I am 67, was diagnosed with PMR 2 weeks ago after 4 weeks of symptoms (stiffness and pain in neck, arms, shoulders, couldn't raise arms above shoulders, immense tiredness etc). Initial GP contact was excellent - he identified the problem, blood tests same day, consult 2 days later to confirm diagnosis and I started 15 mg Prednisolone the day after. I feel much better 2 weeks later, less pain and stiffness and less tired. But I had a further consult with a different GP today and his plan is for further blood tests in 10 days to see what inflammatory markers are doing and if they are going down, to decrease Prednisolone to 10mg daily and thereafter decrease 1mg every few weeks but also to start calcium (I think he said Vit D as well) and Alendronic acid. This all seems a bit fast to me, from what I have read here. Also, my dentist says I have some bone loss in my jaw (3mm last X ray). I'd really appreciate any comments so I can be reassured this is all OK (or not!) I do find it difficult to be assertive with my GP and if I could refer to this Forum it might be easier....possibly....
Advice about plan of treatment: I am 67, was... - PMRGCAuk
Advice about plan of treatment
Hi MarionA and welcome 😊
First of all I’m glad the original GP was on the ball and all went well there….
As to the second one…..well, I agree with you, it sounds as though he’s trying to move too fast. I’d say never reduce dose while you still have symptoms. The blood tests aren’t the be all and end all and symptoms are just as indicative of where you are. So, don’t reduce at all if you still have pain and stiffness. Also, while some people are able to go directly to 10mg from 15mg, many aren’t (it took me months). I’d suggest a drop to 12.5mg when you are feeling good, and stay there for about a month before dropping to 10mg (again, I had to go 15-14–13-12-11-10 but that’s just me, we’re all different).
Below 10mg, it’s often best to taper down by no more than 10% of the previous dose. So, below 9mg, many of us taper by 0.5mg a month or so. There are lots of tapering plans in the FAQs to the right of this page to get you started.
healthunlocked.com/pmrgcauk...
I can’t answer your question about your jaw I’m afraid - I’m sure someone will be along soon who can 😊
Above all, take it easy, listen to your body….and if possible see the first GP!
All the best xx
PS Definitely take Vit D, maybe calcium (but may not be necessary if you get enough from diet) and Alendronic Acid only if the need is proven in some way, usually by a DEXA scan. Lots of us on here do take it, to protect bones, but if your bones are fine you may choose not to.
Hi and welconme.
Maybe have a look through this link to give you more idea of what to expect - but would say your 2nd GP obviously has little experience of PMR - and is probably more used to prescribing Pred for other acute illnesses where a fast taper can be achieved, but cannot in PM [as link explains].
healthunlocked.com/pmrgcauk...
and maybe direct him to the PMR guidelines - these are from NICE - but reflect others.
cks.nice.org.uk/topics/poly...
However, although the tapering from 15mg to 12.5mg to 10mg may be achievable for some, it is sometimes too fast - and a 1mg taper is much better… but you may have difficulty in persuading him of that…but worth a try.
And he needs to be aware of how YOU feel, not just rely on the blood results when the next taper is activated.
As for AA - stall on that until you are sure it’s required- request DEXA scan…VitD/Calcium supplement is usually enough to protect bones.
Good luck, and any issues/questions there’s always someone around to help.
Hi and welcome.
I would do my best to avoid the second GP - he's being far too gung-ho about reducing the dose although I do approve of the blood tests. 15 to 10mg at this stage is far too much, you need at most to go via 12.5mg on the way.
VIt D and calcium is correct - but given what you say your dentist said, I wouldn't agree to AA without a dexascan and a detailed discussion with your dentist. Before starting AA you need to get a full dental check up and have any invasive dental work that may be required done in advance. That should delay that for a while!
I wouldn't be too hopeful about the reaction you get quoting this forum to someone like that when it is going against his plans! We say nothing that isn't backed by reputable medical literature and personal experience but for many GPs it is still Dr Google!
