Frustrated !!

Eileen H..... in the nicest possible way you have just made me weep!!! Not hard when I have been weeping in pain and frustration the past few days :roll: :roll:

Your advice is succint and I appreciate every single word. I do go onto the PMR North East site and read their info which is excellent and I have also bought and watched their DVD which is excellent too...... had not thought of pointing my doc in that direction although she pointed me in this one!

I am going to ask my husband to read what you have written so he too understands just why I am in this 'state' at the moment.....

Hoping the 15 mg will have kicked in tomorrow as cannot bear the thought of yet another day of this horrendous pain which makes me want to throw up :roll: :roll: Have been wrapped in the duvet on the sofa most of the day, keeping warm, sleeping and feeling like I am 110.

I feel 'armed' with a lot of knowledge from you lovely girls here and so therefore stronger in order to face my doc next week and insist I stay on 15mg for the next month at least before we try another small 1mg drop etc etc and am prepared to stand my ground on this because I am the one in pain.

I am 59.... will be 60 in a few months. I am the one whose markers did not show any significant rise in pain levels in the blood tests done prior to seeing the rheumy... I think the most it ever was when pain was dreadful was 12 :roll: Both rheumy and doc have told me no use using blood tests to ascertain pain levels because of this and they will have to be guided as to how I am.

I am unable, at the moment, to do anything in the house and certainly not feeling irritated by that.... housework and dust always there! Ironing piling up but hubby will have to do his own shirts for work next week and sheets can go on unironed!! He came home and cooked for us this evening and he will have to go and do the food shopping tomorrow etc etc

Think I will take the three things I have in my diary for next week out.... just in case...... and have a quiet week of pottering at home and getting out for a little gentle stroll daily if my pain levels have been controlled by

then!! I am sure they will be.

Thank you so much.... everyone :hug: :hug:

fiftiesgirl

As you already go to the site, read and download the BSR Guidelines on PMR Issued June 2009. Why I am saying download, is that reading from a screen can stop you from going back and re-reading to refresh your memory.

There is also a recommended dosage of steroids and reduction of same, but it has a caveat that this does not work for everyone. Also I wonder, mind I just wonder, if you are one of those people who are having a bad or non-reaction to steroids. This can happen and it needs to be sorted out at Consultant level. It may be that your GP is capable enough to deal with this problem, but mostly it needs referral to a consultant.

Our thoughts on this site are with you - but you will get through this and get a handle on it.

Fiftyes Girl, I do hope your pains are lessening and giving you some respite. We all here know how really PAINFUL is the PAIN we endure.

I got the DVD, and my husband burned a copy for my doctor. The charity is in needof founds, and it is now one that I will support.Dear EileenH and others on this site, are some incredible supportive ladies that it is difficult to find words to thank them and praise them for the dedication and time they spend in answering our questions. Here is one from me that may seem frivolous, but I am disturbed. - Yesterday I had visitors from Dublin. Lovely young couple with their two very young children. No problem. Bought in the treats, and husband provided the drinks, and entertained the children. Why did I feel so terribly tired after they left ? I had legs that seemed to fold under me and could hardly climd the stairs. I was in bed at soon as I could get there. Slept well. Woke up at 7am this morning. Had breakfast, took my tablets, and returned to bed...and slept and woke again at 11am with the most terrible depression, although quite free of pains ? Why the depression ?

Is it in my subconscious the thought that I have ( as EileenH explained to me ) that PMR will not be cured, but only go into remission ? Has this shattered my illusion that I was gradually getting rid of it, and now find it so difficult to come to terms with the reality of it ? I feel so very miserable, and so ashamed to feel like this.I should be so VERY grateful at not being in pain...But I am so selfish, that I wanted to feel like I feel this morning, without the PREDS. Forever.....I apologise for being a whimp. :oops: Granny Moss

Dear Granny Moss

I'm so sorry you feel so low today and it is probably a little bit of \"pay-back\" for all your excitement yesterday which, I know, seems so unfair when you enjoyed it so much. I feel these low days that many of us can suffer may be due to both the PMR and the steroids as when I was in bed in my first year of undiagnosed PMR I was often in floods of tears which I couldn't even control when kind friends used to ring me to ask how I was. A year later an on the steroids I still could cry at the least little upset. In fact even yesterday I found it almost impossible to control myself at my friend's funeral and literally could only say a couple of words to her husband before feeling I was going to break down and I took my leave as he was the one that needed support not me.

