I am new to PMR, only three months. I saw my rheumy two weeks ago. She started me on 20 mg and said to go up 5 mg until all the pain is gone. I am at 30 mg and still have some pain. I hate the idea of going up higher. I fear I have to and am putting it off. She said I might be one of the rare cases of needing a high start dose. I am only diagnosed with PMR. Did anyone else start at a high dose like this? Will I ever get to a small dose? I also have DM and now I am taking short and long acting insulin. Can I get some insight on this please.
Hi jill58546
15mg is normally the starting dose for PMR only, and usually 30mg sometimes higher dose for PMR and GCA together. How long were you to take 20mg before going up 5mg? What was the time period before getting to 30mg. I was prescribed 15mg initially and it took approx 7-10 days before the pain abated....
I started at 20 then had to go to 30 for 3 weeks then back to 20. I am at 15 now.
I take it you have only been on pred for 2 weeks? You are already at a high starting dose and if it is "just" PMR it would be better not to keep creeping up unless you have any signs or symptoms of GCA and then you could well need more.
Did you get a fairly quick 70% improvement in symptoms over all? There may be some pain left at first, especially if you have bursitis (hips and shoulders) or tenosynovitis (usually hands and feet) as those areas don't have good blood supply so take much longer to resolve, for me it was heading for 6 months. Many people are never totally free from pain - some of the pain we have is not directly PMR and it isn't always magicked away with pred. One cause of pain along with PMR is something called myofascial pain syndrome - caused by the same inflammatory substances as PMR but they are localised in trigger points in shoulders, about waist level and in the low back and take longer to respond and probably need higher doses of oral pred to do so. There are other ways of improving it.
And I have to ask - did she mean KEEP increasing 5mg at a time or did she mean try 25mg as that is the top of the range of recommended starting doses. for years they have used 15mg and fought tooth and nail when it was suggested they use more! If it isn't managed pretty well by 30mg then she needs to put her thinking hat on - it may not be PMR as we discuss it here. When higher doses are needed than that, it often means something else is going on, including large vessel vasculitis or GCA.
Yes you WILL get to a lower dose but it will take patience and probably some lifestyle adaptations. If you have taken your pred and then tried to carry on as normal you will almost certainly have problems. Your muscles remain intolerant of acute exercise because the actual disorder is unaffected by the pred, it just manages the symptoms to allow a decent quality of life. The real underlying illness is still going on, attacking body tissues and causing symptoms rather like flu. You have to adapt to a new normal - and it is worth it as PMR lasts for years - anything from 2 years up, a median of 5.9 years.
Hi, my story is that I started about one and a half years ago on 15mg and within a day or so the aches and pains reduced by say 80%.I then reduced as fast as possible and in say 6 months was down to about 5mg. Then in the next 6 months was down to 1mg or so.I then kept trying to do without but after a day or three had to take one. However I have now not needed any for a few weeks. I still have some aches but hopefully can continue to do without - I am say 95 to 98 per cent better than when I started the steroids.
How are you taking the medication? Recommended is to take it in a single dose early in the morning, always with food. Don't take any calcium supplements at the same time as they interfere with each other. Calcium supplements can be taken at other mealtimes. Heed Eileen's suggestion to rest. You have a serious systemic illness and need to treat yourself gently. Get some outdoor exercise every day if you can, even a walk will do, but go easy otherwise to begin with.
Diabetes does require careful monitoring, and a very strict very low carb diet will help keep sugar spikes to a minimum. Others on here have dealt with pre-existing diabetes + pred and hopefully they will be along soon to describe how they've coped.
Hi Jill I am so sorry you have been diagnosed with PMR. 25mg is really the top starting dose although some may need to go to 30mg. The trouble is larger doses can cover up other things that are helped by pred. If you take pain killers does it help the pain? If so it might mean you have something else too as PMR is really only helped by pred and nothing else.
For anyone looking in - while this is a very happy tale it is unusual to be able to reduce as fast so if YOU can't, it isn't your fault! Men often have a very different experience of both PMR and pred - no-one knows why but it is the case for many autoimmune disorders.
Hi brian75018
That was the scenario for me brian. It took me approx 10-12 months to taper off pred. Had some pain at first for a while plus withdrawals, but heaps better now 18 months on....hope things continue to go well for you...
She just said to increase 5mg until pain is gone. I was so bad at the beginning that I went to 25 right away for a week then 30 for a week. I am also on methotrexate ( I forgot to add that). I do have a few days that it seems like I have the beginning of GCA but the symptoms don’t last more than that day but symptoms come every two or three days. Thanks for your input
I do get a lot of walking at work and exercise at home. I have found a couple of things so far that makes my pain increase. I have stairs at my home. That gets my hips so now I only go up and down once if I can. My purse seemed to make my shoulders hurt so I cut down on the weight. No more carrying bags of groceries or anything. Hard to do without doing certain activities but am trying
No pain medications. I did try ibuprofen but that did not help so I did not go any further with that.
I did have symptoms for 3 months before seeking medical advice.
Hi Jill, you lucky to have found the forum so quickly, I am tapering off 30 mg, currently on 6 tapering to 5.5, I am also a diabetic on oral meds. About 2 1/2 years on my PMR journey. After bad flare needed about 6 weeks on 30 mg to be PMR pain free. The wisdom, knowledge and encouragement I received on the forum has made my journey much easier. There is a lot to learn about the PMR journey and here is the best place to start, I was a year into my journey before I found the forum. Taper slowly, try not to taper off you are having PMR pain. Think positive, stay active, don't over do it and smile, it helps. 🙂
yes, PMR can weaken our muscles and unfortunately pred doesn't help strength either. However as your pain is controlled you can gradually start to do things again, always being careful to avoid injury.
Thanks Mary - good to hear that someone has managed to come off steroids so quickly! Also that it seems to have worked for you. I resisted going on steroids for months and tried every alternative but nothing really worked for more than a day so I succumbed but got off as quickly as I could manage while acknowledging the amazing benefits and not wanting to risk undoing any 'progress'.
That does seem to point to the pain being caused by the PMR. I was at least 3 months before diagnosis, the GP kept saying it was a virus. In the end I went to a rheumie privately who diagnosed PMR in about five seconds.
I started on 50mg and now on 10mg, I had flare ups every time I decreased the prednisone but I continued because I just could not tolerate all the side effects.
My rheumatologist has now diagnosed me with rheumatoid arthritis, the PMR was just an introduction to the RA.....
Thank you. I do like this site. It eases my mind sometimes. After reading some stories I’m not as worried about this is that I was
Glad to hear that others started on high dose. I have been told and believe that I have a very high pain tolerance but this is making me think we were all wrong. The rheumy said she is hoping that the methotrexate will help me decrease faster than normal. Hope she is right.
Hopefully. I like to play with my grandkids and this has me sitting on the sidelines