sleepless nights

[Suffolkpolly]

Hello🙋‍♀️. This is my first posting. Can I say how very informative I think this site is and I do hope someone can help me with my problem of not sleeping well at night…. I have had PMR for 5 years through this journey I’ve been prescribed Pred/MTX/& now anti-inflammatories. I am not on any medication only the anti-inflammatory twice a day. I can cope with minor discomfort during the day,the worst discomfort is at night with the pain which is severe in my upper arms wakes me up 3 to 4 times and the only thing that seems to bring any relief is getting up and walking about! My rheumatologist has requested, I continue anti-inflammatories, and start physio again, (which last time only aggravated the problem… ) does anyone else have this problem?🤔

[piglette]

What are the anti inflammatories for? The only anti inflammatory that really works for PMR is steroids.

[PMRpro Ambassador]

Hi and welcome.

If that arm pain is due to PMR - antiinflammatories will do zilch. And as you have already found, physio is likely to make it worse. At what point with pred withdrawal did the pain return? Sounds like your rheumiy is in the cloud cuckoo land of "PMR lasts 2 years",

Have you discussed this in depth with your GP? Which hospital are you under?

[Suffolkpolly in reply to PMRpro]

Thank you so much. This does make sense….I was on Pred and MKT at same time (as the MKT was to help me come off the Pred..as struggling to come off it…he did suggest at one point the only thing for me was methotrexate if the anti-inflammatories didn’t work.. but I had a phone call from the nurse who then said Dr advice is to keep on the anti-inflammatories and book Physio ..I’m at West Suffolk Hospital. Thank you so much for your help🙋‍♀️

[PMRpro Ambassador in reply to Suffolkpolly]

How low had you got without MTX?

[Suffolkpolly in reply to PMRpro]

2mg

[PMRpro Ambassador in reply to Suffolkpolly]

Take a deep breath PMRpro. Don't say it ...

Only a very silly doctor would consider that MTX would be preferable to 2mg of pred longer term. Professor Dasgupta who was at Southend (and a world authority in the field) told us in a seminar that he often kept patients at 2-3mg long term because it reduced the risk of relapses. Your arm pain is almost certainly due to a low level of disease activity of the PMR, Antiinflammatories will NOT deal with it and in the longer term are more of a risk overall than 2mg of pred. I have taking 1 dose of ibuprofen a day and my pain clinic doctor is concerned about that!

MTX isn't a magic bullet for PMR - if it were they would use it for PMR from the start and they don't. It does work brilliantly for a very small cohort of patients - but they are usually stuck at nearer 10mg per day. Any patient down to that low a dose does NOT need MTX.

[Suffolkpolly in reply to PMRpro]

Bless you and thank you so much for your very detailed reply. I really appreciate it. I must admit I felt at my best when I was on prednisolone and could do my jobs my garden which I love ….at the moment I’m not any good at anything and it really does get me down. Forward then now is to make an appointment with my GP and go back onto low dose of Pred.. … thank you once again..🙋‍♀️🙋‍♀️

[PMRpro Ambassador in reply to Suffolkpolly]

You may need to treat it as a flare - start with maybe 7mg pred for a couple of weeks and if that works I would drop to 3mg to see if that is still enough.

All a rheumy can do is provide guidance to ensure the best quality of life while the underlying autoimmune cause of the PMR symptoms chugs along and eventually burns out. Nothing cures PMR, nothing gets you off pred but time unless they are in a position to put you on tocilizumab and they aren't in the UK and are unlikely to ever be, I'm on tocilizumab and it has worked well for me - but I was stuck at nearly 20mg, not 2mg, If I had been under 5mg, nothing would have persuaded me to take on another drug just to get me off pred. That rheumy has scored a resounding fail!!!

[Deyazlex in reply to PMRpro]

That is why, from reading comments about Rheumatologists, I cancelled my first every appointment after 7 yrs on pred (doses now 4mg and under) and managing ok with all the help from this site. Best ever thing that I came across it 😉

[PMRpro Ambassador in reply to Deyazlex]

Yes - but sometimes you need the rheumy to get the wherewithal in the first place!!!!!

[Deyazlex in reply to PMRpro]

Thank you, I understand that but seeing I was never offered one in the first place and only after 5 yrs upon my request, being inquisitive, did I get a ‘satisfactory’ dexa scan, I feel maybe I’m one of the more fortunate ones so don’t want to rock the boat so to speak. But thank you so much for your reply

[ImC_]

2mg was doing really well! I hope you get your comfort and well-being back on track now, Suffolkpolly.

[Suffolkpolly in reply to ImC_]

🤞thank you I’ll let you know how it goes🙋‍♀️

[ImC_]

do.

[Louisa1840]

I was put onto Amytriptyline to help with sleeping and also pain. I went off it for a time recently and couldn't sleep at all so, quickly, went back onto it again. It works for me but we are all different.

[MarkWin]

I am so sorry you seem to have been given the run-around. It does sound as though you are on completely the wrong drug and provided with dreadful advice - but notes above are so very helpful. Yes, sleepless nights are very difficult. Presently a GCA sufferer since 2017 and still on 20mg MTX weekly, and back on 2mg PRED daily which is where I shall probably stay. This does not help sleep which is disrupted, rarely sound, and leaves me tired in the mornings and lethargic generally. Fortunately(?) work and I parted ways when I was 58, and whilst I volunteer locally a couple of days a week when up to it, find that weakness and general lethargy prevent going back to work which I have found deeply depressing. Family are very good at supporting me but this is management long term and I am now just trying to live with it. I wish you well in search for proper help, and a bit more relaxation - garden and nature reserves are best!

[Suffolkpolly in reply to MarkWin]

🙋‍♀️Hello there and thank you for taking the trouble to reply. I was so sorry to read that you are unable to work due to your condition, it certainly does change your life, …but such a great thing to do volunteering so you can go as and when you feel able to and a great way of keeping in touch with the outside world!I’m sure they really appreciate whatever you can do.

I’m sure a lot of people will feel better after this recent heatwave. It really does sap your energy….As regards my treatment, I am on the case as they say!So hopefully in the not too distant future, some pain-free nights!And you’re so right, what would we do without this great website and support of family!..I wish you well👍😊