This is my first post, having followed the group since end of May when I was diagnosed with PMR by GP. Really need some advice please. In brief my story is as follows: I’m a 51 lady, v busy life with 2 children and work part time. GP started me on 20mg Pred at end of May following diagnosis of PMR. After 12 days I had had absolutely no relief of pain and symptoms but had suffered terrible side effects: 24 hour pounding heart (incl all night), really bad insomnia, anxiety, tearfulness all the time and basically feeling I was going out of my mind! V v unlike my normal personality and have never felt so awful. Went back to GP who took me off Pred (slowly) and ref me to Rheumy Consultant over the summer. He was v thorough, did every test possible (CT and MRI, chest and pelvic x Rays, full blood tests etc). Apart from the high inflammation markers, everything came back normal. No sign of RA. Cons said he thought I def did have PMR but was atypical and some people need higher initial dose of Pred for it to work. I said couldn’t face trying Pred again due to side effects and was there alternative? He then put me on 10mg daily of Leflunomide which he said some patients respond well to. Idea being it suppresses the immune system so that it stops attacking the body. He said it takes 6 weeks to see if it’s worked. 6 weeks up tomorrow; no relief at all from pain/stiffness which have actually got worse. I’m v crippled at mo and been in constant pain since May. At wits end! Can only think I have to give Pred another go but at higher dose. So my question is.. did anyone else suffer from the same immediate awful side effects I did when taking Pred (anxiety/pounding heart/going mad!)... and is there any other type of meds I could ask for to help combat these effects: insomnia pills/anti depressants??? I’ve read some of you also take amytryptyline, but not sure what that’s for?? I need to do something to relieve pain as can’t carry on my life as it is at mo. Very grateful to anyone who has read through all of this and could offer a glimmer of hope! Thank you!
Newcomer: advice needed on Pred: This is my first... - PMRGCAuk
Newcomer: advice needed on Pred
Hi,
Sorry to hear about your issues.
I know it’s probably not the answer you want, but really Pred is the only thing that is going to help your PMR.
20mg should have reduced your pain, but as you say you are a v.busy lady, that may be where some of your problem lies - you tried to carry on with life as normal. Unfortunately you can’t - the Pred is only addressing the inflammation caused by the PMR, not the illness itself. You need to learn to pace yourself, and get rest - not easy I know, but essential for your wellbeing.
As for your side effects, all quite normal I’m afraid, the heart pounding and feeling mad will diminish as your body gets used to the drug, and as you reduce. Speak to your GP about the anxiety - and get some help, whether therapy or medication or both. Other who have been through will advise idc.
Amitriptyline - Uses. This medication is used to treat mental/mood problems such as depression. It may help improve mood and feelings of well-being, relieve anxiety and tension, help you sleep better, and increase your energy level. This medication belongs to a class of medications called tricyclic antidepressants.
Thank you so much for taking the time to reply. I have been following all the tips on this forum since May, and found it all so helpful. Thanks for the advice on Amytryptyline, it does sound like that might be the one to try. Thank you
Oh goodness, what a trial you’ve got. I know what it’s like to be caught up in this with parenthood, job etc, it happened to me aged 54 with GCA and out of the blue I found myself on high dose Pred. The symptoms you describe all sound very normal with some people suffering more than others. The body does become accustomed after a few weeks but nevertheless it can need some changes. Amytripyline can be used to aid sleep and indeed some on this forum have reported good results. Some people also need to have medication to help with the Pred induced mental effects. Some also need a bit more Pred to get hold of their internal inflammation caused their immune system attacking its own body. The drugs that are sometimes used with Pred are usually used as well as to reduce the Pred dose needed with varying success.
Others will reply so sit tight. However, I will ask how much you’ve read about the disease itself to understand it and also have you made any changes to your life or tried to carry on as normal? It is well worth getting the very helpful book by Kate Gilbert called Polymyalgia Rheumatica and GCA: A survival guide 2nd edition.
Thank you also for your reply. I have been reading loads about PMR and following this forum so am getting more knowledgeable by the day! I will def ask the GP re amytryptyline. Can you advise a bit more on what other meds people have used for the Pred induced mental side effects? Unfortunately there isn’t much I can do to reduce my ‘Mummy’ commitments in life with two girls at different schools miles away, hours in the car on school runs etc, dog, work, running house/garden etc with no other help at home. I just have to carry on as best I can. Will be easier if I can be a bit pain-free!
