Somethings never change--unless they get worse!
Posted , 16 users are following.
Hi friends...it's been quite awhile since I've posted anything. that's cuz I've been living a nightmare over the past 3mo.
I have a question (pmr related), but if I may, l'd like to bring you up to date....
short story version!
about 2mo ago, I called 911 as my daughter was completely unresponsive and burning up with fever.
she was in the hospital for 24hrs when I received a phone call saying if I wanted to say my "good-bye" I needed to get to hospital asap! "WHAT"!???.....I no longer have a working car, and all my friends are scattered all around the bay area. I was Frantic! (also, had no $$ for a cab!)
I called my other daughter (who lives in Texas) and told her what was happening.
30m later, she called to say she was on her way to the airport.
fast forward, when we got to the hospital, my daughter was in a comma, on a breathing tube with all her organs shutting down. we were asked if we wanted to just have her kept comfortable, or continue treatment. I JUST ABOUT LOST MY MIND! she's 43, nothing had happened and they didn't have a clue as to what was wrong.
I'll get back to that in a min.
3 days later, I had a doctor's appointment. I was told I have lymphoma. (thank God my other daughter was with me). as the tears streamed down my face, the doc pat me on the knee and said don't worry....if you've got to have this, you've got the "best type"! was he friggin kidding me?
he went on to say my type is the slowest progressive type. he's had one patient for almost 10yrs. this didn't help me feel ANY better at all!
in any case, he wants to "monitor" it for the next several months by having monthly bloodwork done.
back to daughter #1.
thru nothing short of a miracle, she pulled thru!! she was on dialysis for 4wks and is still not home. she's been at a physical rehab ctr for the last 7wks. they never found a diagnosis.....chalked it up to one of those 'pesty 'ole viruses'!😣
ok enough.....I've been on 3mg of pred for about 3-4wks and doing fairly alright.
that is until about 3da ago.
I'm in such pain....my knees, elbows, SHOULDERS and BACK....Ughhhh!
my question is, can you get a flair after being on the same dosage for several weeks?
I was so happy to be on my way to going off prednisone, but now I have my doubts.
any thoughts or advice would be appreciated.
thanks to everyone who took the time to read this.
I hope you're all doing well.
💕Lynda
0 likes, 30 replies
EileenH lynda62707
Posted
You really have had two awful experiences, I'm so sorry and I do hope it all continues to progress well and your daughter makes a full recovery - that really is a miracle.
The answer is yes - you can either overshoot the dose you need or the disease activity can increase for no apparent reason. PMR is like that, rather unpredictable. But any one of the things you have written about is enough stress to trigger a flare by its effect on the immune system.: your illness, your daughter's illness, the ongoing stress of the whole thing.
Lymphoma is one of the illnesses that can underlie PMR symptoms so it is possible that it is related to that but there is another factor to bear in mind now - you have been on pred for some time at levels that would affect the way your adrenal glands function. That may be the reason for this increase in symptoms as lack of cortisol can cause aches and pains too. If it were me I would ask my doctor about getting the adrenal function checked out.
If it is a flare or you decide to try more pred to find out if that helps, the first thing to try is adding 5mg to the dose where you flared. Very often that is enough and you don't have to go back to the starting dose - which I'm sure would be a relief to you.
lynda62707 EileenH
Posted
thank you Eileen....I really appreciate your input.
I just upped my pred. 5mg (total 8mg). we'll see how that goes.
I do see my Rheumy next week, so I'll see what she thinks. how do you have an adrenal function test? is that bloodwork?
EileenH lynda62707
Posted
Yes - called a synacthen test. They take a baseline sample, give you an injection to stimulate the adrenals and then another blood sample. They put a butterfly in - only one needle. People have been known to drop off to sleep during it!
lynda62707 EileenH
Posted
hi Eileen, ok, I took the 5mg of pred.....total 8mg........it worked!
I'm not sure whether to laugh or cry. it was just like the almost 2yrs ago when I started at 15mg. it worked within a few hours!
I was feeling so good about getting down to 3mg for several weeks......I was finally seeing the light at the end of the tunnel. now I'm wondering, what does this mean? how long before I can start another taper....how long do I stay at 8mg?? Arrggg
I'm asking you because your WAY more knowledgeable on all this than I am.
HELP!!
Royall lynda62707
Posted
hi Linda. You poor thing you have been through a lot, but am so glad that your daughter is okay. i like you think that i am having a small flair i have been on 4mg a day but am getting quite stiff when i stand up after sitting and my neck is a little painful . I wish you good luck
Twopies lynda62707
Posted
i wish you knew how often ive thought of you--i cant add much in the way of advice as to what others have said, so will just send you healing thoughts. for your daughter too.
lynda62707 Twopies
Posted
thank you Twopies....that means ALOT to me.