Now I thought the following which I read in my Church magazine today might just cheer you up a little:

FOR SALE BY OWNER

Complete set of Encyclopaedia Britannica, 45 volumes.

Excellent condition, £200 or best offer.

No longer needed, got married, wife knows everything.

***********************

APPLES

Children lined up in the cafeteria of a Catholic school for lunch.

At the head of the table was a large pile of apples.

A Nun had posted a note on the apple tray saying \"Take only one, God is watching\".

At the other end of the table was a large pile of chocolate chip cakes, next to which, in a child's handwriting, was a sign

\"Take all you want, God is watching the Apples\"

:lol: :lol:

Do hope tomorrow is a happier day for you Granny Moss, and have a nice weekend everyone else looking in.

MrsO

50sgirl and MrsK - I wonder, on thinking about it, whether maybe 50s girl needs to up to 20mg briefly this time rather than just saying poor reaction straight away? Does it mention in the Guidelines that the starting dose should be 15mg with the possible excursion up to 20mg in exceptional cases? I know it does in the papers I was reading last weekend. When my doc was reluctant to say PMR and I had the \"right down to 5mg and off altogether\" drops it did take longer to get the same level of relief with 15mg the second time round. Only a few days - but first time it had been within hours. This seems to be the tenor in several of the studies - hence the warning about not yo-yoing the dose, something which seems to be common amongst a lot of primary care providers: this desperation to get everyone off steroids asap leads to the reductions being governed by the book rather than allowing the patient experience to lead a very gentle slope downwards. To avoid the steroid dependance thing you need to get the patient off in a few weeks, 15/10/5/0 is a common scheme for other ailments where steroids are needed like asthma, COPD exaccerbations and so on - and in their ignorance the GPs think they have to do soemthing similar with PMR. By doing it they make things worse when they have to raise the dose to deal with the return of the PMR inflammation and symptoms and this complicates the rest of the story.

We do try to keep emphasising the way we all react so differently - both in the way the PMR manifests and in the way we react to the steroids - which is partly why I feel this emphasis on having the drop in dose as small as possible at any one time is important. 2.5mg is a lot - and a 5mg drop in one go is tantamount to being foolhardy with PMR, if you ask me!

There might also be something else going on of course but once it's got away from you it is far more difficult to regain control.

Granny Moss - why did you feel so tired when your visitors had gone? Well, when you are used to just being the two of you in the space you have, four other bodies is an invasion! And when two of them are junior members of the expedition - however well behaved they are it's even more difficult! Now under normal conditions you would have dealt with it no bother - but look back at what you have been through in the last few weeks. You've had a flare of your PMR for whatever reason leading to having to up your dose of steroid - which will have been a bit of a strain. Your husband has fallen and not been well with the pain so you have been worried and have had several nights sleeping badly as a result. You've traipsed haflway round the town shopping, to the doctors, spent half a night in A&E and been up to the hospital to let them take blood.

Heavens above woman :lol: :roll: , I'm 30 years younger than you and I'd have been heading for my bed as soon as the visitors were out the door! If I have a few days with a disturbed routine (and by that I just mean late to bed!) I can sleep for Britain! My husband can't believe anyone can sleep so much! I'm an eternal teenager :roll: !

As for feeling depressed - for the first time in your life, probably, you are not in control! What you can do is not up to you, it is subject to the vagaries of the PMR. And now I have gone and told you it isn't going to go away like a cold or a sprained ankle will.

