PMR diagnosis increasing?

[HeronNS]

Regular dental checkup and cleaning today. Before she started putting things in my mouth I told the hygienist about the PMR journey I'd been on since last appointment, and she told me that one of her co-workers in the clinic and at least three patients have PMR. She said it looked like it was increasing in frequency, but I pointed out it was probably just being recognized more often. After all it hasn't been that long since doctors decided that fibromyalgia wasn't just all in a person's head! But *is* it really increasing in frequency?

[Irldino]

I live in a very small town and know of three others within my tai chi group who have PMR.

[piglette in reply to Irldino]

There is just one other person with PMR in my Tai Chi group of around twenty, who is the only person I have come across with PMR. Perhaps it is Tai Chi that gives us PMR, ho ho!

[PMRpro Ambassador in reply to piglette]

Nah - never done it so it can't be

[piglette in reply to PMRpro]

Perhaps you did not realise you are doing it!!! Perhaps I should write a paper on Tai Chi causes PMR. It makes one realise how some of these stupid statistics happen.

[PMRpro Ambassador in reply to piglette]

Correlation is NOT causation...

[HeronNS in reply to Irldino]

Goes to show that tai chi works for lots of ppl with pmr!

[Irldino in reply to HeronNS]

Have been practicing Tai Chi for over 15 years. It is such a good treatment for PMR. Even in the first six months of the condition when I was very stiff I felt slightly less stiff when practicing although I was so tired I had very little energy and my practice diminished. Once I went on steroids I was able to get back properly to my tai chi. I had tight tendons on the left side of the body and through practice this has all loosened out. It is such a gently but powerful medium. Exercise through relaxation. The focus is on stretching gently and relaxing the muscles so perfect for PMR. Brilliant for osteoporosis too as it is weight bearing with all movement coming from the floor up and as practice and understanding develops this weight bearing aspect comes into its own. Great for the head too

[HeronNS in reply to Irldino]

It's hard to believe but apparently it does increase bone density!

[Megams]

Hi Heron

Am a regular visitor to my Hygienist every 3 months.

Last visit I was shocked to learn I had a touch of gingivitis and think brought about due to GCA possibility with a temporal artery biopsy, doubling intake of my meds plus stress of it all with suppressed immunity added to the mix.

Of course I upped my use of warm salt mouth rinses plus extra intake of my lypo-sheric vitamin C.

Prevention is better than cure in my books and by being a regular every 3 months I have not needed to see the dentist.

Your thoughts on PMR being possibly now recognised would be the answer along with an increase of the disease especially in younger folk.

My Rheumy confirmed that he diagnoses 2 to 3 younger folk a week.

I asked him for some statistics overall - he confirmed that no statistics are kept in NZ. I think that is appalling.

It doesn't say much about the disease nor the importance of finding a cure for those afflicted with the condition I feel.

Kindest regards

[Rose54]

Hi

I was aware of PMR through my job so was lucky and able to diagnose myself as GP where unable to .

It now seems as if everyone I talk to knows someone who has it

I suspect that often symptoms have ben miss diagnosed such as I was told I had CFS

With the internet we are researching more ourselves and not believing everything GP tell us.

As well as discussing health issues more.

I am amazed how often I am told my friend has that or a family member .

Sorry doesn't really answer your question .

Regards Rose

[PMRpro Ambassador]

Time to set up your very own informal support group ma'am!!!!!!

Autoimmune disorders as a whole seem to be increasing in frequency - and it is probably a combination of more of them and being recognised more.

The perception was that PMR was more common the further north you went in Europe - but some of the top people in the field are in southern Austria and northern Italy with a few in Spain. I had a long and very interesting PMR conversation with the senior consultant at the hospital today - not entirely (partly) why I was there but hey - who cares. He agrees with my opinion: there are more, especially more young patients but they are not recognised because the rheumies aren't thinking about if for younger patients.

[Megams]

Heron - I am back again twice in one day and need your advice please. I am most interested in finding a suitably trained practitioner in Auckland NZ where I live who can deliver the BioFlex Laser Light Therapy.

I emailed the site in Canada that you refer to for assistance but have not heard back.

Are you able on my behalf to kindly pick some brains as a short cut please as want to start this therapy asap.

I have a personal interest into alternative therapies and had started studying in the herbalist field prior to PMR and intend going back to it when I am more human from recent set back with my PMR flaring when tapering.

Sincere appreciation in advance for what information you may be able to find out for me.

Blessings

[HeronNS in reply to Megams]

Hi Megams. I have found that they do NOT seem to respond to questions on their website - rather poor business practice. Maybe a bit of persistence would pay off? I will ask my physiotherapist later this week (have an appointment Thursday) and she might have another suggestion. Also it seems from what Queenfisher has said that the PEMF or iMRS machines might be effective also, and they seem to be more widely available. I still think they are only one tool in our arsenal. We still need to watch our diet, activity level, and exposure to stress both physical and mental. Anyway if I find out any more about New Zealand and Bioflex I'll let you know as soon as I do.

I did get an email from them some time ago as I signed up for a webinar - which I ended up not participating in as I couldn't figure out the technology to enter the site and my son wasn't home to help me ;( . If I still have that email I will private message the address to you.

[Megams in reply to HeronNS]

Thank you so very much for your prompt reply and in-depth info, most appreciated.

I do everything right and a full time job just caring for myself let alone anyone else in the family. Bet you are exactly the same.

I am very much into alternative therapies & supplements as there are many strings to the PMR, GCA bow (as you know) with many facets affecting so many areas of our bodies - we need all the help we can get.

Stress is my number one enemy as with others no doubt - still struggle from time to time with this and side affects of steroids just magnifies the intensity of the stress.

I appreciate your link to the email to David and will give him a try in the hope he responds.

My kindest regards once more

[HeronNS]

Thought the comments from the Bioflex contact I made last September would interest the readers of this thread. I had asked him whether light treatment would help PMR and this was his measured response:

"Laser therapy has anti-inflammatory effects and may help PMR….but the disease often recurs necessitating ongoing laser treatment.

We treat many patients with RA quite successfully, but every patient responds differently. Laser therapy won’t eliminate this condition….

But it should help decrease inflammation and pain associated with it."

I did wait until I was heading into the lower dose range as I wanted help getting there and waking up the adrenals. My physiotherapist told me that prednisone interferes with the effectiveness of the therapy so that was another reason for waiting. I started when I was tapering, using dead slow method, from 8 mg to 7 mg. As you can see I haven't speeded up the taper particularly (currently at 6, starting taper to 5.5) but it does seem to be improving success of the taper. I've always felt better at the end of a taper than I did at the beginning and if over time I can reach 5 or even 4 a few months earlier than otherwise, and stay there without relapsing until ready to taper further, then I'll consider this treatment successful and well worth it. What I anticipate happening is once I've reached the end of the series of LILT treatments I will almost certainly have to go back for a "top up" every few weeks. Again, if that keeps the inflammation in check and helps keep pred dose low, I'll be happy.

[houndmum]

We could only assess if we could be sure that there aren't any doctors and rheumatologists unaware that IT exists! Sadly that doesn't seem to bethe case. Maybe it shows there are pockets of knowledgable medics here and there. Sorry if this seems somewhat cynical.

[SusanEleven]

My rheumatologist says her PMR patients come in batches. Things will be very quiet for a few months then there will be a whole group of new patients all within weeks.