U R all so helpful and I have questions!
Posted , 10 users are following.
HELLO EVERYONE! I feel a bit foolish asking these questions, I was diagnosed with PMR last March, but I'm so forgetful and seem to have an inability to concentrate.
When I read about all your experiences your all suffering so much, the daily aches and pains, I'm wondering why I don't them. ( dumb hey) Within 24 hours of a severe episode I was diagnosed and on 60 mg. It helped after a few days, and I now reduced to 9mg and holding there out of fear. ( a bit lengthy get to the point). My Doc has never talked to me about PMR only tells me my SED rate and how much Prednisone to take. Here comes the questions,
When you are having your pain is it because your reducing your Pred, or is it despite taking it your still having aches and pains?
Are you all confused, dizzy, unsteady, shaking ( people notice), dry mouth skin and hair, bad nails, cry over sight things and weak. It's hard to shower and do my hair, then my shoulder ache and I do feel weak.But no real pain, and/but I have had two episodes, one minor and one very severe at 7 mg and went up to 20mg as per Doc, now I at 9mg.
I'm a newly wed and he's great but my passion is GONE. UGH!
within the last days I've had a fairly painful ache at the back of my head, behind my ear. regular headache meds don't help, so I took a pain pill I have for my back, and I was able to sleep. PMR GCA? I'm calling PCP requesting blood test.
Of course I don't remember all the questions I wanted to ask, I need to start writing things down. btw I will be getting a new PCP and finally found a Rummy who supposedly know a lot about PMR, appointment next week.
Reading all your posts is so helpful and a bit scary, thank you from the bottom of my heart. And yes I too realize how fortunate we are having Eileen, she truly is our angel!
I'm sure I'll be back!
0 likes, 13 replies
EileenH exie61964
Posted
On the correct dose of pred I have no PMR pain or stiffness but I suspect my diet also helps a fair bit - no processed or white carbs other than a bit of chocolate and really just above ground veggies, no fruit.
My nails were rubbish with PMR but improved dramatically on pred - never had such lovely nails in my life! The other things aren't unusual and many people mention them. However - I would be inclined to ask if you are on enough pred - I think the aches and pains you mention should be better, others may disagree. I find the concept of "hard to shower" difficult to understand? I just stand under the water - we do after all never get desperately dirty nowadays! I wrap a towel around me and put on a toweling robe - and wait until I'm dry. Hair - ah well, that is something else, but I only wash it every couple of weeks.
3, Yes, a known adverse effect of pred is loss of libido but there is also the aspect of fatigue and pain associated with PMR itself.
If it was "just" PMR 60mg was totally OTT and doesn't help on the long run. However, when you have a flare because you overshot the dose, you often don't need to go all the way back to 20mg. First try adding 5mg to the dose at which you flared. That is often enough.
exie61964 EileenH
Posted
Eileen, again thank you. I scanned the link you sent and saw GCA connection. I'll read it this afternoon, my head hurts to much. lol. "hard to shower" really should be,
hard to shampoo when I shower. One more question. I had reduced down to 7 mg when I had that severe flareup. My dosage was increased and I have been slowly trying to get it back down to a manageable amount. I am at 9 mg now. If I was able to get down to 9mg before, should that be a safe amount this time, or it can vary? Cant get my PCP for blood test perhaps I should increase to 14mg, just hate to if headache is not related.
EileenH exie61964
Posted
You could try if for a few days and see if it helps - if it doesn't you can go back to 9mg. It depends a bit on how quickly you were reducing - if you reduce too often you may miss the dose that was "right" and overshoot.
exie61964 EileenH
Posted
I was reducing 1 mg after taking dose for a month. head ache really hurts, I'll increase to 5 mg, and see if it helps. thanks again 😃
margot34956 EileenH
Posted
Hi Eileen, I am very interested in the no fruit part of your diet, why no fruit?
EileenH margot34956
Posted
Because there is a lot of sugar in fruit, though berries aren't too bad. If you are aiming for (say) under 30g of usable carbohydrate per day, by the time you have eaten an apple and a banana you have just about got there. And then you would want to have vegetables and dairy products on top of that. Even if each thing has a small amount of carb, it all adds up. So if you are aiming to control weight or the risk of diabetes with a low carb diet - you have to be careful with fruit. All the good things you need are in veggies too - but mostly with lots less sugar.
margot34956 EileenH
Posted
Thanks Eileen, I understand about the fruit now, so not happy about that info as i love fruit and eat heaps of it instead of bread, muffins, ect
Oh Dear, now what to eat
EileenH margot34956
Posted
Look at
https://www.dietdoctor.com/low-carb/fruits
You can have some, some are lower carb than others - but eating unlimited amounts of certain fruits isn't a good idea.
My daughter and I both eat restricted carbs - we eat loads of veggies and only berries if we want fruit. And of course portion size is crucial. There is a big difference between one small banana and one of the sort you usually meet in supermarkets these days, or between a few grapes and a whole bunch!
margot34956 EileenH
Posted
Yes I will be certainly be looking at that. Thank you Eileen
I did think I could eat as much fruit as I liked
maureen07256 exie61964
Posted
Hi so you haven't seen a rheamatologist was just wondering how you are taking your pred , I recognize the dizzy heads i get them too some days its fine I don't have a lot of pain only heavy legs after walking a while ,and lethargy I want to do jobs around the house but its too much effort .I went down to one pred a day but then I had a flare up ,got an emergency appointment with the rhoomy hes put me up to six a day now which has calmed things down .Your doctor has he checked your head i was checked for temperol arterial as this can be quite bad im not trying to scare you , I have a tenderness in my scalp which he always checks. I really think doctors dont know enough you really need a good specialist.I had never heard of this horrible pmr before so i do feel for you x
exie61964 maureen07256
Posted
Hi Maureen!
when this first started I went to a PCP who put me on the prednisone he never suggested a rheumatologist. He never gave me any information about what to do if I have a flareup, frankly I didn’t know what a flare up was, I JUST THOUGHT, take the meds and live happily ever after. Until I went on the internet and also found this sight. Because of all the people here I’m learning much more. I do have an appointment with the rheumatologist a week from tomorrow. I did have a GCA biopsy done which came back negative but that was in the beginning. as the surgeon was cutting my temple open he said I don’t know why I do these procedures they always come back negative. Wasn’t happy hearing that. I definitely feel my PCP doesn’t know much about PMR, supposedly the rheumatologist I’m going to specializes in it. We shall see. Thank you Maureen for you response.
maureen07256 exie61964
Posted
Hi Yes I thought oh great he knows what it is started on 20mg pred marvellous after two days better ,then when he explained the reduction I Thought he is reducing it to get me off steroids as they have done the trick and bad for me to stay on them.After suffering for over twelve months it was such a relief ,I didnt realise the long fight ahead . The only thing I am really scared of is the head problems ,I can cope with everything else as long as my sight is ok good luck its good we have everyone on this forum to talk to
exie61964 maureen07256
Posted
you’re writing exactly how I feel. two days ago I started developing this wicked headache at base of my skull and of course I called the doctor to see if I could get a blood test but he’s out of town. Im nervous that Im getting ready for another flare, so I took an additional 5mg. I agree with your comment on how good it is to learn more about this terrible disease. THANKS for your input.