For several reasons, wont bore you but I am stuck living on a small old boat in Grrece and unable to afford to change the situation.
Five years ago I was struck down with the terrible symptoms of shoulder and buttock pain, not being able to clean my teeth or raise from the loo.
After 4 or 5 months of no diagnosis a nuerologist in Levkas came up with PMR which i had never heard of. 30 mg of medrol initially and then pred "I was cured", I have been trying the reduction for 4 years and every time I et down to 10 mg I am immobile.
However last december i tore a calf muscle and since then the symptoms are out of control.
Currently I am on 20 mg Pred daily and 15 mg Methotrexate once per week as prescribed by a Rhumo professor here but the symptoms wont stop..
Now I am worried because the pain has always gone with increased pred before.
The only way i can function if necessary is to take 100 mg Volteren tablet the night before, that will give me reasonable relief for a day.
Has anyone had similar experiences, as an aside I have recently acquired Tinnitus and a rushing pulsating lightheadedness when rising after being seated for a while.
Thanks
John
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nostromo
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John,Tinnitus can be a side effect of the steroids but it can also be a symptom of Giant Cell (or Temporal) Arteritis), which is linked to PMR. The rushing pulsating lightheadedness you describe could also be a symptom of GCA. However, if you haven't had your blood pressure checked recently, then perhaps you should do so just to rule out raised blood pressure as the cause.
In the case of GCA, you would need a much higher dose of steroids to deal with the inflammation that causes the pain plus possible other symptoms. Have you had ESR and CRP blood tests for inflammation carried out? Also, are you taking a Vit D3 supplement - any severe deficiency can cause pain in similar areas to those of PMR?
Another thought is when you tore your calf muscle did you perhaps injure your spine at the same time? Such injury can lead to pain in the spine, legs and arms.
It sounds as though you certainly need further investigation.
Off to university hospital for research in Heraklion on Monday for a fourth opinion. I am armed with all your comments and info this time, should be interesting..
About 1 in 6 patients with a diagnosis of PMR at the outset of their symptoms later have it revised to something else, often late onset RA. It is possible that a higher MTX dose might be effective if that were the case as that is the standard starting approach for RA of most sorts. That Voltaren works suggests what you have is not directly PMR and it is possible that you have something like myofascial pain syndrome that is mimicking or contributing to your apparently PMR symptoms.
A percentage of patients become resistant to the corticosteroid they are on - for me Medrol didn't work even at 20mg/day so a change to another form of corticosteroid may help - prednisolone, prednisone and methyl prednisolone are the usual but hydrocortisone also works when taken more than once a day. Some patients do not absorb the steroid - then injections are an option and are mentioned in the most recent guidelines for the management of PMR:
Thanks for your replies, I am new here so forgive me, I dont like to write too much but I will give you more details incase anyone can offer further advice as I am getting desperate.
4.5 yrs ago when diagnosed I had Full Bloods, CT Scans and Motor Nerve Conduction Studies, My bloods didnt have the pmr marker i was told but by default the Nuerologist diagnosed PMR. Within hours of taking 30mg of Medrol I had the miracle cure!!! I continued with medrol and then Pred for 4 yrs, trying to reduce the dose slowly then having to increase it again when symptoms returned.
7 months ago 'Dec 2015' after hurting my leg the symptoms were not really responding so i visited a nuerologist whose only goal it seemed was to get me off pred, she gave me various other drugs inc anti depressants and anti phsycotic drugs Whilst gradually reducing the Pred and increasing my pain, I gave up and paid a lot (for me) to go to a prof of rhumatology.
We did , MRI, CT scans, Bone density, Motor Nerve, Full bloods, again my CRP and ESR was normal, he says this is true in about 3% of cases. An RA/ RF test was negative. He says by default having tested for everything else I must have PMR, he put me on 20mg Pred and the 15 mg Methotrexate once per week.
