Newly diagnosed with Pmr

[Kaerick]

Hello! I'm newly diagnosed and just started on 15mg of prednisone .... last Tuesday. I'm still in a lot of pain in my shoulders and arms and am wondering if this is the correct dose? Don't really want to increase to 20 / any thoughts? I thought it was suppose to work a miracle within a day or 2? I wake up every night around 3 -4 am in pain. Is it suppose to take the edge off the pain or should I have no pain while taking the meds? Going to wait a few more days till I contact my Dr. Any advice? Thank you 55 in Reno....

[PMRpro Ambassador]

15mg is the bottom of the starting dose range - and some people simply need 20 or 25mg to clear out the existing inflammation. Although some of us have the miracle at 15mg by no means all do and even when we have the quick response it is perhaps a 70% improvement that we experience so quickly. My bursitis/synovitis pain took a couple of months to go completely - but the difference in the meantime was fantastic. Some people are never totally pain-free.

It might be an idea to try 20mg for a couple of days and see if that is significantly better - before you report back to your doctor.

Tell me more about your nighttime pain - PMR pain usually starts up again about 4.30 to 5am. Nighttime pain that starts earlier is typical of another rheumatic disorder which is often confused with PMR and also responds to pred at higher doses. Does anything improve you nighttime pain? For example, does it improve when you get up and start moving about?

[Kaerick in reply to PMRpro]

Hello thank you for the great advice I'll try the 20mg for a bit to see if that helps - actually maybe I'm waking up closer to 430-5 like you stated - just not fully educated yet on this disease ... It's awful and yes getting dressed is a challenge!! Has anyone out there not put on weight from taking the meds? I worked so hard the last 4 months to lose 18 pounds by walking and running and am scared I'll gain it all back . Thanks for all of your advice I appreciate.... Have a great day! Off to work now

[PMRpro Ambassador in reply to Kaerick]

That's OK - sounds like PMR then.

Many of us have either avoided gaining weight on pred or have even lost weight while still on pred by cutting carbs drastically - pred changes the way the body processes carbs and it leads to weight gain. I lost 35lbs of pred-related excess weight by doing that and it went first from the midriff and round my face where the pred-weight tends to sit.

[Grammajoy in reply to PMRpro]

I have recently developed a very pudgy middle even though I am not over weight. Never occurred to me it could be prednisone.

[HeronNS in reply to Kaerick]

Kaerick, I lost weight before diagnosis. Haven't regained any of it, in fact weigh even less now. I'd like a bit more flesh on my bones. Heard an item on the radio about the signs of frailty and I actually meet most of them, except I continue to be very active and exercise a lot. Scary.

In your case, just be very strict with yourself about carbs, especially added sugar and refined grains. You'll be all right!

[DorsetLady PMRGCAuk volunteer]

Hi Kaerick,

Welcome,

Some people do a get a miracle reaction from Pred, others not so lucky, but the consensus of opinion is that you should get at least 70% relief.

If you aren't then you are not on enough, or your body doesn't process the Pred as efficiently as others may do. Not a definitive answer, I'm sorry, but there rarely is with PMR.

If you have uncoated 5mg tablets that can be cut, or a 2.5mg tablet then you could try that and see if it makes a difference, but really as a new patient you need to go back to doctor and get advice.

Once you've got into the rhythm of things and more knowledgeable about your illness many doctors allow you to amend your medication, but you need his/her agreement first.

[Hollyseden]

I'm new too. I also started on 15mg and sadly didn't get the 'miracle' pain relief within 48 hours. However almost 1 month later, still on 15mg although doc suggested maybe upping to 20g. I chose not to because agony had gone from my hips/legs and was easing off in my shoulders. For months I couldn't carry a bag or dress properly and showering + washing hair was a real nightmare. I'll be interested to see if I should expect to be pain free but at the moment am feeling so much less pain and even have some days when I don't take painkillers. Just fighting the fatigue. I'm sure someone more knowledgeable will be along soon to advise you. Take care.

[piglette]

Hi Kaerick, it sounds like it may be a good idea to increase to 20mg for a while to see if it helps. Ask your doctor. You should expect at least 70% improvement.

[Kaerick in reply to piglette]

Thank you that's what I was thinking

[sazzyb]

Hi Kaerick, I started my pred last Tuesday too but my starting dose was 30mg. From what I've read since and also from a comment made on here, it a fairly high starting dose. It's certainly seems to have worked its miracle on me. I'd echo what others have advised, to try 20mg. Hope you get some relief soon.

[Kaerick in reply to sazzyb]

Thanks so much!

