So I am very confused. I am on 10 mg and my bloood work just came back high. I feel fine. What does this mean. Did my Dr. drop me too fast? Not a happy camper toay.
ESR is a very non-specific test - all sorts of things will raise it as it is just an indicator that something somehwere in the body is not entirely right. A cold or any other sort of infection is enough, even pregnancy leads to higher levels (not that I imagine that applies!). A single raised ESR or CRP isn't significant if the patient feels OK - symptoms always trump blood tests here. It should be repeated and the trend noted. It will take a couple of weeks to go back to normal if it is a cold - so get it done again next week or the week after and see what it is like. If it keeps rising then maybe some other tests might be called for if you haven't had evidence of a cold or chest infection or maybe a urinary tract infection - they are the most common reasons.
I think this is why my doctor is so insistent that we are treating my symptoms, not my blood work.
Glad to hear. Thanks
My CRP has never changed in the 18 months I've had PMR - regardless of what dose of pred I'm on or how I feel, and my ESR is always fairly low (for someone with PMR)
What your results mean is that the pred is doing a great job of treating the SYMPTOMS of PMR, but it does nothing to CURE PMR - it's still there......waiting.... lurking... like an ugly little beast out to suck the life out of you. Not really, but you know what I mean lolololol
unfortunately I know what you mean. It just sucks. I get so angry that I have this, You all seem so excepting. Good for you.
Love your desription .lol
I am opposite to Karen. I am down to 10mg. Tests have always been low (Dr doesn't share figures with me), but I am .always on the boarderline of pain. Forgot to take pred yesterday - 4 hours later, searing pain reminded me.
Like Karen, I am always confused.
I was going to ask Dr for Alzerheimer test last visit, but forgot
ha love humor
Karen, trust me, I've been angry - very angry, and I still am occassionally. You are not alone.
Time has helped me accept this problem, but I'm still not ok with it.
Getting this disease is like you have to go through the 7 stages of greaving. We are grieving that we have this and one of those stages is anger. I belive we have all gone through it and still occasionally get it again but less frequently.
Be careful that the anger doesn't consume you. Easy to do.
This forum is awesome for solace and questions.
You can fight against PMR and pred all you like - it won't make it go away or reduce the need for pred. In fact, it will probably make things worse because of the stress. Anger is very stressful on our bodies.
Use that energy to work out ways of getting round the downsides of both - we haven't given in to PMR, we have learnt to live with it and get on with our lives. It isn't the same, of course it isn't, but it is just a new normal. And however unpleasant PMR may feel, if you have to have an autoimmune vasculitis as a disorder then it is probably the one to choose. Other forms of vasculitis can not only be life-threatening, they are treated/managed with the same sorts of drugs that are used in cancer which are not nice at all. Pred looks a pussycat in comparison.
It's one of those things. You can't hold back the tide, for example, or stop the sun from rising and setting. BUT, to continue the metaphor, we can make sure we don't get swept out to sea (take our medicine) and we can stop ourselves from getting sunburnt (watch our diet and get our exercise) or lost in the dark (get rest and avoid stress).
I haven't been angry. But I have been very sad. And still am quite often.
Hmm, I don't think I've been sad as such. Depressed, yes. Angry, yes. Frustrated, yes. Helpless, yes.
I feel so stuck between a rock and a hard place. I don't know if I can't/don't excersise more because I'm lazy or fat or sick any more. I am just not myself. I used to be so busy and active, always doing things, but now I just can't be bothered. I don't know if I've just lay down and given up or if it's the disease.
I'm so fat I can't do anything. Or is that an excuse because it's HARD. I hurt all over but is it PMR or carrying all the extra weight?
No matter how many times I tell myself I'm going to do something about it I don't.
I
just wish it would all go away. Ok. I am sad.
I know how you are feeling . i have gone thru all of those emotions. BUt i have decided to be very proactive. i go to a healing yoga totally changed my diet. all organic no sugar, wheat, little diary. and starting to work with corrective trainer for spine and balance. we all know this
sucks, but we need to not let it ruin us. My goal is to be done with in 6 months. i know it is not realistic but just maybe i will be lucky. please do yourself a favor and get proactive. my family is amazed how i am tackling this. i say i have no choice. yes i get depressedand so very angry. as i have expressed on this forum many time. i hope tomorrow is a better day and a new beginning
I did exactly the same after I was diagnosed, and I did feel better, but it all just got too hard - so time consuming and I am so tired I can't be bothered. (not the word I'd usually use!).
i know it is hard. I have days like that. i hope it gets better.
I don't know what you weigh Flip but 4 years ago I weighed 88kg at 5'1" - by anyone's standards rather a lot! I was on crutches because of an achilles problem (due to the GP using a mix of the wrong antibiotic and Medrol) and had spent 3 weeks in hospital to try to sort a severe myofascial pain episode which then triggered atrial fibrillation. I cut carbs drastically and started walking - at first only a few hundred yards into the village and back, slowly on crutches. We built up the distance - to the end of the village, round the short loop, round the slightly longer loop, round the long loop, and then the speed.
It is hard, very hard, but you CAN do it. Just VERY slowly.
And if you analyse it all and decide that yes, you do feel sad, as opposed to angry or other emotions, added to the "can't be bothered to do anything" it is a real indication that you are clinically depressed and you need to talk to your GP in depth. I've been there too - and put on a lot of weight as a result, years ago - and it is a pit that is almost impossible to get out of alone. The trouble is that even that requires the effort to go to the doctor - so get your partner on side too so he aids the process of getting to the surgery and telling the story. I wish I could drop round and pick you up and take you to an appointment.
There is no surprise and no shame that you are depressed - many autoimmune diseases are associated with low mood, even depression. The stress of a chronic illness, of getting a diagnosis and then living with and adjusting to the limitations and possibly pain takes its toll and it is very common for people to become depressed. It is likely to be even worse for someone like you who was so active before - exercise is an important part of developing the endorphins that combat depressive mood. And your lifestyle has changed dramatically - also hard to get a grip on.
Pick up the phone and make an appointment - NOW!
I dont know why Flip, but your post made me put my computer down straight away, get out of the chair and go for a walk. Why did I do that Eileen ? I never quite get round to the walking on a regular basis., but I did it today. How about some friendly trans Tasman rivalry Flip - who will be first to lose two kgs ?