Age at onset of PMR symptoms?

I'm afraid I don't think there is anyone on any of the forums as young as you - most of us struggle to get a diagnosis if we are in our late 40s and early 50s because they say we are too young. In fact, I think most of us are old enough to be your mum - you are the same age as my daughters and I didn't start young!

However - I'll be frank: there is no point at all taking a dose of pred that is too little to manage the symptoms. It means you have the downsides with no benefits to balance them out. All pred does is combat the inflammation to relieve the symptoms and if you aren't taking enough the inflammation will eventually build up again to the original level, overflow and leave you in pain. Every morning a new dose of the inflammatory substances are shed in the body and cause a new lot of inflammation. The ideal with pred in PMR is to use a higher dose to clear out the existing inflammation and then reduce to find the lowest dose that allows you to have a minimum of pain and stiffness. If you aren't taking enough - like a dripping tap into a bucket, the inflammation builds up again and you are in pain.

For PMR that starting dose of 60mg was far too high - no wonder you had such bad side effects. For PMR the usual starting dose is 15-20mg - a very different sort of level. You also have to play your part - you have to take the pred early in the morning, soon after the new lot of inflammatory substances is shed in the body to get a faster response, and for some people the effect only lasts for about 12 hours and splitting the dose helps better. And you have to make lifestyle changes, you need to avoid activities that make the pain worse - your muscles remain intolerant of acute exercise and if you overdo things, you will suffer delayed onset muscle soreness that will take possibly days to go, and it won't go at all if you continue to do too much.

It isn't uncommon to experience raised BS - and as an African-American you are prone to that anyway - and to put on weight with pred. Cutting carbohydrates drastically helps both. Managing raised BS is no different in pred-induced diabetes from Typoe 2 diabetes.

However - your mention of swollen lymph nodes and kidney involvement makes me wonder if possibly it is NOT PMR or not "just" PMR. The problem is compounded by that high dose you responded to. Many things will respond to that dose and while I appreciate the rheumatologist you saw has looked at many other things, he could still have missed something. PMR can be the presenting clinical picture for GCA (giant cell arteritis) which is very similar to Takayashu's arteritis - which is very rare but appears in women your age, people over 50 are told they have GCA. Many doctors appear to believe you must be Asian - this isn't true, it appears worldwide in all ethnic groups, it is just more common amongst the Japanese. 

Have you had a PET-CT or PET-MRI to look for inflammation in blood vessels? All 3 of the diseases I mentioned are forms of vasculitis and those scans are the only easily available ones to show up the inflammation. Some forms of vasculitis respond to other drugs, PMR and GCA cases tend to depend on pred, it is the only guaranteed result as yet although that may change as I'm about to explain.

But if we stick with the PMR diagnosis for now: If the MTX doesn't work (and for most people with PMR it doesn't), are you in the USA? There have been small pilot studies using an RA drug called toclizumab (brand name Actemra) in PMR. It has already been shown to work to achieve early remission in GCA and there are some PMR patients who have also gone into remission. In the USA it is possible to get funding for it from insurers and Genentech, the company that markets it. It is very expensive so as yet is not used widely for GCA/PMR.

Do keep in touch and let us know how you get on.

This is the first time I have heard of someone having the swollen and sore glands with PMR.   I had that before my hip pain, neck and shoulder pain and before I was also diagnosed with GCA.   It has never been linked to any of them by my Dr.'s.  I still get sore and swollen gland only on my left side which is the side that GCA has affected.  a for your age, I have seen several on a support sight on facebook.   Rarely do you see this in African American but it is likely that you would find a European lineage in your DNA.   I would give you a link to the Facebook page but this sight doesn't accept them.  It would be blocked.   If you have Facebook you can look it up on there.  Polymyalgia Rheumatica Support