Hi - this forum has been recommended as a good source of help & support...
I was diagnosed with PMR in March this year having been diagnosed with Fibromyalgia in 2008. I relate more to the fibro symptoms than PMR although prednislone has helped with my hip pain. Is it possible to have both?
Also, I am having real issues with the prednislone... when I was 1st diagnosed I was on 20mg and my rheumatologist quickly reduced me by 2,5 mg a time to 10 mg by August but all my symptoms came back although initially the results were excellent. He then put me back up to 20 mg for 6 weeks but I am now having an awful time - for the last 3 weeks I have had no more than 2 hours sleep a night, I can't keep still, my mind is racing and I feel like I am going mad. My GP has given me some diazepam to try and calm me down & I am seeing my rheumatologist tomorrow but I am very scared and in a bad place.
I know I can't come off the steroids but wondered if anyone else has these issues and how they have coped. I've reduced to 17.5 mg but have no relief.
In addition, my eyesight has become very blurry which I am also told is a side effect...
Any suggestions are welcome
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Nonemmett
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Hi Nonemmet, welcome to this forum. I have found it very informative and supporting. I have the same double diagnosis as you, Fibromyalgia ( probably for a few years) and Polymyalgia Rheumatica diagnosed in March of this year. I am grateful for the PMR diagnosis because prior to that I thought I was dying of something dreadful and had endless tests and a couple of hospital admissions. I was hardly able to walk when PMR came on quite suddenly on a long haul flight, I thought it was a severe vomiting virus ( embarrassing on a plane). I was given 20 mgs of Prednisalone and got the miracle effect, it blitzed everything in its path, including Fibro symptoms and low level depression. I will be forever grateful for the blissful 6 weeks that followed. Of course I then began to get the side effects, insomnia, anxiety, stomach problems, hypertension, weight gain, puffy face, sugar cravings the lot. With the help of knowledgeable people on this site and people who are just kind, I am getting through. I have been gradually reducing my Prednisalone dose and am now on 10 mgs with some hairy moments on the way. Already I'm sleeping better but 10 mgs of amitriptyline helped an hour before bed time when sleep totally evaded me. Weight is coming off, my face looks normal, I take 25 mg of Atenolol for slightly raised blood pressure. I refused medication for the prevention of Osteoporosis because my bone scan was normal and the side effects are grim. I got a horrible spell of painful eye strain which has now passed.
It sounds like you reduced Prednisalone really quickly, maybe it didn't have a chance to do its work and now your body is confused?
This will be stressing you out, as will the fear ( we all share) of Prednisalone. PMR loves stress, really feeds off it in a dramatic way. Gentle exercise is helpful, like walking or aqua aerobics. A good diet, pacing yourself, having rest days, avoiding stressful situations if you can. Now is the time to cherish yourself, as you have probably been putting yourself last forever. Go well and let us know how you are getting on. In some ways PMR is more comprehensible than Fibro a clearer foe to do battle with. It's a life changer but that is not always a bad thing.
Thank you for your words. I was on amitriptyline for the fibromyalgia but my rheumatologist has taken me off that - the sleep wasn't too bad whilst I was on that - I am tempted to ask if I can go back on it just to get some sleep!
I have ben signed off this week and I am trying to rest and be kind to myself but think I will relax more after I have seen Prof Axford tomorrow morning. I know he wants to put me on methotrexate but I am resisting this as my brother is on it and it doesn't sound very pleasant.
I will let you know how I get on - thank you again
It is possible to have both yes - but any pain that the pred helped with will be PMR rather than fibromyalgia, it doesn't respond to pred. Those who have both say they know which is which.
Did your rheumatologist stop the amytriptyline cold turkey - i.e. suddenly - or did he let you wean off it slowly? If you stop it suddenly then there are a lot of withdrawal symptoms associated with that so slow weaning is advised. There are others on this forum who are on it because it helps them sleep or they also have fibro.
If the rheumatologist reduced you from 20 to 10mg as quickly as that no wonder you had a return of symptoms - few people would cope with that speed of reduction after more than a couple of months on pred. I know it says it in the BSR guidelines - but on the forums we speak from bitter personal experience!
If it really is PMR then methotrexate alone won't help - it may help you get to a lower dose of pred as it MAY potentiate the effect of a dose of pred so you get more bang for your buck - but there is no guarantee of that and it usually takes a few months to work at all. On the other hand, PMR and LORA can present almost identically and methotrexate would be the first line approach in LORA.
You CAN come off pred , I managed PMR for 5 years without it, it wasn't out of choice and it wasn't a pleasant experience, but for many people it is a possibility. On the other hand - you can manage the pred side effects as your GP has already done with some medication - but I suspect the amitryptyline would achieve more than the diazepam because the lack of sleep will be causing a lot of the problem.
At what stage of the reduction did it all go pear-shaped? Were you still OK at 15mg? 12.5mg? You might do better on whatever dose you did get down to rather than the 20mg and splitting the dose - some people have found doing that reduced the side effects of the pred.
