Guess i,m needing some encouragement!

[Stifffingers]

Hi, rang the help line earlier(thanks for listening and advice). Guess i,m like everyone else?.....came out of nowhere.One day woke up after falling asleep watching Tv on the couch.. unable to move.Legs had nothing , my arms and wrists totally week. Could only get off (eventually)by rolling off onto the floor. Made it to the Bedroom, couldn't even pull the quilt over me.Wrists and arms so weak. Saw my GP, next morning, put me on Antibioticsics. ( Thanks Doc,). Obviously WOT, ended up having to cut vacation short as in so much pain and difficulty. One night i was actually screaming in pain.Got admitted to Hospital on my return, and after a morphine shot, was prescribed Prednisone the following morning!Halleluja. After a week of 20 mg, went back to the clinic, where i was told to reduce over 4 weeks , 3, 2, then 1 tablet a day (5mg). was feeling good., until i went out on a bike ride, not far, just a little exercise. Then BANG, in agony for next 3 days. prostate on the couch again, and feeling really sick. My NHS follow up not until December18th. Couldn't stay like that in that kind of pain , so booked to go private. The Specialist was surprised that my dosage had been reduced so quickly and upped my dosage to 15 mg a day .My CRP, was 45 instead of 5. Re visiting him this Saturday.

Really hasn't made much difference at all. Still in terrible pain ( yep you know) shoulders feet , wrists knuckles, legs. Very low now, hence i found this site.Have gone from being very active, personal trainer twice a week, Hot Yoga , Swimming, to nothing!.Always hungry, and putting on the pounds too.

is there alight at the end of the tunnel?Any help, advice , gratefully received.

[PMRpro Ambassador]

Something similar happened to me, I was started on a 6 week taper, 15/10/5mg each for 2 weeks. Within 6 hours of missing the first 5mg tablet I was worse than ever. Although I had responded in under 6 hours to 15mg, it took much longer to get under control again after the flare-up. It isn't uncommon for it to be more difficult to get symptoms under control - and you probably need 20mg this time.

And to help the hunger - try cutting your carbs! Pred changes how your body processes carbs and causes spikes of blood sugar, spikes of insulin, sudden falls in BS, craving to get the BS back up - you must know about it as a personal trainer. And that should also help the weight gain.

You could try 20mg to see what happens - or you could call/email your private guy before Saturday.

[Stifffingers in reply to PMRpro]

thank you for your reply & support. Bit of amis understanding. i,m not aPT, that should read , had a Personal Trainer etc. In bad pain today, bad mood, very low. Forced myself to go my gym and i walked in the swimming pool . Maybe done too much?, all a learning curve for me, al i know feel like ****!

[PMRpro Ambassador in reply to Stifffingers]

Gym plus pool plus walking - oh, no, no no ... One at a time will do when you have PMR!!!

[Stifffingers in reply to PMRpro]

NO, not what it appears. Went, to my Gym (not into the gym) Used the Pool, which i walked in. That was the extent of it. However , realising that i probably walked too much, very tired now, but i also sat in a hot steam room to finish with, that could be adding to my tiredness.

[PMRpro Ambassador in reply to Stifffingers]

Possibly - used to make me feel tired. However - it was too far to walk so I took the car to the door of the gym/ Even then, I couldn't manage a full exercise session for some considerable time! You have to build up slowly!

[Stifffingers in reply to PMRpro]

Lesson learnt

[CT-5012]

Hi and welcome good that you have found this forum lots of information, help, some sympathy and the occasional laugh along the way. All good wishes.

[Stifffingers in reply to CT-5012]

thank you

[Yellowbluebell]

Hi I was only diagnosed 6/7 weeks ago and luckily found the site soon after my gp said he suspected prm. The advice has been fantastic from them especially prmpro and dorsetlady . The support is amazing and like ct-5012 says there's also some fun on the site as well. The only thing I can advise is you can not do what you used to do, your body just isn't up to it. Its hard but you have to accept it unfortunately. We are pretty much available on the site 24/7 because a lot of us are awake at night. In my case usually visiting the fridge trying to not eat the wagon wheelsx

[Stifffingers in reply to Yellowbluebell]

thank you. Does exercise inflame the problem?

