Polymyalgia Rhuematica

I just wish alternative options were available, but really there aren't any.  One thing Eileen said a long time ago that sticks  in my head is the negative damage that inflammation can cause in your body w/o the pred,,,,,sooooo with that in mind pred seems like a good option.  I found it a very difficult drug to take in the first few months & found this forum extremely useful as my adjustment to pred was difficult.

Like yourself Mary I do wish other options were availabale but alas and alac we are stuck with pred, but as I said before I could not go back to the level and type of psin I was in.  It seems like Hobsons choice, but again pred works for me.

Hi Pat,

Yes I am presently on a 4 day green drinks only to see if that might help. I also use a water energizing supplement called Ayda Clarity. I finally made an appointment with my GP but can't get in for 10 days. Meanwhile I will carry on with my turmeric drinks, Udo's oil and fish oil, castor oil pack, hot showers and walks and gentle exercise. Has anyone ever heard of low dose naltrexone. It is used in large doses for treating people with addiction, but some case studies have been done with people with autoimmune disorders with great success.

Hi Pam, I am sorry that you had a difficult time with pred.  I am only in from a gentle walk about 200yards with my youngest son and I had to turn back because of the pull/ache in my calf muscles.  I have never ever had a problem with calf muscles before pred.  That is the one thing I miss is being able to walk.  I could walk 4 miles in just over an hour.  I magnetise my water, I take omega 3 superstrength and evening primrose oil at night.  I have never heard of Ayda Clarity.  Nor have I heard of naltrexone.  Are you doing 4 days green drinks only, if so what do you put in your drinks if I may ask.  In the meantime good luck with your journey.  Regards   Pat

Hi Pat,

Where do you live? I live in Edmonton/Alberta/Canada.

I did 4 days of green drinks, but had a light healthy supper on the 4th day - salad and veggie burger - no bun. I am continuing with green drinks for breakfast/lunch and light supper. 

I put 1 part water or almond milk 2 part fruit and 1 part green (organic spinach or kale) I add a dollop of yogurt, sometimes a little cherry juice, a tbsp of hemp  and 1 tsp spirulina. there are lots of recipes online.

At 4 AM was ready for prednisone, but had an OK day - did a half hour infrared sauna. Felt great.

Hi Pam and thanks for getting back to me.  I live in Belfast, Northern Ireland.  I may have to resort to green drinks as I am getting teeth implants in my lower jaw (well the work started last Monday).  Seriously though I am in to healthy eating and good nutrients for my body.  I don't smoke or drink but try to live a healthy lifestyle.  But with PMR it can be difficult at times.  I always have soya milk in the fridge as well as yogurt, so I am going to try and get some curly kale, cucumber and spinach and maybe a green apple and put it in my Ninja to make a nice green drink.  Thanks again Pam.   Regards Pat

H i Paula,  i know this is a daft question but does massage not iratate the muscles?

I use massage too but I have done so for many years. I sometimes feel very sore post-massage but that is actually fairly normal if there is injury.

What often happens is that there are trigger spots of concentrated cytokines, inflammatory substances, which lead to the hard knots often found in muscle. Cytokines are the substances that cause the inflammation in PMR but more generally when they are in the circulation.  In massage or with manual mobilisation of these trigger points these cytokines are released into the circulation and cause what can appear to be a flare of PMR. If you drink plenty it helps wash them out and it subsides within a few days without increasing the dose of pred. It happens even without PMR, just in PMR your muscles are more sensitive to it.

I think the important thing with massage is that you get someone who knows what they are doing and has heard of PMR even. I go to an osteopath who has several people with PMR and RA and she reads up on things I may mention and is very aware of flare ups and so does not treat me like she may others without PMR. 

Hi Margaret,

Muscles feel fine after the massage. I drink a lot of water, anyway, so maybe that helps. 

Hi Ptolemy,

Agree with you. My masseuse was recommended on account of her training and we discuss my needs before she works on me.

Hi Paula,

Thanks everyone for your responses.

Paula, how long have you been on Prednisone - how much do you take?

 

Hi Pam,

I started December 6, 2013 on 20 mg Prednisone after having undiagnosed PMR for nearly 4 months. I am now down to 6.5 mgs. I have not had any flares. I had a slight hiccup last summer, when iI developed a bizarre and undiagnosed skin rash and was put on 60 mgs for 3 days, 40 for 3, 20 for 3  and then back down to 10 mgs (where I had been before the rash). I had another hiccup this past January, when I devleoped a virus and ear infection and went from 7.5 to 10 mgs for about 2 weeks and then back down to 7.5 mgs.

My ESR has been normal since January 2014. I have it done every month. I am due for a bone scan this spring.

My other meds are:

Pantoprazole to deal with a possible irritated stomach from Prednisone. (I had gotten a bleeding stomach from too many NSAIDS before I was diagnosed properly prescribed Prednisone)

Estrogen (HRT)

Vit D, Calcium, Magnesium supplements and Fish Oil

Gabapentin (at night)

Thankfully, I have no other health issues.

 

Hi Paula going through the forum as i am up early, i reread your message to pam regarding acupuncture and what foods you eat,the excercise you do, and i wondered if reflexology would have the same effect as massage, 

I am amazed how clever all of you are regarding pmr i really dont understand yet but i am trying, 

Reflexology and massage are very different.

Medical massage done properly can actually identify and eradicate problem areas in muscles and is recognised mainstream medicine.

Reflexology claims to identify problem zones and stimulate them in some way to heal themselves - I'm not arguing the validity or otherwise of that but it is something very different. I've had reflexology and it was very relaxing too - but that isn't the same thing. It didn't make much difference to the back problems.

 

I have had foot and leg massage, the lady who does it is a reflexologist, but reckoned the massage would be better, as the reflexology would not help as such. She did tell me all about reflexology which is interesting though. I really enjoy the massage and am booked in for another next week.