I never heard of this disease until I was diagnosed with it January 2019

[cmybabyblues]

Hi! Just found this site and was interesting in learning as much as I can. Not too happy going to sleep and waking up with such pain on 9 prednisone. Having the pain until the afternoon and limping to go away and come back night time. None of friends or family have heard about PMR.

[mad-country-lover]

Welcome cmybabyblues

I was diagnosed in December and had also never heard of PMR before, finding this site has been a blessing, there is so much information that is either not available or understandable plus the support and advice from people that understand what it is like. the understanding goes a long way, I am early days but I was put on 15mg to begin with. that was then increased to 20 mg my main relief came from increasing again to 25mg .

Take care

x

[cmybabyblues in reply to mad-country-lover]

thank you for replying.

[cmybabyblues in reply to mad-country-lover]

I was original on 20 mg and was going 10 and banged my head into glass sliding doors. Out of precaution reasons, was put on 60.

After seeing doctor for two month now on 9 and feeling a bit of pain in the morning. I gained 10 lbs and miserable about that and pain. Keep saying, it could be worse.

[Soraya_PMR in reply to cmybabyblues]

Up to 60mg because you banged your head? Sounds a bit extreme to me! How long did they leave you at 60mg?

So apart from the crazy 60’s, basically you started at 20mg, and 2 months later you’re down to 9mg? Have I got that right? If so, slow down with your reductions!

[JulianJ]

I was diagnosed a little over 2 years ago, like you I had never heard of PMR.

I started on 15mg and at that time was told to reduce to 10 after 4 weeks and then by 1mg every 4 weeks. I had a flare at 5mg and bounced up to 9mg to clear it.I then got my doctor to accept that I decided when and how to reduce. SInce then I've had a much better ride, a small flare at 5, back to 7 reducing to 6.5. Now I'm reducing to 4.5.

Use the information here, look up available tapers and give them a try.

I'm also on gastro resistand pred, I take it at 10pm and don't start to suffer until after 8pm and sleep through most of the bad bits

If I sit for too long, which I do, then walking is funny to start with, I have to stand for a few seconds before walking, what a fun life we have!

[Liskeard]

Hi, welcome

I was diagnosed in December 2018, I started on 20mg prednisolone, with drastically improved results.

Starting dose is usually 15-25mg. Did you start on 9mg? If so, it doesn’t sound like enough.

Stick around here this site is a godsend - there will be wise advice freely available.

[Constance13]

Hello there! I have never heard of anyone starting their PMR journey on 9 mg. I started on 30 (which most doctors/rheumies think too high. However, I ‘needed’ it to cope with the pain. Listen to your body, YOU know how you feel.

[Dovelady]

Welcome to this fantastic group. Six years ago I was diagnosed with PMR/ GCA , I walked out of the doctors surgery with a prescription for 60 mg prednisolone, a handful of leaflets and the website address for this group. I was totally bewildered, I’d never heard of this, I’d never known anyone that had it. I was walking like an old woman and I felt awful. I don’t do online groups but coming here was the best decision I ever made. This group was able to answer all my questions , I didn’t feel quite so alone and the ongoing support has been amazing. I’ve made some great friends I’ve never even met. Ask any questions, use the search button, nearly everything has been asked before. My journey has been a long one, especially as my GP suggested after two years I would be as fit as a fiddle, but, one size does not fit all in this place. What works for one does not work for everyone . As Constance13 said very wisely, Listen to your body, only you know how you feel.

[Soraya_PMR]

Welcome to the forum. There is much to learn!

What was your start dose of pred?

Is your pred plain or coated?

What time do you take your pred?

Its possible that you have reduced to 9mg too quickly and simply need more. Think back to your first dose of pred, how did you feel, and how long did it take to get relief?

If I take my pred in the morning I will be stiff until midday, and never really feel quite right. Therefore I take it at about 10pm, takes 4 hours to absorb (coated), and is in my system by 2amish ready to do its thing so that the inflammation is zapped before it gets hold. A recent trial of taking it in the morning didn’t work for me, I think I’d have needed a higher dose to cope, so I moved it back to bedtime and I’m back on an even keel without raising my dose.

