PMRGCAuk

Polymyalgia Rheumatica

This all started in September 2017, I started feeling stiff as if I had been in the gym to long. Within 5 days I was walking bent up like an old man, pain in the hips, upper arms and shoulders as I went to the doctor. After blood tests the doctor told me I have Polymyalgia Rheumatuica. Take 30mg Prednisolone from 1 week, 20mg for 1 week and then 10mg for 1week, and I was book into the hospital to see an expert on the condition. On the third week I was at the hospital with a consultant who said the 30mg start was to high, I should have started on 20mg, and as I looked OK the doctor can deal with this and not waste the hospitals time, just carry on with the Prednisolone but Drop by 1mg very 4 to 6 week, until you are of the Prednisolone or reach a dose with you cannot give up. I have got more help from Goolge and site like this. I am 64 and still go to the gym twice a week, I will not give up.

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Hello TimeLord and welcome to the club. People who know much more about the disease will come and give you Good advice, but You wrote “ I will not give up” and it strikes me. What exactly you are not willing to give up. The auto immune disease is going its own way, you can not fight. For me it works best to accept the limitations be Good for my body swim rather then run for example sorry if it might sound a bit soft but this was for the first time in my life I did no longer push my body to my goals. Good luck and a Good recovery

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Hi Zofitmogelijk,

From what I can see from these post and whats on google, there is no recovery, just an onward fight with the pain and the pills. So I will not give up on life and I will fight on.

.

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Hi timelord

In this dimension people do recover and pmr/gca can and does go into remission. It can feel like a fight but why would you want to go into battle with your own body? It doesn't mean you have to give up going to the gym, just that you may have to rest afterwards to allow your muscles to heal. Good luck!

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Hi TimeLord,

Maybe not recovery in the sense of some illnesses, but PMR normally does have its own lifespan- unfortunately nobody can say for sure what exactly that will be. Could be 2 years (minimum), more likely 4-5years, and occasionally a lot longer. You have to learn to manage it, not try and conquer it.

Good news, on the whole, men cope better than ladies with the illness.

30mg was a very high starting dose,15mg is more normal. Plus your doctor obviously didn’t understand the nature of PMR looking at his advice re tapering.

Exercise is good so long as you don’t over exert yourself, otherwise you’ll pay the next day.

Have a look at this

healthunlocked.com/pmrgcauk...

Good luck.

For info - my GCA now been in remission for almost 2 years

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75% of patients with PMR are able to discontinue pred in up to 6 years - about a quarter are able to get to zero fairly easily and speedily in about 2 years. Only a very few of us have it for life, probably 5%.

You won't fight it and beat it - you have to learn to live with it and accommodate it and then you can have a pretty decent quality of life. Learning pacing and how to not poke the gorilla into life is a skill - but worth acquiring:

healthunlocked.com/pmrgcauk...

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Interesting. You must know this disease well. I also am new and trying to figure out the psychological component that goes along with the clinical management. My ears are listening and my eyes wide open . Thanks

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Hi

Any long term illness needs to be approached with such a stance I am afraid. You'll go through lots of psychological processes a la kubler-ross and her evolving model of the processes. They include denial anger bargaining depression acceptance and others. It's not a straight process and I have felt all in the course of a few hours!

The main thing is you will feel better as long as you rest and pace yourself. Lots of us if benefited from low carb diet and from the advice of people on this great forum- especially PMRPRO and DorsetLady whose nuggets are especially golden. Just keep searching past posts and ask questions. 🌻

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Ps you responded to a post that is a month old which is ok but it's worth a new post if you have a specific question.

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Yes I just noticed that. Thank you

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I understand your sentiment, but acceptance isn’t giving up. Your body needs to heal and heal it will if you let it. If you are in pain then the inflammation isn’t being held at bay and although I have no doubt you have the resolve to push through it, you run the risk of wider damage to your circulatory system and your muscles. For now, you need rest, excellent nutrition, steady exercise (nothing explosive) and giving your body what it needs to get better. The trouble with Google is that you will come across extremes of any condition and apparent miracle cures. Also on forums you will tend to see those who are having trouble while the ones who sail through tend to not bother or leave when they recover. PMR/GCA are long haul autoimmune conditions that require a change in how we do things for a while. If you thrash your body in the gym with this you are more likely to end up with an injury that stops it altogether because both PMR and Pred reduce your muscle resilience at the moment. It will get better and even if you are one of those who stays on a very small dose forever, you could live life happily and actively. You are in the early days when it can feel hopeless and frustrating. So use that willpower to adjust instead of beating yourself up. Good luck!