The tapering seems way too quick, especiallly if you're stilling having pain. I will address the jaw issue. I was having pain in my jaw (not claudication while eating). When I touched along the edge of my eyebrow lightly, there was referred pain in my scalp, above my right eye. Went ER for possible GCA. Biopsy ruled that out, but jaw pain was still there. Went to dentist and described the pain. He diagnosed acute TMJ/TMD and I was fitted for a bite plane to be worn 24/7 except while eating. He said the pain in the forehead is because the jaw muscles attach at that point. I also had immense pressure in my head, pressing on my ears to where I lost most of hearing in left ear. The bite plane seems to be working for the pressure, but not 100%. I've been wearing it for approx a month now and it's been adjusted a couple of times. The most recent adjustment seems to be working. Giving it time and hoping it's supporting the jaws. I believe a lot of the pressure is from the moon face pressing up and out. It's as though my head is in a pressure container full of water. My thought was it's either the jaw disintegrating or the connective tissue loosening. He did not confirm either.
I just need to point out that the biopsy does NOT "rule out" GCA, It does rule it IN if it is positive but a negative biopsy just means they didn't find what they were looking for and that can be due to several reasons, not least that GCA is present elsewhere but not in the piece of artery they looked at.
Uh oh! It's been reported that alendronic acid has caused bone loss in the jaw. Proceed with caution!!
My reading is that MarionA has bone loss in her jaw. As she hasn't begun taking Alendronic Acid yet, how could this have affected anything? OP
You would think that if a patient already has loss of bone in the jaw, anything associated with making it worse should be avoided.
I wasn't making a medical point, Pro, just a factual one.
Incidentally, are you referring to the small risk of osteonecrosis in the jaw from alendronaye use ( I've just looked it up)? Otherwise, I thought I was taking AA for the good of my bones generally. It seems to have got a bad reputation on this forum though.
Not necessarily -some take it without issue (including myself) but it can cause problems for certain people -and not all GPs seem to take that into account -just prescribe automatically.
That’s all we are trying to highlight.
So was I.
As DL says, it doesn't have a BAD reputation in general, though one or two are dead set against it, but it is wrong to dish it out willy nilly as many doctors do without being sure it is needed, I was handed it by one GP but did my homework and discussed it with a different GP who agree with me we should wait for the dexa result which showed no need for it. Over 11 years later my 4th dexa result was little different from the first having never taken AA.
read someplace that you shouldn’t take prednisone & calcium at the same time. Wait a few hours between
Just reading through this thread, a bit late as I've been travelling. If you have already experienced some bone loss in your jaw then it seems you should avoid any medication which can add to this problem. Unfortunately I think most of the bone meds are implicated in this, possibly with the exception of teriparatide - and that generally requires a course of a different bone med once its allowed dosage is ended. For what it's worth, I started taking Vitamin K2 (not K1) several years ago when I was told I should start AA but was reluctant to. I did manage to improve my bone density, and have never taken a bone med. However the point which may be of interest to you is that I had no idea Vitamin K2 would help my super-sensitive teeth. Before PMR diagnosis, and before I started taking any medications of any kind, my teeth were bothering me so much I was told to rub some toothpaste for sensitive teeth on them when they felt really painful. A few months after I started taking some supplements (along with the pred for my then-new PMR diagnosis) I realized my teeth were not bothering me nearly as much and in fact they have continued to improve to this day. Of all the various things I did to improve my bones without bone drugs I believe it is Vitamin K2 which has been the most beneficial for my teeth - and, I can only assume, for my jaw. Vitamin K2 sends calcium to the bones where you want it to be. Many dentists seem to know this, physicians not so much! A recommended dose (by Australian authorities) is 180 mcg. I have 100 mcg capsules so take one twice a day for a total of 200 mcg daily and have been doing so since late 2015. (I also continue to take pred although for most of the past six years at a dose around 2 mg.)
If you want to know more about what I've done to help my bones here is my story:
healthunlocked.com/pmrgcauk...
Thank you so much for this helpful reply and to read about your experience. Until PMR struck I was a good walker so hope to gradually return to that when everything is under control. I have been reading about Vitamin K 2 and wondering if I should try to increase it and now I'll definitely give it a try in preference to bone meds.
Well I think Vitamin K2 is important and unfortunately underrated, but weightbearing exercise - like walking 
- is also important. A many-pronged approach is best. It's work, not as easy as taking a medicine, but I'm not alone in having found it more beneficial than any med could have been. All the best!
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