hi there.
I’ve had PMR for a year now.
I’m reducing pred (currently on 7 mg) and started on methotrexate 6 months ago.
I’m still experiencing huge fatigue.
I’m 59 and am now considering ill health retirement.
Has anyone else done this? What was your experience?
Thanks.
hi
Have a look at this for starters -
healthunlocked.com/pmrgcauk....
Sure others will be along with their stories…
The trouble is you have just hit the dose of pred when the adrenal glands are being asked to start working again and they often object. I was able to work from home which made life a lot easier. An option is to take early retirement. What sort of pension do you have? A defined benefit or a defined contribution? Do you want to take it out now? You can from the age of 55 but of course you get a smaller pot. Your private pension can vary from company to company.
From a state pension point of view you will not get that until you reach state pension age, you will have to claim state benefits. Your employer has a legal duty to make reasonable adjustments to help you stay in work, and if those aren't enough, they must follow a capability or performance procedure. It is really up to you how you feel and what you want to do.
GCA at 54 in 2017. Went on long term sick leave but handed in my notice within a year of diagnosis. By the time I got to the adrenal insufficiency stage I knew I had made the right decision. Since then covid and low adrenal function for another 18 months after stopping Pred in 2020 has made work a no hoper. My story might be a bit negative but I also have a problem of every three weeks my Neutrophil count drops. I’ve had it all my life but with illness and ageing each three weeks has me thanking my lucky stars I don’t have to go to work. It sent me on a journey of discovering who I was without being in a uniformed role which formed my identity and being the general domestic super woman.
I developed PMR at a very early stage just before I retired. I've had it now for nearly 6 years. Thankfully there are new things that now fill my days but I still miss the job I did. I also know that it would be impossible for me to do it now not only because of my age but also lack of energy and physical ability due to the condition. My suggestion to anyone thinking of retirement is to plan what you want to do. Make sure you have time to do things you enjoy. Don't be drawn into what others think you should be doing just because they think you now have lots of time on your hands. Keep as active as you possibly can and socialise in your own way that suits you.
I was diagnosed with PMR early February 2022. After struggling with fatigue dreadfully , and being signed off sick, I made the decision to retire. I was a very active music teacher in a large primary school . I applied for medical retirement through Teachers Pensions but didn't get it , as I will recover eventually , that's what guidelines say, hence could still work . My school bursar said to get medical retirement when teaching, you have to be at deaths door ! I took retirement anyway , as financially could afford to do so . It was the right decision. I spent 6 months or so , doing very little, convalescing, and my health improved. I'm still on steroids , still have to pace , but volunteer which helps fill the gap left by work .
as I will recover eventually , that's what guidelines say, They do, do they? I wish!
Well, at least that will preserve your 'pot' for the future!
as I will recover eventually , that's what guidelines say, They do, do they? I wish!
For the vast majority of patients- yes they do recover.. very unlucky if you happen to be one who doesn’t
☹️
I know I'm in Canada so procedures are different but I too left the job early.I applied to my long term sick benefits as well as our Federal Disability Benefits.
I was denied many times my work benefits to find out the majority of insurance companies will deny in hopes you go away thus they save money. I hired a lawyer who works mainly for insurance companies but luckily not mine. We sued and came to a settlement as well all my benefits till age 65.
As for our Canadian Disability which is hard to get however in my past life in assisting clients I knew how to write my submission to the medical report. You have to prove you can't do any job. I have since shared my summation to other pmr suffers.
The easiest job in Canada would be a Walmart greeter and I said as sufferer you don't know minute to minute if your exhaustion hits and you need an hour or 2. Or you get up and your not moving. Both senerios your either at work or need to go. What employer wants you constantly calling in sick or taking 2 hr breaks. I think you get the jist.
I got this pension while fighting my insurance company so they then had no leg to stand on.
Best thing I did. I so enjoyed my early retirement and it allowed me to rest when needed.
I personally know someone in England who receives a disability pension and believe me we're more disabled. She was still working ax well she was given a car etc. I went wow.
Good luck. I think from all comments it was the best thing we did.
She was still working ax well she was given a car etc. I went wow.
Yes but although PMR/GCA may be very debilitating whilst you have it, it is not a permanent state (for most people) -so different rules apply,
If someone is awarded a motor vehicle it’s usually for a permanent mobility reason -are you sure she didn’t have other issues? Although sometimes these things happen -and you think - really!
She was born with a disability however it didn't stop her from working as a kindergarten teacher.As I said, I was dumbfounded, your social assistance is unbelievable.
With her disability here with her working she'd get nothing let alone a car.
