I have been having my worst flare ever in the 10 plus years of PMR. I have increased pred to 22.5 from 11 mgs and it is still not yet fully under control. I wish I had increased my dose more quickly but I had no idea it was this bad. I don't usually have blood tests for CRP but this week it was 43 and that was after increasing my dose. Never been that high before.
Looking back, I have had an awful year and it is hard to tell what has caused what. For well over 18 months , I have been suffering with worsening insomnia. I was on Amitriptyline for 8 years to help me sleep as the Pred. seemed to affect it. That had stopped helping so I came off it and seemed to suffer horrendous withdrawals. I am now reassessing that and realising that it wasn't withdrawals as those symptoms have returned, over 4 months later. Those symptoms are: feeling very ill, emotional, very swollen feet and ankles, severe nausea, insomnia, back and shoulder pain and itching all over.
I have seen a number of consultants- foot specialist who has diagnosed arthritis in my foot and a bulging L4/L5 disc, all of which stops me from walking; ENT specialist because post-covid my eustachean tubes are blocked and have led to hearing loss. I have spoken to Dr. Hughes ( Rheumy) on the phone who insists I have developed Fibro, mostly based on my sleep difficulties , but I don't think I have.
Finally, I referred myself to a sleep clinic (as my GP refused to) and was diagnosed with moderate sleep apnoea in August. I went on a CPAP machine but over the weeks, my insomnia got a lot worse to the point where I was hardly getting any sleep at all. So now, I am seeing a consultant for sleep re- training ( CBT for insomnia), I have have been doing this for 3 weeks now and the treatment is brutal! I am not allowed to go to bed until 2am and have to jump out of bed at 7am. No caffeine, no napping etc etc. I am glad to say that, although I am incredibly sleepy most of the day, I am now able to get off to sleep quite easily and am hopeful that this treatment will work and in a few weeks' time, I will be able to have a full night's sleep and even a more normal life.🤞🤞
I think the flare has happened because of the stress of all this, especially chronic lack of sleep? I could have done without it though!
To anyone who is really suffering with insomnia, there is hope out there!
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suzy1959
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All that lot would poke my PMR into life very successfully!
I struggled to sleep with PMR - so why say it must be fibro because you can't sleep? If my PMR is under control I sleep - and I have to say, since being on Actemra/tocilizumab I am sleeping better than for years!
Who - me? I'm not Heather. Not two drugs, the brand name and substance name for one. The drug that is so good for GCA - in that it isn't a cure for PMR/GCA it is a steroid sparer - it deals with the inflammation by stopping it forming.
Sorry Eileen, just doing some ironing and realised I was talking with you and not Heather (Kendrew) Okay, that's answered my question thanks. Wondering why I wasn't offered that instead of Methotrexate.
It is only approved by the NHS for repeated relapses of GCA and even then only for 1 year.
Morning Suzy, you poor, poor thing. Sleep deprevation is the worst. I think as we age we all suffer sleep issues one way or another. Pred are awful for eluding sleep. I struggle to get off most nights (even from being completely exhausted during the day) Sometimes I don't drop off until 2 or 4am in the morning. This certainly does impact on our health. I have suffered Eustachian Tube Dysfunction for almost forty years. Blocked ears are so miserable. The amount of time and money I've spent over the years getting my ENT consultant to microsuction my left ear has been a lot. Pred I thank, as for the past three years of taking it my ears have been perfect. Wondering, if ever I do manage to get off Pred whether the ear issue will return. I do suffer slight allergies and take an antihistamine every day. Try taking one to see if it eleviates your blocked ears. Try gently squeezing your nostrils together and blowing, that sometimes pops the tubes open. My friend has fibromyalgia. Her pain puts her in bed for several days during the month. Ankles very swollen and so are her hands....sadly, Pred doesn't help fibro, only painkillers.
I've had to increase back to 6mg this morning. I've been good on 5mg for weeks, but recently been suffering knnes and hips pain. So I thought try going up by 1mg and see what happens. If that doesn't help maybe it's the Osteoarthritis...hard to diferentiate between to two.....fingers are really painful and exercise them all the time. Recent X-ray taken in Sept by rheumy said I have extensive OA in hands and feet. Feet not an issue, even my Achilles Tendonitis seems to have got better. CRP had risen slightly from 4 to 6, but ESR has remained at 2. Like you've said, it's better to increase Pred sooner rather than later so it doesn't take hold, like it seems to have done with you. Google Fibro and read what it says, you can then compare.
