Thank you Mrs.K and Administrators

Good morning one and all...... I too had been trying to get on for two days without success...... at least back up and running..... needed advice!

Saw my doc last week and she put me up from the 10mg ( consultant told me to drop from 15mg to 10mg :cry: ) and obviously horrendous pain etc kicked in almost immediately.

She put me up to 13mg but at the week-end the pain had not been controlled and was woken in the night with pain in my hands, left hip and left ankle which was making me feel sick it was so awful.

No-one has given the go ahead to increase my dose etc if necessary so had to wait until surgery was open yesterday. Unfortunately my doc not on until today so I explained problem and a message has been left for her. Have asked either to go up to 14mg or back up to 15mg.

Receptionist great and did ask if I would like to speak to another doctor in the practice rather than wait until today..... I declined as would be a pain to have to explain to someone who didn't know me or the background what was going on..... silly I suppose.

So now awaiting my doc to contact me - :roll:

At what point were any of you good people given the thumbs up to increase your dose if you had a 'bad' period for one reason or another?

New to all of this........ do you also have days where you just feel 'out of sorts' and down for no apparant reason, lacking in energy and feeling really tired? Is this normal for PMR?

There is so much to take on board and don't know what is 'normal' or not!

Hope you are all having good days

yes we all have had bad days !!! When getting up and dressed is as much as an effort you wish to make and other people can be so annoying !!

When I had my blip at the beginning of last year 4MG in Dec up to 5mg over Xmas then complete meltdown in the early Jan snow I tried creeping up but when I saw my Dr and she said I think you will need 15mg to control this and I resisted for about a week but she was right I was still very lifeless for about 6 weeks i would have said but i was left with only minor stifness ( my original starting dose was 20mg so I wasnt quite back to square one )

My Dr is great and she has always said if you feel really bad increase the dose and then get a blood test ASAP but I have had this twice now and so understand it a bit

Hope you have some luck with your Dr today but remember stress does make you worse with this

Best wishes Mrs G

Hello fiftiesgirl

I've just lost my original start of my message to you so I think the site is having a few ongoing problems but I will cross fingers and try again.

I'm sorry to hear that you are having a bit of a roller coaster ride on the steroids at the moment.

As for feeling \"out of sorts and down\" for no apparent reason, I'm afraid we all understand exactly what you are saying and sympathise as I'm sure most sufferers will have experienced the same feelings at the outset of PMR at least until the inflammation in the body is well under control - it's so frustrating feeling that we have lost control of our lives.

As to what point I was \"given the thumbs up to increase the dose\" I was lucky in that this didn't happen to me until I reached 5mgs and tried to reduce further. At this point I was advised to increase the dose by 5mgs up to 10 for a couple of weeks and then alternate 10 and 7.5 for another couple of weeks and then back at 5 where I was told to remain for several months before trying to reduce again to ensure that the inflammation had completely stabilised (ESR and CRP blood tests confirming).

Have you had these blood tests done and do they show raised markers in line with how much pain you are feeling? If so, then repeat tests now should be a guide as to whether you should increase back to 15 and have repeat tests done a couple of weeks afterwards to ensure that that dose is controlling the inflammation before you try to reduce again, possibly to 12.5.

Do hang in there - it's so difficult for most people at the commencement of this PMR journey, but know that you WILL feel better, it's just that right now you are on a steep learning curve, but know that we are all right behind you on here. Good luck with the Dr and do let us know how you get on.