Nobody is just given a car. Those on certain benefits e.g. higher rate Mobility DLA etc. can exchange most or all of their benefit to lease a car from Motability. Most cars also have an upfront payment as well. Having used the scheme myself twice in the past it annoys me that people think I didn't pay for the car!!!
Honestly, I swear this is what she and her husband told us. I just confirmed with my husband. He said not only was she given a car as well as gas and maintenance. Trust me I was floored being a Social Worker.
Maintenance is included in the lease, but you certainly have to pay for your own fuel..There is also an annual mileage limitation..I think.some people resent disabled people getting anything and don't think we should have any help!! If they would like to swap their fitness for our (not) Free cars I'd be first in line.
I definitely don't resent disabled people when especially since I was VP of the Ontario Disabled Board.I think it's unjust and a big waste of money giving a person a car who is obviously able to work and was working. This is not fair to the person working beside them not getting these benefits.
As I said this was a best friend of our friend who all stayed with us for almost a week.
This person yes had a slight disability but was able to walk with us and the disability was in her foot.
Anyway it got my curiosity up especially when we're all talking about disability benefits due to pmr.
The criteria to qualify for mobility allowance seems to have changed considerably since I was granted it nearly thirty years ago. I had a home visit from a doctor and a report from my surgeon. My GP had encouraged me to claim although I sat on the forms for months as I didn't want to 'give in'. It helped me to carry on working for a while longer. Nowadays, people seem to receive it when their mobility is far less restricted than previous requirements.
Well, as I said it is a wonderful benefit that we don't have which is wonderful if not abused, like everything else.
I very reluctantly gave up work 3 1/2 years early, when an attempt at a phased return failed, after a fortunate lockdown that gave a short respite! It was a wrench, but no choice really. If you do, you may need to take extra care of your mental health. As Jigsawlass says, volunteering (within your energy limits!) can be very helpful.
A warning about benefits - unless you qualify for PIP, you will need to have very little income or capital to be eligible - Less than £16k capital to get anything at all, and less than £6k to get full entitlement. These figures haven't increased for years.
Good luck with your decision!
Looking at current situation, things certainly aren’t going to get any better either.. 😠
Diagnosed with GCA in October last year, came on in late July. My work was hard and heavy, and required a certain level of fitness, gave up work in mid November, it just killed me.
Not old enough to retire, but the government put me on what they call jobseeker, but the Dr writes out sick notes that then puts me on the sick list and I don't have to look for work!
The hard part is I used to be able to do nearly anything, now I don't have the patience to concentrate on anything hard, heavy or technical past 15 minutes. I have become a shaky mess with any stress, and the fatigue and weakness must be acknowledged or else! Tapering down with pred at the moment also does not help!
Giving up work was challenge, but one has to know their limits, if I was to return to anything I don't know how I would handle any situation now, when I am a mess it could take 2 days to calm down, quicker If I take a CBD oil, but cannot drive for 24 hours after, it clears the mind and helps with sleep too!
It's your decision, but one has to look at yourself, and your health before anything else. I feel I made the right decision, as I don't know when the light at the end of the tunnel will be turned on?
I do want to work, and I do miss my work, but at the moment, I do know my limits, and sometimes I cannot even get in my car, or off the couch😴!
Good luck.
Hello ngchgc - Scrolling through this morning I happened to read your post and wondered what level of Pred you are on and whether it is currently enough to manage your GCA . My major symptom before diagnosis was extreme fatigue which had hit me like a wall out of the blue. Until I had been on 60mg for a couple of weeks I could hardly walk more than a few yards then overnight was full of energy. When I had a blip tapering Pred too fast from 30 to 20mg(consultants plan) I was again hit with fatigue and weakness as you describe. I now taper very slowly and recently getting down to 10mg found I was quite tired on 10.5 so stayed on that for a couple of days longer. Just a thought as I haven’t had any of the headaches or joint pains usually associated with GCA so fatigue is my main indicator. Strangely I read other people who find that it is the Pred that causes their fatigue where for me it gives me my energy back. Such a strange and unpredictable illness. Sorry it cost you your job but I’m sure you made the right decision. We all need the best quality of life we can get. I hope thing improve for you soon.
Hi Obscureclouds. At present I am on 11 mg in the morning and 7 mg at night. Three months to get to this level. Rheumy says no inflammatory blood markers and now he agrees with me for a slow taper"at last!" My blood guy says all good there as well but GCA is still lurking in your system, Pred only masks the problem! On 60 mg I never felt well, and with what I have now been to see the the Ophthalmologist and Hepatologist it seems I have severe problems with Pred and he suggests seeing my Rheumy and changing to something else. Blood tests every month still, 8 vials drawn this month, 6 for the Liver Dr now..
