Help: Hi All, Now 6 days on Pred. Dr upped dose to... - PMRGCAuk

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Fredddie profile image
21 Replies

Hi All,

Now 6 days on Pred. Dr upped dose to 15mg 6am - 10mg 10pm from 15mg daily.

I am really struggling. During the day from 1 - 7pm I function 80% the rest goes down hill and during the night and by the morning 6am I am in agony. Unable to walk properly and move my whole body without awful pain.

I read it take 6-8 hours for Pred to have effect which rings true during the day but can't work out why its not working at night on the 10mg. Can anyone help? Am I missing something?

I have arranged for another call back from Dr today as the pain is unbearable.

Should you experience pain whilst taking Pred? Reading posts some seem pain free! I know its early days but I can't work out why part of the day it works better and the rest just pain which gets progressively worse although I'm taking evening dosage 10mg.

Any Help greatly appreciated.

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Fredddie profile image
Fredddie
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21 Replies
SheffieldJane profile image
SheffieldJane

Hi Chris,

I am sorry that you are suffering so much pain. To me this does not sound typical. It makes me wonder about (a) the accuracy of your diagnosis, (b) whether you have got something else going on as well as PMR (c) whether you are particularly unfortunate with difficulty in the absorption of Prednisalone.

Are you taking enteric coated Pred. ? If not I would expect the uncoated tablets to absorb and take effect within two hours.

Do painkillers ease the pain you are in at all?

Have you been referred to a Rheumatologist? I think this would be wise.

In answer to your question about being pain-free. I think you can expect to have at least 70% relief from pain and stiffness, overall. You are right, some lucky folk do get total pain relief.

What exactly are your symptoms? Where do you experience pain?

This may improve in time. There might be a lot of built up inflammation to clear out.

Keep in touch with us. The answers to the above questions will help others like PMRPro to advise further. Best wishes, Jane x

Fredddie profile image
Fredddie in reply to SheffieldJane

Hi Sheffieldjane,

Thanks for your prompt reply.

I am taking the uncoated tablets.

I feel all my symptoms relate to PMR. Maybe I need the dosage spread out more or increased in the short term.

I am having my blood markers done again next Monday and seeing my Dr next Friday to discuss results. I will ask re Rheumatologist.

I experience the pain during night and on waking mostly. I find difficulty in walking and moving my whole body. Horrendous dull ache pain, cramps, hips, chest, arms into hands and neck area.

Dr advised only paracetamol which I think has helped but can't be sure.

My diet has been appalling with so much sugar I truly believe that has something to do with it. On a positive note its no longer available to me and I haven't missed it and don't intend too.

I had keyhole surgery in Feb on my shoulder (Arthroscopy) due to Bursitis/inflammation and what strikes me is the pain I had with that is similar to this, unable to put my arms over my head, difficulty brushing hair etc. Also I damaged my pinky finger walking Freddie and it became inflamed and painful. Only since taking Preds as the pain almost gone and swelling disappeared. So a built up amount of inflammation is also relative.

As I tap away I can start to feel the pain ease a little but still have trouble walking.

Instinctively I want to spread the tablets out to 3 times a day rather than increase dose.

I await my Dr's call.

Thanks again. x

SheffieldJane profile image
SheffieldJane in reply to Fredddie

Fingers crossed that you get some blessed relief soon.

Hi Fredddie,

You may need more time before the full relief. 6 days isn't very long at all for some. 25mg is in the top range for PMR although occasionally people need more but then it gets more difficult to say it's PMR. Really you need to have enough pred active in your system as near to 4am as possible. I think your dosage strategy is fair enough for pmr at the moment. And yes, carbs, especially sugar won't help at all. For some it takes a month or so to clear out existing inflammation but you will hopefully notice a difference soon. Let us know what the Dr says and how you get on. 🌻

P.s. Some of my neck and shoulder pain eased in the first 24hrs but my legs took a lot longer, more than 2 to 4 weeks.

Fredddie profile image
Fredddie in reply to

Thanks for advice Poopadoop :)

Will let you know.

piglette profile image
piglette

As Poopadoop says you may need 20mg rather than 15mg for starters. With pred you should not be in so much pain. Would your doctor allow you to try 20mg?

