I'm 13 months in. 3.5 mg prednisone daily. pain level about 3/10 today. Extreme bouts of sadness. personal relationships are suffering (I'm not me anymore). My shoulders and knees hurt constantly. Energy is low. work is suffering (teacher)
if you have recovered from this awful disease, will you please respond with how long it took. did your energy return. did your muscle tone return, did your overall wellness return.
I need to hear some success stories please.
There are not that many here who are off pred altogether - purely because they are OFF pred and away living their normal lives. There are a few, jinasc and DorsetLady amongst them and they have been off pred for years, staying to help others with their experience - but both had GCA, I know several who had PMR and have been off pred for several years but they aren't on this forum.
I would suspect that you are at slightly too low a dose for YOUR PMR - but there is also almost certainly an element of adrenal insufficiency there too. That is the dleicate balance, enough pred solves both, more pred makes it slower to regain adrenal function.
You WILL get through it, you will learn to cope better and adapt. 12 months is - I'm sorry to say - early days and there is no way of knowing when it will end. But it almost certainly will - a few of us have a long term form but we are a small minority overall, though probably over represented here.
That is comforting to know... I live in Florida. And this group is the only help and truth that i can find. I read this forum daily and empathize with everyone. I think i need to ask for an adrenal test . do you know what i would be asking for? I see my rheumatologist tomorrow.
You could just ask for a basal cortisol test- a cortisol level measured on a sample taken in the morning after not taking pred in the previous 24 hours (i.e. without taking that day's dose). That gives an indication - under 100, adrenal insufficiency, over 450 normal. Inbetween can give a bit of a clue: the higher it is the more likely the adrenals are recovering. Then theycan get more info using what is called a synacthen test - how the adrenals respond to an injection of synthetic ACTH which should stimulate the adrenals to secrete cortisol.
You are at a reasonable dose to do the synacthen test - but it isn't that reliable even at that dose. The lower the better because recent studies have claimed that even 2mg is the level of the equivalent to the corticosteroid required by the body. Everyone is different - a fact that too many doctors do not bear in mind.
Also my Rheu. is baffled by my swollen knees. it is where my severest pain hits. Any idea why? zero pain in hips, moderate pain in shoulders.
Sorry - forgot the knees. Others have had knee problems but I honestly don't know.
My main problems related to my knees. They were very stiff and it was hard to bend them and this made it very difficult to get up or sit down. The stiffness and soreness in my upper body came later but were never as debilitating as those in my knees and lower legs. I was pretty much housebound for three months before I started the Prednisolone.
And.. Advil and wine help huge with the pain. That seems to contradict what everyone says, even my doctor.
Which pain? My best part of the day in the 5 years I had PMR without pred was the evening after a glass of wine with dinner! Definitely a link for vasculitis - it acts as a vasodilator!
Ibuprofen/Advil is an antiinflammatory and will improve very mild inflammation
Hi, I'm 6 months since diagnosis and am also a teacher. I have reduced my hours as the fatigue is too much atm. I also had a few sessions of counselling which were really helpful, maybe consider some ?
Be kind to yourself and hang on in there x
Yes there is a light at the end of the tunnel.
As PMRpro has said there are a few of us around to tell the tale….I, like jinasc andSnazzyD had cranial GCA, not PMR, and even though the beginning of that disease maybe be difficult and in some cases more dramatic, I personally think the recovery can be easier than for PMR. Whether that is because of the very high doses at outset or less areas of the body affected I’m not sure.
The feelings of sadness (for the loss of your original life) is the same, as it is for any chronic illness.
Your life has been turned upside down, you aren’t YOU any more, you aren’t in control, and you probably don’t know anybody else personally with PMR. Your friends, family and work colleagues don’t understand your illness, and maybe aren’t as compassionate as if you had a broken leg or something more serious like cancer. It can be very lonely initially -that’s why we are here to help you, we do understand.
