Update and advice needed please

[Buenavista]

Hi All,

An update on my previous post.

My husband managed to get an appointment with a new rhumey after he had a massive attack of PMR. She was very young, but excepted that he was right to go up on pred before seeing her, as he could not move because he was in so much pain.

He started the pred,

May 1st - 40mg (because he needed help doing everything)

May 15th - 35mg

May 30th - 30mg

June 15th - 25mg

He will be going down on 1st July to 22.5mg (the new rhumey suggested this)

July 16th - 20mg

Then he will come down very slowly until he can get back to 5mg of pred, like before. His last rhumey said he was happy for him to stay on 5mg, as 5mg of pred wasn't going to do him any harm.

The new rhumey, when we asked her, 'what happens if the pain comes back while he's reducing the pred'. She said, if the pain comes back, it's not PMR. Is that true? He is still getting pains in his upper arms, but he did take a fall and jarred his wrists and upper arms trying to save himself. He is still getting pains that come and go in these areas.

Also, can anyone help him with the sleep deprivation that he has suffered for such a long period of time, because he has been in so much pain? He can't concentrate, he keeps forgetting things (brain fog) and he keeps waking up after only sleeping for a couple of hours and then can't get back to sleep. It's such a vicious cycle, he's not copping with every day life very well.

Kind regards,

Buenavista

[SheffieldJane]

If the pain comes back whilst we reduce in means that we’ve reduced too far and need a higher dose of Pred to deal with the inflammation. It is then sensible to return to the dose that we were last comfy as. PMRPro says this is NOT a race to zero and she’s right. We need to listen to our bodies. At one stage 10 mgs of Amitriptyline helped me to sleep when taken one hour before bed. When it stopped working I stopped it. Eyes, closed , eye mask and an audio book are working these days. A nap after lunch is helping. When he is irritable with you, it is the Pred talking. Horrible side effect. The brain fog is also very apparent.

[piglette]

What on earth is the rheumatologist talking about, if you reduce the pred and the pain comes back it is highly likely it is PMR and you are not taking enough pred. You should be in the same position as when you started taking pred on diagnosis and the pred worked.

[PMRpro Ambassador]

"if the pain comes back, it's not PMR"

Where on earth do they get this idea from? If pain comes back it is because the current dose of pred is inadequate to manage the level of disease activity.

PMR is a chronic condition and as long s the underlying autoimmune disorder is active it requires an ongoing daily dose of pred to combat the daily shedding of inflammatory substances that cause the symptoms. The pred CURES nothing - it is a management strategy to give better quality of life until the autoimmune part of PMR burns out and goes into remission, which it does for 95% of patients but it can take anything from a year (unusual) to several years.

That is a very high dose for "just" PMR - have there been any signs it could be LVV (large vessel vascilitis) or GCA that has developed?

[borednow]

And this comment from a new young Rheumy? Heaven help us all. Maybe refer her to this website - a little redirection for her might not come amiss! Feel better soon Buenvista.

[Buenavista]

Hi All,

Thank you all for your replies to the problems my husband is going through. Much appreciated.

He's had PMR for 11 years and this is the only time he had to increase the pred to such a high dose, because it was such a bad attack. The high dose definitely started working a few hours after taking it and he knew he had a long road ahead reducing down slowly. So we know it's not a race and he listens to his body. So what we are doing is correct then? And if the pains come back, I'll take him back to what was comfortable for him, then we'll try and come down again.

So the brain fog can be put down to the side affects of pred? He is always exhausted in the afternoon because of not sleep well in the night. Because the sleep deprivation went on for many months, he is not getting quality sleep in the night and so it goes on 😭

Many thanks,

Buenavista

[PMRpro Ambassador in reply to Buenavista]

Yes, sounds about right. But I doubt you need to go VERY slowly once the symptoms are under control. The degree of symptoms and the dose required don't always match. But with this long form of PMR it become increasingly difficult to get symptoms under control and to reduce the dose again. I know - I have it too!!!

[Buenavista in reply to PMRpro]

Hi, I've been trying to get the medication suggested by CroquetGirl, unfortunately we're in the UK at the moment visiting family. So I'll see our doctor when we get back to Spain. Many thanks for all your help,

Buenavista

[CroquetGirl]

My MD prescribed 50 mg of Trazadone to help me sleep. It in an inexpensive, old school anti-depressant that is not very effective for depression. However, it is excellent as a non-addictive sleep aid and to treat certain types of pain like fibromyalgia. I don’t sleep entirely through the night, but I do get a solid, uninterrupted 6 - 7 hours. It was a game changer for me. Bonne nuit.