Journeys End

[Deneez99]

Has anyone got to the end of this PMR journey and no longer have pain or take steroids. If so how long did it take you. Please share. X

[SheffieldJane]

The thing is they leave, I mean you would wouldn’t you? The average time that PMR lasts is around 5.9 years. Doctors often say two years and some patients are fortunate enough to be over it in 2 years. It really is a fairly individual experience. So much as it would help to think of an end date goal, it would be pretty meaningless. It’s best to concentrate on keeping as fit as you can and be ready for that happy day when you become aware that something has lifted and you are feeling fairly normal.

[Bizgirl in reply to SheffieldJane]

That’s interesting. I was diagnosed about 5 1/2 years ago and recently stopped prednisone. I had a Pfizer booster shot and felt so achy, 3 weeks later, I still feel in the morning especially.

[SheffieldJane in reply to Bizgirl]

I would be so reluctant to start Pred again in your place. If these symptoms seem to be gradually worsening, you may have to face this. I hope not! In my own case, with a similar timescale, I did develop PMR’s sister disease GCA. I am glad it was picked up because of the potential implications for the eyesight. It was sliding down a snake on the snakes and ladders board though. I wonder if vaccines create stress for an already compromised immune system? A number of people have posted about developing PMR following the vaccine.

[MrsNails]

Hi - if you look in FAQ’s there are some stories that may give you some insite.

[PMRpro Ambassador]

There are a few who have got off pred who are still on the forum but most people ride off into the sunset and get on with life. I'm on another small, more private forum where I THINK I may be the only person still on pred. Two ladies have had PMR twice and after the second lot they have been pred-free for several years/

[magmapearl3]

Hi there. I still follow this forum and I am pain free, stopped Pred after 6yrs using the dead Slow & Stop method promoted on this forum. Patience was required as there was a bit of yo yo-ing in those early days. I am so grateful for all the support and advice from very knowledgeable people on here.

[pjt50]

I guess I'm in that small group who are no longer on pred but still visit the forum - although I have to admit, not quite so often. I still hang around because it's only two months since I stopped, so I realise I'm not out of the woods yet.

I was diagnosed with PMR in June 2020, started on 20mg pred & stopped in August this year. Sometimes I feel a bit of discomfort but I wouldn't really describe it as pain & it doesn't inhibit my activities in any way - so I'm hoping for the best. I still have a stock of pred just in case!

While I'm here, many thanks to all contributors for the time they devote to this site - whether it's passing on their expert knowledge or just telling their own stories. I only wish it had been around 30 years ago when my mother suffered from PMR. Back then we had little idea what we were dealing with. It really does make a huge difference.

[cycli in reply to pjt50]

Hi pjt50 glad you are in a good place with the journey. Hope like you that it has gone for you. How much of your old self is back now you are off pred. or is it too early to say?

[pjt50 in reply to cycli]

Hi cycli, thanks. I don't want to tempt fate but so far I seem to have been pretty fortunate. I had no noticeable side-effects from the pred & I would say I'm at least 90% of my old self. (We're nearly 18 months further on, of course, so who knows what my new self would have been without the PMR.)

Best of luck with your journey.

[cycli in reply to pjt50]

thanks for reply. helpful and hopeful

[FRnina]

I started with high dose of pred because I had both PMR and GCA. Reduced to zero over four years with the help of a steroid sparer (at first Methotrexate which didn't help then switched to Tocilizumab which I carried on with for 6 months after stopping pred). So now I'm just two months off Tocilizumab. So far no flare, no pain, no fatigue. This forum has been an absolute godsend in every way: support, knowledge, shared experiences and ambassadors that are just brilliant. I intend to stay checked in for a long while- not riding off into the sunset quite yet but anyway getting on with life. Because of this whole experience I have a BETTER life than previously. Why? through this forum have learned to be conscious of stress, eat in a very healthy way and keep informed. Again, a very very big thank you to forum members for getting me through.

