First flare up>

Wow, wasn't expecting that! 3 days in agony, neck, shoulders- worst they've ever been. Hips not too bad, bearable. Listening to your previous posts I increased from 15mg to 20mg Pred. Relief coming at last! Will visit GP next week - didn't have energy to drag myself to see him after all those hot sleepness nights. GP pressurising me to reduce as I've been on 15mg since Dec 2016 but each slight reduction I'm in pain (another reason to just self medicate to see what works). Feeling almost human now, been for potter around garden. Talking of the garden - perhaps I should apologise to any traumatised neighbours who've seen me in my nightshirt at 3am trying to cool down. We might get PMR and other ailments as we age but who cares what people think. I did cool down! At least I didn't go commando!

[DorsetLady PMRGCAuk volunteer]

Hi tansy13,

Glad to hear you got relief at 20mg. As you seem to have so much problem reducing are you using a slow plan or trying to drop dose overnight? Most people who have problems find that using a slower method, either like one below or one of the others does help.

1st week - Sun & Thurs new dose

2nd week - Sun, Tues & Thurs new dose

3rd week - Sun, Tues, Wed, Thurs new dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose

5th week - all week new dose

You must remember to do your bit as well - not too much gardening - commando or otherwise!

Take care.

[Hidden in reply to DorsetLady]

Thank you Dorset Lady. Was told by to reduce 1mg every 2 weeks by consultant, only ever got to 14mg. before having to go back up again. Will show (educate) GP slow tapering plan next visit. Will pace my activities better , lesson learned

[piglette]

If you have been having pain and have just increased to help the pain, do not reduce until you feel happy everything is OK, it will only cause problems. I had a rheumatologist who insisted I reduce continuously. I remember going in one day feeling dreadful and hardly able to walk. He wrote a letter to my GP saying that I had no pain. I wrote a pretty tough letter to him, in reply he tried to make out he was brilliant. He is now an ex rheumie.

[Hidden in reply to piglette]

Thank you piglette. I did feel rheumi rushed appt. Said I would be ok in 1 yr! He also prescribed AA tablets without dexa scan and no discussion. After reading side effects they're not suitable for me anyway. Good job we've got each other for support and advice!

[piglette in reply to Hidden]

I have a GP whom I also no longer go to who is obsessed with AA. We used to have stand up rows about it, just when I thought I had got my point over, the next time I saw him he tried again. It was like Groundhog Day.

It is nice to know your rheumie has a crystal ball!

[SheffieldJane]

Hi Piglette, what arguments do you use to bat your doctor off about AA?

I am being put under pressure to take it. I had a DEXA Scan which was better than average for my age, the GP is now denying that I was told that, she referred me to an Osteoporosis Clinic where they took various bloods but asked me nothing about my medical history at all. I have to return for the results and I know there will be intense pressure to accept an AA prescription. I think the side effects sound horrendous and I have heard of a study that found that people were getting fractures while on this drug, never mind the rotting jaw. I just know that if take this drug, the precarious balance of wellness I have achieved will be gone, good spirits etc.

I have tried to put this to my GP and she just sort of smiles at me as if I am a fool and talks about me ending up in a wheelchair. Why are they sooo keen that we take a drug that the Jury is out on?

[Judy211 in reply to SheffieldJane]

Hi Sheffieldjane

My GP automatically prescribed AA too. Before popping the first pill, I read up about it, asked for advice here and decided it was not for me. I told my rheumy and he was happy with my decision on the basis that my DEXA was ok a year ago, my diet is good, I walk most days and I don't drink alcohol ( except the odd glass of bubbly on special occasions!). He has organised for me to have another DEXA in July to see whether there has been any change in bone density since I started on Pred in March...if there has I guess there will be another conversation but I'm keeping my fingers crossed. Maybe there will be a miracle and my bone density will have improved!!

Judy

[piglette]

Hi Sheffieldjane

My conversation:

Doctor: You should start taking a bisphosphonate

Me: Why?

Doctor: pause .... you are on long term steroids so you should take them.

Me: What bisphosphonate are you suggesting?

