Love this forum!: Just wanted to thank you all for... - PMRGCAuk

PMRGCAuk

13,029 members23,643 posts

Love this forum!

Evercurious
Evercurious

Just wanted to thank you all for the informative, caring posts you write.

Has been a couple of months since typing in “ aching shoulders and sore hips” came up with a PMR diagnosis, I had been avaoiding the Dr. , as she seemed to think most of my pain was illusionary . I was trying physiotherapy, expensive and without a good result, but after reading about PMR I visited the Dr. and was happily surprised she agreed with me. I was put on 15 mg of prednisone and the relief was immediate and miraculous! Just not long lasting. My dose was upped to 20mg, which did the trick. I was pain free and had such energy and what I see now was a prednisone euphoria. Loved it!

Have just started my first taper - down to 17.5 mg - and have lost that euphoric feeling. Have had reminders of the shoulder and hip pain, but just shadows of what was. The Dr. Called to see how I was doing and as I had just read PMRpro’s wonderfully informative piece on DSNS (I think) I asked if I could take charge and do a slower taper than she suggested. She agreed! Thank you PMRpro!!!

You are a lovely bunch with lots to share, so glad I stumbled upon you.

19 Replies
PMRpro
PMRproAmbassador

You're welcome!

I think you are on the right track with managing your pred. yourself. Good for the Dr. to be ok with that.

If you have a shadow of pain then your pred is too low. Living with the shadow of pain, in my experience, just leads to a further flare. I have been up and down so many times and have recently come to the conclusion that a lot of my back pain is truly pmr. When the pain settles in my back it takes a little higher dose of pred to relieve it. Generally I am on 11-11&1/2 mg. but when my back flares I need 12-13mg. I usually only need to go up for a few days until the back settles.

I have found the pain of pmr roams the body. When it is in my back , my hips and neck hurt. When my neck is ok my knees hurt. So I am trying to manage each area of pain with a different level of pred. without going below 11. or higher than 13.I don't know how good an idea this is, I just know it is working for me. Unfortunately, I haven't been able to get to 10. When I tried (using the slow method) I had a flare.

What a way to live

Good luck on your PMR journey.

Lin

PMRpro
PMRproAmbassador in reply to Linny3

I have myofascial pain syndrome that affects my back quite badly over and above the PMR. It is better at higher doses of pred - and that is because they are both caused by the same inflammatory substances and pred works on them both. MPS is found more often in patients with PMR. If I get the MPS worked on as a separate entity then I can manage the PMR on a lower dose of pred. The MPS flares at the start of almost any PMR flare - and if I can sort it out the later flare of PMR is far less severe or even aborts.

They use what the UK would regard as complementary techniques for MPS here - massage, myofascial release and needling. All of them work well,

Linny3
Linny3 in reply to PMRpro

Thanks, I need to check that out. I have been afraid to because any type of massage work always hurts me afterward. So I have stayed away from all of those modalities.

PMRpro
PMRproAmbassador in reply to Linny3

It must be used properly - and many people with PMR do find they feel worse afterwards for a short time. That is often because the massage/manual mobilisation activity releases the inflammatory substances points into the system from where they are trapped in either the muscle fascia or the trigger points - and that can make you feel as if you have a PMR flare until they wash out. I find drinking plenty of water post treatment and a gentle walk in the fresh air is important and most good therapists will tell you to drink plenty. I expect to feel less well for a short time - but it is never as bad as I expect it could be. It is best to get them to step up the level of treatment they carry out slowly - like most things with PMR. It may not be the approach for everyone and the choice of therapist is key.

Evercurious
Evercurious in reply to Linny3

Oh, it’s good to hear from everyone’s experience. I was wondering if I should ignore the hints of pain or not. Would it make the next taper unsuccessful? Hmmmmmm

Hi Evercurious, welcome, you are amongst friends 😀

Evercurious
Evercurious in reply to Pastit

That is a good thing to know,Pastit, feel a little isolated in the real world.

So glad the forum has been helpful for you! Me too!

Each time I lower my pred dose I initially get more stiffness and soreness in shoulders and behind knees. I give it a couple of days and it seems to settle a bit, like my body is adjusting to the new dose.

Reducing by small increments (once I was at 15mg) helped. Now that I’m at 10mg I am staying here another (extra) week and will be reducing only .5mg each drop.

Listening to your body/symptoms is key.

Good luck as you taper and keep us posted.

Thank you PMRCanada. I live in Ontario, good to reference Canadian options, too.

Howdy neighbour! What area of Ontario?

Near Ottawa - Perth. Where are you situated?

Tillsonburg. 30 minutes from London.

My stepmom lives in London, seems like there is wonderful health care available there.

PMRpro
PMRproAmbassador in reply to Evercurious

The first time I came to Canada was to a science meeting in Ottawa. We flew to Toronto from Glasgow and some clown had told us to use the bus to get to Ottawa. It was an interesting if not very comfortable long day on the bus! But in the morning on the way to Glasgow we passed through Perth and then again on the way to Ottawa...

Horizon12
Horizon12 in reply to PMRCanada

I quite agree with you. I am on 10 mg at the moment and intend to stay there for a month, then taper down 0.5 mg every month. I really don't want another flare.

You are very welcome ,keep posting to let us know how you are.

We really are a uniquely blessed group! Lucky or what?

Keep with us Evercurious, you will be well looked after!

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