Hi again, So I'm going to make an assumption that anyone reading this already is up to date on my story. So, I saw my Rheumy on Thursday. I told her I'd been able to get down to 3mg for about a month but had a flair and with the help and info (and my own decision) I'd obtained from this forum, I went back up by 5mg. she was NOT happy. however, she also was aware of what a TOUGH few months I'd had (and continue to be having), she understood. but her instructions were to immediately decrease by .5mg everyday till I'm back to 3mg, then stay on that for 2wks....then down half mg. every week there after. she said I was a "very complex, complicated case", due to all my problemsđ˘đ˘. Well DUH!! but I Sure didn't ask for ANY of this! anyway, (I know I'm rambling...sorry), today my right shoulder and my right jaw (1st time) are 'killing' me! I'm SO tired. I don't want to be in pain anymore. I'm completely overwhelmed. any words of advice or just kind words would be GREATLY appreciated. I'm trying so hard to not 'dump' any of my fears on friends and family. thx, Lynda
dump away because thats what we are here for and we all get it we can all relate to almost everything posted on here with regard to this horrible disease lay people ha ea difficult time because if they cant see the disease, which they cant or never heard of it,most havent then how could they relate or understand as for rheumys, most probably donât know half as much as we do because when its you, you are bested in findimg out everything there is to know about this debilitating long term disease
thank you ina0821âŚ
you are Soooo right about if you donât look like youâre âfightingâ a disease, people forget. In my case, the only âgiveawayâ is this crummy oxygen situation, (the cannula is a HUGE CLUE!
but even that doesnât speak to my breathing difficulties cuz if Iâm sitting and relatively still, my breathing is fairly normal.
But the rest of it I really try to play downâŚI donât want to be defined by my illnesses!
Iâm starting to feel people slowly pull back from me as I can never go out with them anymore. friends will ask me out to lunch or dinner and Iâll say yes, as I REALLY want to go. but, ultimately I end up canceling cuz I just donât feel well. I get it. Iâm screwing up there plans as well, and I end up (not only feeling physically awful), but feeling SO GUILTY.
WOWâŚIâm so sorry. I got WAY carried away.
you just got âdumpedâ on!
Iâm not liking myself right now.
Sorry
your doctor sounds like a twit. thats the fastest reduction ive ever heard! dont know what your other options might be for care, but she doesnt sound right to me. of course youre going to flare on her protocol. i know i coildnt tolerate it myself.
isolation: when i first got ill many years ago, my husband told me that isolation was going to be my worst symptom. i told him no wayâive always been the ringleader, the one making the plans, leading the pack. yet here i am, terribly isolated because: people dont visit the sick. for all kinds of reasons, not even my nurse friends. they just dont. one time my husband ran into one of my friends who asked how i was doing, said she hadnt seen me forever, said she was gonna have to visit. my husband said, âif you do, youll be the first.â she never did.
so i know what you are going through and if we lived closer, i would visit you and drive you crazy so there!
âshe was NOT happy.â Who cares? It is not your job to make her happy, but it is her job to help YOU with pain. I would go with symptoms and take care of pain regardless of her request for reduction. If you need 5mg so be it. What difference will it make if you are on 3mg or 5mg in a long run? But it makes huge difference on your QOL now. That would be my advice .
I have had pmr since 2004 . I started on 20mg of predni solone but managed to get down to 3mg eventually but found I was better on 5mg which I have stayed on for about 4 years, at the moment I am trying to reduce again, went down to 2mg but was in a lot of pain, so now have increased again to three. I donât think at the moment that I will ever be free horrible pain, but will keep trying.
Hi lynda62707
Hey less of the âbotheringâ glad to hear from you. Feeling for you and the position you are in, as you say you didnât ask for it. Obviously your rheumy wants you to be off pred so do as she says she is the professional. Your not only dealing with PMR but lymphoma aswell not a good place to be, but with lots of love and support you will come through it and you have that from me dear friend. Check in anytime you wish you will always get caring folk who will listen on the forum. Keep smiling, keep positive..sending tons of love and good caring thoughts your wayâ
xx
Lynda,
Did the pain in the shoulder and neck go away when you went up to 5? If so, Iâd find another doc.