I had/have the same list with husband working long hours; you have my heart felt sympathy . The best thing is to talk to your doc about the meds available. Many of us who do it all think that nothing can be dropped and there are no options. People like us don’t tend to like asking for help either. Ask yourself, if I broke my leg and couldn’t do anything, what would happen? It could happen and is worth planning for anyway. I dare say, something would have to be cobbled together involving others you probably wouldn’t approach in normal circumstances. Apply it to now because this is equally urgent for which there is no quick fix from a bottle and it’ll go on for a while. I would also think very carefully about getting into a car day in day out, because all these meds can affect cognitive functioning and reaction times and fatigue is a big feature of this condition. I know this isn’t what you want to hear, but I know that crisis can come upon crisis if one just keeps one’s head down just getting through each hour day after day because we say to ourselves that we have no choice because the decisions are too much to countenance. Our bodies have a habit of making that choice for us. It will get better.
As far as I know leflunomide doesn't work on its own initially although for some people it does lead to being able to reduce the pred dose, some DO get off pred though but in others once they stop the leflunomide it is all back to the beginning. It has some unpleasant longer term effects that may mean stopping it anyway. The nastier sides of pred do usually improve with time but you do need enough to get the pain under control otherwise there is no point taking it
Other than that - Snazzy has said everything I would say. You CANNOT take pred to manage PMR and still expect to carry on day-to-day living as before and get a good result. Those who insist on that almost always need more pred - but that is after the initial inflammation has been brought under control by either a higher dose or much longer and behaving as a poorly person or, more romantically perhaps, a Precious Princess. Not that there is anything romantic about PMR!!!!
I had 5 years in the state you are in at the beginning - no pred, wasn't diagnosed. I couldn't do any of the things you are doing except drive. I went to the gym and did an aquafit class in the warm pool which then let me manage a Pilates or an Iyengha yoga class, all of which kept me upright and fairly mobile but never out of pain. Nothing managed that except the 15mg pred I took in 6 hours - BUT I went home and sat down at the computer. I gave up most housework at the start of PMR and I still can't do it even on the right dose of pred for me to be near enough pain-free.
You don't say how old the children are - but the family must give a hand I fear. It won't hurt them, and you must think about having some sick leave from the job. If you must continue with the part time job then you have to look at ways to minimise the other things to be able to manage. I continued working (I was your age when it all started) but I worked freelance from home with no meeting-type commitments and could choose my hours. The girls were late teens and for the one at school it was walking distance. It very much depends what your work is is but some jobs are less reconcilable with PMR than others. It is, however, subject to disability legislation in terms of adjustments at work.
This
uspharmacist.com/article/sy...
may be of interest to you and your doctors. You have no choice really in terms of the PMR, except possibly tocilizumab but you will have to "fail" other medications first and the NHS is unlikely to give in easily, if at all, it is very expensive (£12K per year). But maybe the mental health effects can be managed.
Hi, so sorry that you are going through this. SnazzyD is right that having PMR is similar to life after breaking a leg. My DH is physically handicapped, so when I did break my leg suddenly things I had thought were so important to get done weren't anymore! When I was diagnosed with PMR, that same mindset set in. But I have become more able.
Pred did not give me the same side effects that you had, so I hope you get relief.
I trust that your doctor explained that untreated PMR can bring on GCA.
I wish you well.
Hi Andypan I’m so sorry you’re suffering so much . Everyone has given you good advice . I just wanted to add that when I started on 15 mg prednisone it didn’t give me much relief from pain and I ended up having to take 30 mg , which had me bouncing off the walls ! I couldn’t sleep and my GP put me on a short course of Zopiclone sleeping tablets whilst I was on such a high dose . My mental state was pretty awful but I feel the pain from PMR was worse ........
Thank you so much Katie.., wow it sounds like you’ve gone through exactly what I did and had the same reaction to Pred as I did. The pain from PMR has now definitely reached a tipping point for me, so I’m going back to see the GP on Monday to ask to restart Pred at the higher dose of 30mg which I’m dreading.... but anything to get rid of the pain. I will ask him for amytryptyline or zopiclone to help with the insomnia... how long did you take Zop and did your mental state/insomnia get better at some stage on the 30g?? Mine was terrible at 20g so am v nervous. Would be interesting to know how you managed and how long it took for you to feel more ‘normal’ mentally, if that makes sense! Thank you so much for taking the time to tell me, it makes me feel I’m not alone
I will reply in a private message .
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