Advice Please: Hi all, still up and down on... - PMRGCAuk

PMRGCAuk

20,119 members37,703 posts

Advice Please

jules1955 profile image
26 Replies

Hi all, still up and down on Prednisolone and now still on 7mg again but I have lots of hip and back pain and down the backs of my legs. I have usually taken my Pred after/with lunch, but reading some posts today I see lots take their Pred early morning. I am wondering if It would help if I took it earlier. I also take Thyroxine and Lisinopril tabs. Does anyone else take other tabs ? and do you take them all together ?

Thank you

Jules x

Written by
jules1955 profile image
jules1955
To view profiles and participate in discussions please or .
Read more about...
26 Replies
SnazzyD profile image
SnazzyD

Hello, there are two sorts of early that people use. First is early early like 2-3am in order for peak blood concentration to coincide with the 4am peak rise in inflammatory substances called cytokines which cause the trouble. Then there’s merely early where it is an hour or two before rising to coincide with when mobility is needed. Then there are all sorts of other times in between that people choose for their own reasons. When you get towards 5mg the endocrinologists like a morning dose because they think it is more conducive to adrenal axis awakening. If you take enteric coated you need to add about another 3 hours or so to the delay.

Aside from all that, the question is, do you get any relief at any point from the pain?

Others will reply about the pill juggling.

SheffieldJane profile image
SheffieldJane

I was advised to take Thyroxine on an empty stomach, hours away from anything else. I must say this threw me after taking it any old time for the last 30 + years. Attempting to achieve this is hard and leads me to forget. This is because I take Prednisalone first thing, with plain organic yoghurt and a little local honey. I think of it as my “ waking up” pill. Literally it loosens my body and stops the PMR pain before it starts. I then take Thyroxine before any light lunch.

7 mgs is a tricky dose to get down from. I am tentatively on 5.5 mgs and have some break through pain and lots of fatigue. You will know I guess, that your own Adrenal glands have to start waking up, at these sort of doses. That alone can make you feel tired and low.

I have also noticed an increase in arthritic pain, particularly due to the newly diagnosed Osteoarthritis in both knees. I currently have lower back pain on my left side. I am regarding this as age related and a result of being more sedentary during the last 12 months, not as an indication that I need more Pred. Perhaps you should have some X Rays or an MRI scan and a Dexa scan ( bone density). Then you will know what you are up against and how best to deal with it. Unfortunately other things have been merrily developing away whilst PMR and Pred have been in charge.

Clearly, if you are beginning to feel as you did upon diagnosis, then the only remedy is an increase in Pred. It’s all very unfair! Good luck.

jinasc profile image
jinasc in reply to SheffieldJane

"Osteoarthritis in both knees"

Try Flexiseq. I have osteo in both knees - ARC developed with a German Company, this Bio Mechanical Gel - all I can tell you is it works like WD40.

SheffieldJane profile image
SheffieldJane in reply to jinasc

I have sent for some ( not cheap is it?) Thanks for the tip, the pain is relentless.

peace_lover profile image
peace_lover in reply to SheffieldJane

I find Flexiseq has considerably reduced swelling in my OA knees. Try EBay, I have purchased it for £11 but usually it’s around £14 - but still cheaper than a Pharmacy.

jinasc profile image
jinasc in reply to SheffieldJane

I have found that a pack of 4 from Amazon maximum strength has worked out cheaper the last two times. Except when Boots had a sale for £9.50 and I bought the whole lot. Lasted me six months.

I always check the web before I buy, as the price seems to vary. When it first came out it was £32 for 2 tubes from the ARC shop, but £6 of that went direct to ARC research. At that time only Lloyds sold it at around £18 but of that £3 went to ARC.

Hi Jules

The Medics recommend you take it before 9am to mimic your body’s production, l always take mine by 8am. Some people like to wake early to take it, to prevent morning stiffness.

I take quite a few other Meds & a chat with your local Pharmacist is always helpful as they can guide you re interactions. Our Calcium Tablets prevent the absorption of Prednisolone.

