Update on project Zero Pred

[HeronNS]

Here's link to the thread from several months ago. As of today (19.02.24) I've had no pred since first of this month.

healthunlocked.com/pmrgcauk...

Have found a distinct lack of energy which doesn't seem to improve as the days go by, not even that recently experienced little bump of energy around teatime. So far no actual what I'd call PMR symptoms, but definitely feeling extremely creaky. Not sure how long this phase might last. I've been on pred for about three years since a quite promising morning cortisol test so don't know if adrenals have decided to pack it in, at least for now.

I know it's too early to claim success or admit defeat, but just wondering if anyone else out there has experienced similar after years on pred (in my case since June 2015).

[123-go]

Hello, Heron. I reached zero pred two weeks ago after six years. I felt slightly but uncomfortably nauseous for around a week with little energy and no appetite. I still have no ‘get up and go’ and am not fighting it. For the past few days my lower back has been extremely ‘ouchy’ but paracetamol erases a lot of the pain which is not PMR pain-that’s a different kettle of fish. I will persevere 🙂.

I am still on 10mg leflunomide daily for aortitis.

[DorsetLady PMRGCAuk volunteer]

Adrenals won’t have packed in completely- or you’d definitely know! But they are still dithering by the sounds of it… and can take up to 12 months [occasionally longer] to be back to 100% functioning.

So just make sure you always have some Pred on you in case you get a severe case of them wobbling. ..and keep your medical bracelet or whatever on your person.

Fingers crossed all goes well.

[SnazzyD]

3.5 years on Pred and it took 18 months to feel normal. It felt like a full picture being built up with dots, with the image slowly evolving and suddenly its there and you didn’t notice at what point it arrived. The first 6 months was the hardest but I did have long Covid. I was on 1mg-0mg for a year though before stopping and was napping in the afternoons and could run out of steam on any given day. I had good days too. I could cope with short and sharp demands but anything prolonged like a day of adventure or stress was too much. I had less tolerant muscles and aches and pains for 18 months. Yes I had had Covid a few times but I had that feebleness during the 0-1year. I stopped in Aug 2020 (6 months in from Covid 1) and really turned a corner in April 2023. I still never go far from home without Pred in my bag having had a few crises out of nowhere but with hindsight, the ingredients were there. Bottom line, it can be a long and unpredictable old path. The up side is, you could turn the corner a while after it seems like this is it.

I think the trouble is with this condition, we are subtly programmed to think zero Pred is the end of the process. I see it like having one’s leg plaster removed. You don’t walk off like new; it’s when the physio starts.

[Blearyeyed in reply to SnazzyD]

Great answer that's exactly how it feels

[123-go in reply to SnazzyD]

You have explained this so well! A lifelong friend is coming to the UK from NZ in a couple of months to stay with her sister 90+ minutes drive from me and while not wanting to appear pessimistic, but remembering past occasions where whole days were involved, I am concerned about what will be planned. I will be consulted for sure but I don’t want to be a killjoy or that person who makes excuses for not wanting to this or that. The long lunch will be great but London galleries, museums, exhibitions, old haunts have been the norm in the past. I’ve thought of asking them (3) to come to us for us for a visit but thinking through what that will involve the idea was soon dismissed.

What may make things difficult is the fact that my friend’s father had PMR which lasted “only a year!” I really don’t want to get out the book of, “What it is like for Many”? 🥹

[SnazzyD in reply to 123-go]

Ah yes, permanently feeling like the kill joy to those who don’t get it 😞.Par for the course, sadly. Perhaps request a smaller itinerary? You need to stick to your guns I think. As for the 1 year wonder, I can’t think of any disease where it is exactly the same for every person. When people wheel out these anecdotes, it seems to be only for their benefit, to feel better or air their frustration.

[PMRpro Ambassador in reply to 123-go]

I remember someone telling us about friends where the husband had had PMR. In his version he was hardly affected and it was gone in a year. In the wife's version, he was an utter pain and it lasted the best part of 4 years ...

