Hope for all....It lasted 14 months: I have read... - PMRGCAuk

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Hope for all....It lasted 14 months

Persevere1951
Persevere1951

I have read much here from afar. I am male, 69 and long walks were a big part of my life. But 14 months ago, literally overnight, I could not turn over in bed, could barely walk, could not lift my legs to get in and out of the car, and I could not raise my arms. I had to fall onto the toilet seat instead of lowering myself, etc. etc. You all know the classic symptoms and I had them all.Diagnosed with PMR by Rheumatologist and began15 mg Pred with gradual reductions. I said to him, “should I do my walks” and he said “I strongly recommend it.” So I did...almost immediately...and I never stopped walking. Some mornings were sore mornings but after 12 months I just knew...I knew it was coming to a close. The 13th month was with very low Pred...1 or 2 and the final month 1, then none. Anyway, it is all over, I feel great, with only the slightest shoulder twinge that my rheum has told me is arthritis and not PMR. I truly feel as well as I ever have. Do men have an easier run? Based on what I read here and based on my experience, it would seem perhaps they do. I watched my diet somewhat. The only thing that stands out in that regard is ( because I always wanted a full stomach when I took Pred) I ate 2 avocados every day. And I never stopped walking. That, to me, was the key. Good luck to all and may your ordeal end as mine has.

81 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Yes men do invariably have an easier run...

congrats!

Thank you, m’am.

I've had PMR for 8 years and have often moaned "oh to be a man"!😂😂

I’m sorry Constance! Lol

Abbey17
Abbey17 in reply to Constance13

8 years? 😢 Omg I have had it for nearly 3 diagnosed for two

PMRpro
PMRproAmbassador in reply to Abbey17

I still have it after 15 years ...

Abbey17
Abbey17 in reply to PMRpro

😢 oh no I was hoping I was on the home run but it’s not got any better!

PMRpro
PMRproAmbassador in reply to Abbey17

It is very unusual!!

Same here, got PMR for my 60th birthday....now coming up to 69!....there must be something we can do....maybe complain it`s sexism!

Ha ha! How are you keeping these days? I'm not on the forum as much as I used to be so I 'get behind' on news of my old friends.

Really struggling right now...had my worst day yet yesterday. Rang local hospital to see a particular Rheumie, but it's awaiting game.....

Hoping tomorrow to be able to get in car with OH and have a meal by the coast you are familiar with, possibly Cromer.....such an effort. Looking back to last year's birthday could walk a lot more than now!!

I must stop moaning!.....thanks for asking.......how are you?

I haven't walked on a beach for 6 or 7 years - I really miss the sea.

My days are all roughly the same nowadays - get up late, potter around the house, read a lot, am on my laptop for 4-5 hours per day (including the reading), do crosswords, sudoku, puzzles, etc. - the occupation of the aged!😏

It's the arthritis that stops me doing much - very painful.

Keep trying!😂

I don't walk on the beach, but would love to go on the pier.....but it's a massive sloop down, but can't get up again!.....hips/groin and Osteo in lower back just don't allow it!......like you keep the brain going with loads of crosswords!......we carry on somehow.......👍

Suet3942
Suet3942 in reply to Constance13

Me too Constance

Constance13
Constance13 in reply to Suet3942

I know you have been on the forum for quite a while Suet but I don't know much about you. You haven't filled in your profile so I don't even know where you live, how long you have had PMR, how you are now keeping.

Suet3942
Suet3942 in reply to Constance13

Hi Constance. I’ve had pmr for 7 years now. I live in uk in Essex. The lowest dose of pred I’ve ever got to is 5mg . Every time, I get a sore scalp and intermittent pains in my head. I take 15mg of methotrexate every Wednesday. Currently on 7mg pred. Think this for the rest of my life.

My mother had pmr and gca as well and I think her mother as well but undiagnosed.

Constance13
Constance13 in reply to Suet3942

Thanks Suet. I know Essex quite well - I have/had relations there.

As you know, I've had PMR for 8 years and am now down to 4 mg pred (which I will be on for life). Most of the pain I now have comes from arthritis. Old age is FUN, isn't it? Although you are not so old are you?

