Recent dignosis

[onthescrapheap]

I was diagnosed with PMR about a year ago after blood test it was previously classed as Fibromyalgia for about 4 years until correct diagnosis.  I have heart and lung failure due to high dose chemotherapy 23 years ago for Non Hodgkins Lymphoma - I am a healthy specimen.  My GP and various consultants have confirmed my heart and lung damage is due to PRD (post Radiation Damage) and now they believe that th radiation is attacking my immune system.  I was put on a very high dose of preds (40mg) which I have gradually reduced over a period of time, currently on 5 mg which has stabilised me.  Has anyone else out there been through similar to me and does anyone also treat their symptoms with alternative medicine as my drugs cupboard is starting to bulge a little.  Thanks in advance for any advice.

[Celtic PMRGCAuk volunteer]

Oh, I'm sorry to hear of your many problems but we will be unable to recommend alternative medicine as far as PMR is concerned as steroids are the most tried and tested treatment and the only treatment found to control the inflammation that causes the pain.  However, following a diet including plenty of known anti-inflammatory foods and avoiding those known to be inflammatory, although not a cure, can help alongside the steroids.  

To be down as low as 5mg on the steroids from a starting dose of 40mg in a year is a great achievement but even if all is well at that dose don't be in a hurry to reduce any further at this stage as it can be a sticking point for many whilst the adrenal glands are trying to get back up to speed in producing their own natural supply of steroid (cortisol) having been suppressed by the long-term artificial steroids.  Love your name - I'm sure many of us would qualify to be called the same.

[onthescrapheap in reply to Celtic]

Thanks for your reply,I consider myself very lucky to still be here after being told I had three months to live with my cancer.  I am not a steroid fan at all and I find the side effects very difficult to deal with but I know there is no other treatment available.  I was wondering if others have used alternative treatments to help with the side effects and makes the pain of PMR easier to deal with.  I swim three times a week and that I find is excellent for the pain and my lungs its just unfortunate I am not a fish as swimming is where I am totally pain free.

[HeronNS]

I agree with Celtic that there's no other treatment for PMR.  But I do think there are many things we can do to improve our health generally and these will help the body as it gradually overcomes the inflammation.  I've been getting physiotherapy from a knowledgeable about pmr physiotherapist and also an alternative treatment called low level light therapy (google bioflex, toronto, kahn).  Someone else on this forum has been getting some kind of electromagnetic treatment.  These two strategies don't cure anything but they can help lower inflammation.  With your health history you'd have to get a medical okay to try either of them.  Depending where you live the electromagnetism (PEMF?) may be more available.

[onthescrapheap in reply to HeronNS]

Thank you for your advice I am always looking for ways to make things easier.  I also have physio for my lungs and I have Reiki which I do find helps amazingly but I have not heard of bioflex, toronto, kahn so maybe I will look into it.  As for the medical OK, my consultants are brilliant and are very open to alternative treatments - notl like 23 years ago when I had cancer and everything was a big No NO.  Thank you. 

[PMRpro Ambassador in reply to onthescrapheap]

Really? My husband had cancer 21 years ago and they had alternative therapists there for a few things for both patients and their relatives. 

Here in the region in Italy where I live they have a massive alternative department in the hospital that does the main oncology stuff. I don't care HOW it works - if it helps in any way then it is worth it whatever mainstream medics may feel. But this region is also big in herbal medicine, Kneipp and so on - and are very unwilling to ditch traditional medicine. My GP in Germany 30 years ago also used herbal and homeopathic remedies where appropriate. I have no problem with people scoffing - but when it achieves a result, even if it may well be placebo, it helped. That's all that matters. If it worked for me, I'll try it again. If it didn't work - OK, I'll not bother again.

[PMRpro Ambassador]

There is nothing that will replace pred - but there are probably things to try that may help alleviate discomfort. I find Bowen therapy very helpful and Pilates and yoga helped a lot too. Adding anti-inflammatory foods (oily fish, garlic, turmeric) may also help but I haven't found anything that helped by NOT eating it.

My consultant today said that once you are below 10mg there is little to worry about although under 8mg is ideal. You are well into that range.

[onthescrapheap in reply to PMRpro]

Thank you for your reply, I have not heard of Bowen therapy so maybe I will look into that, I have physio and a swim regularly which really helps.  Unfortunately because of all the other medicines I take I do not stay on 5mg for very long and I have to increase when I have a flare up.  I just want to be able to find a happy balance with everything so I can function without too much pain.  Thank you.

[PMRpro Ambassador in reply to onthescrapheap]

Does it help to stay a bit higher? i.e. would that help to avoid flares so you were on a fairly steady dose rather than yoyo-ing which is felt to make things difficult?

[onthescrapheap]

I have tried staying on 5mg but the side effects of the steroids far out way the PMR symptoms.  I usually have a flare up after school holidays (twin 15 year old sons),  My problem is relaxation and me time - we run a dairy farm and a tourism business so getting me time is always a problem.   I would just like to find something to take the edge of the stiffness and pain - preferably alternative therapy which gives me time to be on my own and relax a bit.  I have had a few suggestions which I will look into .  Thank you for your feedback it is very much appreciated.