[Sharitone in reply to FRnina]

Thanks for the encouragement, very grateful for that - I am about to switch from MTX to TCZ

[cycli in reply to FRnina]

Hi FRnina. I have both. Been on pred since June. Have you managed to get back your strength and recover from the side effects of thin bruising skin, and other effects . Just interested as it would give some hope.

[FRnina in reply to cycli]

Hi cycli: Yes I have got back my strength and the thin bruising skin is far far better. Fatigue has disappeared. I can do all pre-illness activities: walking, sawing and stacking wood, table tennis etc. I have been diagnosed with osteoporosis but this might not necessarily have been a side effect of the medication (as I understand it from PMRpro). This is well-managed with Fosomax and Vit D and calcium intake. Both my GP and Rheumie say : enjoy life! Obviously avoid falls if possible though. I'd say be hopeful but also be patient: the journey can't be hurried. I feel I was very lucky that my illness only lasted 4.5 years but am quite well aware it could return. Right now I feel full of energy and am looking forward to my 78th birthday in November.

p.s. It's useful to keep a written record to track your progress and/or setbacks. Good luck with everything!

[cycli in reply to FRnina]

appreciate the reply FRnina. That's good to know and well done. Sorry for osteop. but can be managed as you say. I don't think I can rush this try as I might want to. I have seen several posts on here with what seem miraculous recoveries and can only guess they were caught very early on in the journey with just PMR or are the type to taper without too many problems. Don't think I'm going to be one of those, but one can always hope.

[Reader7]

Three years. I'm 74 now with no pain, no prednisone.

[Truckfoot]

Might not be the journey s end ,but after two years I’m off of steroids, I take an Aleeve every few days, which my doctor feels is far better than being on the steroid . I’m still a little achy, but that could be my age 68 and not exercising enough….hope that helps

[Deneez99 in reply to Truckfoot]

Thank you Truckfoot you give me hope. I am 13 months into my journey with only one set back so far. I started at 15mg prednisone and am now down to 6mg. I also have nagging pains but like you I put it down to age (71) and my lack of exercise but my back or rather my buttocks hurt when I stand or walk. Just want to get to the end the side effects have been horrendous.....

[pball]

Off of pred. for 2.5 months after 6 years and all seems to be going well. Many bumps in the road. Feel fair, the Dr. says it make take up to a year for your body to start and so call be normal again.

[Valnvaughan]

Hi. Diagnosed with PMR in July 2015 within 3 weeks of symptoms starting. Max dose of Prednisolone was 15mg and used DSNS method to reduce, managed by GP, one or 2 flares. Osteoarthritis pain masked by Pred and needed 2 total hip replacements in 2018, whilst at 5mg of Pred. Continued to reduce very slowly. Pain reduced, mobility improved and stopped Pred Feb 2020, so nearly 5 years.Not the final story. After a fall in March 2021, broke my femur next to hip replacement and suffered heart failure due to shock. This has triggered another autoimmune disease, Sarcoidosis, affecting white blood cells. Consultant is questioning my whole PMR diagnosis and thinks it was the start of this Sarcoidosis........another no cause / no cure autoimmune disease whose treatment can include Prednisolone.

Good luck on your journey.

Valerie

[Bronni]

I am steroid free after 6yrs. However, I feel like I had milder pmr than many people on this forum and have been pretty much pain free since starting prednisone & most of the time on under 5mg. Just a few reduction induced flares and add on ‘itises’, but other than the first 6 untreated months ( dreadful!!) I’ve been ok. So there’s hope 😊

[Scotmack]

Hi Deneez99, I was diagnosed with PMR at the end of June 2021. My 88 year old sister developed PMR about 17 years ago, she had it for 5 years before it went into remission and so far it hasn't returned. Either she doesn't remember too much about it or she doesn't want to talk about it. I've tried asking her questions but now don't really bother. For her age she is generally quite healthy though does have angina. Once Covid restrictions lifted she returned to being a lady who lunches and is out and about almost daily so there is life after PMR. Her husband also had PMR, it developed a bit after hers and he had it for 10 years prior to his death by which time he'd developed dementia and was in a care home. One comment I'd make is that I felt my sister had a good GP who either knew about PMR or who learned about it as he had several patients with it (my sister lived in a village and several people developed PMR around the same time). My sister would never question a doctor's thinking so would just do as her GP ordered but fortunately the one she had at the time of her PMR guided her through it successfully.