💐💐

Suet3942
Suet3942 in reply to Constance13

I’m 71 Constance. I got pmr after my daughter had a very traumatic marriage break up. Did you have a trauma?

Constance13
Constance13 in reply to Suet3942

Nope! I had some strange aches/pains for about 4 weeks and decided to see a doctor when I couldn't lift my arms to comb my hair (a typical sign)! He diagnosed almost immediately - I'd never heard of PMR and I laughed and asked him to spell it!😂 I didn't laugh long however!!!!

I wonder if there is a significance to the fact you had a sudden onset of PMR. I know a few people on here (including me) waited some time for diagnosis with ever increasing symptoms.

I actually think the sudden onset is pretty common. But, yes, if it ever does come back I won’t even wait five minutes to take prednisone.

I would like to manage my journey in your way. I was toppled by Large Cell Vasculitis which has thrown the journey and introduced Tocilizumab and put me back in a confused journey .

I’m sorry, Jane. I have read your posts along the way and have always rooted for you and a resolution to your struggle.

That is absolutely wonderful for you. I have a male friend who was only sick for a year with pmr and was able to decrease the pred pretty fast. He has been pred free for about 5 years now.

Persevere1951
Persevere1951 in reply to Linny3

Thank you, Linny. Strange thing about us men, isn’t it? I forgot to mention that I never had any real side effects from the pred. Never gained weight, nor did my face become rounded. My WBC count was up in the beginning but came down as I reduced. For me it seemed to be a safe and certainly effective drug. Or as they say in the current covid parlance, an effective therapeutic.

I found Prednisalone to be a very effective drug and I felt fine on it. Completely miraculous in the beginning. Literally “take up your bed and walk”. I was and am one of its biggest advocates. Unluckily, after 4+ years I developed steroid induced diabetes, high blood pressure and cataracts. None of these insidious side effects gave me any symptoms., except weight gain.These conditions do not run in my family. It actually feels like I am messing up a good thing. I was down to 3 mgs and fully expecting this to be the end stage.

Hidden
Hidden

Hi, thanks for your post, in particular sharing your symptoms with us. I am recovering from GCA, a new member and actually your post has stimulated some further memory recall for me. The euphoria of being pain free and the side effects of high dose steroids obviously effecting my memory, particularly on one point.

I have commented here before about my personal fitness and the run up to having an acute episode, which remains ongoing and I will have to deal with for a while to come. 65, run 3 times a week on a circuit for 4 miles, 150 press-ups, weights: a bit excessive, a fitness zealot or a complete nutcase? Maybe, but for over 50 years I have trained like that and heart rate and recovery were comparable with my 20 year old. Add to that, glorious 6 months of COVID summer, retired, outdoor family and border collie, we would regularly walk 20,000 steps a day to keep our sanity and to divert our furloughed 20 year old from all things electronic. Surprising what a picnic, encouragement and ultimately cajoling can do.

Amongst all of the issues you have discussed, I had completely forgotten the toilet sitting, where I entered into “free fall” if I ventured to sit down. When I discussed my pre acute symptoms with my rheumatologist, similar entering my car, bed etc etc. Thank you so much for reminding me. It has no bearing on my current state, will have none on my diagnosis, or long term prognosis, but incredibly it will be nice to share with my wife another part of a complex jigsaw; she noticed abnormal elements of my decline, but we put it down to me getting older.

Thank you for the positives I have taken from your starter post, particularly your recovery. It gives me encouragement, which despite the fact that we have a different diagnosis, I may recover sufficiently to be more active in future. I cant see me ever recovering to full activity, but perhaps in any event that is for the best.

After over a week of undiagnosed hell when the acute episode started, 5 weeks of prednisilone and just started to reduce, it makes sitting here at 3:30 a.m. coping with steroid related insomnia somewhat more fruitful.

Great news for you! Delighted that you seem to be as close to recovery as some of us are likely to get. You offer hope to me that I will be able to exercise a bit more than a walk around the garden and a short walk in town.

