Two years ago I was diagnosed with PMR. Went down usual route of tapering . Managed eventually to get from 20 mg to 5 mg . Went very slowly but have now hit the buffers at 5 mg ...did get to 4 mg but went up again due to increased pain.
I recently had a dreadful cough / virus which put me in bed for nearly a week. I am also trying out a new blood pressure pill as previous two did not suit me.
Rheumatologist insisted that I did not need alendronic acid or any kind of tests , however I requested a Dexa scan from my GP and am now told I have Osteoporosis .
I feel really depressed as I am now far worse than at the beginning , with pain everywhere and exceptional tiredness and lack of energy . Tried a walk this morning in lovely Spring sunshine, but had to give up. Now back on sofa with hot water bottle.
Help please ..will I ever feel well again ?
Tiny_Tim
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Tiny_Tim
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I am just beginning my treatment but I know this kind of pain and the depression that comes in wondering if it will ever get better. All I can say is I hear you and I am sorry for your pain. I hope you get some relief soon. As I have said before all of you kept me from crumbling so many times.
First of all, try upping your pred dose for a few days - 10mg for 3 or 4 days may be fine. Then drop back to 5mg and see if it is still enough.
But really - these doctors who think they can see through skin to the bones - there is a good reason they have tests. Do you know what your t-scores are?
And you will feel better - tell us some more and we'll try to provide a helping hand. But for the moment - small steps!
Thank you ..like so many others I am trying to avoid upping Pred , having worked hard to reduce to 4mg . I have gone back up to 5 but probably need to go higher for a short period . Of course lowering the dose may make the PMR better, but my hands are now really painful which is probably arthritis which has been masked by the steroids ..heigh ho !
Sorry, really don't get what you mean - lowering the dose won't make the PMR better. If the PMR is still active you need MORE for the PMR symptoms. And hand pain can be part of PMR. Don't assume it is OA and remember you have had a viral infection that is probably making the PMR flare. Be patient. Wait until you have recovered before continuing your taper - as the others have said, 2 years is really early days.
Have looked back through your previous posts - and although you say you have reduced very slowly - I would say not slowly enough.
Two years into PMR is not long, I know some doctors still believe that is the timescale, but a study done last year put the median figure at 5.9 years - quite a difference!
Your recent virus will not have helped obviously - and maybe in hindsight it would have been sensible to up your dose to get you through that. New blood pressure tablets may or may not have exacerbated the situation. But I think it’s probably a combination of too low a dose of Pred and your Adrenal glands taking time to start working again.
The answer - maybe increase back up to 7.5mg for a few days, maybe a week or two and see if that helps. If it doesn’t you can drop back down to 5mg with no additional damage done. If it does help then stay there for 3-4 weeks until yiu really feel better - and then try reducing again - this time 0.5mg a time and using a slow taper - like the one detailed here
You will get there, but at the moment you are trying too hard. The adrenals need gentle nurturing to get working again - and that takes time - and tiny steps.
Oh Tiny_Tim, I really feel for you in this horrible place that we all visit from time to time. The virus will have knocked you for six, as well as changes in your medication. When you are up to it, you need to sit down with an experienced doctor to discuss the implications of your Dexa Scan results and the steps you can take to improve your bone density. There are degrees of osteoporosis, do you know your numbers?
In the meantime, take more little walks. You’ll get through this.
Depression intermittently comes with these diseases, and steroids are notorious for playing with one's mood. In the end, you are your own best doctor.
Osteoporosis is not the end of the world. Just lifting light weights can help and there are medications to treat it. ( but do be careful b/c these drugs are causing problems for some people) .Make sure your blood calcium levels are monitored. This is not the place for an endocrine gland dissertation, but if you are curious, visit the Norman Parathyroid Center's website and you will learn all.
I know when medical problems start piling up, we are subject to depression; and aging doesn't help.
Any type of situational problem or stressors make things worse.
Your adrenal glands are not working yet from the steroids. I am at 4 mg.; after holding at 4 mg. for months, I started to feel much better and my motivation and energy came back.
Then I had a terrible fall down stairs (still very lucky); no broken bones, no head injury, but a lot of bruising , knee and hip pain returned. But I think it is from the traumatic injury , causing a set back to PMR recovery. But I refuse to increase my steroid dose after I worked hard to get from 16 to 4mg.
If it makes you feel any better, I am writing this from bed under an electric blanket. You are not alone.
Diagnosed Aug 2017. Started on 15 and down to 10 at 1mg a month no problem. Much slower after that and then I was stuck on 6 for six months. Upped my dose to 7 for four days leading up to Christmas then 61/2 till January and back to 6. The rheumy started me on methotextrate as well in January. No side effects and I'm feeling good. Even started swimming as well as regular dancing. Have slowly tapered to 51/2 and starting the slow taper to 5. Fingers crossed it continues. Even telling myself the PMR may have burned itself out and I just need to reduce the pred but we'll see how that goes. I have some oesteo as well but Panadol deals with that. My hands swelled up in April before I was diagnosed and again in Nov 2018. I think it is part of the condition. I hope that as time passes the condition is weakening or burning its self out. You will get better.
Hi there from the queen of flares from doing to much without learning management skills 👑 For me there is a very strong link between pain and depression, every time I go backwards I feel it's the end of the world so my alter ego 'Ms Told-you-so' pipes up and tells I'm useless and nothing is going to get better. I'm learning ways of silencing her by taking pain medication when I need it and not trying to be a heroine. I have a few other medical issues but the link between pain and depression fires up every time regardless of the cause. Be tender to yourself, get the pain under control and look forward to tomorrow. You might manage a walk tomorrow and if not, sit in the sun and feel it's smile. Sending understanding and virtual hugs xxx
It was like reading about myself when I read your post... much the same time, depression and told last year I have osteoporosis... now on alendronic acid tablets... trying to come down on the steroids much the same as you...now stuck on 8mg with some pain all over but new problems with my hands...not had that before! It seems two years isn't that long with PMR...keep looking forward and look for better days...I know they will come
If you have PMR-type pain all over you have gone to too low a dose. The inflammation will build up again until eventually you will be as bad as at the start.
Wow... how do you know when to reduce and by how much then? It's definitely making me in pain and miserable every time I try to come down on the steroids but desperate to get off them as I have put on weight and as I mentioned getting quite depressed over it all...
You reduce SLOWLY in SMALL steps until the dose at which you notice symptoms beginning to return. Then you return to the previous dose. That is the lowest dose that manages the inflammation. On the way down you need at least 3 to 4 weeks at each dose to be sure it is still enough and each step down should be as small as possible.
You may be desperate to get off the pred - but if you do, all you will have is a return of the state you were in at the start. PMR is a chronic disorder, it requires a median duration of management with pred of just under 6 years. It may not last that long but it is unlikely to be less than 2 years. As long as the underlying autoimmune disorder that is the cause of the symptoms we call PMR is active, you will need pred. If you decide not to take pred, there is a much higher risk that it will progress to become GCA.
There are ways to manage the less pleasant effects of pred - ask and people will make their suggestions of what has helped them. The weight gain can be remedied with some discipline and reducing carbs drastically, especially white and processed ones but also root veg and fruit must be restricted. I lost 35 lbs of PMR and pred-associated weight gain by doing so and have kept my weight reasonably stable for over 4 years. The cutting of simple carbs and sugar also helps the inflammation, sugar is very pro-inflammatory. Loads of people on the forum will tell you their stories.
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much the same time, depression and told last year I have osteoporosis...
What's going on?
What is going on with the Doctors 
What is going on with my legs?
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