[123-go in reply to PMRpro]

He sounds like a legend in his own mind! I expect he carried on with all his previous activities-5 mile runs, 50 lengths of the pool, lifting his own body weight 😂😂😂. I feel sorry for the wife!

[Sharitone in reply to 123-go]

Have you thought of hiring a scooter for the museums, etc? I've found it makes the slow amble much mor do-able.

[123-go in reply to Sharitone]

Thank you for the tip 👍.

[HeronNS in reply to Sharitone]

I'm sorry, but the picture which popped into my head at this suggestion made me laugh! Can't you just see it, all us oldsters being issued speeding tickets in the museum....🤡

[Bcol in reply to Sharitone]

Not PMR but when I had bones in my foot fused together I used a scooter in the supermarkets, as supplied by them, it was brilliant.

[PMRpro Ambassador]

Well done - long may it last and hope the wobbles stabilise!

[Bluey-1]

Well done. I hope you gain more energy soon.

[Missus835]

Well done you. I sincerely hope you feel more like yourself soon Heron. It's been a long haul. Thank you for this post and bringing to reality that reaching zero pred is merely the end of a chapter. 🌹

[powerwalk]

Best of luck. Hope all goes well for you.

[HeronNS]

❤️Thanks all. Today my hands hurt when playing the piano; in the past they've felt better. My "other" hip hurts, not the one miraculously cured with a bursitis exercise many moons ago. A weeklong headache went away yesterday but I don't know if it's because I ate some salt the night before or the weather improved. And I'm being investigated for a tremor in my right hand, don't know whether to hope it's "only" arthritis in the cervical spine (which can, I understand, eventually become a condition worthy of MAID) or a more troubling disease. Kind of hope the weakening heart carries me off before any of the other possibilities fully materialise! Basically I'm a mess, and yet still so much better off than many. Hubby is losing his eyesight (which he can't do anything about, already being treated by two specialists) and his hearing (which he could do something about only he won't take himself off to the audiologist around the corner). His lessening ability to help has made things a bit harder for me - he used to vacuum, but now he can't see well enough. So the two of us are a couple of old crocks, not particularly good at propping each other up!

Thanks again for listening.🤗

[123-go in reply to HeronNS]

💐💓

[PMRpro Ambassador in reply to HeronNS]

You are being a cheery bunny!!!!!!

[HeronNS in reply to PMRpro]

Until recently I had no idea how much work it is just being old. Not doing things while you're old, that's a given, but just being.

[Poshdog]

My mother is 102, still gardening and 'independent' living - wondering which of us will go first! X

[HeronNS in reply to Poshdog]

How wonderful she's been part of your life for so long, and still enjoying life.

You know, I read years ago that our parents' generation would be the last to see improvements in life expectancy. I think advances in medical treatments have helped, but the thing is, it's our generation that was first exposed to modified nerve gas (origins of agricultural pesticides) and nuclear fallout. There were some things which our parents were also exposed to, notably tobacco and pollution from fuels, lead in paint, asbestos in building materials, as well as diseases now better controlled (although for how long, one wonders today), but during our time nature has become more and more contaminated, and everyone alive today is exposed to more and more carcinogens, and less and less ability to escape these insults to our physical wellbeing.

[Poshdog]

She takes no tablets, doesn't believe in blood pressure being taken, and the only jabs were Covid, and cholera when we lived in India. Think the pollutants must have preserved her as planes used to dump DDT over the yard on a regular basis!Either that or no-one on the other side is brave enough to take her on!

