Recurring pain

[Hollybee21]

Hi, I’m looking for some advice. I was diagnosed with PMR in approximately 2009, after trying to reduce Prednisone below 7 mgs for about 5 years my Consultant arranged for a blood test (can’t remember the name of it). It showed that I has had Adrenal Insufficiency and was informed that I would have to stay on Pred. at 8 mgs for the rest of my life. For the last 6 or 7 years I have been fairly good at 8 mgs but the pain has started to come back quite badly. Can you offer any advice please.

[PMRpro Ambassador]

It sounds as if you may well be relapsing - unfortunately it does happen. Have you spoken to your doctors? It will be similar to the first time round - 8mg probably isn't enough to manage all the inflammation and it is building up and overflowing so you are feeling it as symptoms. Not sure whether it is good or bad - everyone I know who has had PMR twice says the 2 episodes have been totally different in almost every way!

[Hollybee21 in reply to PMRpro]

Thanks, I thought that, but hoping it wasn’t a flair up (trying to kid myself as I have so many side effects with the long term Pred.)🙄

[PMRpro Ambassador in reply to Hollybee21]

What problems have you got? Maybe we can help. I've been on pred for 12 years and a lot of it above 10mg but I don't have much in the way of adverse effects. Many can be mitigated when you know how.

[Hollybee21 in reply to PMRpro]

Weakness in my arms and hands, aching legs at night, not sleeping, hot flushes (I am 72), the usual moon face. Good grief I sound a right moaning Minnie.

[PMRpro Ambassador in reply to Hollybee21]

I had all the first ones because of PMR - even without pred!! I had PMR for 5 years before pred so I had plenty of time to assess it!Is the moonface a part of general weight gain too?

I'm a bit surprised they kept you on as much as 8mg - I know it is supposedly the physiological dose but usually they try 5mg first as that is generally enough.

[HeronNS in reply to Hollybee21]

I think, and it seems confirmed by my experience, that pred can cause muscle weakness. However there may be other issues which are more under your control. Have you tried magnesium to help deal with aching legs? Pred can cause deficiencies of some electrolytes, and electrolytes include both magnesium and ordinary salt. I found by happy accident that I was sodium deficient although this is not a common problem and among several apparently unrelated symptoms which cleared up after I started consuming more salt (after many many years eating low sodium) were aching legs at night. Additionally, although I've been taking a small magnesium supplement for a few months (btw always take magnesium supplement at different time than calcium supplement) I began to get aching legs and lots of leg and foot cramps at night. A single 15 minute soak in a tub with Epsom salts seems already to have sorted that and I plan to have a similar soak at least once a week from now on. I believe even a footbath works for this, for those who are shower-only types!

[Kendrew in reply to HeronNS]

Epsom salts definitely helped me too. Need to soak for at least 15mins though.

[Hollybee21 in reply to Kendrew]

Thanks

[HeronNS in reply to Kendrew]

Yes, fifteen minutes. 🛀 I tend to take a small section of the newspaper in with me to make a lengthy wallow more tolerable. My current bathtub is very uncomfortable, which is why I'm out of the habit of taking long baths.

[Kendrew in reply to HeronNS]

Mine too. Unfortunately I can no longer say it's because I'm boney!!😂 Too much padding now!! I have a neck pad with suckers that attach it to the bath. Keeps my neck and head comfy.....and a good magazine to pass the time away quicker.

[Hollybee21 in reply to HeronNS]

Thank you.

[jimcarlow75 in reply to PMRpro]

I agree, this is happening to me. Difference is I was "cured " for about 14 years before it returned. No mistaking what was going on tho

when it happened. Different set of medics also changes things. Fortunately I am left alone to manage

With regular blood tests etc. Jim..

[Gary1310]

Understand Potassium is good for leg cramps. I have a banana everyday and take a Potassium supplement. No problem with cramps.

[Hollybee21 in reply to Gary1310]

Tks will try, not a lover of bananas, but anything to get rid of the aching.

[PMRpro Ambassador in reply to Hollybee21]

There are a lot of things with as much or more potassium (and fewer carbs) than a banana!

webmd.com/diet/foods-rich-i...

And most potassium rish foods are also magnesium rich - and that is also anti-cramp

[Dcctrains]

Sounds like a flare. Need to see a consultant and possibly have a DEPO Medrone injection to remove the inflammation.

[Hollybee21 in reply to Dcctrains]

Thank you, will hopefully speak to my Doctor in the next few days.