MrsO

Hi Fiftiesgirl,

I can't advise on increasing the dose as I've been lucky enough not to have to do it but, I know lots of people have, so you'll get more advice on that one I'm sure (and I see you've already had some good advice from Mrs G). What I can tell you is, that once the pain and stiffness started to subside and the eurphoria that goes with it diminishes I was plagued for a while with something more that tiredness, total fatigue is the only way I can describe it. I sometimes wanted to just curl up under a clothes rail in a shop, or snuggle down in the supermarket aisle I was so exhausted :zzz: ! I also had 'off days' when I couldn't really put my finger on what was wrong but woe betide anyone who crossed my path during these days as I was a real grumpy. The think what I hated most was what I called 'treacle brain' when I felt confused and miles away from what was going on around me. I just hated this because I simply couldn't explain how I felt, in fact I'd rather be in pain than have treacle brain back. The good news is that it went (can't tell you exactly when) and it wasn't even gradual. I just suddenly felt better. Not sure if the PMR was the culprit or the Pred. No way of finding out. I do hope you pick up soon and the Doctor can advise you on your medication. I'm of the opinion that some GP's aren't really up to speed with either PMR or steroid reduction and one of my best friend's (a GP :doctor: !) agrees with me and has gained a lot of knowledge following my experience. However I know that some of our friends here have the opposite experience! My Consultant however knows exactly how it is and spends as much time discussing Prednisolone with me as she does PMR! Good luck and let us know how you get on.

Lizzie Ellen

Thank you so much ladies........ I feel really 'blessed' that I have found this site with such a wealth of experience from you all to fall back on

My doc rang mid morning and told me to go up to 14mg but then to take it back down to 13mg in a weeks time......... told me I should be pain and symptom free if the dose is correct.

I have a lot to learn reading all your messages.

Mrs O........ had these blood tests done twice within the 18 month period when I was experiencing the pain and symptoms but they came back only slightly raised ( 12 I think the last one was!) Both my consultant and doctor tell me that it is often fairly 'common' for there to be no raised 'markers' in the blood to show the severity of the inflammation. So I have been told by both of them that it will be a waste of time to have further tests to determine my levels. We will just go on how I feel and how much pain I am in :roll:

Thank you all so much.

Hello again fiftiesgirl

Good that your Dr has called you back so swiftly and I do hope her advice to increase back up to 14 will give you some fast pain relief. Unfortunately, like a few other sufferers such as Mrs G and Eileen, your ESR and/or CRP blood test results don't increase with the level of inflammation so therefore you will only have your pain levels to guide you through your PMR journey - let's hope that once you get this intial phase under control, you will quickly start to feel much better.

My very best wishes

MrsO

Sorry meant to add \"on her first bout\" after \"Mrs G\" - brain fog! :roll:

As everyone has said, out of sorts is only too \" normal\". In fact, sometimes it doesn't begin to describe how we feel. In my other life I am confident and optimistic and I look forward to the day when I get that life back full time but get down days still even though I am now down to 6.5 and only tolerable pain most days

I think one of the hardest parts of being a PMR/GCA patient is the sheer unpredictability of the course of the illness. With a rotten cold it's usually possible to know more or less when one will feel better which is a big help.With our illness we have to accept that there will be ups and downs and manny of them before we are free.

Sorry that his may sound a bit discouraging but it's really trying to let you know in advance, as it were, so you can say to yourself that it is \"normal\", however unwelcome.

I think most doctors in a Practice would take time to bone up on your notes if seeing you for the first time. If not then don't go to that one again. Mine got stranded in the dust cloud when I needed him urgently but I was very well served, nevertheless, by the two I saw. Don't suffer unnecessarily.

Good luck to you and everyone.

Fatigue - oh yes, part of every autoimmune disease! And only someone who has been there knows what you are talking about - the usual response is \"go and have a lie down then\". It's the mornings when I feel tired just lying there that I dread because I know it will be a bad day! :roll:

While we were in sorthern Italy we walked into the town most days, flat and only few minutes so you'd think no problem. One morning my husband decided we needed to go in and find a bank - me, I just wanted to go back to bed but if I'd said that the Italians we were staying with would have been beside themselves! You should have heard the fuss when their 26 year old son had a cold (he said it was flu but after 36 hours his appetite didn't suggest anything being amiss!). So we went out - I could barely lift my feet to step onto the kerb! I just wanted to sit down and cry. And why? Probably because the day before we'd visited a castle and there had been steps! After that, I asked my husband if he remembered the tiredness he suffered during chemotherapy - that seemed to get through, but after that they walked at a snail's pace as if that was going to help. I actually find standing hard work and on a really bad day sitting too. I need a good 9 hours in bed, and if I miss any I have to have a day catching up! On the other hand - there will be days when I feel full of beans. Trouble is, then I do too much and suffer the next day! Can't win really! :lol:

And as for seeing a different doctor - it may pay dividends! Had I seen another doctor in the practice earlier I would probably have been diagnosed quicker - but the \"right\" one kept being off having babies and only worked part time so I rarely had her as an option. She's also a bit brusque and has you out of the door as soon as she's written the prescription so there's no time for questions and discussion which my favourite chap is good at - and which you need sometimes.

EileenH

How have you all helped your 'other halves' cope with this?

Obviously it is impacting on my husband's life with my pain levels, mood and energy levels. He has been absolutely brilliant but I know he is finding it very hard indeed to take on board.

I retired early so have been at home for a few years now but he is looking to retire towards the end of this year and we had so many plans for travel, which are obviously now on the back burner for the time being, because I don't know how I am going to be.

I gave him the leaflet my consultant gave me ( next to useless)and have talked to him about what I have been finding out from this forum but I know he is feeling ( quietly) frustrated by it all. He has never had a days ill health in all our long married years!

The other question is about drinking alcohol........ I don't drink much at all anyway but do enjoy a glass or two with a meal when we go out ( or when we used to go out!) but stopped the moment I got the diagnosis because I read, somewhere, it is better not to drink with this disease?

The questions keep coming and I thank you for your patience..... you must get this each time someone new comes along. :D

Hello fiftiesgirl,

I think most of us have a drink now and then, of the alcoholic variety :D

Not a case of \"the cup that cheers\" but \"the glass that cheers\"! Also, as Mrs K will vouch alcohol, in moderation, can be a relaxant and a pain killer. What a lot of us have found is that some suit us better than others, particularly stomach wise. I can't cope with white wine for example - gives me awful heartburn.

As for husbands ......!!! Well, they vary. Particularly tough if they never get ill. Mine is madly optimistic, and, having heard that \"PMR lasts 2 years\" expects me to be fine now. Oh dear :cry: I think education is the name of the game - how about printing off some of the articles on Mrs K's site? Also do tell him that you will probably look disgustingly healthy. I am fed up with people telling me I do look well! I don't have lines - just a fat face!

Anyway, best of luck - Green granny

Fiftiesgirl - I've probably read more about PMR than most and I honestly can't remember seeing anything that said it was better not to drink with PMR unless it was on one of these \"use my diet and it'll cure everything (after you've paid me money)\" sites! :lol: If you wander back through the posts on this site back before the end of last year you might get the impression that we're a load of alcoholics (we're not, honest) but there are a few of us who are not prepared to abandon one of the few pleasures left to us and I don't know we do any worse! MrsK and I have found we have to be careful about our beloved red wines as they make us feel yuk - though in my case it depends on the wine - whilst others have had to abandon white wine.

Husbands - well, I'd best not comment there too much! He doesn't get it at all - and he ran a clinical department in the NHS. I gather his patients thought he was so kind and considerate - rest of his family don't recognise that description! :roll: :lol: Though when I likened the fatigue with PMR to that experienced during chemotherapy (which he's had) it meant a bit more to him.

The northeast pmr gca support site has a DVD specifically designed to explain PMR to friends and family. It costs a fiver I think. The articles on the site will also help a bit as there are stories by people about their patient journey with PMR. As Green Granny says we LOOK well once we are on steroids - there is nothing to see. Although one description of the typical PMR patient is of someone who looks exhausted and unhappy and I've heard doctors comment on the massive difference they recognise in the PMR patient pre and post taking their first few steroid doses. That inital buzz with steroids probably doesn't help because it does wear off as the dose goes down and the steroids don't ever really deal with the fatigue aspect. You are so much better for a while but that fades.