The symptoms and pain have not gone this time which is scary and confusing, without volteren or ibruprofen to supplement I cant function at all. The rushing in my head on rising is also concerning as this is fairly new along with the tinnitus which is a minor irritant compared to everything else. My blood pressure is and always has been normal
The rheumy has mentioned enbrel, but is way out of my price league, he says there are some good reults with PMR and enbrel.
I am so greatful for your replies and help its so depressing and this help gives me hope
There is no "PMR marker" - if there were there would be far fewer problems diagnosing it. The blood markers are only indicators of inflammation and can be raised with any number of things - but can be normal in about a fifth of patients who do actually have PMR.
I have no idea at all where he gets the idea that there have been good results with enbrel - I have never seen anything mentioning it and it isn't mentioned in the 2015 recommendations for the management of PMR:
I would be sceptical and say that maybe they are his patients who didn't actually have PMR but one of the forms of arthritis (RA, psoriatric arthrtis etc) that can resemble PMR and would respond to it. It is possible for them to appear with a very similar clinical picture to PMR and with no other markers.
Why on earth did your doctor think you needed anti-psychotics and antidepressants to wean off pred? But that's enough of the negative.
I'm sorry - I can't really suggest anything other than another opinion and I do realise that is a question of cost. If you are possibly developing GCA (which has already been suggested I think) then maybe you would need a higher dose to reduce the inflammation. It is common for a flare/resurgence in symptoms to require a higher dose to get it under control and the latest guidelines do quote up to 25mg but not more than 30mg:
My other concern would be that, if it isn't early GCA, you do actually have the early signs of perhaps late onset RA - which initially can be identical to PMR - and in that case a DMARD would make sense but there are many that need to be tried before enbrel that are far cheaper.
Of course - in the case of PMR and GCA I doubt Greek doctors have seen it much as it is a disease of the north, becoming rarer as you progress towards the equator. Not sure about other forms of vasculitis/arthritis.
Thanks for your help and reply and forgive some of my stupidity,
I have gone along with the doctors for 5 years without questioning but no longer.
Firstly, this rheumy is already arranging a second opinion, that will actually be the 5th, 1 British Gp, 2 Nuerologists and now 2 Professors of Rhumatology, the current one was highly reccomended and expensive and lectures in the states often, he tells me he is a specialist but who knows?
He didnt mention Enbrel by name but said that it was a weekly injection and would be 15k a year, (he thought I would have insurance, alas not) so google did the rest for me.
He said that they had several patients in Athens showing very positive results.
Next, The anti depressants etc were prescribed by the second nuerologist that was sure my body had become addicted to the pred and was mimiking the symptoms.
I dont know, how much can you believe and trust?
I was always brought up to trust policemen and doctors and now my body is falling apart and I dont know.
I have just written to the professor again to ive him an update whilst he is organising a new opinion,
Since my latest bloods (normal) 6 days ago I hace been taking 600mg Ibruprofen twice a day, felt very much better, yesterday was Methotraxate day so I didnt take any Ibruprofen, today I can hardly type.
I discussed this with a colleague from London at the meeting I'm at last night (no names, no pack drill) - he is in the medical field and Greek. He says that it is common for doctors in Greece to recommend very expensive drugs because they get a kick back from the drug companies for doing so and I should warn you of this. Many patients who need drugs in Greece get them from Bulgaria or (I think he said) Skopje - prices are far lower there than in Greece.
You don't become ADDICTED to pred, you may become dependent on it and need a slightly higher dose to get the same effect especially if they try to yoyo the dose. In PMR you need pred to manage the symptoms as long as the underlying autoimmune disorder that is the cause of the symptoms is active - reduce it too far or too fast and the symptoms will return. Many patients also suffer a steroid withdrawal effect which is rheumatic in nature - but the best way to manage that is to reduce in very small steps, not add in another drug unless it is a DMARD which some doctors feel can help reduce the dose. I think it is worth a try if you don't get side-effects - but there is no guarantee it will work for everyone (or even anyone).
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Pmr
Anyone else on Actemra for PMR?
Stuck on15mg for another six weeks
Not sure if it is PMR now
Stuck on two and a half mg.
