jan!

GPs and consultants have mostly never actually had PMR and don't spend enough time talking to any of us to find out what it may really be like! Most of us who reply regularly on this forum have had PMR for sometime and have learnt a lot - either through personal experience or because of our own research. So join in and tell us when you find something that helps you - sometimes it might be reinventing the wheel but there is always someone new turning up who may benefit and often people don't go back through the old stuff to find answers.

all the best,

EileenH

Hi Jan,

Sorry to hear of another new sufferer. PMR is no fun but we all get better at managing it as time goes on. There is a ton of great info on this site. There has been some discussion on this site and the US one about when to take what. Prednisolone in the AM after/with breakfast and calcium at lunch is the general advice. I would suggest also that calcium absorption is helped if it is spread out over the course of the day and not all taken at lunch. Also, Vitamin D should be taken with fat as it grabs on to that for better absorption. None of this is too difficult once you get organized.

All the best,

Jill

Hi Eileen and Jill,

Thank you for your replies. I don't really think my GP does realise the implications of managing this condition. I am going to make an appointment with her to discuss my treatment. Unfortunatly in the last week I have had a bit of a realapse and have not felt well at all. More pain, fatigue and bursting into tears out of the blue. Phoned my GP and she suggested going back to 15ml prednesolone for one day followed by 10ml for the next 2 days then alternate this dose until I have my next blood test. Took 15ml yesteday and felt so much better. It is hard to believe the impact of the medication on PMR and how quickly it works.

I am a bit concerned that my GP see's her role as just managing the reduction in the steriods. She did not seem interested in any of the side effects I have been experiencing or monitoring things like calcium levels, bone density and general health issues.

I had a look on the pmr-gca-northest.org.uk web site as you suggested Eileen. It was very helpful and informative. Has anyone purchased there DVD and if so was it useful?

Well must make this all for now. Take care everyone.

Regards

Jan

Hello Jan

This is my 2nd bout of PMR First in 2002 when I was 54 at that time I did get Calcium but not the Alecdronic Acid for the bones My Dr said in the intervening years they had decided orevention was better than cure

My Dr looks at a list really to see when she last checked various things BP weight, diabetes, dexa scans and I said after nearly 2 years I am on 2 monthly blood checks and Drs visits and with the option for a monthly blood check if I feel I need it Mrs K is the expert on when you should have all these checks I dont need to worry as my Dr is so thorough

I have gone back to your first post and you said you were handed back to your GP to monitor well she isnt !! I do think you need to see her rather than phone her I am very lucky in the fact that the only problem I seem to have with steroids is weight gain Quite a lot of that is now down to reduced activity as since having a really bad flare up in Jan I have been very careful with what I do Some people on here have had very bad reactions and side effects to steroids and and the other supplements My Dr did say in Jan when I had such a big flare up that if I wanted her to she would get me another appointment with a Rheumatologist but with the information I have gained on here I have realised that is quite normal for lots of cases ( My first bout was text book 20mg to 1mg in a year then maintenance on 1mg for a year the off ) !! wish it was this time

Get all your facts what treatment you should be having and make an appointment and say you are not coping We all have to do things on a daily basis and I think the longer you cope with pain the more it drags you down My Dr is definately of the opinion that you zap flare ups with a higher dose and forget reductions until you feel better I was a bit obsessed with getting off steroids and it has taken me a while to get to grips with the fact that this is a different bout to last time and it will go when it wants to and I am reducing steroids much more slowly now

We all seem to have quite different symptoms as well as the norm and some people have other illnesses to contend with as well and different reactions to steroids and all the other supplements so it is a bit of a minefield but the more run down you get the less able to cope you are Ive cried been so tired I wanted to lie down on supermarket floors !! so see your Dr before you get there Sorry lecture over !!

Having this forum is great and there are people on here with a lot more knowledge than me and had GCA and been bedridden and there are others who are improving quickly so ther is a mine of information

Best wishes

Mrs G

Hello Jan and so sorry you've been experiencing a painful and emotional 'blip'.

Certainly, if you feel that your GP is not monitoring your condition efficiently, then it would perhaps be wise for you to ask to be referred back to the rheumatologist. A few GPs have a real handle on this condition but I'm afraid many do not have much experience of PMR (some even have none!). I was under a rheumatologist for 3 years until being discharged earlier this year as I was down to 2mgs and he felt I could \"do the rest on my own\"! (I'm not yet convinced of that, however! :lol: ) Plus you need to feel confident in whoever is treating you along this confusing journey :?

It is very common to have a couple of flare-ups especially in the first 12-18 months. The fact that you feel better having increased to 15mgs means that the inflammation has not yet subsided sufficiently to be able to cope on a lower dose.

I remember when I had one of my flares I was on 5mgs and the blood tests showed raised ESR and CRP. The rheumatologist advised me to increase back up to 10mgs for 2 weeks, then 7.5 alternating with 5 for a further 2 weeks and then further blood tests - this resolved the inflammation and I was successfully able to return to 5 but he kept me at that dose for 5 months to make sure everything stabilised before reducing again. By the way I am one of those people that Mrs G has just referred to as being bedbound before diagnosis and also contracting GCA so Prednisolone was literally magic in spite of its dreaded side effects!

In my experience there has always been additional discomfort at each reduction which usually disappears within the first week or so whilst the body adjusts but longer than that means the inflammation is not under control and an increase is necessary.

Yes, Jan, definitely get the DVD - a must for all new sufferers especially!

I wish you better days.

MrsO

Jan

I knew I had missed something off my first posting to you and have just remembered it.

In that posting you said you were a smoker - well me too.

My Rheumatologist asked the question and, as usual I was quite honest with him and told him, yes I smoked and had done so since I was 17 (I was then 68 - now older).

Now hold on to your hat - the answer was 'Well don't even think about quitting after that long smoking and now the PMR, your body would just not cope with it all\".

The ups and downs and tears and all, will reduce over time, its one of the side effects and tears are good for you. Just let it all out. You are entitled to feel sorry for yourself - so don't beat yourself up.

One thing, print the BSR guidelines off and take them with you, most GPs have not seen them as they are not members and if your GP is new to dealing with PMR, perhaps she has not had time to look them up on the NHS website site. Other PMR patients have taken them to their GP and they have been grateful.

If she asks where you got all the information, tell her about this website, the PMR&GCA UK new charity and both the Northeast website and the National Website.

Remember, and this is a hard one and sounds not so nice - you are paying your GPs salary, ergo you are the employer.

If you don't get satisfaction from a car mechanic, you change them.

Yes, I am an old hard bitten biddy with a wonderful GP practice and a brilliant Rheumatologist.

I am fortunate.

Good Luck and remember, you know yourself better than anybody else.

:evil:

Hi ladies & gents...I can really relate to the tearfulness as my emotions were all over the place when I first started on the steroids. The problem with this illness is that there are so many side effects to the treatment, and only others who have been on steroids can understand how they impact on your already fragile health. I know everyone who has gained weight will hate me for it, but I have lost weight, got high blood pressure, high white cell counts & am bruising very easily. Went back to consultant today as my very concerned GP was so worried about me and felt I needed further investigation.Another round of tests await, but consultant reckons that I seem to be in the minority of patients where steroids impact negatively on all other body systems.....aren't I the lucky one !!! we have to just keep positive and hope that eventually a degree of normality will return. I am also a smoker, but know there is not a chance in hell of me giving up while I am trying to get this under control and my Dr has said not to even bother trying!!!