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
elizabeth40672 lynda62707
Posted
Oh Lynda what a terrible story but I was relieved to read that your daughter is pulling through, the one bright light in this story. What I can say from what I have read on this forum that any trauma can cause a flair so I would not be surprised that your current steriods are not working. I also know that upping them for 10 days or less can allow you to bring yourself back down quicker although I am not sure if this would work in your case.
You need to wait for some more advice from others far more experienced than me but I hope you get your lymphona sorted and your pain back under control.
Take care and keep fighting!
Elizabeth
lynda62707 elizabeth40672
Posted
thank you so much Elizabeth for your quick reply.
yeah, I've ABSOLUTELY been under about as much stress as I can handle.
I see my Rheumy next wk., so I guess I'll see what she has to say. I'll keep you posted.
elizabeth40672 lynda62707
Posted
Seeing my Rheumy today. Hoping for a solution to my all over body pain but as he wont believe it is PM as it started when I was 47 I'm now 52 I am stuck between a rock and a hard place as they say. Almost off steroids - 2mg which is what they want because of Osteoporosis but if I need them to feel better I don't know what I will do. However reading your story I know I could be a lot worse! I hope you are feeling better soon!
lynda62707 elizabeth40672
Posted
good luck with your doc. appt.
lately, I feel that's all I do......go to doctor's appointments. so tired of the whole thing.
and don't ever dismiss what your troubles are.....it's all relevant.
what each one of us is experiencing, is awful for us.
I hope you get some relief from your pain soon.--L.
Mrs_Hobbles lynda62707
Posted
Oh Lynda, you've been through the mill and your poor daughter, what an absolutely horrendous thing to happen to her and NO diagnosis!! I'm so sorry to hear about your own diagnosis too! As to the flare while being on the same dose, I would say it's been driven by the stress that you've been through, to be honest! I suppose with any flare, the only way to get the better of it is to increase and then the question is whether to increase for more than a week when the reduction would be slower. That'd be my gut feeling really, increase for maybe 2 weeks to get riding the inflammation and then reduce again, and I'd think about going to at least 10mgs if not 15mgs, then work down in 10% increments to 7.5mg, then DSNS method after that. We all struggle with having to increase when we've managed to get so low, but often times very low doses just don't cut it when the condition is still there. The experts will be along later and you can make a decision based on all the advice you receive but to he honest, the sooner you increase, the better for yourself. I wish you nothing but the best moving forward and hope everything will pan out in the most positive way!
lynda62707 Mrs_Hobbles
Posted
hi mrs. Hobb....I hate the idea of going back up to 15mg.....that's what I Started at! Arggg!
I see my Rheumy next wk., so I'll see what she has to say.
she doesn't even know about my lymphoma yet!
I WANT MY LIFE BACK!!
sorry, I'm having a tough time with all of this.....feeling a bit overwhelmed.
mary19068 lynda62707
Posted
Hi lynda62707
My oh My if it don't rain it pours. I am so sorry to hear about your diagnosis lynda and what you have been through with your daughter so glad she is well now. What a shock for you and your family with the lymphoma diagnosis. My sister-in-law was diagnosed with it many years ago and recovered from it, she is fine now and you will be fine too because your a strong and positive person lynda so keep positive and strong.
Regarding the PMR flare, if the pain is really troubling you go back up a few mg. As you know i just carried on and put up with the pain just to get off pred. In your case i would go back up until you reach and dose that will ease the pain. It's great to hear from you lynda even though under adverse circumstances. Sending heaps of love and good thoughts your way.....❤👍😚
lynda62707 mary19068
Posted
Hey Mary, hi my friend! so great to hear from you.
thank you for telling me about your friend. I Really need to hear some positive things right now, and it was great to know your friend is doing well.
I didn't tell y'all half the things that I've been struggling with over the past few months, as it just would've taken to much time.
just suffice it to say.....BRING ON 2020! 😁🍷🎉
mary19068 lynda62707
Posted
Hi lynda62707
Yes, it was my sister-in-law but she is also a very good friend. If you want to tell me about the struggles you have been through feel free...i have a listening ear. It's therapeutic to share your troubles hence the saying "a trouble shared is a trouble halved" that is soooo true. Well you still show in your writing your happy, jovial self keep it up it's good therapy....hope all has settled after the horrendous fires last year. Anyway, feel free to offload anytime....lotsaluv and good wishes...👍😍😊....
lynda62707 mary19068
Posted
hi again, I'll D/M you later, it's about 100o right now and I'm sooo uncomfortable.
I don't want to burden all these fine folks with my troubles, but you asked for it!😁 Lol
mary19068 lynda62707
Posted
Hi lynda62707
If going through and talking about all your past struggles will be stressful and tiring for you it's ok leave it be. Don't want you to get stressed it will make you flare worse.....try and stay s stress free as possible.....
BettyE lynda62707
Posted
Lynda, reading your horror story I think it would be incredible if you didn't have a flare and have to up your Pred. dose.
This is one bit that you CAN do something about so don't think of it as a failure. I doubt there is anyone on here who has not had to up their dose and usually more than once.
Your daughter's recovery sounds like a miracle; let that give you confidence.
lynda62707 BettyE
Posted
thank you BettyE! you're right. it was nothing short of a miracle.👼👍
missmagwumps lynda62707
Posted
Oh poor you Lynda - when it hits the proverbial fan it surely does sometimes eh!
So pleased your daughter made a great recovery and you can get on with your treatment for your Lymphoma...AND get your Pred back up to what your body considers an acceptable level just now!
I came off Pred in June after a year and was great for a while and def thought my initial problem wasn't PMR as my symptoms were not typical....so a year on Pred with sooo many side effects for nothing I thought !
SO off the pred surgeon agreed to do my back surgery on 24th July and subsequently I had a massive flare up - sort of a creeping paralysis....couldn't get out of bed, lift my arms to brush my hair or pick up a cup without using two hands and an extreme arthritis pain in right ankle ....so doc says 'now that does sound like PMR' - so wham back on 15mg dose of steroid and she thought probably triggered by the trauma of my spine operation! Fortunately Pred kicked in after about 10 days but am not out of pain yet and my blood works are all out of kilter - red & white mean cells mainly and each in opposite and wrong directions.....yet my gp still wants me to start reducing to 12.5mg ! How is that right until I can get more relief?
I am truly struggling now and sincerely hope there's nothing else going on in the back ground.....while I wait for the NHS cogs to move at their usual slow pace....far too busy as they are, you do eventually get the best care if you question and keep your wits about you....
I wish you well Lynda but the point of my post - thought it took a while to get to it ha - was yes...stress /trauma can bring on a massive flare - of that I am sure.....now!
Keep us informed of your progress Lynda and hope you can start your lymphoma treatment very soon....my young great nephew had 2 very rare types and they didn't quite know how to treat him as only a few cases like it here - so they threw the book at him...gave him as much treatment- as was required - if not more - and he is now in remission...bless him and bless you...xxx
lynda62707 missmagwumps
Posted
thank you miss mags!
I'm sorry you had to go back on prednisone after being off it successfully.
how's your back doing now?
one thing I didn't get into in my initial post is, due to my daughter's "brush" with death, I've been alone for almost 3mo now. besides the obvious, (being a bit lonely), she's the one that does the "heavy lifting" in our family, and that includes taking our 2 dogs out everyday for walks! my dog has put on a few lbs. we live in an upstairs apt. and it's just so dang painful to go up/down the stairs.....Arrggg!
it's amazing how one problem turns into another and then another. I've pretty much put my life on "hold", and just tried to keep all the balls in the air!
Stressed??? YOU BET!