Frazzled and Frustrated!

hi dear Anhaga,

I don't think I can see anyone else as the other Rheumy is her partner. and quite honestly, I'm not sure I WANT to see a new doctor as it seems that's ALL I'm doing now-a-days, is seeing another doctor.

it's really got me wondering....did I ever have PMR? has this rollercoaster I've been on for 1yr 7mo, been for Nothing? were all the nasty side effects completely unnecessary??😢😢

Arrggg......

Think back. What were your initial symptoms? Did the pred help? If the pred never helped then you probably didn't have PMR. But you've been on pred so long you are having problems tapering fast because your body now relies on it to replace your natural cortisol. If you had PMR symptoms which were relieved by pred then maybe you had and still have PMR, or you had/have a disease which presents with PMR symptoms. In both cases the fast taper is a problem.

Yes! the prednisone was a miracle. within 2hrs of taking it, I was Almost pain free. I couldn't believe it.

I've now got that 'sickening' diagnosis of lymphoma, so I'm not sure if that's playing a part.....OR, worse yet, did the prednisone cause (or contribute) to it??

I'm not even being treated for it yet, as my doctor doesn't feel it's necessary...just wants to monitor it thru blood work till after the holidays!?!

can you understand why I'm wondering if this is one big ball of everything rolled into one?

Except that I believe we've found that prednisone is one of the treatments for lymphoma?

alrighty then. now am I to assume that it's the prednisone that's keeping my symptoms at bay and why the doctor thinks I don't need treatment right now??

Oy, Vey!

I think you need a calm conversation with your doctor, and if you can with someone else with you who can take notes and make sure you've remembered what the doctor said, and whose presence also may help the doctor be more clear and forthcoming with you. Because what we hear from you are conflicting things, which don't make sense really for you and the progress of the treatment of your several significant conditions. I think it would only be fair for you to get some clarity from your doctor regarding your treatment. If you have a companion with you who can support you as you describe the symptoms you currently have this could concentrate the doctor's mind so s/he pays attention because it almost seems, at least from what you say, that you aren't being taken seriously. I certainly don't get the impression that you are being given the sort of support and reassurance that any doctor should provide.

Anhaga, I'm confused. what have I said that's been conflicting?

and when I saw the oncologist to get my dx, my youngest daughter was with me, taking a copious amount of notes. She even had our whole appt on her speaker phone with her friend who is a doctor (in Boston) listening in. so I'm fairly sure I got all the correct info, at least about the lymphoma.

it just seems that since that diagnosis, everything else has taken a back seat.

does that make sense and explain my frustration?

Maybe I'm just confused. I have asked you what your side effects are from your low dose of your prednisone, and I don't think you've said, but maybe you have, ( I find this forum really irritating to use now so I only read a few of the posts). Your doctor is still dead keen for you to get off pred asap, and you say you need to because of side effects - but, what are they? and then you said maybe your symptoms were actually being helped by the pred. So I don't know what to say any more. I won't try to offer advice in the dark any more and I apologise for getting so muddled. I do support you and wish you well, but please ignore everything I've said so far. It was obviously mistaken and if it were a more user friendly website I would just delete my previous posts.

Lynda - I asked my GP, Rheumatologist to share their case notes with me, so I knew what was happening, didn't confuse their advice. It's also worth it to uderstand the process as while docs advise, only you know how your body feels. They need to know this too.

It'll all fall in place - at first, it's all effin' scary.

😁Lol Anhaga, I think we're all confused!

I think it may be my fault.

truth be told, when I first started on pred. it Was a miracle. it was amazing how I was 80%outta pain within hours of my 1st dose.

however, after a few months, the side effects were becoming a nightmare. I gained alot of weight, had horrible mood swings, headaches, insomnia, my cataracts became major problems, etc, etc.

fast forward to last 4-5mo.

I've lost 20+lbs, (still have 20 to go), mood is back to normal......you get the point.

and this is all from going from 15mg to apprx 5mg.

BUT, now I'm in pain again.

I guess what I'm trying to grapple with is, if this is a treatment for lymphoma, am I about to go backwards (with the side effects)?

I hope this is a bit more clear now??

anyway Anhaga, please don't stop sending me your thoughts/advice. they're invaluable to me.❤

Lynda, are you saying that currently you do not have side effects from the pred, which means you do not have to come off pred because if the side effects, but worried you will have side effects if you increase?

yes, I guess that pretty much sums it up.

I'm realizing that this dosage (5-6mg) is really nut cutting it in the pain department, but don't want to go back to the side effects that were so problematic for me.

it's the ole' "stuck between a rock and a HARD place" deal!

and now I'm wondering if.....is it possible that my lymphoma might show up as being more aggressive than thought, if not for the prednisone?

btw, I DID have a bone marrow biopsy already to confirm this diagnosis.

Lynda, some of us have terrible side effects from Prednisone, when I was on 30 mg it was horrible, but I had not been able to walk, on 30 mg I started walking again and after 6 weeks started a slow DSNS taper. I have had numerous flares since then, but double or triple my dosage for 3 or 4 days stabilize reduce the way I increased seems to work for me. Good luck, if you have PMR pain get the inflammation under control quickly it only gets worse. 🙂

It is I believe described as being on the horns of a dilemma. (I wonder what a dilemma would look like if it were an animal?)

What kind of support have you received to help deal with the side effects? Because is sounds rather like you might be okay at something like 8 mgpainwise. give or take a mg or so (and you can keep occasionally attempting to taper until the taper "takes"). But if your other symptoms re-emerge then you aren't really much better off. I'm thinking the emotional and psychological ones must be the hardest for you. Physical ones can usually be managed quite effectively. I'm not suggesting yet another medication but more some sort of ongoing support so when you have a down mood there is someone to reach out to - a physical presence, not just us online folk. Although you know if you have a sleepless night you can always complain to us here!