I would say you have reduced quite quickly, which maybe is not helping your illness nor your overall state of wellbeing. You need to be on the right dose for your illness to be properly controlled, and that is more difficult if you are in a full time, stressful occupation.
Things will, and do get better- believe me.
As said, I had GCA, had already lost sight in one eye when started on 80mg Pred, if I can survive it (including the loss in my beloved hubby of 46 years during the second year of treatment), then anyone can…..and now 6 years after my illness went into remission (and following three joint replacements due to osteoarthritis- not connected to GCA) my life is good, very good…
…energy returned, muscle tone returned, overall wellness returned.
🌸
Thank you so much... I needed that .
poor you. Have you tried pain killers for your knees. If they work it probably is nothing to do with the PMR, if the painkillers don’t work it may be worth upping your dose a bit.
Hi, I was on prednisalone for 3 years for PMR and have now been off it since February this year and definitely feel a lot better. I’m still working on building my muscle tone back and do get a bit tired sometimes but nothing like it was before, there is light at the end of the tunnel, good luck
Hi, I’m about 21 months since diagnosis and starting on 25mg pred a day (two years since symptoms appeared - I thought it was just stiffness from lack of exercise so took up Pilates, Callanetics etc before eventually seeing GP!).
I’m now on 1.5mg with 20mg methotrexate weekly after two flares around the 5mg level. My rheumatologist wasn’t keen on me flaring again (although it was only evident in bloods, I had no symptoms).
It’s only looking back that I understand things better, I got very little information about what to expect (maybe doctors don’t want to scare you / worry you, as we are all different and experience it in different ways?). I’ve suffered bouts of exhaustion and depression at different stages, as well as the more commonly known side effects of moon face, sweats, and putting on weight.
My personal and social life has been hugely affected (at least I’m retired so don’t have work to contend with). For the first year I had drenching sweats - like I’d walked out of the shower - several times each day / night. I had to sit in a beach towel to protect furniture at home, and would only go to the homes of friends who understood. Restaurants etc were a no-no, and of course I wasn’t getting sleep at night.
It put a huge strain on my relationship with my partner as I was so miserable all the time and unable to do everyday things. Most days I needed at least one nap if not 2 or 3.
But it’s much easier now, as I’ve come down the taper I’m gradually feeling more normal (whatever that is!). I think I had a bit of low mood / depression as a result of adrenal insufficiency but it’s only in retrospect that I can see that - I just thought at the time I’d got depressed about everything - and it passed after a few weeks. Psychologically I’m in a much better place than even 3 months ago.
I really do sympathise with you, but you will get there. Getting to 3.5mg in 13 months is quick - it took me about 17 months albeit with two flares.
I’m managing to increase my daily exercise, the sweating has pretty much stopped, I’ve lost a few kg (few more to go!), I can go to social things and participate (but if I get carried away and do too much I suffer the next day - you have to learn to pace yourself and say no).
As for other / new aches and pains, get them investigated. Twice I thought the PMR was resurging but scans / X-rays showed something else entirely that was able to be treated with physio and other medications.
I can see the light at the end of the tunnel but I’m taking it very carefully as I don’t want to travel this road again.
Hope this helps, all the best to you x
I am on the other side of PMR. With the exception of a flare during covid my PMR is in remission. I had it for a bit over 3 years. I am surprised that your rheumatologist is "baffled" by your knee problem. Has she done an xray or blood tests to look for reason? Since you're a teacher, I'm sure you're on your feet all day. And the floor is probably concrete. Not the easiest thing for knees. Pred can hide/mask other conditions like arthritis. That is what may be going on with your knees.
Hi what did you take to replace prednisone or just help you to get off of it?
After 2 1/2 years, I'm down to 3mg, with the help of Actemra. And finally, finally, the deathly fatigue is slightly better. But I have been reducing slowly for the last bit, by 1/8mg at a time. Personally, I think that if you are managing to teach with PMR, then you are doing wonderfully well.
There is a light at the end of the tunnel! Yeeh!
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