[Yellowbluebell in reply to Stifffingers]

Apparently the pmr affects your muscles so yes some exercise will inflame the condition. Some of the others on the site will tell you what is sensible to do with pmr but I know I can't do anything like I used to with feeling completely knackered and I don't want to make things worse. Debby

[PMRpro Ambassador in reply to Stifffingers]

Not really - but your muscles are intolerant of acute exercise. You have an autoimmune disorder that makes your immune system unable to recognise your body as self and so it attacks it as if it were "foreign". This causes inflammation - and that is what causes the stiffness and pain. It is much the same sort of situation as when you have real flu - would you expect to be able to exercise as normal then? The trouble is - the autoimmune disorder that underlies PMR is chronic, it usually lasts about 2 years, the median duration is just under 6 years. Because your muscles are compromised, you tire easily, and you are likely to develop DOMS (delayed onset muscle soreness) much more easily and then it takes longer to resolve than you are used to.

Shortlived and gentle exercise will help symptoms - I had PMR for 5 years without any treatment and kept reasonably mobile by an aquafit class in the morning which left me better able to manage the rest of the day. I think it is warmth and the movement gets the blood supply going, dilated blood vessels and better blood flow. But I had to start with a low level - despite having been at the gym several times a week until it started. I didn't have any time between a decent level of exercise with and without PMR - other than the fatigue and pain limitations.

The fitter you are when PMR appears, the easier it is to build back to a higher level. But even competitive-level athletes (not actual professionals) reckon they are reduced to 70% of their previous level. Overdoing it at the early stages may lead to excessive DOMS - and it can take weeks, sometimes even months to recover. Just be warned - it is too late once you are there.

Just to illustrate the effect PMR can have, a guy on this forum, now heavily involved with the charity, was a firefighter, climbed mountains (including the Himalayas) and was training for marathonswhen PMR surfaced and put him in a wheelchair. He is back to running...

pmr-gca-northeast.org.uk/st...

[Harbel]

Hi and welcome to the site.

I was diagnosed in September 2018 and put on 30mg just for three days and then to 20. But the symptoms returned at 20 and I self increased to 25 and stayed there for six weeks.

I have greatly reduced carbs and sugar and I don't have increased appetite . We are all different but I am so greatfull to be pain free for now anyway. Best of luck

[Yellowbluebell in reply to Harbel]

You were diagnosed around the same as me and as much as i would like to blame the pred for my regular trips to the fridge I have to admit I have always been able to eat anything I wanted without weight gain and I was doing nightly raids on the fridge before the pred!! Stopping carbs or even reducing is going to be a big deal for me especially as I no will power!!

[Stifffingers in reply to Harbel]

thank you. You say you are pain free?.After how long has this been?

what dosage of this red are you on then?

[Yellowbluebell in reply to Stifffingers]

I am on 15mg a day and my hip/groin pain went within 48 hours. Other pains more or less gone within a week or so. The thing is I have been on the same dose for 6/7 weeks unlike you and my gp has said he doesn't want to start till Jan 2019. I have no problems with that because basically pred is the only drug that works and although there are side effects not everyone gets them but more importantly I am not in pain.

[Stifffingers in reply to Yellowbluebell]

Encouraging: My arms and hands are my worst issues. My legs once I’m moving I’m ok

[Stifffingers in reply to Stifffingers]

I’m on 15 mg a day : seems to make no difference. Seeing the Specialist Sat , maybe i’ll Get a clearer picture🙏

[Blearyeyed]

It isn't a quick fix , it will take time and alot of patience.

But there is light at the end of the tunnel , even though it is hard to see at times.

You have a great bunch of faraway friends on here with lots of helpful advice who will always try to help pick you up when you are down , and you can talk to us when you don't feel like talking to those at home too.

But remember , if you can be honest with yourself and with those around you about needing time to heal and rest, and needing some help it will be easier.

Just don't forget you are still you, just you with an illness , it may change what you can do for awhile but it won't change who you are. And you will be a much stronger person when you reach that light than you ever were before.