Fredddie profile image
Fredddie in reply to piglette

Hi, I’m on 15mg am and 10mg pm. Drs upped the dose to 12.5 in evening. Back at docs next week so will know more. Taking the 12.5 at 10 tonight if I can hold out that long as Pred doesn’t seem to stay effective with me for more than 7/8 hours before it starts up again.

piglette profile image
piglette in reply to Fredddie

Sorry I misunderstood you are currently on 25mg per day. It does sound as if there may be something else as well as 25mg should help more than it seems to. Hope your doctor can throw some light on the problem.

PMR_Triathlete profile image
PMR_Triathlete

Hi Freddie, I’ve been on 20mg Prednisolone for 3 weeks now, it probably took more than 6 days to really kick in for me. I would say it now manages 70% of the pain, but I am noticeably worse in the mornings and don’t really feel like I get going properly until around 4pm!

Fredddie profile image
Fredddie in reply to PMR_Triathlete

Hi,

Thanks for reply. That’s reassuring to know. I am at my best around mid afternoon. Do you manage to sleep at night and on waking can you walk ok?

PMR_Triathlete profile image
PMR_Triathlete

I am starting to sleep better now, but it did take a couple of weeks of meds. I can walk ok on waking if a little stiff, but my arms have been worst affected, so getting dressed can be a challenge!

in reply to PMR_Triathlete

When do you take your pred pmr-triathlete?

Try taking 1/3 or 5mg at night (if coated-coloured) or around 2am if you can wake and take with some yoghurt if uncoated-usually white). That way they kick in before the inflammation starts rising at 4am when little sods called cytokines arrive. That's why you ache on a morning. If you can get in front of it it helps. You can then take 2/3ish in the morning...with breakfast.

PMR_Triathlete profile image
PMR_Triathlete in reply to

Ah ok, worth a try. I'm currently taking my full dose first thing in the morning, might try taking 5mg at night then. Anything is worth a try!

Fredddie profile image
Fredddie in reply to PMR_Triathlete

I think I need to be patient but struggling so much in the morning atm. Can I ask what time you take your 20mg?

Noosat profile image
Noosat

All I can tell you is of my experience re Prednisone. My GP stated me on 3 days of 40mg to try to calm inflammation. I was in extreme pain in legs at night. Then drop to 20mg. I started to taper myself, got to 4.5 at too fast a rate. I went back up to 10mg and started taper over again at slower rate. I am now at 5 after about 8 months and staying here for a while longer, at least 2 weeks than try going down .5 mg. May not be able to do it. I have learnt patience and not to expect even minor miracles.

Fredddie profile image
Fredddie in reply to Noosat

Hi Noosat, Thanks for reply. I know that feeling re your legs every night and morning is like that for me atm. After 3 days did the drop from 40 to 20 effect you. Can I ask how long did you stay at 20 mg and what time of day did you take it? Did the level of pain drop after 40mg? Thanks.

Noosat profile image
Noosat

We all are different, and this applies o how we perceive "pain." When I was a competitive runner in my earlier years I learnt the difference between pain and discomfit. This is not meant to belittle anyone else's feelings, but it is difficult to go into another's body. I know I can put up with a lot of "discomfit" and sometimes wonder if I may let pain/illness continue too long. This site has been a great resource as well as comfort for me, but when it comes to the bottom line, I must make my own assessment and decisions.

Fredddie profile image
Fredddie

Absolutely

cranberryt profile image
cranberryt

I am 80-90% better on 20mg but I think 30mg works even better for me. Maybe they can do a higher dose for a few days to see if that helps. If it doesn’t, I also would question the dx. Although I am new to PMR it is my understanding that radically improving on prednisone is a sign that the dx was correct. And if you are not improving, maybe it is something else. Or something in addition?

Fredddie profile image
Fredddie in reply to cranberryt

Hi Thanks for post. I do have improvement but it’s not consistent days are better than nights. I was told it’s still early days - a week today. So sorting that hopefully. At the moment feel 70% normal. It’s got me thinking from the responses that we are all so very different and some may have more inflammation than others so it makes sense we can’t all use the same dosage and tweaks are necessary. I’m beginning to think I should have started higher but 15mg is the guide. To be fair my Drs have agreed to increase now on 27.5. I also understand it has a lot to do with when you take it as well as the dosage. So fingers crossed I’ll get there but it’s a mine field. Without the forum I’d be lost. My Dr would never have had the time or info that I’ve gleaned from here.

cranberryt profile image
cranberryt in reply to Fredddie

I hope things improve for you!

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