[HeronNS in reply to Poshdog]

DDT was first discovered to be an effective insecticide in 1939. The first atmospheric nuclear testing in the 1940s, which continued for years. I remember when they discovered there was strontium 90 in the milk we were drinking, must have been the late 50s, even as children we were talking about it. You know how you can pull up a stem of grass and chew on the tender end? We were warned not to do that anymore!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

It’s a wonder some of us, and our parents got to the ripe old age we are/did..shows we must be more robust than we think… 😳

[yogabonnie]

I missed this post!!!! Glad you are better.!!! BUT you have good bones. yes??????

[HeronNS in reply to yogabonnie]

Weelll... I was treated to a surprise consultation with an osteoporosis nurse at one of my ortho appointments. After I made it clear I wasn't interested in discussing meds it turns out I also denied myself fast track to a DXA scan! However my GP has referred me for one so I suppose I'll hear about that in due course.

Interesting that the orthopod told me to take Vitamin C. Turns out it is very important in building bones! The OP nurse, however, informed me there is no evidence that Vitamin K2 helps with bone density. Sigh, I wish these people would keep up with the research and at least read about the Japanese experience and stop relying on the same old imperfect Western experiments,

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Interesting that the orthopod told me to take Vitamin C. Turns out it is very important in building bones!

If that’s true, then good… I’ve be taking it for years [started when late hubby had coronary issues to stop me getting viruses and taking home to him] - and K2 since you advised it!

[HeronNS in reply to DorsetLady]

It appears to be true, looked it up. Something to do with the formation of new bone.

As I'd been off pred for a few months when all this happened I managed to surprise the triage nurse when able to tell her I took no prescription meds! Then, because they wanted to know everything, I had a longish list of supplements (vitamins, minerals and glucosamine) to remember.

[yogabonnie]

I had no idea C helps!!! and ha, I did the SAME thing said no I wont take drugs and they said well no dexa scan... so I then said oh , well I guess if it is really bad I will and then it was really bad and I said I wouldnt but next time I would maybe if it gets worse. My doc knows full well I won't but he ordered another this year and I go on the 13th!

[HeronNS in reply to yogabonnie]

I didn't know either. Guess it comes up when you have a fracture, but not when you are just researching bone density. Unsurprisingly, it is important in the formation of collagen, the precursor to bone. Doctor didn't say how much so I asked the staff member who was showing me the way out of outpatient clinic and she said usually 500 mg. So I've been taking 500 morning and evening to be on the safe side. After my bone is healed I might continue taking it, altough I get plenty from food sources, but will definitely cut back the dosage as it will be largely wasted.

[yogabonnie in reply to HeronNS]

I did take too too much C once when I was getting a cold and got a kidney stone instead!! Now I dont take C but I do have LOTS OF FRUIT!

[PMRpro Ambassador in reply to HeronNS]

Better to use food as the source - did you know 2g of vit C supplement is a toxic dose?

[HeronNS in reply to PMRpro]

Not taking 2 g. I guess it's been 1 g, but depending what x-ray shows tomorrow planning to cut it back to 500 mg. soon. Certainly not anywhere near a gram in my diet, probably about 200 mg.

[Missus835]

My Osteoporosis Specialist, while going thru my plethora of Rx bottles, came to the K2 and asked what that was for. I explained. She said "you don't need that". It is combined with D3 in the same capsule. The bottle says K2 plus D3. 🙄 Of course I immediately stopped taking it....not.

[HeronNS in reply to Missus835]

It's because they don't understand its function in the body is not the same as K1. When I first learned about K2 my daughter was a relatively freshly minted registered dietitian and she had never heard of it. I only learned about K2 because I posted about osteoporosis on FB and a friend replied telling me about it, so I read up on it. The main reason I'm completely convinced that K2 has a beneficial effect on us is Vitamin K2 cured my excessively sensitive teeth! And many dentists know about it. An internet search for K2 will invariably bring up links to dental clinics where it's recommended.

[Missus835]

I had only heard of it through our forum and glad I did. My D3 levels are optimal and I suspect the K2 must be doing its job. Take care Heron. You're an inspiration to so many of us.🌹