Hopefully we will be able to help you on the way.

[Stifffingers in reply to Blearyeyed]

Thank you. I hope so.

[SheffieldJane]

Unfortunately, I think your doctor’s initial dosing mistake is responsible for your protracted agony. It would have that effect on most of us. I wish they would look up guidelines if they don’t know! Our muscles are intolerant of too much exercise as you’ve just learned to your cost.You may need 20 mgs before your pain settles, sometimes 15 mgs doesn’t quite do the trick. When you are ready to taper down, please use the dead slow nearly stop method or similar, outlined on here. Never reducing by more than 10% of your dose and stopping if the pain is creeping back. Stick with us!

[Rokerman]

That pretty much mirrors my PMR onset - one day fine, the next - contemplating life as a disabled person! After a false start with my GP, I got a rapid diagnosis privately, initial 15mg Pred doseage not really effective - upped to 20mg and then more-or-less back to being able to work, which I’ve done ever since. But that was 30 months ago...... On the plus side, I’m down to 2.5mg a day, anticipating 2.0mg after a 2-month plateau. Not wishing to tempt fate(!), no flares as yet BUT I would strongly recommend the ‘dead slow, nearly stop’ reduction method.

You do get odd ‘blips’ in symptoms along the way - muscle weaknesses which seem to move randomly around the body (at present, I’ve got excruciating pain in my ring-finger, unable to clench a fist, ring removed!) and, with fatigue - you just can’t do as much as you used to!

So - be prepared for the long haul - think years, not months, but you will get your life back, albeit in a slightly different form!

Stick with this forum and always listen to PMRPro, Dorset Lady and others.........

Good luck, best wishes

[Stifffingers in reply to Rokerman]

this"Dead slow" scenario is new to me?. Years not Months ...oh my.

Thank you for replying.

[Rokerman in reply to Stifffingers]

DSNS is a slow-reduction plan (someone will be able to post a link - Dorset Lady?).

The idea is not to drop by more than 10% at a time, particularly when you approach single-figure doseage.

At the right doseage, you can still do the majority of things that you did before the bl**dy PMR struck(!) but remember:-

Pred doesn’t cure the disease, it just controls the symptoms!

Your friends & relatives will probably expect you to take a course of tablets over a set time and the condition will clear up...... it won’t! (My brother-in-law still asks me ‘how’s your shoulder?’ Grrrrr!🤣) It’ll take as long as it takes but take care not to reduce too quickly and avoid a flare, which could otherwise set you back some way in your recovery.

[PMRpro Ambassador in reply to Stifffingers]

Year not months because PMR rarely lasts much under 2 years and the median duration is 5.9 years. This is long haul stuff I'm afraid.

[PMRCanada]

Welcome to the site. Many wonderful, compassionate folks have already shared much valuable information.

I have been diagnosed with PMR since May 1/18, but had symptoms that came on suddenly for 5 months prior to diagnosis.

I was in shock and had many dark days prior to diagnosis. Felt a range of emotions, but when I finally accepted my condition, I felt more at peace and ready to focus on my healing. I cannot control the PMR, but I can control my diet (low carb, sugar, salt), when and how I exercise (deep water exercises and walking), and my rest (try to balance it all).

I’m here to say it gets better as you learn to listen to your body and manage your medication. I’m currently tapering down to 9.5 from my initial dose of 20mg. I’ve lost 30 pounds and lowered my bp medication.

Stick with us, we will “get it” better than others who do not have a lived experience with PMR/GCA. Try and keep supportive relationships in tact and utilize all of your resources. Keep us updated and ask us anything!

Leslie

[Stifffingers in reply to PMRCanada]

Thank you

[OkieRower]

The link to DSNS would be extremely helpful to those of us who are new here. Thank you all for sharing your experiences and insight. Trying to manage my taper now and the emotional side of me wants to be aggressive with it. But my logical side says NO.

[PMRpro Ambassador in reply to OkieRower]

healthunlocked.com/pmrgcauk...

[OkieRower in reply to PMRpro]

Thank you!