As you've been taking Pred for 10yrs, were you ever offered a drug to help you get off them. I have, but really don't want to have to take it. How's your HbA1c ? Mine is slightly elevated due to the pred but I'm working on that. Current weight this morning is 9st 8lbs. Heaviest I got was 10st when I first started on Pred in Nov 2019.....do miss my choccy though !!
Thank you for your response. Yes, I have tried out all the DMARDS going with no effect on my PMR at all ☹️. I have also been taking anti histamines quite a lot because of all over itching but they didn't help the ears. I'm sorry you have had such longstanding ear trouble- hoping mine can be resolved! As to your last question, HBA1c has been slowly climbing but GP is happy to leave for now. I am hoping that when I start feeling better and getting enough sleep it might improve.
"HBA1c has been slowly climbing but GP is happy to leave for now"
Easier to deal with it sooner rather than later. Have you cut your carb intake drastically? Especially processed carbs and added sugar. It has a dual effect, helps avoid pred-related weight gain and also the development of pred-related diabetes. You can't alter the effect of pred triggering release of glucose from body stores but you can influence the dietary contribution. Quite a few on the forum have reversed both trends.
Antihistimines will not help with congestion. They will help with itching and things like runny noses. They do make antihistamines with decongestants. However. They are usually 12 hour preparations. You can discuss with your consultant about preparations such as pseudoephedrine. There are others put
Others have commented on your sleep disorder. It’s the flare that gets me. Could it possibly be non cranial GCA? Some of what you describe rings bells. It doesn’t present with the symptoms we are all alert for ( headaches, jaw claudication eyesight changes etc). It just made me feel so ill, I was diagnosed by a specialist ultrasound scan. It hit me after 4 years of PMR and the feeling that I was getting better. The symptoms were non specific but the debility was profound. Just a thought and easy to miss. Sarah Mackie went that extra mile and found the signs in my armpit after further investigation. Wishing you well, I have always followed your progress as a contemporary.
hi Sheffieldjane did your headache come from the back of your head at the base of the neck also where your bloods high , what area did they do the ultrasound on ?
most of my head pain comes from the occipital area but I am fairly sure that it is wear and tear type pain ( confirmed by a highly recommended Osteopath ) but it is a GCA area. The headaches associated with non cranial GCA were more like a woolly head, dull and cap-like. The ultrasound scan was on my head and neck thankfully incorporating my armpits ( the site of the abnormal cells) I also had a full body MRI scan but nothing showed up. My blood tests did not correspond with the new disease because I was taking Pred. I think. Symptoms rule for my Rheumatologist and me.
Hi Ann, my symptoms were vague and unpleasant constitutional symptoms, like flu. The pains were mild but PMR-like and I did have dull headaches , all the time and of course the fatigue. It was as if I was recovering from PMR and then my symptoms suddenly got worse. I hope I am remembering correctly. I think I am on the mend. The Australian property I stayed in was about 100 yards from where the river joined the sea. The view and the air quality did me so much good - not to mention the cuddles from everyone. I hope that you two are doing well. Xx
Sounds wonderful, just being by water always relaxes me….I’m only 20 miles from the sea and 20 mins from the broads, maybe that’s why, on a really bad day I ask to go by water….
I could have written portions of your email. I’ve had PMR for 8+ years and am in the throes of a debilitating flare. After years of trying to reduce the prednisolone dose I had finally got it to 5mg about two months ago. My hair stopped falling out, my weight started dropping, even some cheek bones were trying to emerge from that rounded face. Then I fell on tarmac and cracked a rib. I’ve sure that is what triggered the flare. It’s been a crippling three weeks. I increased the pred to 15mg but only feel the effect about four hours after taking them. One day I took 20mg - but I really can’t stand the thought of coming down again to painfully slowly. So I’ve kept it at 15mg and am going to plod on and hope the flare will wear off. Meanwhile, it’s a very depressing and deflating situation. 9.15am and about to accept it’s time to leave my bed.
Peculiarly and out of the blue, in July I had a painful foot diagnosed with acute arthritis from which I’ve never previously suffered. And been told my L4 and 5 have bulged and I need a back operation. I can sleep, but not without help from amitriptyline and zopiclone.
I sympathise with you, identify and constantly wonder why a more effective treatment can’t be discovered.
Mad isn't it that more research hasn't been done on both PMR/GCA. It would probably pay to do so as Pred causes so many more health issues that costs the NHS more in the long run. Diabetes, Cataracts, high Blood Pressure, to name but a few. Fortunately, not everyone gets these but I'm betting a lot do. Also fractures.
"and constantly wonder why a more effective treatment can’t be discovered."