AdoptMeow
AdoptMeow in reply to Hidden

Hi Theoldch. Perhaps your insomnia is not so much a side effect but due to the fact that a prednisone dose is not effective for 24 hours. One source states that it is in your system an average of 18 hours. Another source states the active range is 16.5 to 20 hours. That is why some have found better results splitting the daily dosage to take 1/4 to 1/3 in the evening. Several doctors have told me it should be taken only in the morning. But they don't understand how quickly the pain and immobility take over.

Hidden
Hidden in reply to AdoptMeow

Thanks as always for the advice, which is welcomed. I discussed this with my consultant and he was very convincing in his assurance that at the doses I am presently on, that it would make no difference at all IN MY case. Grateful for the advice though.

Persevere1951
Persevere1951 in reply to Hidden

I have no doubt that you, Theoldch, will be back to the longer, more strenuous workouts. Just a matter of time. I will be rooting for you.

This man has had PMR for the best part of 20 years so if any men are reading this don't think it will be true for all men to get over it quickly. I have just had a major flame last month. Had pains in my neck and shoulders for years undiagnosed then 1 in August 2012 my body totally seized up PMR diagnosed, since then I have been up and down with the prednisone like a yoyo. If prednisone is stopping the pain I can lead a normal life, but without it its just pain and life is not fun to say the least. Without prednisone, I think I would have topped myself, it's been very bad it times with the pain and fatigue. All the doctors worry about is trying to get me off prednisone not how you feel. I wish there was a proper cure.

I've never heard of a man having PMR for soooo long! You poor thing!

PMRpro
PMRproAmbassador in reply to Constance13

Not many women either!!!

Two things are needed - above all, a definitive diagnostic test and a better approach to management if there can't be a cure.

Constance13
Constance13 in reply to PMRpro

It's about 25% of PMRers who have it for over 5/6 years, isn't it? At least that must relieve a lot of them - 75% don't!

PMRpro
PMRproAmbassador in reply to Constance13

According to Matteson's study, half of patients still require pred beyond 6 years and 40% are still on a low dose at 10 years. If you are still here at 6 years - the outlook is not encouraging to get off pred.

Gaz227
Gaz227 in reply to paulst955

I am 5 years in still suffering , not just PMR but now other immune conditions that seem to have developed along the way . Pred was my savour at first but now I can’t get off it plus I think if I did I wouldn’t be able to function. So I guess not all of us men have an easy run , wishing you a more pain free future 👍

Longtimer
Longtimer in reply to paulst955

Couldn`t agree more!

scats
scats in reply to paulst955

My brother isn't having an easy journey either, his PMR developed into GCA after 6 years. He has been active all this time too. I'm hoping 20 years is exceptional.

Wishing you all the best.

Very encouraging. Like you, I had very sudden onset of pmr, started on 15mg of steroids last September, now on 2 mg and actually feeling ok. I have always walked- as soon as I was able! - have not always had smooth ride with my gp but she did give one good piece of advice - if I felt stiff after a taper, not to panic but to try and walk out the stiffness.

I really believe that advice. SO many times I was able to walk that stiffness/pain/burn (however you may describe it) away with a 3 mile walk. And I know, for some, that is not always possible. But it worked for me.

Glad you are ok

Well Jel .

Well done to you . Reading your symptoms Story was exactly as mine were. I forgot about the falling onto the toilet seat! That could have been me describing my sudden onset. I managed to get down to 2 mg , but have jumped back up to 5 , on the advice of these good folks. 2mg I was getting stiff. I swim almost daily , and bike ride.

I will attempt to taper again , but at present am relatively comfortable on 5 mg.

I’ll use your post as a motivation.

Well done & I wish you continued good health.

PMRpro
PMRproAmbassador in reply to Stifffingers

I didn't fall onto the loo seat - I just couldn't get up! Almost pulled a washbasin off the wall and couldn't open the bathroom door in the house we'd just moved to!!! The last was due to the fact it had knobs rather than lever handles - not ideal with PMR!