[Shipley]

I came off Pred 2 yrs ago, after 5 years on. I've been fine since, of course I was 5 yrs older, so some aches and pains were to be expected.Sadly, in my case, due to several changes at my GP surgery, there wasn't any checkups of my progress, and finally a new GP organised tests and declared I no longer had PMR. I may have been on steroids for far longer than necessary. And I'm still coping with proximal neuropathy of the thighs, probably caused by the steroids. I'm 67 now and have had partial knee replacement since ending my PMR journey, and I feel fine now.

Hope this helps.

[prospecter7]

I went into remission after 4 1/2 years. I was about your age when PMR started. When I got down to 1 mg, I reduced by .25 to the end.

[Graememidsussex]

Hi Deneez99,I was on the pred for 3 yrs, starting in 2017 after several doctors and a large hospital could not give me a diagnosis for months , a friend , non medical, suggested my PMR, I told the doctor and the penny dropped ! I was on 35 mg to start incase of GCA, ( a bit too late by then ) but soon down to 20 mgs and tapering as advised by PMR Pro (a great help ) The doctors and the rheum’s were useless . After a couple of small flares I was off the Pred in June 2020 and have been since then . Just a big thanks to PMR Pro and the other assisting people for there help. I still read the broadcasts but have nothing to add or advise, it’s just good when people get to the end race ( marathon) and are feeling better ! Best of luck.

Graeme ( mid-Sussex )

[cycli]

good post Deneez99. It has stirred many people with what hopefully may inform those new to this and give hope from their progress off this drug.

[tina-shelley]

Hi Deneez, yes I successfully ended my PMR journey in 2018 after a 5 year stint. I reduced very slowly over the 5 year period after suffering a couple of flares. I was clear of PMR for 3 years but the week after having my second COVID jab the symptoms started again. I’ve been on 7mgs for 5 weeks now and once again will reduce very slowly. Regards, Tina.

[Sandradsn]

I came off pred in June after 5.5 years.I briefly took them again for a week.I am pain free but get stiffness around hips and thighs.My gp has left the practice,I'm relunctant to see yet another dr.I've seen 5 during pmr,all with different ideas.

[Harbel]

I am pain free and pred free since July 9th this year. My neighbour, kind heart bless her, brought me a walking frame three years earlier. One time I went out on the road and a police car went by, did a u turn, and wanted me to get in to get me home! Now I regularly walk for an hour or so. I actually have been known to run down the hills. You have the support you require here

[Nextoneplease in reply to Harbel]

Hi, I had to smile at this, Harbel

It reminded me of a time around March 2020, just as the first lockdown was starting, when I was pretty much forcing myself to go out for a ten minute walk in the village. I was so exhausted, my hips, ankles and back hurt, so five minutes in, I stopped for a break! 😳 A very kind young woman rushed out of her house to ask if I was okay - I said I was, but of course I wasn’t!!

For most of the following year I was in pain, exhausted, and felt like a real old lady (I was just 70). Put it down to OA, the stress of lockdown…..all sorts of things. Wasn’t diagnosed with PMR until the symptoms became inescapably acute a year later.

Anyway my point is, I’m still on 12.5 mg a day, but at least I don’t feel like quite such an old has-been as I did then 🤞I try to remember this when I get low 😉

And I come on here for support….

All the best to everyone xx

[Nextoneplease]

Great thread Deneez99 👍x