Because it costs a lot of money to actively seek a drug - and it is helpful to know the real cause. The biologic tocilizumab/Actemra interferes in the production of the inflammation and works 100% for half of patients and reduces the pred dose for the rest. It doesn't cure it though - and costs £12K per year at present so isn't economic. It will be cheaper eventually - Humira has fallen from a similar price to well under £1,000 per year in the space of 20 years.
I spent six months last year on the tocilizumab injection. I live in Africa where it cost more than US$1000 a dose…to no avail. Huge disappointment.
Perhaps one of my worst Pred side effects is the sweating. October is known as suicide month here because of the heat and my head drips as I melt away. A draining, in every way, side effect.
Were you not able to reduce pred at all? Then it obviously is a less common form of PMR that doesn't involve IL-6 which is the usual cause of the inflammation. What else have your doctors considered? LORA (late or elderly onset RA)is one possibility.
Hi just saying hello and wishing you the best of luck with the sleep therapy.
From my experience It’s definitely worth trying to try and stick with the sleep therapy. I followed a online sleep course (accessed via a long covid clinic) a while ago and while it felt brutal at times I’m now sleeping more deeply and for longer than I have for ages.
Did you find a solution to the all over itching? I have had PMR for six years and have just started with this problem. I have ruled out obvious suspects as change in detergent,body lotion etc.
Hi, I have been experiencing extreme itching as well. I had it on high prednisone dosage, then it went away until I reached about 5 mg a day . Now I’m down to 3 mg a day and the itching is driving me crazy it’s so intense. I too am wondering if anyone else experiences this , if it’s an allergic reaction and what they are doing about it?
I have been experiencing very itchy spots around my ankles for about two weeks, that become reddened and sore. As though a mozzy bite but none around. I’m reducing from 7.5mg to 7mg.,
OMG What a time you’ve been having! Personally I’m interested about your blocked Eustachian tube since covid!! I’ve seen 2 specialists and they can’t seem to find a solution. They say go on with facial and ear massages and the balloon blowing by your nose!! (So attractive!! ) They used to do a grommet thing.. making a hole in the ear drum but don’t do that any more.
hi. I understand completely. Mine just spontaneously happened. Like I was landing in a plane all the time. It just won’t stay open. I had the grommet inserted but it didn’t help, and although it was supposed to fall out naturally it still sits there. So now I am the crazy lady with cotton wool in her ear. It seems to even out the pressure. I have even sourced flesh coloured cotton wool! It really hurts if I leave it out. I have nightmares off being incapacitated and no one knows I need the cotton in my ear!
I had major problem sleeping and my Rheume put me on low dose of Amitriptline (10 mg) to take 2.5 hrs before going to bed. Is working a treat and better able to manage the fays after a good nights sleep.
Like the other DMARDs it works for a small cohort of patients. The trouble is, there is no way to identify them in advance and it takes up to 6 months with some of them to see an effect. So if you try them in the wrong order - could be at least a year before you find the right one!!!
I agree with Jane, May want to investigate GCA. It can affect your ears too. My GCA came after 6 years of PMR and presented as general symptoms. Achy, flu like, hoarseness, butt kicking fatigue. Inflammatory markers were high despite on Pred for PMR. High dose Pred sorted it, then later TCZ which eventually allowed me to come off the Pred. I get earaches when it’s acting up.
So sorry to hear all this Suzy and like Jane I consider you a contemporary as we started at a similar time. I,like you, found it very hard to go down from 10/11 mg and like you I have Rod Hughes as my Consultant.
I wonder if it would be better to pay for a private consultation with him. I started off this way, can’t remember if you did too, and then I went to see him on the NHS. I just thought then he would be able to see you and give you more time rather than a quick email.
Glad that the sleep therapy is actually working. I remember being in a very stressful job and for nearly a year I had very little sleep and felt dreadful. I resigned as a result of that but it took a while for the sleep pattern to resume. It is absolutely awful not being able to sleep and I’m sure that the stress of all this has affected your PMR.
My heart goes out to you, I know how you are feeling, I too have had a very bad two years from a flood to living in a building site both inside and out. I got rid of the builders was ripped off by two other contractors and my grandson took over and sorted things out.I was treated like a foolish old old woman and it broke me. I am now so ill I am barely coping, I too am in a bad flare which I had put down to doing too much . My CPR was 30 , two weeks ago it was 54 . My Doctor put my Pred up to 20mgs for 5days then 19mgs i am having more extensive blood tests tomorrow. I did not think I was having a flare I thought it was down to over doing things. At the moment I have a pelvic floor prolapse and sciatica down both legs an outie haemorrhoid and depression.
Sometimes things just pile up on us and seem to never get better. You have been through the mill and unfortunately, PMR thrives on this stuff, just when we need it to be quiet! You are getting there and you are coping. We just have to have faith that things can only get better!