[yogabonnie in reply to sazzyb]

what was your taper to 20 or to where you are now.? thanks.

[Kaerick in reply to yogabonnie]

Hello not sure if you were asking me a question or someone else?? I started on 15 in August bumped up to 20 a week later. Stayed on 20 for 2 weeks then Dr said to taper down to 17.5 for 2 week / then 15 for 2 weeks etc. Got to 10 mg then had to bump up to 12 due to flare & lots of stress in my life. Holding at 12 till I can get through the holidays. Challenging time right now .

Hope you are well

Cheers!

Kathryn

[yogabonnie in reply to Kaerick]

Thanks so much. I am doing well...have just begun this trip. Started at 30 went to 25 after 10 days and going to try 20 after the week is up. Then from 20 down I will taper much more slowly I think. Will stay at 20 (if it feels right) through the holidays. My daughter and her family are coming to us from Sweden for 3 weeks (Not a time to taper I understand!) Thanks again. Bonnie

[Hindags]

When I started on Pred, I too woke up in the middle of the night, in pain. The timing varied, and got a little later, more towards 5-6 after a few weeks. I started taking a 5mg tab. In the middle of the night if I got put to use the bathroom. That made a difference for me.

[navejasjoe]

Hi Kaerick,

Many people on this site felt relief right away with Pred. It took my wife about 2 weeks before she felt some relief, and then it took another month before she felt really good. Things got bad later when her rheumy had her taper down to below 10mg.

Joe

[SheffieldJane]

I guess that you are having the first lesson in patience that this disease demands from you. Not everyone is lucky enough to experience immediate or total relief with Prednisalone. I got relief in 48 hours but my starting dose was 20 mgs. 5 mgs makes a world of difference. I then stayed on that dose to make sure that the inflammation was zapped for about a month. Then comes the task of reducing in tiny amounts to find the lowest dose you are comfortable at. There is no point in under dosing, you get all the downside and not much of the real benefit, it also allows room for a flare up. If you are getting no benefit at all I would seriously question the diagnosis. Welcome to the forum Kaerick, it has been a Godsend to me these past months.🍀

[Kaerick in reply to SheffieldJane]

Thank you so much - I appreciate the information yes this forum is awesome - nice to know one doesn't walk alone ..... I'm learning a lot from all of you wonderful people Thank you

[Blanksia]

Yes, Kaerick. I was started on 25mg for 5 days, followed by 20 mg for another 5 days, then down to 15mg, diminishing 1mg a month. As I've moved, this was by a local dr. When I saw my own dr many months later, he said he would've started me on 50mg! Starting on low doses (eg 15 mg), there's the higher risk of it returning. Supposed to be self-limiting at around 2 years but not everyone is lucky. Higher doses will also keep Giant Cell Arteritis at bay (Horton's Disease...Google it). I'm approaching 2 years & have needed to creep back up from 5.5mg to 7mg as I have head tenderness. I expect my ophthalmologist will want to do a temporal biopsy & raise my Prednisone dramatically to preserve my sight. Thanks to the Pred, I have 2 loose teeth, bad heartburn & reflux (I don't want to take Nexium any more as it further affects my teeth & can cause osteoporosis). Pred is also making me vague & forgetful & gives me cramp in the feet at night. Low dose aspirin can also assist the GCA. The 25 mg I started on gave me much relief in 6 hours...I could walk almost normally. The shoulders eased over weeks but major joints are still weak....especially hips & knees. A walk along soft sand is as tiring as walking on my knees.

[PMRpro Ambassador in reply to Blanksia]

There is no point at all starting PMR patients on 50mg - it will make no difference in the long run. PMR is caused by an ongoing autoimmune disorder which causes the symptoms we call PMR - and all the pred does is MANAGE the symptoms until the underlying autoimmune disorder burns out and goes into remission. Pred has no effect at all on that.

[Blanksia in reply to PMRpro]

PMRpro - my dr was under the impression that too low a start dose would increase the likelihood of a return of PMR years later.

[PMRpro Ambassador in reply to Blanksia]

If the pred does nothing to the cause - it can't have any future effect

[Blanksia in reply to PMRpro]

Not my statement. While I am often critical of drs, our dr hasn't let us down in 36 years. I know many patients are started on a mere 15 mg. I can give you Dr Chong's details & you can debate it with him should you wish. Not my skill area. I just know my own symptoms. <3

[Judigardener]

Someone wisely said to me that there is absolutely no point in having the downsides of steroids and none of the benefits so we have to take enough to control the pain more or less.

[Blanksia in reply to Judigardener]

Sounds very reasonable