I've been very sad lately, and when I hear someone's been thinking of me, it makes me smile.
actually, if anything good has come out of all this, it's made me REALLY appreciate each day, (which is all any of us have). I've ALWAYS felt that way, but when everything falls on you like a ton of bricks, it takes on a Whole new meaning!
I'm also learning (still a work i n progress) not to "sweat" the small stuff. in the overall scheme of things, they don't matter anyway.....but, like I said, that's still a WIP!😉
Michdonn lynda62707
Posted
Hi Lynda, you really have had a terrible stressful situation. I thought and prayers for your daughter and you. It hard to believe that amount of stress would not have caused a flare. My formula for addressing a flare, double the current dosage for 3 or 4 days, no relief triple the current dosage 3 or 4 days, no relief quadruple current dosage 3 or days. Then reduce dosage in the reverse of the increases. So far the method as worked for me. Also I do not reduce if I have any PMR pain. Good luck to you and your daughter. 🙂
Anhaga lynda62707
Posted
Sorry to be so late replying, have just seen this. I was thinking about you the other day, wondering how you were. So very sorry life has been so tough lately and fingers crossed things start to get better soon. As for the PMR, you probably know I am never one to encourage people to increase their dose unless absolutely necessary but under the circumstances, (but please check in with your doctor as soon as possible) I think you should take as much more as you need to get your symptoms under control. you may only need the extra for a couple of days. I know it's been hard for you to get your dose down, and pred has been hard on you, but right now it may be your friend, not an enemy. The standard suggestion is to take 5 mg more than the current dose. I was advised to do this when I had a flare a couple of years ago, but I pussyfooted around with lower doses, and in the end, after a couple of months, I had to bite the bullet and take that extra 5 mg. I didn't get back to where I'd been for quite a long time, but I did get to a dose just above it very quickly. So, maybe 8 mg for three days, then drop by a mg every couple of days and, if things stay okay, stop just above your last good dose, say 4 mg, and use a slow taper when you feel ready to taper again.🤗
lynda62707 Anhaga
Posted
hi my dear Anhaga, I've been thinking about you (and a few other's) as well.
I've wanted to jump on the forum several times, but quite honestly I've been so overwhelmed.....well it just seemed to long and complicated....and I didn't even get into half of everything!
anyway, a couple hours ago, I "caved" and took 5mg more--total of 8mg today. low and behold, I feel SO much better. oh God! does this mean I'm gonna be stuck at a higher dosage forever? I was just beginning to see the light at the end of the tunnel.😢
please keep in touch....with my daughter still in the hospital, I'm feeling kinda alone right now. It's been a LONG few months!💕
Anhaga lynda62707
Posted
Taking the extra pred right now when you need it does not mean you will be stuck on a higher dose forever. You need what you need, and one day, soon I hope, you won't need so much. Even so, 8 mg is not such a big dose, it's very close to what our body normally makes. It's a tool to help you manage better, in a way just like a crutch or a splint or a sling for a broken leg. You use those when you need them and when you don't you discard them Of course we can't just throw away the pred, we have to remove it slowly from our lives, but that day will come. 🌞
Michdonn Anhaga
Posted
Anhaga, I try take enough to control the inflammation and not let it get ahead of me again. My Rheumy gets upset with me, but I PMR pain free. I really do not care how long it takes me to get off Pred, I want to live a normal life without PMR pain. AND SKI! 🙂
Silver49 lynda62707
Posted
I'm sorry to learn that you are having such an awful time, Lynda. It must be a relief to know your daughter is on the mend. It will have taken its toll on you, even more so, as you have so much of your own heath issues. My PMR was diagnosed shortly after a close relative had surgery and it was touch and go whether they would make it. The PMR was already there before then as I later realised but I think that was the proverbial straw!! On the lymphoma front I know of many people who are doing well and one in particular 30 years after treatment. I occasionally see them and they look so good every time. A relative, by marriage, is going through treatment at present and they were told if they were to have any kind that was the best for outcome. I can remember hearing that many years ago. I know we are all different and react in different ways to illness. I wish you well for the future and hope that your PMR continues to improve with the extra dose of Pred. Stress does affect our bodies in so many ways and sometimes we need that extra to see us through. Try to think of it as a friend giving you the lift you need at this time and not an enemy to be got rid of quickly. Best wishes.
lynda62707 Silver49
Posted
thank you Silver. it gives me hope when I hear of stories such as you have about people you know. it's so easy to get scared and depressed when you get a diagnosis such as I recently got. you tend to feel very alone. then combine that with the pmr and the breathing problems I've got.....it becomes overwhelming.
take care of yourself and again, thank you!
Flutterbie57 lynda62707
Posted
So pleased to hear your daughter has pulled through. Onwards and upwards for you both, I hope.
.