[cmybabyblues in reply to Soraya_PMR]

What are coated pills and do the work better. Started with 20 an now 9. Where do you go on this site to look up information. Thank you

[Soraya_PMR in reply to cmybabyblues]

The coated pills are gastro resistant. (I had dreadful stomach pains/indigestion with plain pred, and was unable to take PPI or Ranitidine, so GRpred for me 😁) They pass through my stomach and are absorbed lower in my gastrointestinal tract.

IMO they are no better or worse than plain white pred as regards dose for PMR. It’s exactly the same drug, just delivered slightly differently. But plain pred will be in your system quicker, maybe an hour after swallowing. GRpred takes longer, around 4 hours, so it works to my advantage when I take it at 10pm. 4 hours later at 2am it’s doing it’s thing.

(I have also tried taking plain pred at 10pm, and that was useless, missed the boat entirely).

At the top of the page you should see the ‘spyglass’ symbol. Click on that for the forum search engine.

[Mary63]

If you started on 9mg, no wonder you are in pain still. If 9mg was your start dose, can you go to your GP and ask for a higher dose? Most people need between 15mg and 25 mg to really get hold of the inflammation. Some as you have heard above need 30mf to sort it out.

Dorset Lady will be along later with a fantastic overview of how to cope with PMR...loads of info. And I expect PMRpro will send a link of guidelines for doctors, which you could show to your doctor. And then he/she might be happy to try a higher dose.

I wish you the best of luck that you feel much better soon.

Mary

[Choco-Holic]

Welcome to a fabulous support page. I too was totally bewildered as never heard of the disease, and felt totally isolated. I was started on 20mg prednisolone which took away the pain, I believe this is the starting dose for most with PMR. It may be that you should revisit your doctor to see about increasing ..... good luck and keep in touch

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

As others have said, many of us had never heard of GCA nor PMR before we started, so you are not alone.

If 9mg was your starting dose, no wonder you are still suffering, initial dose needs to be higher than that, so you really need to be going back to doctor and telling him it’s not working. Is there a reason you were started so low, do you have other medical issues?

Have a look at this, then come back with any more questions you may have. healthunlocked.com/pmrgcauk...

Take care.

[PMRpro Ambassador]

Please tell us more details such as how long, starting dose, how you have reduced, what time you take pred.

Sorry - so rotten to bombard you with questions but without that knowledge we can't make relevant suggestions.

[Soraya_PMR in reply to PMRpro]

Or complete your profile information cmybabyblues

[SheffieldJane]

Hello and welcome to this amazingly informative and supportive site. What was your start dose and how did you get to 9 mgs?

[cmybabyblues in reply to SheffieldJane]

I started with 20 mgs. And after weeks went 12.5 then 10 and now9. Doctor said I should exercise dice I gained 9 lbs. took my bicycle out for a ride and, I had the worst night of pain shooting down my arms, limping, thigh killing me. When pain disappears in the pm,I still have a minor limp. Thank you for your help.

Karen

[SheffieldJane in reply to cmybabyblues]

I think you have reduced too fast for your body’s liking. The art of good tapering is what gets us through this disease. A drop from 20 mgs to 12.5 is far too steep. There are examples of good tapering regimes that you can do a search for on here, like the dead slow nearly stop one. You shouldn’t ever reduce by more than 10% of your dose. I always reduced one day a week, then 2 days then 3 days etc. So my body didn’t notice too much. A low carb, low sugar diet really helps with the voracious appetite and subsequent weight gain. Exercise should be gentle, like walking on the flat, Aqua-aerobics and Pilates. Activities need to be paced and well punctuated with rest. I might even consider going up to 15 mgs and starting a gentle taper from there.

Good luck! Keep in touch.

[PMRpro Ambassador in reply to cmybabyblues]

"Doctor said I should exercise" - he did did he? I wonder if he has the slightest idea how PMR affects the patient? Obviously also doesn't know that exercise is the least likely way to lose weight either.

Taper more slowly as Jane has suggested:

healthunlocked.com/pmrgcauk...

And cut carbs, expecially processed and white carbs (e.g. rice, flour, potatoes and other root veg) and sugar, including too much fruit.

[Carrollee]

Hi. Sorry your struggling with it all. Like some of the others have said taking it at 2am can help with morning stiffness, pain etc. When I got to 10mg it wasn’t enough so I tried taking it (uncoated white tabs) at 2am instead of when I woke up and it worked a treat. Mornings are so much better. All the best cc 🤗