PMRGCAuk
7,391 members12,131 posts

What I have learned from PMR/GCA

As I look back over 2017 (a tough year for me) I ask myself, what have I learned?

How to live with and manage pain and fatigue (even tho I don’t want to!)

I must advocate for myself with my doctors and the health system (this forum is invaluable for this!)

That any support from family and friends should be gratefully accepted

That humor helps (thanks MB!)

That lifestyle truly makes a difference ( low carb, exercise, sleep)

That we’ll wishes from people I don’t even know makes the journey easier

And last but not least: patience, patience, patience.

Thank you all for sharing your experience, your knowledge and your warm support. I am very grateful.

Happy New Year!

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Thank YOU! When you respond to everyone so graciously no one would ever know what a difficult year this has been for you! Here's to your better 2018.!

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How true! Was sitting here crying because (today) I feel like GCA is kicking my butt. Your post reminded me that I’ve kicked back and in doing so learned some life lessons. Thank you! Drying my eyes and going to put warrior cape back on. Seriously - THANK YOU!

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Such a wonderful selfless message. Thank you!

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Hear! Hear! Beautifully paraphrased!

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Hear Hear. Thanks for this post - in a nutshell!

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Well put! Patience is a tough listen. Happy and Healthy New Year!

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Tough lesson... who asked for auto correct?

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Clearly my 2017 was very similar to yours. I've said before that I'd reached the age of 66 without ever having any serious health problem. When I was first ill I spent a lot of pointless time feeling angry with myself for not having realised how lucky I was to be healthy. I'm over that now and I just treasure every nice experience or small achievement.

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Thanks for your post - I'm sure we all can relate to that.

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Hi! I'm new to this site. I was diagnosed with PMR in April 2009. I absolutely refused to take steroids and was treated instead by a Homeopath. My GP supported me by taking regular blood tests to check my ESR level. It was 100 in June 2009 but within a week of homeopathy had dropped to 64. It took a year of treatment and an anti inflammatory diet but by April 2010 my ESR was 6. My GP was pleased but astounded. There are alternatives to steroids!

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A few of us have discussed it with homeopathic practitioners - and been told by them that while homeopathy could help with pred side effects there was nothing to replace pred for GCA patients. One in 6 patients with PMR will go on to develop GCA at some later date.

PMR is one thing - GCA is another altogether and I would not wish anyone to think they could use anything other than steroids to deal with it.

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i did not and do not have GCA and am therefore not qualified to pass comment. I did however have PMR and homeopathy can work instead of steroids. People need to know that there is an alternative to a drug with potentially very harmful side effects. My regular blood tests carried out by my GP proved the homeopathy was working. My GP also admitted that if I had taken steroids I would probably have had to take them for life. If 1 in 6 get GCA then 5 out of 6 just get PMR and possibly dont need steroids.

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Your GP is wrong. PMR can and does frequently go into remission - within 5 or 6 years for 75% of patients and many get off pred in less than that.

The blood tests proved the inflammation was falling - that may have happened anyway, not because the homeopathy was causing it. When you show me peer-reviewed clinical studies with large populations that show homeopathy relieves PMR symptoms reliably I will accept it gladly. The majority of such studies of the role of homeopathy to date do no such thing. And when asked for them, the homeopaths get very upset at being asked to conform to normal scientific practice.

As I said, PMR is one thing and if anyone wishes to try homeopathy for PMR they are perfectly welcome to do so. But if there is ANY suspicion there many be large vessel vasculitis or GCA involved then it would be medically negligent to encourage the practice. And I have every intention of continuing to point that out.

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Hi maman, I know two homeopaths who contracted PMR and in the end both reverted to taking steroids. I think it depends very much how bad the PMR is, in my case I could not even raise a fork to my mouth without excruciating pain. My homeopathic friends could not help.

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As PMRpro says, all the blood tests showed was that your inflammation levels had fallen. We are working hard with researchers to try to find effective alternatives to prednisolone. To do so demands scientific method and evidence - something that homeopaths don't seem very keen on.

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Hi Mama,

I think you raise an issue that many of us deal with.

As PMRPro has said, GCA is nothing to fool around with. Currently Prednisone stops the inflammation, so your eyesight is saved -- which is very important.

I have biopsy proven GCA and PMR.

I believe the anti inflammatory diet and herbals and homeopathy help with these diseases. Concerning GCA , currently, pred is essential to halting GCA. It does unpleasant and potentially harmful effects. We work to reduce those.

There is a biologic that is close to being approved by the FDA, in the U.S., or has been approved by the FDA for use for GCA. I can't recall the full name, but it begins with a "t".

I believe it looks promising and may either make pred unnecessary or help to reduce the necessary dosage of pred taken. This may be a good direction, for those who suffer with inflammatory diseases.

I think your position is good and helpful. Thank you, for your posts. Currently, it seems that for those with GCA, pred is a necessity.

Thank you and please keep us posted on how you are doing with this method of dealing with PMR.

To feeling better,

All my best, Whittlesey

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