Having upped my dose to 22.5, my CRP went from 43 down to 28 quite quickly, so I feel I'm on the right track. However, the increased steroids have mucked up my sleep re-training and I went back to the dreadful nights with next to no sleep. Catch 22!! I took a sleeping pill last night and got over 7 hours sleep! I have a consultation with my sleep specialist today so we'll see what's next.
Was going to ask how you are getting on with sleep? I tried the 'brutal regime' of staying up very late, 4am and forcing myself to get out of bed at 7am but it didn't work. I only gave it a week, maybe I need to give it another try for a bit longer. 4am seems to be the witching hour - either I haven't yet got to sleep by then or if I have I wake up about then. I'm very tired at the moment, I think a bit of a flare and fatigue after a holiday and strangely I have been falling asleep around 1 or 2 am and then waking at 4am. So I've got into the habit of taking my Pred around 4am which seems to help and then I go back to sleep, I don't set the alarm and wake between 8 and 9 am, which is giving me about 5-6 hours sleep which is a great improvement, or was until the holiday. I can usually tell the difference between fatigue and tiredness but I think the two are jumbled together at the moment. I have a CPAP sleep apnea machine machine and have been using it for about 7 years now I think. Everytime the Sleep service do a review I tell them I'm still fatigued and tired all the time but they just make a note and are not interested - 'not my circus not my monkey' as the saying goes. The CPAP machine does help a lot though, if I don't use it I wake up constantly. I also wake up if I turn on to my back or left hand side during the night which of course you do but again no one is interested in why. I'll give the regime another try. Amytriptalline didn't help, 1 tablet was not enough and 2 too strong and I was constipated all the time. I'm doing all the sleep hygiene things like no computer screens in the evening, no caffeine after 5am. But I don't think the latter is a problem as sometimes I have a cup of tea if I can't sleep around 3 or 4 am and it sends me off to sleep! There's something about 4am and it's a very inconvenient time to be awake!
My regime began with a 2am bedtime and up at 6:30,and did work, but now nothing is working again!! I have resorted to Zolpidem for the moment as I was so sleep deprived that I felt like s*** all day every day. 9 weeks of hell trying to stay awake all day when I kept dozing off, trying to find something to do late night that wasn’t using a device or TV which kept me awake and then having a very short time in bed during which I had to get up for 30 mins every time I couldn’t get to sleep.
I have become like a crazy person, obsessed with sleep and lack of it!
I have an appointment with my consultant on Friday to find a way forward and then I thought I would write another post.
I hope you are getting some help on the sleep front Suzy. It is torture. I resorted to a course of anti depressants, Mirtazapine, which has helped a lot. It has lessened my anxiety and I have been able to get off to sleep easily following a wind down meditation on the Headspace app. I can go 6 days living a steady life which is a massive improvement but tend to have the rogue bad night that causes a two day downer before I pick up again, such as today. I am very fatigued after poor sleep last night. I am finding my change of lifestyle hard with GCA, the difficulty planning things, pacing and then the disappointment when you can’t do half of what you used to do. I can manage half a day of activity on a good day - seeing friends, short walk. Keeping one’s chin up is a challenge even though I do appreciate those good days. I am taking things very easy to avoid a flare but it’s hard sometimes. I am only eight months in which is depressing when I read of all the stories on this site. People have suffered for much longer than I have and I can’t imagine how they are coping. Acceptance for me is difficult even though I try to focus on what I can rather than all the things I used to do that I can’t. Daren’t go down the rabbit hole of what if I can never have the life I used to have…my current goal is to aim for half that life for now.
I am glad to hear that you have found a way through that works for you. I have been told repeatedly that the odd bad night is perfectly normal and to be expected so not to worry about it. I try not to but in the context of a maximum of 5 hours' sleep a night, any less does upset me!
I am mostly getting just over 5 hours now which is an improvement, but my sleep is so fragile that I am not able to increase my sleep "window" yet. Thus, I cannot go to bed until 12:30 and have to get up at 6:45. I can't wait to get more time in bed, especially as I am so sleepy all day and have to fight napping as it undermines my night time sleep.
I have recently been able to re-start the CPAP but only for about an hour a night so far as any more can undermine my sleep like it did in the beginning.
For me, what has made the most difference is the behavioural changes and what seems to have made the most difference for you is the cognitive changes.However, you are right that a lot of this is about acceptance and patience and I do think that meditation can help a lot with that. We do have to accept that our body is not under our control much and will do what it feels it has to - all we can do is go along with it and not fight it!
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Mini flares PMR
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