2mg but what next?

[Mikeysaab]

Hi everyone

Would appreciate your thoughts please.

I’ve tapered down to 2mg and held it steady for 3months however I have residual pain/discomfort in three areas.

1. Waking up with stiff knuckles which are painful to bend but ease up during the day.

2. Pain left shoulder area near neck ( right side fine)

3. A strange sensation across tops of both legs at front. Not painful or stiff more like a dull ache.

So my dilemma is to know if this is PMR related or from other causes? The second was pre PMR but went away in higher pred levels.

Any ideas appreciated!

[PMRpro Ambassador]

Just to say that Prof Dasgupta told us in a webinar a couple of months ago that he keeps patients on 2-3 mg indefinitely as it reduces the risk of relapses. I'd stick if it were me (I wish!).

Stiff knuckles in the morning is often a sign of arthritis. In osteoarthritis it wears of quite quickly, under an hour. In RA it tends to last longer.

Unilateral shoulder pain is more likely to be due to tight muscles or injury - not saying it isn't PMR but less likely.

The legs? That's a new one

[Mikeysaab in reply to PMRpro]

Thanks PMRPro- that’s interesting advice from Prof Dasgupta. All our local gp’s are in the ‘get off it as fast possible’ camp.

OA in the knuckles makes sense as I have OA in the knees too.

I’ll get the neck/shoulder pain checked out I think .

[PMRpro Ambassador in reply to Mikeysaab]

There is a direct lnk to his webinar here:

healthunlocked.com/pmrgcauk...

Might be useful for your GPs

[Mikeysaab in reply to PMRpro]

GPs do generally seem to be fairly negative or at best non receptive to receiving valuable information like this don’t they ? Not sure why that is .

[PMRpro Ambassador in reply to Mikeysaab]

We're not professionals - which is why I try always to find a professional opinion to back it up.

[MrsNails]

Hi

I was going to say the same as Pro about the Prof & staying on a very low dose - shoulders however do to tend to persist if they’ve been injured & just became worse with PMR, l’ve always had Amitriptyline for my shoulder issues, the knuckles could be OA? I have ongoing issues with pain in my thighs of various levels.....

Have you considered 2.5mg for a month or so & have you tried a simple painkiller ie Paracetamol for your Shoulder/Knuckles?

Kind Regards

MrsN

[Mikeysaab in reply to MrsNails]

Thanks Mrs N . When I was first diagnosed my Rheumi gave me etoricixib to help with flares and Random pain so I have started using it again . I think it’s an anti inflammatory type drug ?

[HeronNS in reply to Mikeysaab]

You might be interested in this information. Frankly, if I were helped by a small increase in pred I think I'd take my chances with the pred.

drugs.com/arcoxia.html

[Mikeysaab in reply to HeronNS]

Thanks HeronNS. That’s good to know! Thankfully I have only used it sparingly eg one a day for 3 days then stop . Rheumi said use it only when needed but I’ll try and steer to more conventional pain killers .

[HeronNS in reply to Mikeysaab]

Good. I think it best to keep heavy-duty painkillers to a minimum where possible. Years ago I had a broken leg. Before being sent home they wrote a prescription for FIFTY oxycontin. I took one look at that and said, I'm not having that in the house. An hour later I got a different prescription from another doctor, for 20 Tylenol 3 - which it took me a whole year to use up, with a little help from hubby. For the purpose prescribed I only needed about three, for the first three nights of my recovery from the fracture. The rest went to future migraine and sinus headaches. On several occasions over the years I was given samples of and prescriptions for Celebrix (a cousin of your med) which, when I googled, I decided shouldn't even be on the market and never took. Horrified as I was to have to take pred for PMR I still think it's the better option. Less likely to kill me.

[MrsNails in reply to Mikeysaab]

Yes they are an anti-inflammatory but it’s definitely worth having a word with your GP to ensure it’s OK to take with your Prednisolone.

Hope things improve soon

MrsN

[EdithWales]

Hi Fellow Saab lover

I see that you have only been one of us for 2 years. You have done very well and I have to add to the caution of my two friends. I have got down to 3 then flared, the disappointment and frustration of going up again is awful, please take care. These COVID times are still very stressful for all of us anyway, maybe wait and see how it goes.

Mine’s a soft top by the way.

Take care

🥂

[Mikeysaab in reply to EdithWales]

Hi EdithWales

Saabs are a good antidote to PMR especially a nice vert in the weather we had a few weeks ago !! Thanks for your tips too.

🚙 mines a Sportswagon