Don't worry about the future though - most men are poor at coping with a not-100% spouse but you will improve and may be one of the 25% who is off steroids within a year with no problems. On the other hand - if you are not, there is the comfort that PMR doesn't kill, it just needs managing. And as time goes on you learn to do that - you avoid the things that really don't help, learn to say no, don't entertain the way you used to but find easier and more relaxed ways of spending time with friends and family. It isn't the perfect souffle that counts - it's the time together. And if they can't accept it they probably weren't worth it anyway! It will seem quite bad at the moment as you look back over the last month - cold and difficult weather conditions which made getting out difficult plus the stress of Christmas. Either enough to make PMR feel the end of the world on their own.

I ski - at the beginning of the season with difficulty and only very short runs. As the winter progresses I get longer and longer sessions - but sitting in the sun with a gluehwein is just as pleasureable as I look at the fanatastic scenery. This year I've been out once so far - far too cold before Christmas (-17C and wind) and otherwise it's been snowing - and next week family are coming. I won't be able to ski with them as much as I'd hoped but I can do some and then wait in a nice bar for them to rejoin me - it's not all bad! :lol:

it'll be better,

cheers, EileenH

Hi fiftiesgirl and all....ah yes...the hubby (and others) who all think that just because you look Ok and are at home all day equates to feeling fine :roll:

I had one of those days on saturday that only my fellow sufferers on this site will understand...could not motivate myself to get out of bed all day as I was exhausted and stiff, and as I had felt great the day before, I was furious that I seemed to be getting a flare up :cry:

My hubby is wonderful for the most part....he just doesn't understand that sometimes the PMR decides to remind you that it has not gone away :x

Thankfully the day of rest did the trick and I am back on an even keel again...but I shall relinquish all housework again in the future if needs be :wink:

Great to have the site back up and running...I missed my \"fix\" at the week-end.

Best wishes to all, Pauline

Hello fiftiesgirl

Like you, I have a hubby who has never been ill in his life (I touch wood as I say this!) and at 75 he is still working part-time as a DT technician in a girls' school (I think he particularly enjoys the social get-togethers with the young teachers really :roll: ). I have been very lucky in that he has been very patient (although I'm sure that his eyes sometimes glaze over! :lol: ) - I have, after all, gone from being told that I would be recovered and off steroids after 2 years to now almost 4 years and 5 if I count the first year that I was bedbound for several months with no diagnosis! :cry: .

There is a fantastic DVD available which is especially beneficial for new sufferers and it may just help your husband to understand exactly what you are going through. It's very aptly named \"You are not alone\" and if you go to the PMR-GCA North East Support Group website you will find a link for all the details. Once again, we have our wonderful Mrs K and her team to thank for this.

Hope this helps.

MrsO

Hello fifties girl

I think one of the biggest problems of PMR is we really do tend to look well !! Even several of my long standing friends tend to forget I have this when I say I cant do things

My husband is great and if I cant do things I just say so I did a lot Saturday (with my horses ) and suffered Sunday so rested as much as possible ( I am hampered by the remains of cough etc at the moment also ) I dont think my husband will forget how bad I was with my first bout of PMR as I had to wait for an appointment with a Rheumatologist before steroids were agreed as my bloods were so low My Dr wanted to give them to me but senior partner said no I was in agony by the time I got them and would cry even turning over in bed I have said this before but my bloods this time were higher ( in the 30s) but for me to be pain free I have to be around 5 !! I do wonder if we all have very different levels anyway as some people seem to start in 90s and are fine at 30 !! Confusing !! Shame your Dr has a closed mind to this Id like to clone my Dr she is great even remebered 6 years on that my CRP was always higher with my first bout and she had 2 babies in between !!

I am so with Lizzie Ellens description fo crawling under clothes rails I have wanted to lie on supermarket floors before now !! You have to become selfish a bit I had to give up my work with Riding for the Disabled as the place we do it is always freezing and I was getting too many muscle pulls I feel sorry for the people who are still working with this and glad I had taken early retirement before my first bout at 54

Good luck with your increaseed dose and just remember not to worry about your increased dose ( that can be sorted later ) The most important thing is to have a dose where you can lead as normal a life as possible

Best wishes Mrs G