Reduction plan advice please

[Zhenya]

Hello everyone

I have been reading the daily digests since being diagnosed with PMR in October 2014 and have found them informative, comforting and reassuring. Thanks to all who have posted during this time and helped me cope with this horrid complaint.

One of the posts today has prompted me to write for the first time because I have similar problems with reducing the Preds. Like many others, I experienced a 'miracle cure' on 15mg, then was fine on 12.5mg after 3 weeks. Not so lucky on 10mg when pain returned in my shoulders and arms, so GP advised 11mg for a month before returning to 10mg. With this second attempt at 10mg I was fine and decided to remain on it after reading about the Bristol group's advice to stay on 10mg for a year. Since my year was up since diagnosis and I felt so well, I decided to start the slow reduction plan. Now in my third week of reducing to 9mg, so not even halfway through the plan, and the pains have come back with a vengeance. I took 9mg on Saturday, then back to 10mg on Sunday, Monday and today Tuesday. I am due to take 9mg tomorrow. How can it be that I am in so much pain, even on the days when I am back to my 10mg dose if previously I had been fine on it? I don't understand how the few times I have reduced to 9mg have had such a drastic effect. Please can anyone explain/advise? It seems to me that 10mg is not working now and I will have to go back up to 11mg or even 12.5mg. Many thanks in anticipation of replies.

[suzy1959]

Well, I am sure PMRpro will have a more fluent explanation, but from what I have understood about reductions and the many flares I have had- It is likely that you have reached the level of Pred. that you need to keep the inflammation at bay and may now be flaring as you have gone below it at 9mgs. This seems right because it has taken 3 weeks for the effects to become apparent, so is not likely to be steroid withdrawal. I, like you , wanted to be like the others and able to reduce to at least 5mgs, but have repeatedly got stuck below 11mgs., and this is for 3 years now!

Unfortunately when we flare we often need a higher dose of Pred. to get the flare under control again. Once you have, you can then start to consider a reduction by half a mg. as you might be alright at 9.5, but it could be that you need 10mgs for longer. What I have learnt the hard way is that the PMR will do what it wants and all we can do is take the level of steroids that we need to manage it.

[PMRpro Ambassador in reply to suzy1959]

What's not fluent about that Suzy? All sounds fine to me

[PMRpro Ambassador]

It took me a very long time to get below 10mg - I needed that to be comfortable for years, not just one. I kept trying a reduction - never worked.

Although it isn't really known, there is some suspicion that the activity of the underlying autoimmune disease varies - waxes and wanes. If you try reducing when it is relatively quiescent you will succeed, if it is having an active period you may not.

If it were me I'd go back to where you are comfortable, wait a couple of months and then try another 1/2mg reduction and see if it works. Everyone is different, You may well find that just 2 or 3 days of, say, 12.5mg may calm it all down and you are back to being OK at 10mg afterwards.

And are you sure it is the PMR? You haven't overdone it and pulled back muscles of something? Or hatching a cold? Or the weather is affecting things? Cold, wet and windy doesn't do me any good at all - cold and dry is fine.

[Charlie1boy]

Hi Zhenya.

Yes, I'm experiencing very similar problems to you at the 10/9mg level, though I can't say I've had a flare as yet. Consequently, I was interested to read your post, and the replies.

For the moment, I am persevering with 9mg, but, because the preds last somewhere between 12 and 15 hours for me, I have gone back to taking 5mg at bedtime, and the other 4mg at breakfast. Hopefully, this will prevent me from being so stiff and grotty in the morning, and the 4mg will keep me going through the day.

This pmr really is a "yak" condition, isn't it?!!!!.

Wishing you, and all other sufferers, all the best.

[katpat]

I really appreciate all of the good information found on this forum. I was diagnosed with PMR in August 2014 (after a workup for Lyme Disease). Prednisone 10mg settled it down within 24 hours. By mid December 2014 I became very sick with headache and flu like symptoms. I was quickly diagnosed with GCA after TAB and started on 60mg Prednisone. Long story short is that I was started on Methotrexate early in 2015 and by mid-summer my Rheumatologist was questioning whether it was working to control the inflammation. The plan is to change the Methotrexate to Cytoxan. I have researched this and am very nervous about taking it. I would appreciate some advice and information if any of you have had this experience. I am in USA and realized that different areas use different methods. I am female age 63. Thanks very much. I will continue to follow this forum as I have found it very valuable and comforting to connect with others.

[HeronNS in reply to katpat]

katpat, I think you should write a new post with your problem. Just to speak to your osteoporosis, I have recently discovered that in order for calcium and D3 supplementation to work we also need to make sure we are getting adequate K2 (NOT K1) plus Vitamin A and E. Vitamin K2 used to be available in our diet but now that most animal products are produced on factory farms by grain fed animals K2 has been practically eliminated. Just a suggestion to try adding that to your anti-osteoporosis protocol. I am hoping that this will also help me reduce PMR inflammation - who knows? Can't hurt! I, too, would be very nervous about some of the medications available. Pred side effects are bad enough to deal with.

[katpat in reply to HeronNS]

HeronNS - thanks very much for the advice. I surely appreciate this.

[katpat]

I failed to mention in my previous post that I have osteoporosis and this is the reason why my doctor is anxious to decrease and discontinue the Prednisone.

[Zhenya]

Hello and thank you to everyone who has so kindly replied

For the time being I have decided to persevere with the 9mg on the slow reduction plan, to see if things will settle down, and may follow Charlie1boy's regime of dividing the dose. The pains in my arms and shoulders are just about 'liveable with' at the moment, and I am very anxious to cut down on my steroid intake, not least because of weight gain and moon face. However, if the pains get worse I will take the advice from the PMRpro and increase the dose. It has to be said that I have been overdoing things lately (lots of shopping, cooking and cleaning for visitors!), so that may have exacerbated things.

Has anyone any experience of practising Mindfulness to help cope with the pain? I have downloaded a book on it and would be interested to hear people's views.

Thank you again

Zhenya

[HeronNS in reply to Zhenya]

Hi Zhenya, I haven't done the "mindfulness" thing as such, but I am lucky to live near a harbour so can have daily walks near the salt water, although it is in a city, and I do concentrate on my breathing for part of the walk, breathing in health, and every third breath or so directing thoughts of healing to whatever part of my body seems to be most in need on a specific day, and breathing out toxins. I have also started learning tai chi and I really do feel it strengthening and relaxing my body.

Let us know how you get on. Jean