Mixed feelings following first GP appointment since PMR diagnosis

[sewinggranny]

Started on 20mg prednisolone mid June, four weeks later reduced to 17.5 mg for four weeks, no problems, reduced to 15mg last Friday. By Monday the pain was back and I was very breathless; when I saw GP face to face, two days ago I was told to go back to 17.5 for two weeks and then try again. I raised the question of having a bone density scan before starting Alendronic Acid only to be told that they are not available for over 75's. When she checked, my oxygen levels were low and pulse rate was over 122 so I was sent straight to A & E for further investigations. came home last night with antibiotics for a chest infection. The blood tests were contradictory, suggesting it was a blood clot in the lung and showed renal failure, I had a blood thinning injection, also had chest xrays , then moved to Acute Emergency Care. Yesterday I had a CT scan (with dye). I have to go back to Acute Emergency Care when I have finished the course of antibiotics, (at least that won't be over 12 hours in A and E).

I am feeling confused. I had taken my peak flow readings for asthma, before I went to GP and they were normal, usually the readings would drop right down when I have a chest infection. The breathlessness was very severe and nothing like I would normally experience with a chest infection. I haven't had a cough. I overheard one doctor mention thyroid, and when I looked it up today, my symptoms certainly seemed to correspond more to that. My anxiety levels are through the roof at the moment which probably isn't helping the situation.

[DorsetLady PMRGCAuk volunteer]

Oh dear sorry to hear your problems and no your anxiety won’t help your PMR.

Stick with 17.5mg as suggested -but then, depending on other things perhaps try reducing by smaller amount -1mg or halve your 2.5mg tablets. But only if you feel able to…by then GP should be aware of other issues - so hopefully won’t be pushing you to reduce.

Please keep us informed -and hope things improve for you 🌸

[sewinggranny in reply to DorsetLady]

Thank you. I did wonder if a slower taper might be better. I've looked at the tapering plans on the forum and most seem to start at 15mg but I was on 20mg initially.

[DorsetLady PMRGCAuk volunteer in reply to sewinggranny]

You can start a slower plan at any dose, it just that most don’t have issues at higher doses so that’s probably why they don’t show up…Mine is based on excel spreadsheet so you just put the current dose and the dose you want to reduce to…..but with any one, you select the doses….

[PMRpro Ambassador]

That sounds rough - the ED isn't a place to want to be at present. My daughter was on a paramedic shift the other night, spent 7 of the 12 hours queuing outside her own ED to hand over patients to a packed department.

Hypo or hyperthyroid? Thyroid disorders should be ruled out before coming to a PMR diagnosis.

[sewinggranny in reply to PMRpro]

At one point there were 73 people waiting, 8 ambulances outside. A lady by me had been waiting 26 hours for them to find her a bed. The staff are great and most apologetic for the delays. a nurse was handing out blankets at 3am and offering to make hot drinks for everyone. I've looked at both Hypo and Hyper thyroidism, the raised heartbeat and anxiety seems to be hyper, whereas breathlessness seems to be associated with hypo thyroidism. I can't remember being told I had a thyroid problem before. I will just have to be patient and hope all will be explained at my visit on Tuesday

[PMRpro Ambassador in reply to sewinggranny]

The staff are at breaking point - there is no respite, finish with one patient and there are 3 to move on to.

[fmkkm in reply to PMRpro]

What’s causing the increase in ED visits? Is it Covid related or general stuff?

[PMRpro Ambassador in reply to fmkkm]

The daughter says most of them are proper poorly - and all too often are saying "I couldn't get to see the GP" until eventually they are sick enough to call 999.

Plus the usual drunks who have to be babysat until they aren't a danger to themselves.

[sewinggranny in reply to fmkkm]

Our practice has been staffed by different Locum doctors for several years now, it is not unusual to phone up and be told there is no GP that day and to ring out of hours or go to A and E. The nurse in triage said she'd had loads of GP referrals that day.

[piglette]

A&E is definitely not the place to be at the moment, out local hospital is like Picaddily station (when the unions are not on strike!). Your GP is lying through her teeth about Dexascans for over 75’s. The reason a lot of doctors don’t bother is they have written everyone off over that age and just dump them with bisphosphonates. You are perfectly entitled to have one although there may be a wait.

[sewinggranny in reply to piglette]

Thank you, GP did say we put over 75's straight onto medication and there would be a 12 month wait for an appointment anyway. I thought perhaps it was a rule just for our local health board here in Wales. I am taking so much different medication and trying to cope with side effects already, I wanted confirmation that it is necessary before taking Alendronic Acid as well,

[AyJayBass in reply to sewinggranny]

I had a DEXA scan last year aged 78. South Bucks NHS Trust. I had to push for it.

[piglette in reply to sewinggranny]

There is a shortage of Dexascans. In my area we actually fund raised for it and I think it is used full time for other areas too! Camilla (Prince Charles’ wife) came and opened it as her mother had bad osteoporosis. I think it is awful the way they just dump older people on drugs. A lot of which act against each other and cause horrible side effects. I suppose older people don’t complain and it is the easy way out.

[PMRpro Ambassador in reply to piglette]

And yet polypharmacy is known to cause a lot of problems requiring hospitalisation in the elderly. Maybe it is just a dastardly trick to bump us all off ....

[piglette in reply to PMRpro]

That’s it, they have to save the billions somewhere!

[PMRpro Ambassador in reply to piglette]

All those state pensions and benefits ...

[piglette in reply to PMRpro]

There is no end to the advantages and cost savings!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well they’re not having mine yet!

[PMRpro Ambassador in reply to DorsetLady]

Nor mine - so I'm staying here where ambos turn up in 15 mins and hospitals still have beds ...And I can see a GP!

[seamaid]

I concur with piglette I am 81 and had my Dexascan few weeks ago . so do not take any nonsense from your GP .

[Poshdog]

Can't really be of any help to but feel for you greatly. It is no fun to be caught up in a failing system when one is poorly. Experienced it with OH. Very best wishes xx

[MrsNails]

Just a quick dip in - your asthma or breathing wouldn’t be as bad a usual with the Chest Infection because you are already on Prednisolone - so they may even up that if your levels remain high. You are being well looked after which is excellent at this current time.

Get Well Soon xx

[MiloCollie]

Oh no! Rubbish. Hang in there. Good that you’re being supervised. Take care xx

[Wallysma]

Sewinggranny.....I am so sorry things are so crazy for you. I cannot imagine. Sending hugs your way! I understand about the prednisone shuffle....I am in the same place. I have a good rheum., but I didn't feel like I really got a grip on what can, should, might.fo and when and why. I have lesrned more here than my doctors or Google searches and feel like I have a plan at least. Stay on the higher dose until things get better....it's less about schedule....I would say I.feel like it is working for me. I was on 15 but I went to 16 and it's now a few days and it seems ok. Will see. I.hope you are able to find out exactly what is what. Thyroid is really important...it can mess you up if it's off. I have Hashimoto's for 25 years or so. I can tell when my.meds need adjusting. Please have them test you.

Take good care. I hope symptoms improve soon. Mickie

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