Doctor's Visit

Hello granny Moss

As Mrs K isnt on now I thought I would answer for her !! Alternate day therapy Eileen does this and it is something you have to work up to gradually If you should be on 9 mg a day you would be aiming for 18 one day and noe the next but you would have to start slowly 10 one day 8 the next then 11 one day and 7 the next 12 one day 6 the next and so on till you got to the 18 and none

The idea behind it ( Eileen knows all the technicalities !!) is to shock your adrenal glands into working again as in some cases long term use of steroids stop them working and they produse their own steroids and help you deal with stress

I did think about trying this myself but I was a bit worried about rocking the boat and have just decided to go on a very slow reduction programme instead

Hope you are feeling Ok today I love all your little jokes and comments I have always been drawn to people with a sense of humour Not keen on people who are too serious especially if ther main interest in life is themselves !!

Didnt have a very good start to the day Fell out of bed !!!!!!! I will explain We ( or I should say my husband is !!) decorating our house from bottom to top ( did the bits people see first !!) and we are in our spare room and the bed is smaller , the alarm awoke me with a start ( its on the opposite side of the bed ) and I turned over and ended up on the floor to my husbands surprise !! Luckily it is a very low bed unlike ours

I dont think I have done any harm apart from the shock !!

Boring day today domestic chores and shopping

Have a good day

Mrs G

Dear Mrs G ! Falling out of BED ? :roll: All those exercises should only be attempted when you are on safe ground. :P

I am glad you did not hurt yourself, as none of us wants to have to endure extra pain to the lot we already suffer. It is extremely difficult to maintain a sense of humour, with the \"blessed\" difficulties we come across in our daily life....My husband (89) tripped over a footstool in the living room. Hurt is side (ribs ?) and was going on so much with the pain, I got fed up and called the doctor. She came, and asked him to lay on the setteee. He went over while \"dropping his trousers ?...and promptly tripped over them and fell over and flat on the settee...The doctor looked at him and said : There you go again !...and we all fell about laughing....What else could one do ? :roll: Love . Granny Moss

Dear Mrs G and Granny Moss

I really feel guilty giggling at other people's misfortunes but both of you have really made me chuckle this morning with the vivid descriptions of your antics:lol: But seriously Mrs G I do hope you haven't hurt yourself. :shock:

I, too, had a rude awakening at 5 am when the new burglar alarm went off - hubby actually slept through it :roll: and left it to me to chase anyone away! Checked and everything was secure but I couldn't go back to sleep so with friends to dinner this evening I am going to try and have a cat-nap :cat: beforehand. Off to dust the bits that show now! :wink:

MrsO

Mrs K,

Hi again. I asked the radiographer about future dexa scans, and she said another one in 3 years time, which I thought was rather a long time, but she said any deterioration bone-wise is very slow. With a bit of luck and the wind behind me I may be off steroids in 3 years time! That would be good. Reduction is going well so far, 1 mg at a time, 15 days on each amount. I'm told it gets more tricky when reaching 7.5, but that won't be for a couple of months yet. I'm not pain free, but I don't expect to be with this problem, and it's nothing I can't handle. Sorry, but what's ADT? I am on 10 mg at the moment, in 10 days time down to 9 all being well.

Cheers,

Molly.

Mollycoo

Radiographer wrong, if you are on long-term steroids actually the Consultant can refer you anytime at all - but they normally wait one year. My GP insists on one per year - but I think that is because I was on higher doses due to GCA and had two flares and only got down to 3mgs 6 months ago.

ADT Alernative Day Therapy. This is in the BSR Guidelines on Diagnostics and Treatment, but it cannot be used till you are on 10mg or below.

Mrs G has explained it in her answer to Granny Moss (two bits above your question) and Eileen explained it under ADT heading.

You can always print the guidelines off and discuss it with your medics.

Knowledge is power.