Is 5mg working? If so, your rheumy is not doing a good job and really ought to get up to date! At 5mg and below the adverse effects are minimal - but the benefit for the patient can be immense.
Are they going to do any treatment for the lymphoma? It is rare but both Hodgkinâs and non-Hodgkins lymphoma appears in the medical literature as a cause of polymyalgic symptoms. Treatment of the underlying lymphoma then led to a resolution of the PMR.
You are a complex patient but that isnât your fault and since you have a management that works, she should be letting you continue, at least for the present.
I suppose there is no alternative to her?
What is wrong with the woman? It is doctors like that, that you wish PMR on, which I suppose is not very charitable of me, but for goodness sake, she should learn a bit about the illness, she is a doctor after all.
TwopiesâŚLol!
I wish we did live close together!
I think you need to find another Rheumy, Lynda. Iâm sure they wouldnât put up with unnecessary pain so why should you?
As far as friends go I would be saying something to them about wanting to go out but although the spirit is willing the flesh is weak. It is important that they realise you do want to go out with them and ask them if they will keeping inviting you because there will be times in the future when you will be able. At the moment you donât know when that will be but you still want their friendship. One day it could well be the other way round.
ArrgggâŚthis is all so confusing!
if I could turn back timeâ
!
Dearest Mary, you are TRULY one of the kindest, most caring people Iâve ever âknownâ!
and a little bit âgoofyâ (such as I), makes you that much more appreciated by me!
I wish we lived close by.
thank you for your kind words. they are REALLY needed right now. Iâm so scared of whatâs around the corner, and trying to keep it all together is exhausting.
please keep me in your thoughts; and keep posting.
.
I use the dead slow method and was stuck at 2.5 mg forever it seemed, following a flare. Something like two years. I finally decided to try tapering by repeating each step of the DSNS method. This means each .5 mg takes 3 months to taper, but Iâm now approaching 1 mg, so it seems to be working.
I did the usual little google search and have found that prednisone is, if anything, likely to be helpful if you have lymphoma. There should be no need for you to taper too quickly on account of that diagnosis. As Eileen says, if your PMR symptoms have been caused by lymphoma then the symptoms should be alleviated as treatment is given for that condition and then the pred taper will be much easier. As long as you can access the amount of pred you need I doubt there will be harm to you in keeping the dose at a level where your pain is manageable. Hugs.
Patricia, actually Iâd gone up BY 5mg to a total of 8mg.
and yes, it worked like magic!
but when I told her that, she said, âprednisone will take away any type of pain; so of course if you up your dosage, youâre gonna feel better. I want you off this, so you need to follow these instructionsâ.
Arrggg!
hi Eileen, No, at the moment my doctor is just monitoring me. Iâve got to have bloodwork every month (just had it last Thu. and am waiting for results). He said if thereâs no changes by 1st of year, weâll figure out where to go from there.
they also think I may be having some internal bleeding as about 2mo ago, I had to have a blood transfusion due to being almost void of iron (I think it was less than 10).
Next on âthe listâ is an endoscopy and colonoscopyâŚoh yay! can hardly wait! 
thanks SilverâŚI do most certainly tell them how much I want to go (BECAUSE I REALLY DO!)âŚIâm (or used to be) a Very social person.
I will take your advice about continuing to ask me thoâ. Iâve not done that and probably need to.
thanks for the reminder.
Hi lynda62707
I will check in on you from time to time as if iâm knocking on your door for a coffee and a chinwag. You also knock mine. I read your other posts and see you have been through the mill alright! All this must have sure taken it out of you, you must be feeling quite fragile, itâs no wonder your not up to going out. You need to save all your energy and rest up as much as you can but do have the odd walk if you are up to it.
Itâs hard for others to comprehend how you are feeling and what you are going through, but you do have friends on the forum who can empathize and understand your situation. Keep posting..sending gentle hugs and loadsaluv with kind and caring thoughtsâŚstay positive.