I am up at 5 every morning, and by 7am I need a sleep 30 to 60 minutes, and all good, try to do any work around the house and I become a mess within 15 minutes, severe shaking, anxiety, etc, pulse rate resting 110, Afternoon naps are a necessary too, when the fatigue hits, you have to obey. Tried to alter my night time dose timing so I can sleep through, but only rarely I can sleep through the night. If truly desperate I take the CBD oil, now advised I cannot drive for 48 hours after so I have to plan ahead. but I am only just over halfway through a 50 mg bottle since mid December. It's good to control the shaking and anxiety too, and any pain, about 60 minutes to take affect.
Since the start of tapering, pains in neck and shoulders have returned, minor, and intermittent leg and arm pains. Different style of headache than ever before. I do exercises in a heated pool 30 to 45 minutes, but cannot do them for even 10 minutes without water assistance. Walking 20 to 30 minutes then a good rest is needed as the shaking and anxiety returns until bedtime. I have accepted what I can, and cannot do now, sometimes!
Before diagnosis, jaw pain, calf pain that would radiate up into my buttocks, and forearm pain, the more I did the worse it became. the closer I got to my Appointment with the Rheumy shoulder and neck pain occurred. As he said, what is it like going from 65 to 95 overnight? Yes too true.
On 60 mg it took 2 months to be fairly pain free and walk normally again,. From start of August to October for confirmation of GCA , 3 months of what has happened to me?
And as I said to the Hepatologist this week am I allergic to Pred? I have most of the side effects now associated with it. Fatty liver now! More tests! Pred causes fat from the body to go to the liver!
Rheumy wants me at 5 mg total for the day, when I get there, along with Actemra fortnightly.
At present dropping 1 mg every 2 weeks from day and night time doses..
Good luck with your journey.
Oh I’m sorry to hear you have been suffering such a lot of negative side effects to Pred. So far it really has been a wonder drug for me and gave back the energy this illness stole from me so I was able to get back to walking 3-5 miles a day and 4 Aqua classes a week. I started Pred last July but only take it at breakfast. I’m now on 10mg with a new tapering plan of 1 mg every two months from now on so we’ll see how it goes. I do now get a bit more sleep though I don’t have as much energy as when on the higher doses but am fortunate to have an acceptable level of fitness to still enjoy my normal range of actives (albeit at a slower rate) . Good luck with the tapering and I do hope you will soon find what works best for you
" My blood guy says all good there as well but GCA is still lurking in your system, Pred only masks the problem!
Partially correct.. GCA is still there, we mention that all the time on here - and Pred doesn’t so much mask the problem as it only controls the inflammation caused by the underlying disease. It does not cure the GCA. That’s all any medication can do.
With all your issues, I would say you may well have more than GCA going on -and although you don’t tolerate Pred well, it really is the only drug that will help your disease -and personally I think you have reduced it too quickly.
Sorry to say you seem to be between a rock and a hard place.
I haven't time to elaborate just now - but I suspect that while you have been unlucky, you are the same as many many others at high doses. You have GCA - it is a serious systemic illness. I "only" had PMR and in the 5 years I had it without pred, I developed many things that are normally blamed on pred when it couldn't possibly have been pred. GCA/PMR itself causes all sorts of things that the doctors haven't cottoned on to.
And as DL says - pred isn't "just masking", any more than taking painkillers masks that you have a serious painful break or other condition while it is healing. I do wish they would stop saying that.
Thanks PMRpro.
It's like I have had conjunctivitis for 3 months, seen my Dr and he told me to see an optometrist, who said Pred causes dry eyes, and to use a lube eye gel, well that did not work and I got on the waiting list "one month" to see the Ophthalmologist and that was 2 weeks ago, and she said pred hides the pus that one would normally see when you have conjunctivitis! Now on antibiotic drops for 14 days, 12 days in and waiting for the drops to work? Now next week to make another appointment with her.
It's like in December, mouth ulcers galore, have not had them for years, January, mouth Thrush, then candida twice downstairs in February! Advised all from Pred! I have a strong suspicion next they will advise I have candida in my eyes from pred!!
What a journey. And what next? Oh yeah, one more specialist to see end of June! The neuropathologist about the shaking, pins and needles and numbness and constant feeling cold, "yep just went through summer here, I am cold and my wife is sweating and going crook that I am closing windows and wearing a hoodie." And I seem to know the answer the neuropathologist will give me, starts with P.
Sorry for the rant, but it gets it off my chest! I would love to go cold turkey from pred and see what happens, but the risk is too high!