Doctor: mumble mumble Alendronic Acid. (got him in the corner)

Me: Why that product, have you thought of any of the biologics for example? (me playing games)

Doctor: (obviously knows very little if anything about any other bisphosphonate besides AA says nothing)

Me: Wouldn't it be more responsible of you to check my bone density before offering Alendronic Acid? (I have had a Dexascan which was brilliant. The doctor had not bothered to check this though)

Doctor: I will arrange a Dexascan.

Me: The results from my Dexascan were excellent, you can see it on your computer.

Doctor gives up.

[PMRandRA in reply to piglette]

BLOODY useless! ( excuse me!)

Crikey, if I made that many errors in my job, I would have been fired!

I wonder if their attitude is because they believe our treatment is free? Because it ain't!

[piglette in reply to PMRandRA]

Hi PMRand RA,

That was another conversation I had with him about free treatment, he had refused to let me have a scan on the NHS but was quite happy for me to go private. I noticed he was on first name terms with the consultant. Probably hoping for a Christmas present. The consultant diagnosed where my doctor had failed. I complained to my doctor that he did not refer me on the NHS. His reply was that "you have a diagnosis now, what are you complaining about?" I said because he had cost me a lot of money. His reply was "well I am free". I saw red and said that as a taxpayer I was helping to pay towards the one hundred billion pounds which went towards his salary........

[SheffieldJane]

Thanks for that. I can imagine being made to feel depressed and scared about refusing it.

[Jackoh]

I too was told Sheffield Jane that I had to take AA. I just said no and asked for a dexascan. The GP I spoke to said that they didn't normally give one - I said I would like one. I think this was repeated about three times in the same conversation( broken record technique!) and then he finally gave in and sent me for one. I don't think though they are very expensive privately so you might want to get one done privately ( if not agreed with GP) If consequently results are good this is added ammunition to use to refuse AA if necessary. The idea is that ( also from a previous post) that we work together - patient and GP to reach a consensus on what treatment we need/ want to take. Oh that it was that easy! All the best with your journey with this. Jackie x

[PMRpro Ambassador]

If anyone really struggles to get a dexascan from their GP there are a few places that do them quite reasonably; Southampton is now £75 and the London Imaging Clinic is £65. Other private places are over £150.

But any patient on pred SHOULD have a dexascan done within 3 months of starting pred and a decision about what do do made on the basis of that. AA shouldn't be used for patients with good bone density - but a repeat scan 1 or 2 years later will show if pred is changing your bone density. Without a baseline scan you CANNOT blame pred - lots of people develop osteoporosis without ever being on pred and other have a higher than average bone density and taking AA would be silly. Mine hasn't changed in 8 years of pred - I'm so glad I stuck out not to take it.

[Hidden in reply to PMRpro]

Thank you PMRpro for dexascan info. If GP doesn't agree I will definately have one done next time I return to London. Hopefully my bone density is ok - last scan 20 yrs ago was very good but long time ago. I've never followed faddy low calcium type of diets - born in 50's I was brought up on dairy products, fresh veg, bean and lentil type casseroles/soups and not too much meat. We were probably last generation not to have ready meals, or access to so many snacks. Here's hoping!

[nymima01]

My medical history and history of tests is significant! It would take all day for a specific doctor to pull it all apart and zero in on his/her field of expertise! It's all on a computer as all my doctors are in one group. (I now have 8 doctors). I have to have my own knowledge of my test results ready for each doctor when I meet with them so the doctor can deal with what I see him/her for. For example, I recently had to see a gastroenterologist because my liver is swollen and I have lymphoma in my spleen. I therefore have portal hypertension going on. (I also have PMR). I recently had a cat scan done on my abdomen due to the lymphoma to see if it was elsewhere in my abdomen area. I brought a copy of the cat scan report with me and I highlighted the entry in regards to my liver and the portal hypertension so the doctor can see what she needs to see and I did not have to go through all the other jibberish that doesn't pertain to her. (Her part is located deep within the cyberspace of my medical hx somewhere.) Of course we covered the other aspects of my medical history, but in the short form as opposed to me going back to the start of all my medical woes. Just an example is what I'm trying to convey. I can see the color fade from the doctor's face when I have to start at the beginning of my recent medical journey.