Advice Please.

[Attic]

Hi everyone. I have just been diagnosed with my second bout of PMR after having Shingles. I had been Pred free for two years after having PMR for seven years.

I have been on Pred now 15mg a day for 5 days and feel incredibly agitated and tearful. I can't remember what I was like at this stage last time and wonder if this is normal.

I can't get a blood test until next week to confirm diagnosis and am tempted to ask the Doctor to stop the Tablets until then, though I must admit PMR symptoms are much improved.

What do other members think please, I also feel very lonely and sad and am suffering from Insomnia. Otherwise I am ok, ha ha.

Thank you, Jenny

[Elispeth]

Hi Jenny. I am unable to offer any medication advice but I am sure that the wise ones on this forum will be along in a little while to help you with that.I just wanted to say that I am so sorry to hear that the PMR has reappeared for you after contracting shingles. You must be so disappointed, its no wonder that you are feeling tearful. I would be too as I am in my sixth year now myself and hoping that it will go away and leave me soon.

I'm not sure if PMR is any different second time around. I do hope that it will be kinder to you this time. There is an enormous amount of support for us on this site so remember that you are never alone ever!

Try and keep your chin up as best that you can. Sending a virtual hug to you 🤗 💐

[Attic in reply to Elispeth]

Thank you so much Elispeth, it is so nice when people understand. X

[Koalajane]

I would say your blood test next week will be unlikely to confirm diagnosis as if the pred is working it will have an effect on the inflammation levels

[Attic in reply to Koalajane]

That is what I thought Koalajane x

[DorsetLady PMRGCAuk volunteer]

Well if symptoms are improved by steroids, maybe you do have it again, and some do think a vaccine has triggered their resurgence of PMR - and many say a second bout of the disease is not the same as the first.

Unfortunately Pred can make you agitated, and insomnia is always a side effect…but you find that both settle as your body becomes accustomed to the drug.

What symptoms did you have to lead your doctor to this diagnosis? …

Think you need to discuss the situation with your doctor, and as you’ve only been on Pred for 5 days, it is quite safe to stop….but if it is PMR then you will need to take it.

[Attic in reply to DorsetLady]

Thank you DorsetLady. The symptoms I had were so similar to the first time. Bilateral Hip, Shoulder and Neck pain and stiffness. Also extreme fatigue. They have almost disappeared after 3 days on Pred, but now I am stuck with this awful anxiety and agitation.I just wish I could have got the blood test before I went on Pred but they couldn't fit me in.

The symptoms started after a bout of Shingles x

[DorsetLady PMRGCAuk volunteer in reply to Attic]

Can understand that…but it does sound very much PMR ish…. And you can get help on the anxiety front.

[Attic in reply to DorsetLady]

Here the minefield begins. I just hope it doesn't last 7 years again x

[DorsetLady PMRGCAuk volunteer in reply to Attic]

Too true🤔

[Bluey-1]

I feel for you as I’ve suffered from insomnia and anxiety on pred. I have GCA and it was horrendous on the high doses. It’s so isolating with emotions all over the show. I feel for you. Speak to your doctor. Eventually I succumbed to a course of anti depressants. Anxiety is better managed and sleep is improving. Still the odd rogue night, followed by a couple of days of grimness but more good days than bad. I can look back over the last eight months and feel the improvements. A good diet, a short walk out in the morning winter sun if you can, try and get the sleep sorted and things will improve. Look after yourself. So sorry that you’re on this roller coaster again.

[Attic in reply to Bluey-1]

Thank you Bluey-1. The Dr is ringing me on Fri so I will have a good chat to her. x

[piglette]

You are not really gaining anything by stopping the pred. The real test are you feeling improved. You do have classic side effects of steroids. You may find changing your diet for an ultra healthy low carb one might help.

[Attic in reply to piglette]

Thank you piglette, the diet is worth investigating . My symptoms have certainly improved on the Pred x

[AuthorJ in reply to Attic]

best of luck to you. I am so sorry to hear that PMR has reared its ugly head again! My prayers are with you and all who have this nasty PMR. Good luck with doctor today

[agingfeminist]

Dear Jenny...how crushing to find yourself back with PMR. The side effects of the steroids you describe will decrease...and so hopefully will your dose of steroids. You have battled this wretched disease before and came through it...you can do it again...and it might be a much shorter journey this time (hopefully). But clearly we have twitchy immune systems (for some reason) that can tip into overdrive. I find it surprising that the immune system ever gets back to normal functioning. I am only 3 years in and feeling thoroughly fed up ...I can only begin to imagine how you must be feeling. But things will improve and you will cope, just like you did before.

[PMRpro Ambassador]

Even if your blood markers are raised now - they may well not be after 2 weeks on pred! They aren't conclusive in the diagnosis though in any case.

Everyone I know who has had PMR more than once has said their various episodes were totally different.

I was watching a GP TV programme the the other day, the GP wanted an immediate blood test - he got the stuff and did it himself! There is NO excuse for not taking blood at the time when it is required.

[Ridge]

Oh that so awful. I’m so sorry.

I had awful feelings of doom, agitation, tearfulness and insomnia on 5mg of Pred, my initial dose! That was 4 years ago and those feelings returned every time the dose was increased. Without detail I have had to be on higher doses and each time I have that reaction. I have found lots of walking if you can, listening to stories (Audible) while you try to sleep and just telling yourself that this is temporary helps a bit.

Unbelievably I have a friend who loves her steroids! She says she has so much energy. I guess everyone is different.

Also I think the return of PMR after shingles must show how PMR is an autoimmune reaction.

I think your BT after being on steroids will not be reliable. The experts will say. My Rheumatologist says he diagnoses on symptoms once steroids have been started and the body has responded.

[Viv54]

I feel for you , i have been on Pred for 4 Years !! half way through tapering i got terrible a anxious feeling , i was jumpy nervous and terribly tearful, This was day and night.I was lucky if i got 2 hours sleep at night. I eventually gave in and went back to my Dr, she was great and told me not to panic as this can be very common, she put me on a low dose of Valium for 3 weeks ,until my body got used to tapering . I was much better and it passed off as i tapered down. Dont suffer go and talk to your GP, best of luck Viv .

[Wizards]

Hi AtticI found when 1st on prednisone I was very depressed and had bouts of tears. This dissipated as I reduced.

I do know symptoms can be different 2nd time around.

Take care.

[Sharitone]

Bad luck. For your insomnia, don't be afraid to let your GP prescribe you sleeping tablets. It made a huge difference to me, and I was able to get off them as the pred dose came down, till by the time I was on about 5mg, I no longer needed them.