I wish that HealthUnlocked would post, as part of their website, a simple message to anyone who is fortunate to have PMR go into remission, before leaving, let others know what they were doing that they feel, made it all possible.
Health Unlocked: I wish that HealthUnlocked would... - PMRGCAuk
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It would not be HU but pmrgcauk but I doubt they know. Several people answered another post requesting info on their remission. We explained that if people get well they generally disappear and get back to life without pmr gca. There are thousands probably who get by without the forum who I assume go into remission but we would have no idea. You will feel better if you take enough pred and pace yourself... It won't be perfect, but it will help you live without pain. I do hope you feel better soon. 🌻
DorsetLadyPMRGCAuk volunteer
I don’t think it’s really up to HU, the PMRGCA forum is only one of many controlled by the organisation. Many of the other forums cover illnesses that are life long not like PMR/GCA which is self limiting, so their members are likely to be around a lot longer - so maybe HU don’t appreciate our situation.
We have discussed this before, but you can’t force anyone to stay on the forum if they don’t want to.
Maybe you could ask the Moderators if they would be kind enough to put out a post periodically or liaise with HU to do so - and see if it helps.
PMRproAmbassador
Not something HU have any control over I fear. Another forum does have a "Zero pred" thread which has several stories on it but it rarely gets added to - thousands of people have PMR, relatively few join the forums and those who join come and go as their illness fluctuates. We do ask people to come back at times when they go into remission but in the last few months there have been a thousand plus posts. Something like that just gets lost. Be grateful, 12 years ago there was only one forum and no charity.
Perhaps you will gain some hope from skinnyjonnys story. If you look at his posts he has been climbing a mountain to raise funds for pmrgcauk after going into remission.
As the others have explained, once people start getting better and/or recover or go into remission they tend not to Post......
There is a Post on the Pinned Posts, on this very topic, l can’t access it from my phone to send it to you but you should find under Pinned Posts.
Kind Regards
MrsN
Blackcat1M in reply to
Hi MrsNails, hope you are well how is things with mtx.
I had a three week period off mtx due to taking penacillian, and have had to have bloods done as I have had more bruising than usual get the results Friday , so fingers crossed all is well.
Kind regards BlackCat
in reply to Blackcat1M
I will PM you x
There is this to be going on with. Go to Dorothy's story. And perhaps I will have a good search for the creation of a remission based pinned message next week.
I have just scrolled to the top of this page and clicked "posts." Nd typed "misdiagnosed pmr". Several different posts came up. They may help you. We do asked people to return and tell us what their main symptom were and how they got new diagnosis. We can then help people like yourself who may have been misdiagnosed. We have a couple of people that have different autoimmune conditions who pop in.
People have done so. I agree it’s heartening. I can think of a few off the top of my head. Some have come back because they went down too fast.
I am guilty of reading posts and just liking comments but rarely commentating myself unless troubled by symptoms or need advice. I'm just thankful this site is so informative and friendly and it's taught me to accept the ups and downs of illness I'd never heard of before having.
I will post when I start to feel positive my pmr journey reached my get off stop. Big thanks to the moderators and group for helping me understand and deal with PMR.
Have a look at PenelopeVita-Finzi Posts from 3months ago & then again from 2months ago
DorsetLadyPMRGCAuk volunteer
Mine is very well documented - in posts and replies !
I have been off prednisone for about 8 months I still see my rheumatologist every six months as my legs never seemed to get better due mainly I suppose to osteoarthritis but I have no pain as such unless I try to go up or down stairs it is a mystery to me why my legs are like lead and don’t want to walk very far. He has suggested that I start with my physio once again as he really feels I do not have polymyalgia anymore . So that is my next goal I will start in the New Year and make my legs work properly. Happy Xmas to everyone and hopefully a pain freeNewYear.👍💐🍾🏃♀️
Can I ask how long you were on the prednisone? You might want to try CBD, I, myself,
was totally against any type of marjuana until I came down with PMR and discovered you are far safer on CBD than most prescription drugs; my daughter uses it for her fibro
The use of cbd oil is dependent on which country people live in.
I have been off prednisone for about 8 months also.....and still find that my muscles aren’t close to being recovered. We have been told many times on this forum that pred causes muscle weakness. Although I have been trying to walk briskly every day, I think I need to do much more to get stronger.
I think Your idea of physio is good but I’m pretty convinced that more exercise than that is required......like a weights routine, frequent yoga, swimming, etc.......something that really gets our muscles working!
I put a post on 2 days ago because I am in remission. I will try to find out how to pin it but I will copy it into a new post
We regular blokes can't pin things. I personally think there could be a pinned thread about "zero pred" to which individuals could contribute.
in reply to HeronNS
It's just as easy to search for zero or remission etcin posts as you get some sense of history then and can chose to look at the poster profile and see how they did it and what sort of replies etc they got. Not everyone in club zero tells us or lurks on the forum but always welcome to share stories. The more pinned posts there are the less they mean so there is guarantee things will be pinned.
HeronNS in reply to
I actually don't care. I think you mean this reply for person who made post? Or Jannie?
Even if were to pin an article on zero pred you would still not be able to add to it. If everyone added to it, it woiled become huge and nobidy would find anything.
I'm not interested. It was a suggestion to Jannie. Please reply to her. If you look at Patient, they have a zero pred thread and it wouldn't be unwieldy if people didn't keep chatting about stuff that isn't zero pred stories.
I think there are too many pinned posts on this forum, by the way.
I thought as you had commented you must have been interested in the subject. Thats fine to have your opinion on the pinned posts.
No Jannie mentioned that she was going to try to pin her post. That's all. Thanks anyway.
Thank you Heron and poopadoops for the information.
in reply to jannie21
I have private messaged you jannie21. 🌻
I am reposting this on your posting as I posted it a few days ago on a separate post and mysteriously I don't think many people received it. It is probably due to being of a controversial nature to some on here.
Here is the post;
A few days ago a person was wishing to hear about people who are now in the 0 Predisone Club. At this point I feel that I can tell you about my personal experience. You will have to look on my profile to hear about how it started and how BAD it was. I have been off Prednisone for about 10 days now.
I started at 20 mg for a couple of weeks and then down to 15 mg. I went faster than my Rheumy had suggested and if I felt ok I would drop some more. I kept forging ahead and had one flare at 7 mg. at about 3 months along and then went to 10 for a couple of weeks and then continued going down by 1/2 mg. every 10 days depending on how I felt thereafter until I got to 3 and then went down by 1/4 mg a week to zero. IT WASN'T EASY as I had pain and soreness and fatigue continually but yes my whole goal was to get off of Prednisone before I got a co-morbidity from it. I know that this will make a lot of ladies on here's hair stand up on end, but do you want the truth or not?
I turned to God knowing that he was in control of my future and felt he allowed me to suffer this disease to wake me up to the fact that I was putting him on a shelf in my life instead of communing with him daily. When you are put on your back you look up.
My PMR beginning date was March 22, 2019 and I had weened off by November 24th 2019. Almost exactly 8 months! NOT BAD if I say so myself.
The last 2 weeks I have had SEVERE EXHAUSTION day and night without sleeping well and I thought it must be my adrenals. For 3 days I barely got out of bed! I have a finger oximeter that measures heart rate and oxygen and shows the zig zag heart beats on a little graph. I put it on and it was beeping because my heart beats were below 50 per minute. Bradycardia. I also was feeling like my heart was fluttering and skipping a beat now and then! My oxygen seemed to be holding though even with such a slow heart. It was like this for 4 days so I got depressed and prayed some more. I rested a lot and made an appointment with the GP. She was going to order me a heart moniter to wear and get me a synacthen test. Long story short before I got this heart monitor or the synacthen test my heart rate went up and I stopped feeling the skipped beats. I am feeling energetic and GOOD and so I am overjoyed!
One more note, I did exercise (walk mostly) during this whole ordeal whenever I could and lately I am even able to do some of the tough exercise tapes that I used to do. My figure is almost back and I might even get myself a little botox and some new clothes. I am saying all of this to let you know that you can have a TOTAL comeback. Oh sure I could have a relapse but I am going to live without fear daily thinking about it. I will post in a while with any updates and I am praying for all of you to get through this too. God Bless
in reply to lemarie1
It was posted and whoever wanted to reply did so. Its good you have put it here now so the stories are all together.
thankyou so much for sharing that information, means a lot to me as i am at the 6 month mark with Prednisone, I managed to totally ween myself off, but the flare up forced me back on it at 10 mg and now I'm not certain at what point to I start weening frm that or how much pain is an okay level to be at; I have a high thresshold for pain, but then I'm concerned it might be harming my body to be that inflammed.
If you have only had PMR for 6 months you are likely to need pred for some considerable time - only 1 in 5 patients are able to get off pred in under a year and they are more likely to have a relapse than people who stay on pred longer. By 2 years about 1 in 3 patients are off pred. But there is no way of knowing in advance whether you will be a 1 years person or a 5 year person which is how long about half of patients need. Nothing you can do will speed up that process, if you stop the pred you will get a return of symptoms.
The level of symptoms you achieve after a month or so at the starting dose is your guide - at each reduction you shouldn't feel worse at the end than you did at the start. The smaller the steps down and the more gradually you change the dose the more likely you are to be successful. You can't hurry this unless you want to go back to the state you were in that sent you to the doctor.
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