Stifffingers
Stifffingers in reply to PMRpro

I just replied , but think it got deleted before it went. Apologies if this a duplicate( or similar) memory ain’t too clever!

Your mention of grabbing the sink to pull yourself up. I forgot about that trick . Yes indeed , me too! Thank g.d for the plumber, placing it there. ( And I did plonk down ) .we are the same age ... mine started Sept 2018 . Interested in your walking . I remember getting told off by PMR pro for walking 16 lengths of the swimming pool . Boy did that cause a flare!!! The walk , not the telling off ...Lol .

I built up over Months , whilst tapering . It just kind of went wonky at 2 mg. , hence now upped to 5 again . Will get there I’m sure eventually.

Walking makes me very stiff , although I’m a stiff bodied person . Did you never have any flares when reducing?

PMRpro
PMRproAmbassador in reply to Stifffingers

Me? Life feels like a permanent flare!!! I have never got much below 10mg for any length of time and at present have been back to 15 for various reasons! Covid and OH being ill seems a good reason ...

Stifffingers
Stifffingers in reply to PMRpro

Sorry to hear that. Reading some of yours and other posts , you all suffer so .

Off for my swim . X

Stifffingers
Stifffingers in reply to PMRpro

Just realised I replied to you , not the originator.. lol . Hence my questions about him having flares .

Getting old !!!!!

PMRpro
PMRproAmbassador in reply to Stifffingers

It's this forum format - very confusing!!

I couldn’t push myself up the bed to a sitting position. If something fell on the floor it stayed there and couldn’t shower cos couldn’t move my arms . Awful.

Seems we have all the same experiences.

Noosat
Noosat in reply to Stifffingers

I started prednisone 2 months after you. I got down to 3mg, but had to go back to 5mg. Now tapered to 4mg once again. I am always very stiff in the morning. I do find that if I walk, not overdo it, I can decrease the stiffness. I take the prednisone about 6a.m. and find that I actually feel better about 4p.m., which surprisingly was always my low point of the day. After a noon lunch, I am very lethargic and le down and read for an hour.

Stifffingers
Stifffingers in reply to Noosat

Seems we are on the same path. I did go down to 1 after being on 2 for a Month, but I was irritable and uncomfortable, so popped in a 5 , and hey ho, off we go again.

Thank you very much. Yeah, I hope to never again experience that incredible thigh pain when attempting to sit. Honestly, they were some of my most painful moments on that journey.

Tell me,..........

On your tapering , did you ever feel rough for a few days?

With regards to you immediately walking, were you not in pain to do so.?

I began walking shortly after I started taking the initial 15mg. Not too much, though, at first, because I wasn’t sure what the PMR was doing to my muscles. I absolutely had to go back up on my taper a few times but I think that is common and I never considered that a real setback. The hardest was probably between 8 and 12 mg. Once I got in the 5 range and below I knew it was just a matter of months before I would be off pred.

Thank you :

Encouraging

So happy for you!

Thank you!

I'll certainly echo that thought;I took my last mg of Pred two months ago which was just over 12 months after being diagnosed,and that is exactly what the majority of people should expect according to the stats my rheumatologist provided from the outset - 70% clear in 12 to 18 months.

My guy said 18. So I fell right in that range.

I thought I would just join in on this thread- 8.5 years since onset and never really got below 11mgs. Since I have had 4 joint replacements now, I am hoping I might be able to lower my steroids at last! Hope springs eternal!

MrsNails
MrsNails in reply to suzy1959

Similar time frame Suzy but did get to 7.5mg on MTX the first time & 5mg when l finished Chemo but back up at 12.5mg plus MTX again!

suzy1959
suzy1959 in reply to MrsNails

So frustrating, isn’t it? Still we just have to deal with what we’ve got don’t we?

Thanks for your post it is really encouraging to read something positive. My story mirrors your experience I am 8 weeks in pain free on 15 mgs now down to 5 mgs and off for a blood test this morning. If my CRP remains constant currently1 I will be off PRED in the next 5 months a time scale of approximately 9 months from first symptoms. I was wondering if I was tapering too quickly because all the stories on here are often quite negative . Well done I wish you, well you have inspired me to taper at my current rate and be back to normal early next year

Thanks Bill. As for the taper, I listened to my body. And sometimes the Rheumatologist after the inflammation markers were discussed along the way.

