Pred for PMR and GCA

[Jamie751]

I’m responding to the post by Linny3 and have not seen all 11 replies.

Since I went onto a much higher dose of Pred 5 weeks ago, having been diagnosed with GCA, I have noticed greatly increased fatigue, dizziness and depression (especially when reducing Pred from 40 to 30 to 20 every 2 weeks as advised by Rheumy)

As advised by PMRPro I have been taking Pred with food (breakfast) and I have found it helpful to have a lie down in the afternoon.

I am seeing Rheumy on Thursday morning and will ask him about dizziness and also taking Pred at 4 am ...

[DorsetLady PMRGCAuk volunteer]

Reducing from 40mg to 20mg within a month is very quick.....even though it’s what you were advised, and what the guidelines say.

However, not everybody can manage such a reduction.

Unfortunately dizziness is a side effect of Pred; fatigue due to illness and medication. Both should improve as you get lower.

[Jamie751 in reply to DorsetLady]

I was wondering whether the combination of Pred with the the 3 diabetes drugs (2k Metformin, 50 Gliclacide and Empaglifozin) plus the BP pill has resulted in the giddiness. It’s not totally debilitating, but a bit dizzy around the house and walking a mile knocks the stuffing out of me so I need to lie down for a bit ...

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Do you take BP tab morning or evening?

If morning same time as Pred, might be worth changing.

It shouldn’t matter, so long as you take same time daily - and dons doctors do suggest taking in evening. Might be worth discussing.

Walking a mile... is combination of Pred and illness. If you must do a mile, make it where you can sit and rest for s few mins on the circuit,

But more sensible - would be 2 walks of 1/2 mile each - or just the one 1/2 mile initially and build up.

[Jamie751 in reply to DorsetLady]

Thanks for that. The BP pill I take at night is Amlodipine 5mg, which the heart man said was “entry level” when I had the stent a year ago.

I also take Turmeric and a bone complex Ca/Mg 1:1 which includes Vit K.

It’s difficult to accept not being able to walk at least a mile, but I note what you say and I do listen to my body. My lady friend is a saint and puts up with my frequent “p & rest” stops!!

It’s not that long ago I was on a horse for a day at a time and I still ride when I can, but not as often as I did!

Thanks for your advice DL

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

You will get back to it- but not yet! Slowly ,slowly in all things.

[Bcol in reply to Jamie751]

Hi Jamie, I'm on the same BP tablet and strength as you but spread my tablets across about 4 hours. Sleep patterns all up the creek so tend to take Pred around 02:00 ish, a couple of Co-Codamols and a multi vitamin thing around 04:00, which generally sorts out the OA for the day and then the BP and a Statin , both 5mg and an Omeprazole around 06:15ish when I've got back from walking the bowwows. I've not noticed any strange reactions yet. Peter

[Jamie751 in reply to Bcol]

Do you sleep at night at all Peter?! I usually get to bed shortly before midnight and wake at 04.00 for a p and again at 06.30 or so and get up at 07.30. I’m late to bed so that I don’t wake up at 04.00, but I suppose I could take Pred then, as PMRPro suggests and that may make a difference in the day time.

[Bcol in reply to Jamie751]

I generally get to bed around 21:30 - 22:00 ish, and hopefully get around 3 - 4 hours but usually wake up around 02:00 ish. I then come downstairs, have a brew and laze in reclining chair until I go out with the dogs. I do have the odd doze during the day but nothing very much. I've never been for tossing and turning in bed and worrying about not sleeping, goes back to my early OA says I think. Pred at 04:00 sounds good, then back to sleep if you can for a couple of hours. Only way to see if it helps is to try it. PRO's advice is always worth giving great regard to. Peter

[Jamie751 in reply to Bcol]

‘Scuse my hignorance, but what’s “OA” please?

[Bcol in reply to Jamie751]

Sorry, Osteoarthritis.

[Jamie751 in reply to Bcol]

Many thanks Peter Do you eat something as well, when you take Pred at 04.00, other than a brew of tea? Jamie

[Bcol in reply to Jamie751]

I have a banana, then take the Pred with a small bowl of Greek yogurt. A really exciting meal!!!!!!!!