It won't go away maybe - but it will get better as you learn how to manage it. And if you are lucky it WILL go away - for a long time and maybe never come back. Several people have made comments along the lines of \"why haven't you all gone mad with this PMR when you have had it so long\" - perhaps we have gone mad :wink: :lol: , but the longer you have to deal with it the easier it is to know your limitations - and strengths. It can be hard looking on the bright side when suddenly so many of the things you have done with no problem become such hard work. Last week we had visit

Eileen

They do recommend a start of 15mg and I know there was much argument that this should be 20mg.

But most of the people I know were put up to 20mg if the 15mg did not work within a few days. And in 99.9% cases it worked.

GP's do worry about steroids and I can understand that - not many GPs have PMR Patients and even less with GCA. My own practice has 3 PMRs and one GCA (me). There are other long term users but most of these have long-standing well run Charities for those conditions. And each illness has its own pattern.

It seems to me, that sometimes, we the patients, just know a little better than the experts.

I also agree with you that steroid management is a major problem and we are looking at it up North, with our pals (the medics) to see what can be done. Maybe a helpline. So applying for money left, right and centre and the economic climate is not so good.

One ray of light, there are some type of slow release prednisolone being considered, but you above everybody knows how long that can take.

Friendlier medication is one of the aims we started out with.

[b:0dcd315fa1]Granny Moss,[/b:0dcd315fa1] I can still get weepy days for no reason, its one of the side effects of steroids and I have been on them for 4 years now.

Steroids can cause depression, but you are not depressed if you can ask the question 'Am I depressed'.My GP laughed like a drain, when I asked him ' Am I depressed' he said that no patient with depression ever ask the question.

I had two long-standing friends on Friday afternoon, who dropped by complete with cakes etc. I cried. They said, if you cry when we bring cakes, we will try poison next time, then you might laugh. They had hit a 'dog tired' day. Then we had a good natter and I went to bed at 9pm.

Mrs O, lovely jokes....cheered me up a lot ! As for funerals, a have this dreadful fobia, equal to the one I suffer for spiders...I shall only go to mine, as it looks it is the one I cannot avoid....Love, Granny Moss

EileenH. Thank you for being here with us - BIG HUG :P

Mrs K. I feel privileged and so glad that I have been allowed to be a member of the *BEST CLUB* in Britain !

Love. Granny Moss

[quote:2baa567579]They do recommend a start of 15mg and I know there was much argument that this should be 20mg.

[/quote:2baa567579]

I was given 30 eleven years ago to very good effect. Does anyone know why the thinking changed? Also, as pred. has been around for so long (pre 1950s ) why are doctors so keen to get us off them quickly? Surely any major problems should have shown by now. What are the not telling us? I have complained as much as anyone about side effects but as we have no alternative it would be nice to have some reassurance wouldn't it?. My comfort is my friend who had 60 for starters for GCA and took 11 years to finally stop. Since then he has had a multiple heart by-pass surgery and several years on is fine.

MrsK. Mrs.O, Granny Moss, Glad you have all bounced back from a low day but they are hard to take and while we are in the middle of one we have to persuade ourselves it won't last and it's not easy.

Nurse asked me at my last but one visit if I suffered from depression and I said I thought I had come very near in the past but was ok now. Went away and thought about it and asked her next time why she had askes. Were there signs she looked for?. She laughed and said no but the question had been added to the routine queries. So I said but would people say they were depressed when askes. No, probably not but they'd say something as they were going out that would give a clue. Poor souls have to be mind readers as well as everything else.

Aren't we lucky if we have good friends even if they do threaten to poison us? I sometimes think I'm lucky to be alive given what an ess aitch one tee I have been on occasions.

Best to all our virtual friends. Not sure that's quite right. After all we DO really exist, don' we. BettyE

Hi all

Had a nice day out including lunch with my husbands brother and wife so no cooking !!