DEXA scans - MrsK, it depends on the department whether you can get one done after a year. The Dexa scans in Durham were done in my husbands department and I had the first just after he retired, about 3 months into taking steroids. I asked the GP for a request last summer, for one just over a year after the first. It was turned down by the consultant rheumatologist in the hospital on the grounds I hadn't been on steroids for a year yet. All GP requests are seen by her to exclude inappropriate referrals to save money (their \"price\" for dexa scans was about £80 I think) and keep the waiting times OK. I rang the GP to ask if she could try again for the next time we were to be back in the UK when I would have been on steroids for a year and a half and she did so - and the same consultant again turned it down on the \"2 year rule\". Since it was his old department we were able to ask the new head and she told us more about the results than I had been told by the GP and the consultant actually said I didn't need to worry about skiing (which WAS a niggling concern!). The consultant also said that the biggest amount of density loss is in the first 3 months of taking steroids and after that it slows and is actually low once you are on what are described as low doses - less than 10mg/day according to some, 7.5mg according to others.

Part of the \"wait 2 to 3 years\" bit is actually because the DEXA scans are not very sensitive - they show the general state and any lower density patches in the bones but the level of sensitivity means quite a change in density is needed before it will show up in a comparison of the two scans.

So - you have to get past another rheumatologist (who may not be yours!) in most hospitals to get a dexa scan from your GP. I might add though that the consultant who turned the request down was actually the rheumatologist I saw early on in the period of undiagnosed PMR and who told me the joint pain and feeling ill was just osteoarthritis. Much to my surprise, I got a recall a year later and saw her again. She basically said what on earth was I doing there wasting a hospital appointment, there was nothing to be done about the OA. This from a close colleague of my husband (they did a lot of work together) who knew who I was. I always thought it was surgeons who believed being rude indicated that they were so good they were better than god - maybe rheumatologists have been infected too?? :roll: :lol:

EileenH

MrsK,

thanks for the info. I see my rheumatologist in 2 weeks time, so will discuss my reduction programme with her then. I'll ask about ADT (now I know what it means)

Thanks again,

best wishes,

Molly.

Eileen H ...... SNAP :roll: :? :? Have no faith at all in my rheumy and spoke at length to my doc about him..... on paper he sounds absolutely fantastic but reality a different thing altogether :? He also missed my PMR and told me I had osteoarthritis ( I do have it in my right hip confirmed by x-ray three years ago) and a spinal problem

Problem was he would not allow me to SPEAK to him at the first appt and told me he had a letter from my doc and would then examine me thoroughly and come to his own conclusions :? :? Therefore he MISSED vital information from me........ what an idiot :twisted: :twisted:

Do I want to see him again...... NO NO NO :roll: :roll:

[quote:11d225f614=\"fiftiesgirl\"] Have no faith at all in my rheumy a different thing He also missed my PMR

Do I want to see him again...... NO NO NO :roll: :roll:[/quote:11d225f614]

fiftiesgirl, our PMR experiences are so similar, it's uncanny.

Back in November I went to see a private (rheumy) specialist and he missed my PMR too.

Told me that from what he could see, I was a fit women..What did he mean by that I wonder?? :lol:

I still haven't had a bill from him yet..Hmmm. 8)

gilly.

Well gillybee, over the years think I have met ONE consultant who was human and not up himself :roll: :roll: :roll:

One consultant was so awful I actually stood up and told him so and left the appt!!!!! Then had to ask my doc to refer to another hospital and consultant :roll:

I didn't dare do it with the rheumy because life was so horrendous and I was in so much pain but if I have to see him again in the next week or so will tell him what I think of him and that his diagnosis was pants and how much pain HE has left me in :twisted: :twisted:

I never did suffer fools gladly and have never been in awe of medics thankfully!!!! I will kick a*** if needs be :lol: :lol:

\"wouldn't let me speak to him at the first appointment\" - obviously should have been a vet! The diagnosis of PMR depends as much on a clear and accurate history taking from the patient by the doctor as anything else and an examination is unlikely to show much in PMR. As I keep saying - there is no test which will 100% diagnose it and it is a diagnosis made on the basis of a clinical picture and exclusion of the other things that cause the same symptoms. If all else fails, a 50 to 70% improvement of the symptoms within 24-48 hours of a challenge with 15-20mg/day of prednisolone is regarded by most experts as being fairly confirmatory of PMR. Other forms of arthritis and other ailments are also often improved by giving steroids but only PMR responds so dramatically and quickly. I keep reading in articles and hear doctors saying that high ESR and CRP levels are \"confirming\" PMR. Drivel, frankly! They merely show there is something going on in the body. The ESR is so non-specific it's not true and is raised in pregnancy (don't think that applies to us does it? :lol: :roll: ) as well as rising with any form of infection.

I went to Uni with medics (I actually started medicine but left because I realised I didn't want to be a doctor enough to starve for 6 years :roll: ) and those other highly regarded sections of society, theologists and lawyers. Most of them so far up themselves it wasn't true. I just remind them that I, too, have a degree and in that subject actually know more than they do. As I've said before - like the queen, they all have to use the smallest room, just like the rest of us :wink: .

EileenH

As you will have read from my posts I saw an awful one ( Personality wise ) also so are there any human ones out there !! and I was paying him !!

My siter in law who has a rare illness sees a Rheumatologist and an Orthapedic Consultant also but very rarely sees either of them and ends up with a Registrar instead who seem to change reguarly and with the Rheumatology one quite often have less knowledge of her illness than she does

My Dr did offer me a Rheumatology appointment when I had a blip but I decided to stay with her as we decide on my treatment together and she listens to me

Best wishes

Mrs G

EileenH so fell about laughing when I read your post!!!!!

We have a doc in our practice that we all avoid because of his attitude problem...... we all used to 'move' in the same social circles years ago and after several dinner parties with him opposite me and his wife next to me ( a nurse) made a vow never to consult him at the surgery..... had to eat my words when I was desperate and both hubby and I have HAD to see him when no other appts available... :roll: :twisted:

I have personally made a complaint about him and after my hubby saw him in the autumn ( having ended up in hospital in Spain..... thank goodness I speak Spanish!) we are NEVER going to see him again.... ATTITUDE ATTITUDE ATTITUDE...... what is his problem.....?????? We are all human beings and actually we are intelligent etc so will not tolerate being spoken 'down' to....

So am not going to tolerate a rheumy with an attitude problem and now that this site and you lovely girls have 'educated' me and the PMR North east site and their info has further educated me, will NOT allow him to treat me like this. Have a fantastic relationship with my doc ( nearly taught her children!) and she knows me really well She rolled her eyes when I spoke about his attitude with her and told me she had come across them and attitudes like this when she was a med student!

I am just BOLSHY!!!! We are all on the same journey through life.... some having more ups or downs than others.....we need to be here for one another :?

Having read this post...before retiring ?... :roll: I am glad that we are friends enough to be able to let off some :steam: I have had \"similar bad experiences with the medicals at the hospitals. But I tell them, one day, if they live long enough, they will get just as old as me! And hope they find someone to look after them as well as they look after me.

And as for having to use the small room, like everyone else, they also have to use the T/paper...... :P and hope they remember to wash their hands afterwards...... :shock: PS. Had a very horrid day today...been very crossed with questions (INANE) from a young lady from Occupational therapy (sent to me by the Hospital ? ! :roll: My daughter, (she deals with patients in distress) went into another room, because she realised the young lady was asking stupid questions, and she could see my BLOOD rising, until I could not put up with the stupid questions, and I asked : Do you have a sense of humour ? - My husband and daughter, fell apart :lol: and the young lady took her leave, and did know what to say to that ! :wink: Grannies when upset, can be letal..... :cheers: Granny Moss :wink:

Oh Granny Moss with you there!!!! You GO GIRL!!!!! :lol: :lol: :lol: