Hello

[Clickangel]

Hi! I am clickangel and new to this site. I was diagnosed with PRM in March or 2019. It has been an adventure and one I'm not real fond of but charging thru trying to get well. Not quite sure yet how to communicate on this site but will get better as I move along.

[DorsetLady PMRGCAuk volunteer]

Hi

And welcome

Well you’ve made the first move so that’s a good start. Just have a play and you’ll find things - try the search button or just read through previous posts for info.

One thing I would say is “charging thru” PMR is not the best way to deal with it.

This link may help you know s not more about what’s its all about -

healthunlocked.com/pmrgcauk...

[Clickangel in reply to DorsetLady]

I guess I worded it wrong when I said 'charging thru". I have been more into the books etc and fighting to keep my blood sugar down, bone density up, blood pressure normal.....One thing that I have done is went on a strict diet.....no processed foods and no sugars other than fruits etc. It has helped soooo much. I am currently on 10mg of prednisone and have been there for the last 59 days. I will do more bloodwork this Thurs to see if Dr. thinks we can lower to 7.5.

[DorsetLady PMRGCAuk volunteer in reply to Clickangel]

It might be a better idea if you reduce by only 1mg a time from now on. If you do that, then you should be able to reduce monthly - provided you get no return of symptoms.

[Clickangel in reply to DorsetLady]

Thank You. Appreciate the feedback

[Clickangel in reply to DorsetLady]

Thanks

[Telian in reply to Clickangel]

As others have said it’s time for a much slower reduction now you’re at 10mg. You’re doing good but don’t overdo it.

[HeronNS]

Hi Clickangel. Sounds like you've had a reasonably good start. DorsetLady's suggestion to lower your dose by only 1 mg is good. The standard advice is never to taper by more than 10% of the dose, and going to 7.5 from 10 is 25%! The idea behind the very slow taper in small steps is it helps us avoid flares and having to increase the dose and ending up taking more pred than if we'd just tapered more gradually. Seems we have to fool our bodies into thinking it's still getting the same amount of pred each day! Dropping by 1 mg per month, possibly using a slow taper method like dead slow nearly stop, is the same speed as dropping by 2.5 over a two or three month period, but with far less likelihood of awakening the symptoms. The lower our dose the slower we have to go.

healthunlocked.com/pmrgcauk...

And I know DorsetLady has made her own "simple taper" plan.

[fmkkm]

Welcome 💕

[Meggsy]

Welcome Clickangel. 🌻🌻

[Daffodilia]

Hi - I was diagnosed Oct 2018 - reducing preds ok so far - some aches and stiffness but not too bad

[PMRpro Ambassador]

Welcome - I can only echo the others! Slow the reduction by doing smaller steps!

The fact your blood markers may look OK doesn't mean you are going to be able to drop that much - it just means the current dose is enough. The lower you get, the nearer you are to what you are looking for: the lowest dose that manages the inflammation as well as the starting dose did. You aren't heading relentlessly to zero. It is much easier and more comfortable too use smaller steps and not risk overshooting that right dose and allowing a flare to happen. Flares are often harder to get under control than the start was - mainly because no-one really wants to start over again so you are trying to do it with a lower dose. And the dividing line is small - 10mg may be great, 9mg not.

[Jackoh]

Welcome!

[Quinacridone]

Hello Clickangel, this site is my first port of call when anxious and need advice.It is very easy to feel isolated when suffering from PMR, I don't know one single person who has heard of it let alone understand the implications. This very fact makes it increasingly difficult for me to do the obglitary easing up and resting bit. Running a house, garden, and earning a living as well as resting are nearly impossible as things build up, get out of hand and cause more stress. Vicious circle. Lesson to learn, I rushed it ( 18 mths ) had horrible flare up, felt even worse than before diagnosis ending up now on a much higher dose of pred than ever ! Still don't know how to ease the work load without ensuing chaos.If not at work I crash, sleep for hours and wonder how to make up the time lost.

Any answers to this problem would be gratefully received.xxx

[Clickangel]

Wow! This all sounds so familiar. I’m a massage therapist and by the time I get home I usually crash and sleep at least an hour or so. I have slowed my practice down somewhat and it has helped. I try and get to bed earlier but hard to do. I’m still in 10mg of prednisone.

Went for labs and dr said my numbers were not where he wanted them so I’m still on 10mgs. For another 6 weeks!! Ugh! I honestly think the paleo autoimmune diet is helping a lot! Other than being tired I don’t have too many symptoms. Every now and then I have discomfort but it goes away after I take my prednisone! I really like this site and enjoy reading everyone’s posts! Nice to know we are not alone!

[PMRpro Ambassador in reply to Clickangel]

If your "numbers" are showing inflammation it means you probably need a bit more pred - if the dose is too low, staying at it for another 6 weeks won't achieve much.

[Clickangel in reply to PMRpro]

Thank you! That makes perfect sense to me. Just wonder how I’m supposed to convince my doctor.