Rheumy revisited

After dexa scan last thursday, back in same dept today for injections in my shoulders to help with pain. Didn't realise that rheumy would be there. Results in - slight bone thinning around hip joint, but no obvious wear and tear. ESR and CRP results within 'normal range', no infection shown in bloods. I did say that these were not definitive and low counts were possible (she agreed on that point). She's still desperate to reduce my steroids! Also thinks it may be mix pmr (or not)/osteoarthritis/fibromyalgia. Translates as not a bloody clue. As I'm having pain problems on 16mg at present her answer again is to follow this plan below:

10 May 15mg

10 June 15mg/12.5mg alt days

10 July 12.5mg

10 August12.5mg/10mg alt days

10 sept 10mg

Next appt should be due at end of this.

Rheumy did say not to up dose and to call her if problems. I'm off at end of may for a few days to see my mum in London and attend a wedding. I tried to explain that even doing small chores leave me doing nothing the next day, let alone travelling 200 miles. I really hope this regime works and will give it a try - but I'll be on the phone if I'm in more agony!

Still, tomorrow is another day!

[SheffieldJane]

Well done tansy13! That did make me laugh when you said she diagnosed you with nabc. We’ve all got it sometimes not a b****y clue. I would still secrete a couple of extra mgs about my person for the journey and the wedding and come straight back down when it was all over and continue tapering. Er but that works for me.

[Hidden in reply to SheffieldJane]

Thank you sheffield jane. Will definately have a stash of extra drugs about my person for my trip. I also took a few extra today too! Haha! Surprised rheumy hasn't got ex sniffer dog in consulting room to check out us ' pred abusers'.

[PMRpro Ambassador]

Of course the bloods are low - you are on pred!!!!!!!

[Hidden in reply to PMRpro]

Amazing, isn't it! l

[DorsetLady PMRGCAuk volunteer]

Hi Tansy,

Book special assistance on your train journey, especially if you on your own, and book seat! Easy to do online or speak to local station to get central contact.

Won’t comment on Rheumy!

[Hidden in reply to DorsetLady]

Thank you Dorset Lady. Have already done so. I always book assisted travel for my daughter, staff provide ramp for wheelchair and very helpful.

[Hidden in reply to Hidden]

Further to injections in shoulders, I spent a miserable night in awful pain. Apparently this can happen, pain easing slightly today so taking it very easy for next few days.

Got e mail from national lottery saying contact us about your ticket. Whoohoo! Won £25 recently but maybe europe millions has coughed up for me as I rushed to log in.. Thought I would be able to stand a round or two for my fellow sufferers, research a cure even.

Sorry everyone, it was only £3.20 - enough for a large cappucchino but the thought was there.

[Suziib]

Hi Tansy, I just wanted to ask about the injections is this on top of taking pred? I weaned myself off and have been off for nigh on 6 months, however my shoulder pain is the bane of my life some days. Not the same as when I first had PMR as I now have continually get a pins and needles effect down my arm, not sure if the pred masked the symptoms of a trapped nerve or similar?

I am due to see the rheumy in July but they just wanted me to take Methoxatrate on top of pred when all I had wanted was advice on the reduction due to the horrific weight gain I was experiencing as I reduced down.

I should say that I have not seen my gp or had any tests for over a 12 months.

[PMRpro Ambassador in reply to Suziib]

Have YOU made any attempt to see your GP? Your shoulder pain needs to be investigated with at the very least an x-ray or MRI - it is unlikely to be PMR but there are a few things it could be and they are unlikely to get better on their own.

[Suziib in reply to PMRpro]

I had 4 years ago an operation to release a trapped nerve at C5/C7. The following year I was diagnosed with PMR, and put on 40mg of Pred..

my GP was great in the beginning however she seems to let me self medicate, nurse for BP etc

So no I haven’t been to see her. It is too stressful to try and get an appointment.

[PMRpro Ambassador in reply to Suziib]

I really think you need to - if only for an x-ray. Then you can go from there.

[Hidden in reply to Suziib]

Hi Suzib. Injections on top of preds. Pain was awful first night. Tried ibuprophen . didn't work - so pmr? Have reduced by 1mg to 15mg as rheumy requested today. Shoulders much better today. Apparently some people have flare up and pain gets worse before getting better in a few days.

Just had call from my surgery, gp wants to see me next week, probably to discuss blood test results etc . Can hardly wait! Doesn't your gp call you in for blood tests or discuss your illness? If an appt isn't necessary my gp does call me and has a quick chat every so often.

[Suziib]

No, last communication from GP was can you attend nurse appointment for flu jab and blood pressure check.

Which was pre Christmas!!

I saw a locum back last year when I was concerned about weight gain as I reduced my prediction who told me to count calories.

When I saw my own GP a couple of months later she asked if the weight gain bothered me!! Then refered me back to rheumy and that’s where it ended.

[PMRpro Ambassador in reply to Suziib]

Weight problems when on pred don't necessarily do well on calorie counting. Pred changes the way you metabolise carbs - cutting the carbs drastically has helped a lot of us lose weight or avoid gaining any/much.

But then, a friend told me the other week the "Diabetes Guru" GP in the practice told HER it was all about calories - and it certainly isn't in her case! They know no nutritional stuff!

[Suziib in reply to PMRpro]

My weight was drastically increasing as I reduced, some weeks 2lb.. with no carbs and exercise. When I was explaining to the rheumy he said “are you sure you are not just noticing it more now” (summer) when I explained 2 weeks previously I had bought a dress and now it would not even go on plus I was now buying bigger shoes also as my feet were now fat!! I think he then realised I was not imagining it. However no help offered in that respect, so I decided there and then that there is no interest in PMR patients just give them Pred then let them spend the following months and years reducing. They have no clue how some days it’s so difficult to put one foot in front of the other, how tired you get for no reason, how fat and bloated you feel. That the struggle to get from A-B seems like a marathon, when weeks or months before it was part of your daily routine. I only wish they understood this instead of just throwing constant tablets at you.

#rant over

[PMRpro Ambassador in reply to Suziib]

I think you have been particularly unlucky - but I hear you. I just wrote something similar on another post. We know more than many doctors because we have walked the walk - and when we tell them clearly what living with this is like some of them do listen and learn from us.