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Welcome to the forum TimeLord

You did well to see a rheum in 3 weeks. I waited over 5 months.

Are you still at 10mg? How are you feeling? I started at 20mg and 11 months later have reached 10mg with many ups and downs on the way. If you’re currently ok at 10, I’d suggest to stay there for at least the 6 weeks, just to make sure the inflammation isn’t building in the background.

Exercise is good for the bones, just don’t overdo it or you’ll feel it the next day or even the day after. Our PMR muscles just don’t accept being pushed to their limits and will complain bitterly afterwards. But they’re not good at telling us to stop DURING exercise, they just hold on to their resentment until a later time!

Re bones....any supplements offered? Calcium? VitD? Alendronic acid? I’d say go with the first 2 and maybe add VitK2, prunes and check you’re getting plenty of phosphorous and magnesium in your diet. Query the AA as it’s not a given that you need it, and it can make you feel a bit yuck.

No we’re none of us heading for ‘cure’ but for remission. Treating your body in a kind way will help you achieve that, but your rheum’s plan for 10-15 months to be off pred is.....shall we say optimistic?

Stick around with the forum for ongoing support.

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Hi Soraya_PMA,

I am down to 6mg at the moment with the odd pain in the knees and shoulders, on the colder days. I have stiff hand in the morning but they get better around 12:00 to 2:00. I am on Calcium, & VitD and Alendronic acid. I am 64 which I do not consider old and a man! At the moment I feel OK.....

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Hello TimeLord and welcome to the site? Are you male? If so it can be good news with PMR and a slightly easier ride. Please ask questions as they arise. Your hospital treatment was perfunctory to say the least but I guess accurate although brief. Plenty of knowledge, expertise and science available on this site, as I hope you’ve discovered. At least you are coming from a fit base - it must help, I imagine.

You will need to tailor your activities and pace yourself or you will pay physically. You may have felt dismissed by the hospital but you do have a serious systemic disease that will run its course, for perhaps 2-4 years. The discipline of Diet and appropriate exercise will support you, as will frequent rest. I wish you well.

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Hi Sheffieldjane.

Yes I am a man of 64 year.

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Hi TimeLord,

Well, you are not the first to be started at 30mg, it happened for me in December 2014, after six days at 20mg failed to clear the inflammation and pain. Three weeks later and I was in to my tapering process, getting down to 15mg in about three months, then slowing down considerably.

Subsequently, it has taken almost three further years to get down to 5mg. No flares along the route, but I have had to make adjustments when I have felt the symptoms returning.

I was an active 73year old male when all this started. I still excercise regularly, but most definitely have had to learn to pace myself, and allow myself plenty of rest. Life goes on reasonably well, but not as it was prior to diagnosis.

One thing you will learn about PMR, if you haven't done so already, is that it seems to affect everyone differently. I have found this forum to be extremely helpful, so I recommend you do stay in touch. The biggest problems people seem to get are from trying to taper down too quickly, and not taking it easy!

Good luck

Paddy

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Hi Charlie1boy ---- Paddy.

By the look of some of the posts on this site, I have been extremely lucky so far, and I do say so far. I have dropped down to 6mg with no big upsets so far. I can see this is a long road to travel.

This came out of left field and has knocked my for 6. I was 64 in January and I am retiring at the end of March. This was not the retirement I planned, but I am learning to live with the cards I have been dealt.

With the lack of information from my doctor and the consultant, it is nice to talk.

Thanks' for the info, Frederick ... TimeLord

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Yes Frederick, it came out of the "left field" for me too, and, I guess for a lot of others. I had never heard of PMR before diagnosis, so was straight into Google, and this forum.

You have done well to get to 6mg so quickly, so hopefully the PMR does not turn tail on you, and force you to increase your preds. As I wrote in my earlier post, everyone reacts differently to this condition, so maybe, with luck, you will be able to sail through.