I have been catching up on posts and I would agree with Mrs O that I am more emotional now so dont know if its the steroids or PMR

Granny Moss I was thinking about the tiredness thing and the last 2 Fridays I have felt really tired and almost flu like and very little energy for any domestics chores!! ( surprise surprise!!) It is always my domestic day as my husband calls it getting sorted out before the weekend shopping cleaning etc I thought about it and I am usually busy and out and about Tues Wed Thur so perhaps thats it as there is nothing interesting happenning Friday the tiredness just catches up with me !!

As for the doseage as Ive said before I was put on 20mg with both bouts of PMR which as really sorted it very quickly but I dont know why I was given 20mg whether it is the practice or her own policy ?? I dont think I really want to ask her as I wouldnt want her to take it as criticism and I feel I am very well looked after I dont know how many patients she has with PMR but I do know there are quite a few people in the village who have it We have 5 Drs plus locums and I have never known of anyone in the 12 years I have lived here complain about their treatment !!!! and I have never been refused an appointment on the day My Dr always seems to know any PMR and steroid questions I ask her and she had no hesitation diagnosing PMR when I was 54 (even though my bloods were low ) but I will mention the DVD when I see her next as a lot if people never seem to know where to find information

Hope everyone is having a good weekend Nice log fire going now and the Sat papers !!

Best wishes

Mrs G

[quote:ea54dffed2=\"fiftiesgirl\"]

I am obviously struggling to come down from 15mg......... should I be worried about this? Have other had similiar problems at this level? Or do you all think it is because of the original drop from 15 to 10 which has triggered these difficulties?

[/quote:ea54dffed2]

Fiftiesgirl.

Oh yes, I know what you mean. I am experiencing exactly the same as you.

I started on 20mg, all pains went. After 2 weeks I then dropped to 15mg, still ok except for little niggle of stiffness in one of my arms. Another 2 weeks on (on doctors instructions) I dropped to 10mg. Pains came back with a vengeance..Excruiating pain in the morning in one leg, so bad it made me cry out.

Doctor has put me back to 15mg andhave been on 15 for about 3 weeks. Pain is better but still there. And its the same every morning for about half an hour, then dissapears.

I can actually I think live with this, but if I do, then I can't see me reducing my dose at all. :cry:

Have a docs appointment this Friday and I am wondering what he will suggest.

I think Fiftiesgirl, we need to take the advice of the ladies on this forum and not drop our dose too quickly. I hope my doctor will realise this. However, I'm not holding my breath. :?

gilly.

Hi all,

I'm going to add my 2 cents worth....

1st... Granny Moss, you are so right, this is a great club to belong to, even if we did join reluctantly :wink: . I think I would have been a total nut-case by now had it not been for the support that I have received on this site :oops:

Eileen H....I am always in awe of you....however do you manage to type such lenghty replies and with so much information for the rest of us....we are in-debted to you for all the research that you do on our behalf :D

Fifties girl and Gilly...I started on 40mgs April 2010 as was possibly also GCA. I came down to 20mgs fairly quickly and with no problems...but it has been a slow process to get down further. I had managed to get as far as 11mgs at the start of the year, but had a flare up at that dose and am now back on 15 :roll:

At first I was very depressed by this regression, but now I am feeling much better again, and did a two mile walk yesterday, which i was very proud of 8)

Yes, it would be lovely to be off steroids, and I know that my rheumy would love to see me making a quicker recovery.....but I have decided that quality of life is far more important than rushing to get off the drugs, and if that means years rather than months, then so be it :!:

As some of you may be aware, we will be having an election in the next few weeks, so I have been busy composing a massive list of questions for any candidate with enough nerve to ring my door-bell.

I have an A4 sheet for each candidate to record their answers, but only after they have done that will I reveal that I actually can't vote for any of them, as I will be out of the country on election day and there is currently no provision for me to vote while on holiday......can't wait to see their faces after \"wasting\" all their precious time with no prospect of a vote at the end of it :wink:

Ah...the simple joys of life....making politicians squirm :D :magic:

Hope all are having a good and pain free week-end.

very best wishes, Pauline.

