Confused

[polymy]

I have been suffering with shoulder and neck pain over the past month or so. Struggling to get dressed, shower, comb my hair and get out of bed. I have been on 3.5mg pred for a couple of months. Finally saw my great GP yesterday. She took a blood test there and then and rang me back in the afternoon. Crp was 14. I cant understand why, at this modest level, the inflammation was giving me such grief? Could it be because I had already had my 3.5 mg early in the morning? As ever sensible, my GP increased my pred to 10mg for today and tomorrow, then 7 and a half for 4 days then 5 and stay there for at least a month then have another blood test. If it’s all ok I will then go dead slow downwards.

Liz.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sensible GP!

Obviously 3.5mg wasn’t quite enough - almost, but not quite, and it’s taken a little while to finally let you know. It’s like PMRpro explains, if you’re not on enough Pred the daily inflammation just builds and builds like a water tap dripping into a bucket, until it finally overflows and you have a flood!

Hope everything settles for you.

[polymy in reply to DorsetLady]

Thank you DL. I will remember!

Liz

[PMRpro Ambassador]

Did it not occur to you that the pain and stiffness was a sign that 3.5mg was a step too far? For some people the blood markers don't rise at all again when they flare while still taking some pred. But if you had kept on you would eventually have had a full blown flare.

It's like DL said!!!!

[polymy in reply to PMRpro]

Hi Pmrpro,

It did indeed occur to me that it could be the sign that my pred was too low. I would have upped the pred dose myself but my surgery has employed a “clinical pharmacist” who had asked me to come and see her at the beginning of December. She synchronised all my medications but left me with only enough pred to last over Christmas and New year. I tried to order more but couldn’t without seeing a doctor. Appointments were difficult to come by hence my suffering a bit longer. My own sensible doctor has told me I mustn’t wait in future and she will always see me on either of the two days she consults without appointment.

Liz.

[PMRpro Ambassador in reply to polymy]

ODG - I have a great deal of respect for pharmacists. They do NOT belong in that role. I even have a lot of reservations about them being used for non-emergency advice. They have a shop full of rubbish they are looking to sell - how can they give unbiased advice? Cough syrups are snake oil...

[polymy in reply to PMRpro]

Worse still Pmrpro! They are allowed to change medication. She had taken my 5mg strength pred off my repeats thus exacerbating my problem. I think the idea is to cut back on the unnecessary medication people keep ordering. Trouble with pred is that there is no precise dose that we can say is ongoing. We try to reduce but we have to increase sometimes and it has to be there for us to access.

Liz.

[PMRpro Ambassador in reply to polymy]

For goodness sake - I knew it was bad. But that bad????????

[DorsetLady PMRGCAuk volunteer in reply to polymy]

Hi Liz,

So agree that nobody wants to order too many tablets, but if the pharmacist or doctor doesn’t understand the complexities of PMR and GCA and the need to increase sometimes then it’s the patient that suffers!

When I was on doses under 10mg I had a prescription for 1x5mg, and 4x1mg per day. I left it like that even as I reduced to 5mg per day. If I found one month I didn’t need the 1mgs I didn’t order any.

That’s easy when you do your own repeat subscription, but not so easy I guess if it’s done automatically which seems to be the favoured option with many surgeries nowadays. And that’s where the unnecessary supply of medicines arise. It may work for some illness where doses don’t change, but not ours!

[polymy in reply to DorsetLady]

Hi DL,

You are right of course. You or I wouldn’t order pills we don’t need. Being on 3.5 for quite sometime, the clinical pharmacist had removed the 5mg pred which was on my repeat. She didn’t understand the complexity of pmr. I noticed she had taken off Adcal and replaced it with CalciD. This was a help I suppose in that CalciD is only 1 a day but I don’t understand how suddenly a clinical pharmacist can alter my doctor’s prescription. Had I upped the dose from my 2.5s and 1s, I would have been out of pred over the holiday.

Liz.

[DorsetLady PMRGCAuk volunteer in reply to polymy]

No I don’t know either. Our local pharmacist tried many years ago to change both mine and hubby’s medication and we kindly told her that was the GP’s job! She never tried again!

[Rokerman in reply to DorsetLady]

Hi DL - are you back from the colonies now, I’ve lost track?!

You are so right re: potential over-supply of drugs. Yesterday my wife complained that she couldn’t put anything more into the cupboard where meds are stored, due to the number of pharmacy bags inside. We emptied the cupboard of Pred/Statins/AA and Calcichew. Given that I’m currently reducing from 4.5 to 4.0mg, I reckon that I’ve got about a year’s supply of Pred......! I’ve told the pharmacy that my Dexascan showed that I don’t need AA - that doesn’t seem to have put them off ordering it. I do feel that I’m self-medicating on this PMR trip so I’ll have take responsibility for getting the pharmacy to order only when I feel I need a supply!

Best Wishes

[DorsetLady PMRGCAuk volunteer in reply to Rokerman]

Yes this automatic renewal of prescriptions sounds good in practice - and I’m sure it is for some. But as I said earlier, not really for PMR etc.

I’m still in the Antipodes for a while longer yet - just posting at different hours than usual!

Been 28deg today! Sorry UK!

[polymy in reply to DorsetLady]

Lucky girl! I’m sure you deserve it.

[Rokerman in reply to DorsetLady]

Lucky to get 8deg here today......😢

[karools16 in reply to polymy]

polymy. Does your dr know what the pharmacist is doing to your prescription? Does your dr do a medicine review with you?

I am fortunate that my Pred script was prescribed by the hospital. 12 years Pred for GCA. I do hope you feel better soon, and problem with pharmacist sorted.

karools16

[polymy in reply to karools16]

Hi Karools,

I think she must have reported back to my doctor. The pharmacist asked about Alendronic A and I said I would like a dex scan before taking it again. My doctor contacted the hosp and I will be getting an appointment soon. Doctor may not have realised the 5mg dose pred had been removed.

Liz.