Good luck.

Paddy

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Thanks' Paddy,

I will keep in touch.

Frederick

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Hi again Frederick.

I think I saw that you live in Coventry, and are interested in maybe joining our meet ups?

If so, then we meet on the last Friday of each month at the Hilton hotel, Coventry up by the M6/M69 junction from 10.30 till about lunchtime. Our next meeting will be on Friday 23rd March. It would be good if you can make it.

Paddy

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Hi Paddy,

I am working at the moment so March is out, but I am retiring on 30th March so April will be OK. I will see you then.

Frederick

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Hi Paddy (Charlie1boy)

Are you at the Hilton hotel this week, if so i will see you there.

Frederick (TimeLord)

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Hi Frederick,

Nice to hear from you. In fact, I am missing our meeting this month for the first time in about a year. Having a long weekend break to celebrate our wedding anniversary.

The meeting is definitely going ahead, so I hope you will find it worthwhile. I have been going for about two years now.

I will almost certainly be there for the end of May meeting, so, hopefully, will catch up with you then

Regards

Paddy

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Hi Paddy,

Hope you have a good weekend, see you at the end of May,

Frederick

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Wow: diagnosed last September and already down to 6 mg from 30! We surely move in different dimensions.

At 68, I too was diagnosed last September and am down to 14 mg from 24, thinking I was tapering fast. You inspire me to push the limits.

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Hi Joydeck,

Slowly, every 4 to 6 weeks if I feel good I go down 1mg, the first week is OK, but then next 2 week can be problematic, but from then on I plateau out and if I fee OK I start all over again. So it's slowly, slowly, and with me so far so good.

TimeLord ( Frederick )

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Just because someone else can do it doesn't mean you can!!! It always worries me when I hear someone wanting to push the limits. It usually ends in tears...

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You're right: I'm no TimeLord.

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Hi. You are in the right place for advise and knowledge. I’m 53 and diagnosed in sep 17. Started on 40mg !! Reduced weekly by 5mg. So I got to 5mg by Nov. And I’m still there having gone back up to 6 then 7. I reduce now by .5 and it seems to fool the body. So I’m about to drop to 4.5 and so it goes. If I’m lucky I should be down to around 2mg by sep 18!! I swim 3 times a week and am about to start Pilates. I did gain weight , around 7 lbs. and my face bloats up and down - the moon face !! But I’m living a normal life. I hate taking the drug and I act so I hate how my face looks but I’m doing fine. I listen v carefully to my body and don’t drop if I think it’s the wrong time. Stay around, you’ll get loads of info and support here . Take care

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Hi, I still love your name! And now it's nice to know your story! Welcome. I wrote, and posted, this poem on this site two months ago (although it seems like a lifetime ago now!) I'm not sure why, but I feel compelled to share it with you now. *shoulders shrugging*

My Path

We are strangers.

Similar, yet different.

Although we find ourselves “together" on this journey, we walk, as individuals, on very separate paths.

And walk alone, we must.

Each one of us carries our own experiences, fears, insecurities and expectations.

I honour your bravery.

I am in awe of you optimism.

I desire your resolve.

But for now, for just a short time, please honour my place, on my path.

Allow me my darkness.

Tolerate my despair.

Grant me time and space to grow and become strong, like you.

Empower me to liberate my inner warrior and know that she is fated (or is she cursed) to rage against this, her most recent enemy.

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Hi mamici1,

As the song said,

The road is long, with many a winding turn.

It's nice to talk to people who understand who we are and where we are going.

TimeLord (Frederick)

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HA! As you get to know me, you will see... that is soooo not me!

I wish to hell I knew where I was going! And I've unearthed so many opposite and conflicting facets of me... I've lost count!

...but hey, come along, the road is long, with many a winding turn, but the company's good.

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Good lord! You found us just in time! This site has been my salvation. Be kind to yourself and listen to your body! I've always exercised hard and fast but no more - pinged muscles in my torso (yet without over exercising) and find it goes hand in hand with steroids for some folk. I still exercise but sensibly! Good luck!

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Good luck with going to the gym. Every time I tried to go it just made my pain worse i finally had to give up.

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