[Jamie751 in reply to Bcol]

Thanks - that’s really helpful - Rachel’s Greek yoghurt with ginger hits the spot I think

[Jamie751 in reply to Bcol]

Hi Peter - I’ve been trying taking my Pred dose at about 04.00 and I’ve noticed a marked improved difference in mood and dizziness in the following day since then. I now keep a good stock of Greek yoghurt in the fridge! It has played havoc with my blood sugar levels, as the so called fasting reading taken first thing in the morning is skewed by the 04.00 snack and Pred. Generally a better result however - I will discover what the diabetic nurse says when next I see her!

[PMRpro Ambassador in reply to Jamie751]

Are you awake enough to do a fasting BS at 4am?

[Bcol in reply to Jamie751]

Hi Jamie, glad about the improvement, but BS levels will be skewed at that time because of the Pred. When I check mine it tends to be late afternoon when everything has settled.

[Jamie751 in reply to Bcol]

Tks Peter - I’m always worried that BS late afternoon will be very high, caused by meal at lunchtime (always late it seems - still haven’t had lunch at 2.15) So the answer is a no brainer - have lunch earlier!! Jamie

[PMRpro Ambassador in reply to Jamie751]

There is always a degree of possibility that your BS will be skewed since pred causes the liver to release random spikes of glucose from body stores - if you are unlucky and take a BS reading soon after such a random spike it will be high anyway.

[Jamie751 in reply to PMRpro]

There’s no winning is there?! It’s important for me to be feeling reasonably ok and not dizzy, so that I can get around by car. I fully expect that the diabetes nurse will want me to start injecting insulin, although I can see this could be counterproductive...

[Bcol in reply to Jamie751]

My thoughts are that it is the Pred that skews the morning reading rather than the yogurt. I could be totally wrong, I'm sure someone will correct me if that is wrong. Now lunch, that is, a good idea.

[PMRpro Ambassador in reply to Bcol]

You can't predict when the pred will skew readings - that is the problem. We did have people on insulin but they have left which is a shame because their experiences are useful.

[Bcol in reply to PMRpro]

Thank you

[PMRpro Ambassador]

Are all your GCA symptoms well under control at 20mg? I have never seen a GCA taper as fast as that - 40mg is the bottom of the scale for a GCA starting dose and usually they say reduce bu 5mg every 2 weeks or 10mg monthly.

[Jamie751 in reply to PMRpro]

I’m unsure how to reply to “well under control” !

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Well if you’re not sure- they probably aren’t! 😳

[PMRpro Ambassador in reply to Jamie751]

Have you got any of the symptoms that led to a diagnosis of GCA in the first place? If they went away with the starting dose which they should have done (though 2 weeks at 40mg isn't long) and are reappearing or worsening as you reduce - then they aren't well under control.

[Jamie751 in reply to PMRpro]

The symptoms were prominent blood vessels in my temples with fatigue. The Rheumy confirmed the diagnosis with the use of a hand held scanner. Blood vessels are still prominent but I fancy less so and the fatigue is still there. I shall know more when I see the Rheumy this week. Kate’s book mentions symptomless PMR and GCA, so the fact that I don’t have headaches doesn’t mean I don’t have the illness, I suppose.

[PMRpro Ambassador in reply to Jamie751]

No, you can have GCA without headache - it occurs in about 70% either as the presenting symptom (what you go to the doctor complaining of) or at some later point. That still leaves a lot who don't get a headache. Did you have any other symptoms besides fatigue?

[Jamie751 in reply to PMRpro]

... besides those already mentioned, a bit dizzy (Pred I think) and very slow generally.

[Jamie751 in reply to PMRpro]

I’m having a blood test tomorrow - nurse always asks which ones I want. Is there anything PMR/GCA wise I should ask for, please? I have had ESR and CRP levels previously...

[PMRpro Ambassador in reply to Jamie751]

Can't think of a lot - except maybe an Hba1c to check your general blood sugar status.

[Jamie751 in reply to PMRpro]

Thanks for that PMRPRO - I had consultation with Rheumy on 3rd September and his follow up letter suggests I continue to taper, but more slowly, to be down to 10mg by mid November and I will have another consultation about then. I have found that taking Pred in the night has resulted in much better mood and less dizziness the day after. A change is as good as a rest?! Thanks for your advice. Jamie

[Jamie751]

I was advised by Rheumy (in writing) to reduce by 10 mg every 2 weeks which is what I’ve been doing - now on 20. I’m seeing him Thursday and I’ll post something after that. Thanks so much for your help.

[Jamie751]

You asked about BS levels. Since I have been taking Pred at 4 am, levels tend to be below 10, average 9.5 over the last 30 days, sometimes as low as 6.8 depending on what I have eaten/drunk the evening before.