Good morning everyone :D

Mrs O..... I actually laughed out loud at your two funnies and just what I needed this morning after four days of pain :roll: Thank you :lol:

Eileen H...... I too am in awe of your medical knowledge and thank you for all your wisdoms and thoughts and will certainly take them with me to my appt on Wed.

Granny Moss....... sending you lots of virtual hugs because I think you are one fantastic lady to be coping with PMR and all the upset of what has been going on in your life with you poor husband........ I too would be crawling into bed after all that and children running about the place and I am about 30 years younger so I am in awe of you :D

Gillybee....... thank you for sharing and I am so sorry you too are in pain. The 15mg seems to be working as ,although have had a bad night with the pain ( arms the worst at the mo ), have woken to feeling more comfortable and pain not so accute.... so watch this space :lol:

My hubby ( with my blessing :lol: ) has taken himself off to the north Norfolk coast for the day as there is nothing he can do here for me and he needs some respite from seeing me like this. Hopefully he will get some fantastic photographs for the next competition!

I am sitting here waiting for the half an hour to pass after taking the Vit D tablet and desperate for my first cup of tea :roll:

My thoughts are with you all ( Eileen H am impressed you ski! Something I thought of doing in my younger days but never got around to it and certainly won't take it up now but must be an exhilarating feeling ....so you enjoy your morning sessions on crisp snow :D )The hostess with the mostess :lol: :lol:

Have a good day one and all....don't know how I would have coped with any of this without having 'found' all you lovely girls.

Good morning fiftiesgirl

I'm so glad that the 15mg now \"seems to be working\" and I hope that the improvement in relief of pain continues over the next week or so and, hopefully, with a lengthier stay at that dose it will stabilise and get that inflammation under control. :ok:

I can so emphasise with your husband receiving your \"blessing\" to have an 'away day' :wink: - I have actually had feelings of guilt during my lengthy journey with PMR/GCA because I felt that I was 'spoiling his fun' too! :roll: However, I don't think he feels too hard done by........he works part-time with a school full of lovely young female teachers and even recently had a day trip to France with my friend (our son's Godmother)! :roll: He's been wonderful and definitely stands by his wedding vows \"in sickness and in health\". :D

So you have a good relaxing and peaceful day today too :zen: .....I don't think I'm going to be doing much as I'm just off to watch Andy Murray win his first Grand Slam! :tennis: :P

MrsO

Hello all

Pauline I think if you have the right mind set over this illness it really helps

When I had to up my steroids from 4 to 15 last January I certainly wasnt in a good place mentally and that coincided with all the snow so I felt very housebound

The blip came as a real shock to me as though I had had it before I knew far less about it then than I do now as I didnt really need to as my first bout I was the classic terrible pain until I went on steroids then very quick relief then no problems with reductions and off steroids in 2 years and Im hoping Lizzie Ellen is following that path

I didnt even know you could get it twice !! I had met several people who had had PMR years before and were fully recovered and no problems 10 years down the line so it was a shock For a while on here I didnt find anyone who was on their 2nd bout and I was pleased to find some people on another website who had just to know I wasnt an oddity !!

I didnt really feel much better till March last year so I can understand how a lot of people on here feel as you also seem to have a lot of time to think about things when you arent following your normal lifestyles So Im pleased to hear you are feeling more positive and enjoyed the walk I found 2 miles of my nordic walking was plenty for me last week as my muscles have a long way to go yet and I find it strange not having the stamina now

Im sure all your politicians will be very uncomfortable with being asked direct questions Perhaps you should have one of those little dictaphones so you can say when you get in power I will hold you to that !!

Hope everyone has a nice day sun shining but very cold so off to see the horses

Best wishes

Mrs G