Remember

Pred for Breakfast, Calcium/VitD for Lunch & Dinner. @PMRPro

Good Luck 🍀

MrsN

EdithWales profile image
EdithWales in reply to

Good Morning

I know nothing about this. Having staggered out of bed to make tea so stiff I could 😢I wonder if I am missing out on something. Stuffing fat self with Turmeric and tried the CBD both useless, I will try anything.

Off to see the Physio this afternoon, pure agony but at least my balance is improving Rx🥂🥂

in reply to EdithWales

Ah Bless You R 💕

Happy Valentines Day ♥️

Speak to you later

Angela xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

PMRpro’s wise words- not mine!

in reply to DorsetLady

Does sound like you though! 😘

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

I think we’re on the same wavelength- whether that’s good or bad I’m not sure 😳😂🤣😂

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I'd say it was pretty good...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Me Too!

jinasc profile image
jinasc

Jules

Go talk to your pharmacist and discuss when you should take your myriad of tablets.

They are the only people who know more about meds than anyone else. They can tell you about contra-indicators etc.

My Pharmacist has even rung the GP on occasions and said, sorry not this drug, we need another as the new was not compatible with the old.

Once on meds, your pharmacist becomes your best friend.

Telian profile image
Telian

At around the 7mg dose your adrenals will be trying to awaken and can cause fatigue that you thought had gone. This is when you might need to really slow your reductions. I've always taken my pred early and is the best for me. See Snazzy's explanation of when to take. I take other meds, including cancer but not Thyroxine, the only one not to take with pred is calcium - leave at least 2 hours apart.

jules1955 profile image
jules1955

Hi and thank you so much for all replies. I have just spoken to my Pharmacist and she has said take Thyroxine first thing ( you don’t need food with this ) and then half hour later take the others ( with food ) I can also take any vit tabs at the same time. I will try this and hope it makes a difference. I got down to 5mg Pred just before Christmas, but early January was not so good so went up again and back to 7mg don’t feel so tired now, and maybe as someone mentioned the pain is not all PMR ! Happy Days !

in reply to jules1955

Great, but not Calcium that needs to be at least two hours after Pred x

jules1955 profile image
jules1955 in reply to

Hi Mrs Nails, thanks for your replies, I stopped taking the Calcium as it gave me terrible pain / wind and when I had a Dexa scan I was ok. Jx

in reply to jules1955

That’s fine x Glad you got all your Meds sorted & always check in with the Pharmacist if you are ever prescribed anything else x

PMRpro profile image
PMRproAmbassador in reply to jules1955

But really you need the calcium and vit D to remain OK! Pred makes you lose more calcium through the kidneys, you need more somehow to givee the body the best chance to stay OK. Try to make sure you get plenty of calcium rich foods, get your vit D checked to be sure that is also OK (that is important) and maybe try other brands of calcium. Also always take it with a meal as that does make a difference.

jules1955 profile image
jules1955 in reply to PMRpro

Maybe I will try Calcium again, I hated that alandronic acid

PMRpro profile image
PMRproAmbassador in reply to jules1955

I took 4 AA tablets and hated it! A different GP agreed I should see if I needed it first (I didn't) but I have taken the vit D and calcium the entire time and my bone density had barely budged in 7 years.

PMRpro profile image
PMRproAmbassador

The inflammation starts in the very early morning - the sooner after about 4.30am you take the pred, the less inflammation has been created and the less your pred must do. Thyroxine can be taken at night and that is found my many to work better and it is well away from the pred for PMR.

jules1955 profile image
jules1955

Thank you PMRPro x

Patience47 profile image
Patience47

I take Lisinopril and Plavix with my prednisone around 7am.

You may also like...

New to pmr, advice please

on 15mg pred, I felt better so I tried to taper down to 10mg ….big mistake! The pmr came back with...

New to pmr advice please

year and was put on 15mg pred which helped enormously, but then I was putting a lot of weight on...

Reducing Pred Advice please

4mg for 3 weeks). I still have PMR symptoms around 6am every day. I take my Pred around 8am and...

Splitting dosage advice~~please~!

and 4mg tabs to work with, the pharmacy said they don't have any 1mg. Thanks you all...hope all is...

Advice please (stage 2)

thorough check up and bloods were takes for an ESR test? These all came back normal. I was given...