Oh yes, me too! Down to .5 mg after 2 years, but the pain came back, back to 2.5 and now 5.00. Could no more think of doing press ups in the morning than fly! In the afternoon I can do some exercise, so am windsurfing tonight for an hour. I am 74. Yes to the problems with the loo, also getting into and out of the bath, luckily I have a seat built in that is half way down, I slide onto this and then into the bath! Then there is the problem of drying myself! It seems to me there is no common route out for this disease we just self monitor and hope for the best!

Exactly! How can anyone know what we feel with PMR?

Great to hear good news. Just wondered if anyone out there knows of anybody who has ever fully recovered from a zostavax induced PMR? Looking for any hope of being pain free. Thanks

I wish this site would do a survey of how many folks have had shingles vaccine and if it effected the onset of PMR. That would be most interesting !

congrats, so happy for you. I think moving the body is the absolute key, I've had PMR for 15 months and last month we sold our house & I started packing and working at that for good 7 hr day and expecting some type of flare up or need to increase the prednisone, instead the opposite was true, I kept feeling better, so reduced it

Thank you and continued success moving forward.

Thank you for the hopeful and positive post! How did you do it? Any tips? Did you taper quickly or slowly? Were you able to keep up the exercise? I realise these questions are silly because we are all different, but it would be interesting to know..

I'm fairly early into it, and am trying to keep up my exercise but now I've reached 10 (from 15) I feel weak and worn out and can't walk more than 100 yards!

PMRpro
PMRproAmbassador in reply to Blossom20

Did you go straight from 15 to 10mg? How are splitting the dose now?

Blossom20
Blossom20 in reply to PMRpro

Noo, I went down in ones, weekly at first, and 2 weekly from 12. Plan to stay on 10 for a month then do a slow taper.

I wonder if I'm feeling pred withdrawal rather than a flare of pmr. No pain but very tense shoulders and neck. Legs like lead, and easily twinge tendons. Irritable and fed up. Sleep much better! What do you think?

Thanks for following me!

PMRpro
PMRproAmbassador in reply to Blossom20

That does suggest early stages of a flare to me - you will see if you stay at 10mg for at least a month. If it is withdrawal then it will improve, if it is a flare it will get worse.

One top group use an approach where you stay at 10mg for a year! They found it reduced flares from 3 in 5 to 1 in 5!

Blossom20
Blossom20 in reply to PMRpro

Thanks....fingers crossed! I am so bad at resting. I keep pushing myself! I'm sure I'll be better if I relax. That's probably the root of it all too.

Thank you Blossom. As soon as the pred took hold I went back to my walking routine and never stopped. I think you are in the early stages so you have to be patient. That is hard to do! But it will get better. You will see. I hesitate to give tapering advice except to say I listened to my body. At my Rheum appointments, when we discussed the latest inflammation markers, I noted his advice as far as the next taper. Hopefully one day, as happened to me, you will just KNOW that the PMR symptoms are leaving your body. You just say, “this is the way I used to feel” and in a matter of time ...it’s gone. Anyway, I pray that is the way it goes for everyone.

Congratulations Persevere1951

I'm so happy for you.

Whether Male or Female.. so encouraging to read some positive posts here in the forum.

Just thinking..perhaps "Males" do better then us "Females" because they have "Females" looking after them...just a thought !!! 🙄

KW2020

Thank you, ma’m. I wish I’d had some T L C!

Inspiring.

Thank-you.

I note your persistence with excercise and the two avocados a day, very important I'd say. I think you have made two very valid points indeed.

May it continue for you.

Best Wishes,

Poppy

Thanks, Poppy

I didn’t choose Avocados randomly. I knew they contain 20 vitamins and minerals. Two might be too much for many but I never gained an ounce due to the daily walks. And I always wanted more than a little food in my stomach with pred.

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