Out of interest - are you seeing the professor on the NHS or privately?
Dear PMRPro - thank you. I am seeing Prof Axford privately but I get the impression that he just wants me to reduce as quickly as possible. He reduced me really quickly as he says he wants me off all meds within 15 - 18 months but I have been struggling for so long that it seems impossible.
I started on 20mg and the pain disappeared after a couple of days and I felt amazing - people couldn't believe the difference in me both at work and personally. I even had some energy and pred seemed a miracle drug. We then dropped to 17.5, 15, 12,5 and 10 within a couple of months. I started feeling bad again at 15 but assumed that this was normal so kept up with the decrease in dosage until I finally cracked and told him I couldn't cope & my husband described how bad I was to Prof Axford. Now when I have dropped to 17.5 the pain in my hips has returned after a week.
the insomnia and anxiety came on very suddenly 3 weeks ago and I finally got sent home from work last week after my manager became really worried about my mood and my conversations not making sense. Luckily I got an emergency appointment with my GP who listened, gave me diazepam to get me through to Tuesday and assured me I was not going mad!
Prof Axford took me off amitriptyline about 3 months ago - he told me to just stop taking it but I weaned myself off over about 3-4 weeks as I didn't think cold turkey was the best idea - I'd been on it for years because of the fibro diagnosis.
I am disappointed that I have been signed off work as I feel I have given into it - I've been struggling for so many years and always dragged myself into work but I am just not functioning at the moment - I know it is lack of sleep that it making everything worse. I am lucky that I have such a supportive husband who helps me even though he doesn't understand - he thinks I have a low pain threshold...
I am nervous of the methotrexate because of the side effects - I have a phobia of being sick & that is the main side effect from what I can see although at the moment, that side effect seems better than how I am feeling at the moment.
I must just be honest with Prof Axford instead of putting on the brave face that I am used to putting on - I am not very good at asking for help but I am desperate...
As others have said your cocktail of drugs and your fast reductions of Pred and amitriptyline plus the introduction of diazepam has done you no favours.
I found early days my head was like yours - plus couldn't sleep. To help the sleeplessness I took a Nytol every 4th or 5th night, not enough to get reliant on them but enough to break the pattern. My husband, who used to get a bad head some says used to say - it (his head) was going round like a heap of maggots - not a particularly nice phrase but I knew exactly what he meant!
The hyper activity should reduce as time goes on and your body gets acclimatised to the Pred, but it can be very upsetting and frightening at the time. If you can walk or do some gentle exercise like yoga or Pilates that may help.
Pred can also affect your eyes, but that also will get better in time. Unfortunately Pred is the only drug that will help, but it is mighty powerful and some people get worse side effects than others.
Do hope that these replies and your Rheumy can help allay some if your fears.
I went to see a rheumatologist privately when first diagnosed with PMR. He just seemed mad keen for me to get to below 10mg as quickly as possible. I also felt I was being treated as a cash cow! In fact the fast reduction caused all sorts of problems and pain, he wanted me to start reducing when my CRP was still in the 50s and ESR in the 90s. He seemed most annoyed that the pred had not reduced it faster. My first side effects were the hot sweats and insomnia. Happy days.
My GP said at least he was free. I made the mistake of saying that as a taxpayer I was contributing to the one hundred billion plus that helps pay his salary!
I saw Prof Axford this morning and he has decided to drop my pred by 2.5mgevery 3 days so that in 6 days I will have reduced from 17.5 mg a day to 10 mg a day. This seems very rapid & scary to me. I didn't cope on 10 mg before but he says the pyshcological side effects are worse than me suffering with pmr.
He has also put me back onto amitriptyline which he took me off in Sept!!
In addition he has prescribed etoricoxib - 60 mg a day.
He seemed surprised I had been signed off work...
Feel very scared & confused... Any advice appreciated
He has given you etorcoxib when you are on fairly high doses of pred (though, to be fair, not for much longer with that reduction)? NSAIDs are contraindicated with steroids - each can cause gastric irritation, both together makes it even more likely.
Are you sure he thinks it is PMR? NSAIDs rarely have a good effect in PMR - for most people they do nothing. It will work if you have something called ankylosing spondylitis which can present in a very similar way to PMR as can LORA (late onset RA). Better management of the pred would make more sense with regard to the psychological effects.
Do be careful with the pred and the NSAID - he did tell you to take a PPI as well I hope? If not - take it with a meal, in the middle to sandwich the tablets. You can get ranitidine/Zantac OTC which will also help (different side effects to a PPI but does the same).
IF the etorcoxib works well - then the PMR may be a bit of red herring. But I don't like the way he is experimenting - I wouldn't play the game I don't think.
I take 40mg of esapromole twice a day for severe reflux so should be OK with the NSAID but am going to get a 2nd opinion.
I know there's not an easy answer but I do feel let down by him & lack confidence in his answer today. He reckons I will be feeling fine by Monday & will be back at work. The way I feel today I doubt it!
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