If the above are side effects of GCA, or pred, I truly hope nothing else!
Thanks PMR and Dorset lady
All from Pred!
Well as I said previously, partially correct, any drug that suppresses your immune system would leave you more at risk of all the things you mention. In our case it’s Pred. Whilst it’s doing what it should be doing for your GCA unfortunately it is also suppressing your natural immune system from fighting minor infections etc.
As you say, annoying and frustrating as it is, a few bouts of thrush etc is better than permanent sight loss, all a matter of perspective .😊
Hello again. I can hear your frustration so hopefully writing it all down has helped you in some way. I can also see why you think it may all be down to Pred if you have medics around you suggesting this as an easy option for the cause. I have a consultant who wants me to take MTX so tried saying one of my symptoms was down Pred til I pointed out I’d had the same for about 20 years. My Doctors are proving to have more rounded & joined up thinking. I now have symptoms of Peripheral Neuropathy but am told this could be as a result of my vasculitis, Pred, or the antibiotics I’ve taken over recent months ( or none of these) in the first instance I’ve been given a course of iron pills as although with range my ferritin stores are at the lower end (B12good) I wonder I had your GP they might have just said it was due to Pred. As far as GCA/LVV goes, as well as the extreme fatigue, prior to taking Pred (and when I reacted to going from 30 to 20mg) my symptoms included temperature surges, idle heart rate going over 120, and blurry/dry eyes which led to me having a PET scan for suspected vasculitis as these were also consistent with an autoimmune illness I had the previous year. Whilst in hospital for that I was also told of some fat around my liver which could be down to my illness but more likely age related as it is common but people don’t know they have it unless tested for something else. Hopefully it won’t prove more serious in your case. I hope you can begin to feel a bit more relaxed about Pred as that may be adding to your anxiety. Unfortunately Actemra can also give you similar side effects including the mouth ulcers. As Dorset lady says it’s far better to cope with some side effects of Pred than to lose your sight or to live in hell as I did in 2023 whilst in hospital when for over 5 weeks they tried to work out what was wrong with me before my body gave up and they gave me IV Pred. Best wishes
Thanks Obscureclouds,
When I talk to my GP he says you are under the care of the specialists now and to refer all to them! As I don't see them often it's hard to get a full message across in the time allowed, and now the rheumy says, "something else must be wrong with you" and I will refer you to these specialists for further testing and they say Pred, well one more to see and see what he says. What strikes me is that I thought reducing would lessen the effects I am having. With my last phone call to my Rheumy, he told me I would be on a final dose of 5 mg for 2 to 4 years? Hopefully I don't have side affects at that level for that length of time.
Reading on this site gives more and more info on others like yourself that have the same problems. I am not used to having 5 months of being sick!! And this morning again woke up at 2 am with my GCA headache from hell. Lovely!
Many thanks
Sorry to hear that so far I’ve been spared the headaches. I was so fit and healthy until my autoimmune system got a mind of its own. It’s such a bizarre illness it’s hard to know what causes a certain symptom as it differs so much from person to person. Because so many people say Pred affects their ability to sleep I’ve automatically decided this to be so in my case. But replying to you earlier I realised when I became ill in 2023 I hardly slept for over 6 weeks and when I did it was never for more than 2 hours at a time. The first time I had a nights sleep was when they gave me the Pred so who knows? perhaps it’s another autoimmune thing? Dr said neuropathy may be the result of vasculitis affecting the amount of oxygen getting to my nerve endings at some point. Which does sound plausible but it could also be a side effect of Pred or something else. What I do know about Pred is that it has given me thin skin which tears and bleeds easily. Yes I think we all live with the hope that any side effects will disappear or at least reduce as we get to a lower dose . Unfortunately it seems I still won’t be able to eat liquorice as an occasional treat though 🤪 Good luck
Hi,
I am from the US and am wondering what PMR is??? Is it a form of arthritis? Is the normal treatment Prednisone?
I love this site...I cannot find a good support site in the US!
PMR _ Polymyalgia Rheumatica… not It’s not arthritis…
See this from the charity..but would ask if you don’t have it or GCA - Giant Cell Arteritis - why are you on this particular forum? Nothing much in your profile to indicate what you do have… although you are very welcome of course 😊
pmrgca.org.uk/information-a...
Just came up as a suggestion. I actually was looking for women's health topics. I didn't mean to be nosy.
No, no problem at all.. just hope you never get it..😊
Gastroscopy , follow up to post about enteric Pred.
feeling really vulnerable and so fed up
What to do about work
Back up to 40 mg pred
Timing of split doses- early morning waking up