New member requiring advice

[Retallack]

I have been recently diagnosed with PMR and have been on 15mg Prednisolone for 5 weeks together with Omeprazole, Adcal and Alendronic Acid. Any advice on do's and don'ts would be really helpful, in particular about diet as I don't want to gain weight. Incidentally I find that taking the Prednisolone between 2am and 3am means that I wake up symptom free - anyone else found that ? Maybe I haven't built up enough Predisolone yet to be able to take it first thing am and not get any pain next morning ! Thanks all - this site has been great for me.

[Hidden]

Hi retallack. Welcome. It's good to hear if someone being left at 15mg for a few weeks and not just a short burst. I think you have found a system of taking pred which suits you and takes into account when the inflammation gets its fuel (cytokines) from at around 3.30 to 4.30am. So no change required there. But when you do taper we usually recommend no more than 10% drop so make sure you speak to go about that. If you have coated pred you shouldn't need a PPI (Omeprazole). Also make sure you ask for a dexa scan to measure your bone density. Many people are prescribed Alendronic acid(AA) when they don't have osteoporosis and therefore could manage bones using Adcal, diet and weight bearing activity (walking can be suuficient).

Re diet. A low carb diet is great for negating the blood sugar spikes that pred brings with it. Usually people remove white bread, rice, pasta, potatoes and other beige foods from their diet. I have provided the A link to get you started. If you can't give those things up at once cold turkey then add up your average carbs and knock off 25% of original total until you get to between 20 and 40g a day. You can revisit if that's the right amount later. Link B provides access to info if carbs.

LinkA

dietdoctor.com/low-carb

Link B

ditchthecarbs.com/guide-to-...

You don't have to join these, there is enough info on the site without paying.🌻

[Retallack in reply to Hidden]

Thank you so much, very helpful.

[PMRpro Ambassador]

Hi and welcome!

What gave you the idea to try taking the pred at that time? A study did in fact find that the best time to take pred to minimise morning stiffness was 2am and a form of pred was developed with a coating that allows you to take it at 10pm and it releases 4 hours later was developed. It is only available privately in the UK but here where I live it is on the list and I have used it for the last 5+ years - I think it is great and never get out of bed stiff! I do know others who have set an alarm to take their pred then.

Whether you can take pred once a day and be pain-free in the morning depends on how long the antiinflammatory effect pasts for YOU personally, not how long you have been taking pred or how much. It can be anything from 12 to 36 hours - only if you are at the 24+ hour end can you take the pred and be fine until the next dose is due, whatever time you take it.

Poopadoop has told you most of what I would - the best way to get info is to ask questions as they come up. Someone will have been there before! Otherwise you could get a lot of VERY long answers and get lost and confused!

[Retallack in reply to PMRpro]

Thank you. I read about the research into taking it between 2am and 3am. I tested it after a week and reverted to taking it first thing in the morning when I woke up and the next day I was back to picking things off the floor with the BBQ tongs and getting my other half to help me get dressed !! So sticking with the early morning for now.

[PMRpro Ambassador in reply to Retallack]

Excellent! I have to say, I'm very glad I live where I do - for all sorts of reaons!

[Christophene]

Welcome Retallack,

You are in the early days. Don't eat processed foods or sweets; leads to +inflammation. You may be lucky, and not gain weight, but it is still possible and not always in your control. Even if you do, you can still lose it.

Don't weigh yourself everyday b/c weight fluctuates up to 4 pounds in a day. You do need to eat though. Don't deprive yourself too much. I did, and wound up anemic and craving sweets. And I have still gained 7 pounds since diagnosis. Am only 5 foot so 7 pounds shows.

This month I was where you are 3 years ago- symptom free in 48 hours , still active and pleased. But it doesn't last in my experience. Try to stay active and keep moving. But you should rest at least once a day. Read, watch or go to the movies. In other words, keep doing what you have always done. But don't overdo; it will come back to haunt you.

Expect your doctor to try to taper your Prednisone down. After 2 weeks or more on Prednisone, your adrenal glands which secrete cortisol/adrenalin shut down and forces your body to become dependent on Prednisone for energy and a sense of well being. Read other posts and see how tapering should be done.eg. PMRpro and Dorset Lady.

Do something for your personal pleasure. For most of us, this disease is known as the "hurting disease" and stays with us for years. But do remember, you are ill and have an active disease. even if you feel well now. The Prednisone is not curing anything; only controlling your symptoms.

Take good care of your skin; Prednisone makes the skin thin and you may find bruising and small bleeds under the skin even without injury or from just brushing up against a door or s wall. Keep hair and skin well moisturized. Drink a lot of water. When you have your blood tested, don't be too concerned if your white count goes up. Almost everyone on Prednisone has a high white count.

Try to stay positive and visit this forum; you will gradually learn a lot. You will have ups and downs. Don't think your doctor is as knowledgeable as you may think. Sometimes you have to NOT listen, and do what you think is right.

Best of luck and do stay active in the forum; we are all here to help and support, and to continually learn.

[tangocharlie in reply to Christophene]

Excellent advice I'd say

[Cazdud]

Always take my predisilone at night after someone suggested it . When I started 3 years ago I used to take it in the morning and always woke up in pain.

[Retallack in reply to Cazdud]

Thanks. What time do you take it ? Mine are not coated tablets but I do take them with milk.

[Pollyanna16]

Welcome Retallack, I have a feeling you may be in Cornwall? If so you would be most welcome at our support group meetings in Truro. This site is fantastic by the way!

[Retallack in reply to Pollyanna16]

Thanks Polyanna. Yes I live near Padstow.

[Pollyanna16 in reply to Retallack]

The clue was in the name 😉 Our next meeting is 14/10 (always 2nd Monday in the month) we have a speaker who is the Specialist Rheumatology Pharmacist. 2pm upstairs at TRURO Golf Club, next door to Treliske. Normally we just get together for a chat for an hour or two.

[Retallack in reply to Pollyanna16]

Thanks very much. Unfortunately that is the same day and time as my Book Club and I have to go this month. I will try and make November as my health is more important !!!

[Pollyanna16]

That’s a shame, if you would like to be on our mailing list for future meetings please email [e-mail] & Margaret will be in touch. Best wishes.

[Retallack]

Will do that now, thanks.