Switched from prednisone to Methylprednisolone

Hi Diana,

  I do beleive stress is a major part of this disease. as I have had so much in the past few years~  thanks for your kind words, hugs to you too! Marie

 

Interestingly it is beginning to be considered whether local cortisone shots along with oral pred may be good where there are specific problem areas, like shoulders. It sometimes needs concentrated pred locally to reduce the inflammation and done as injections reduces the side effects.

Dear EileenH  , I think this information about local cortisone shots is very exciting.  I wonder if you have found any references to this being a possiblilty documented anywhere.  To me it makes a lot of sense.  We have a very excellent anesthesiologist here in town that specializes in cortisone shots for pain managment where it is needed.  She actually gave my husband a shot in his ankle many years ago when it flared up in pain out of the blue (Possible minor injury to ankle).  And I have had one shot of cortisone in an inflammed knee 10 years ago that stopped the inflammation for good.  Please tell us more if you can.  Like I said, it does make sense

I met an orthopaedic specialist at an international meeting a couple of years ago who was talking about myofascial pain syndrome which is caused by concentrated areas of cytokines, the same substances that cause PMR when released systemically (all over the body). It fitted with the problems I was having and we discussed the concept of PMR with this superimposed, so to speak. He said then that a patient with PMR might be OK on a higher dose of pred but as the dose was reduced these specific problems might resurface. If you then targeted these areas with cortisone shots it would very likely mean you could manage with a lower oral dose to manage the systemic inflammation once you had dealt with the intensive spots.

My pain specialist here in Italy, an anaesthesiologist too, was quite happy to work on the really bad bits with various techniques: the lower back in particular but also further up, shoulders and neck. At the same time, an orthopaedic doc gave me cortisone shots into my hips - 2 pairs of injections took out all the hip bursitis I had which was making it almost impossible to walk. The back work included cortisone shots, manual mobilisation of the trigger points (knots of muscle fibres in the larger muscle groups) and needling. Needling is called "Quaddeln" in German speaking areas and has been used for many years, I did find a reference to needling in the USA so try googling it. The back work took longer and needed repetition. It is now a year since I last had such shots for my back, I am fairly much pain-free and am down to 4mg oral pred. Dealing with the specific really bad spots has meant the oral pred has less to cope with - and cortisone shots work intensively where they are needed so the same amount of cortisone achieves much more and the side effects are less of a problem.

I had experienced this sort of therapy when I lived in Germany, it is common practice there  - my GP used quaddeln a couple of times for me. It is exquisitely painful while it is being done - but the result is so good you forget the pain afterwards!  I've discussed the concept with other doctors in the UK who aren't familiar with using these techniques like this but they think the idea is worth exploring. If I were you, I'd ask the pain specialist if she could discuss it with you. She may have something to suggest. Anaesthetists are very big on pain relief - and if you are in pain in one place the effects spread all over the body and causes a lot of stress more generally. 

Eileen, thanks for that info. I so appreciate that you are so up to date with all of this. I wouldn't even know where to start looking

Thank you - for info and for your personal experience with the shots.  I am desperate for relief. 

You must be patient - 4 days of pred is very early. It took months for some of my original pain to fade on just oral pred. Having cortisone shots is quicker but 5 years ago that wasn't an option for me. Every medical system is different - if you have access to someone who will do it, try it. It might not work for you as well as it did for me. 

 

Oh it took months for the pain to fade for you.  Oh, there is still hope I am on the right track.  For some reason I keep thinking that it should be all gone on the right dose.  Thank you for the hope (but I am sorry it took so long for you- I am not happy about that for you) but it lets me know I am not necessarily barking up the wrong tree. 

There should be dramatic improvement in response to pred if you have PMR as opposed to other things - but 70% is by no means "all pain gone" and longstanding severe inflammation is bound to take longer than a mild case. Also, muscles have a good blood supply so pred gets there well, tendons and ligaments don't have a similar blood supply so it takes much longer. That means your stiff muscles will be improved much sooner than joints that are affected.

I understand.  And yes, my stiffness if much improved but not  the pain.  So that is encouraging. However, I never did experience the kind of stiffness where I couldn't raise my arms. 

 I am trying to learn so much from all the ladies on the forum who have actually 'been there'  because the doctors do not share these precious facts. Perhaps they don't know them because they are not PMR specialist per se.