Flare but wasn't

[suszannah]

Hello I have been on Prednisolone since 2013 for GCA/PMR I was down to 9mg and I had what I thought was a flare spoke to gp via phone and he said I could up to 15mg for 1 week then 12mg for 1 week then 10mg for 1 week then back to 9mg as my hands are now back to normal I would like to get back to 9mg as soon as I can as I have recently was diagnosed with type 2 diabetes (pred again) and 15mg is playing havoc with my sugar levels please can anyone advise? I have been taking 15mg for 3 daysMany thanks

Susz

[DorsetLady PMRGCAuk volunteer]

Usual flare protocol is contained in the link below… but as you’ve been on the increased dose for 3 days it’s not a problem just to drop back down to previous dose - so long as you are really sure it wasn’t a flare-

healthunlocked.com/pmrgcauk...

Just as an aside see you were on 7.5mg 3 years ago…having been as low as 2mg the previous year - what has been going on since then and now?

[suszannah in reply to DorsetLady]

Thank you so much I really need to get down as soon as possible ... I was thinking 3 days x12mg then 3 days x 10mg then back 9mg really needed input from here before I did anything.I got down to 2mg a long time ago and was pretty ill my have was falling out generally unwell I just get to lower levels then it all goes wrong .... over the last few months I have acquired Diverticilar disease, Macular Degenetation which I have to have eye injections for and cataract and now type 2 diabetes gp says thats from Prednisolonet too... had Osteopenia for a few year and waiting for Dexa Scan to see what other damage it may have done. Also waiting to see Endocrine but at least a year's wait for that ... no idea why I have so much trouble with Prednisolone but no way will I take methotrexate or similar my body doesn't like medication so I have to take the least possible

[DorsetLady PMRGCAuk volunteer in reply to suszannah]

Okay -so a lot of issues then, reduce the way you feel happiest with.

[suszannah in reply to DorsetLady]

Mine was only an idea in case I couldn't get hold of anyone but much prefer your version so 9mg it is and thank you so much

[PMRpro Ambassador]

You probably haven't got Type 2 diabetes but steroid induced diabetes which is a bit different in terms of cause. The effect of the raised blood sugars is the same though.

Have you already cut your dietary carbs as much as possible? Some on here have had great success - Koalajane reversed her diabetes and lost 3kg in weight.

DL has already explained the flare protocol, no need to go down slowly after so short a time if you are sure it wasn't a flare.

[suszannah in reply to PMRpro]

Thank you PMRpro for your input I have a small appetite and cut as much carbs as possible also trying to lose weight hopefully about 8/9lb or so I am finding it difficult having a sweet tooth and my diet is not the best after breakfast I don't usually eat till 5 or 6 pm just because I am not hungry but will try to include a snack or something light in the afternoon... I have to have another glucose test in about 3 weeks the last result was 50mm so not a lot over but enough to put me in the positive range ... I forgot to ask gp if I was supposed to fast before test and take my pred before or after it

[PMRpro Ambassador in reply to suszannah]

If it is the Hba1c test fasting doesn't make that much difference - it is a reflection of your blood sugar level over the past 3 months so a single day immediately before the blood sample doesn't make any difference.

Not eating through the day isn't that important - I often don't eat until mid afternoon - it is what you eat. And often you don't realise where the carbs are hiding - fruit is a false friend there, healthy possibly, low carb, often not.

[suszannah in reply to PMRpro]

Thank you after replies from yourself and Dorset Lady I am in a much better place now than I was an hour ago and taken everything on board... Will read the information pack later when I eye injection is over with, it arrived today from Diabetes UK

[Paula-kent]

I would follow the GPs advice. It’s really important to taper slowly otherwise you might have another flare. As frustrating as it is, prednisolone is the best treatment for PMR and you will get off it eventually.

[suszannah in reply to Paula-kent]

Thank you I have had it since 2013 don't think it will go anytime soon..... I had only raised to 15mg for 3 days short term so just needed to find out how to get back to 9mg safely I fully trust the 2 people who advised me

[Abbeynan82]

this should be discussed with your doctor, not with any of us.

[suszannah in reply to Abbeynan82]

I fully trust the 2 people who advised me, as I was at the hospital having my eye injection this afternoon and mentioned it to my consultant and she was fine with the advice I was given

[Koalajane]

I hardly ever eat lunch, or snacks during the day as lunchtime to 5pm is when the pred spikes my sugars. Your hba1c is not too bad so see how it is when you have your next test. I cut out pasta, rice, I eat 1 slice of wholemeal bread a day and only veg grown above ground plus for fruit I eat berries, mainly blueberries. I am lucky that I like salads so have a lot of them.

Good luck

[suszannah in reply to Koalajane]

Thank you really need to change my diet will do some investigation there must be something I like that's healthy lol

[Blacksley]

For what it is worth, not keen on your recent taper path, seems too much, too soon. Others are better informed than I but my experience has been that medics in their rush to get us off prednisolone because of the known side effects, lose sight of the major risk of flare ups. Since 2018 for most of the time I have had the unpleasant, yo yo experience of repeated flare ups caused by medics rushing far too fast to get me this medication. Almost as a last resort about a year ago I joined the forum, took heed of the advice of many contributors and am trying at reducing my dosage by only 1mg away every 4 weeks, now down to 7mg. Keeping my fingers crossed and will soon reduce more slowly an 8 week cycle in 1/2 mg steps. I now feel that for the first time I am in control. Many of us have other health issues, me included, which sometimes muddy the waters and 'doctor always know' best is not a mantra to which I subscribe.

[DorsetLady PMRGCAuk volunteer in reply to Blacksley]

It's a flare situation not a normal tapering situation.. so a quicker reduction can be appropriate.

[suszannah in reply to Blacksley]

I have had both these conditions since 2013 so I know you cant get down quickly but I was only at 15mg for 3 days and there is no problem getting back to 9mg after such a short time