Feeling down: Went on Saturday for my follow up... - PMRGCAuk

PMRGCAuk

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Feeling down

Stifffingers
Stifffingers

Went on Saturday for my follow up appt with my consultant ( Private). He was a little perplexed that I was really no better. Felt that maybe my gut was not digesting the Pred aswell as it should , so suggested an injection as a booster. Still carry on tho , with 15 mg a day., which I do with breakfast.Said I should feel the affects in 48 hours. All day y’day my fingers were tingly. Today I feel no great difference. Yes I can make a fist, yes I can walk, but my arms wrists and shoulders hurt . Feel exhausted from a short trip around a supermarket.Came home ate, and fell straight to sleep. Told him about my Pool walk .He said it was something I should not do , nor bike ride Go Running ( LOL) . I questioned him why he never said this at our first meeting??Wanted to do a chest X-ray? I said No. Just seemed to be building up a bill .

Did say my blood reading of 26 has reduced to 6 .. so the Pred must be working ! Really?

If no better come back in a week

Otherwise in 3 weeks for another Pred shot.

And a blood test 5 days before any appt

Any advice folks. ???

17 Replies
PMRpro
PMRproAmbassador

Find a different doctor. Who thinks and doesn't just have cash resister eyes. Oh yes - and who understands that it doesn't matter whether you are absorbing it all - you need more than 15mg to start with, and you see how much is needed. If it is very high - think again.

rheumatology.org/Portals/0/...

See Recommendation 3 - lowest effective dose in the range 12.5-25mg... Exceptionally, 30mg.

We did suggest that you were overdoing it for the moment. FIRST you have to get the symptoms under control, whatever they are. THEN you can think about doing exercise.

Stifffingers
Stifffingers in reply to PMRpro

Thank u

I posted a reply @ Purple crow

DorsetLady
DorsetLadyPMRGCAuk volunteer

He is right - the reduction in blood count shows the Pred is working - but maybe not as well as it should, or you would like. But not everybody gets 100% relief- but you should be getting at least 70% relief. Do you think you are achieving that? As we said in reply to your last post - and he confirmed - you’ve overdone things and now need to give yourself a bit of time to recover. Not everyone feels better immediately- give the drugs a chance to work.

You may be one of the unfortunate ones where it takes s little longer.

Can’t gauge 70%. I guess so?

Been taking thes a month now. Is this not long enough.?

My physio ( a freind) no money exchange feels he can help treat with massage sessions? The Dr advised against as it pushes the blood around? Only gentle massaging.

Do you have a view on this?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Stifffingers

A month should be long enough, but you have to realise you have a serious illness and cannot just carry on as before.

Just because you can’t see anything wrong doesn’t mean there isn’t! If you had a broken leg, you wouldn’t try and run a marathon would you? No of course you wouldn’t, so just stop trying to be superwoman for a while and take life in the slow lane.

And as PMRpro says get a doctor who is concerned about you, not your wallet.

You may find physio helps, but whoever does it needs to be aware of your PMR and not be too forceful, otherwise you’ll feel worse rather than better.

PMRpro
PMRproAmbassador in reply to Stifffingers

"The doctor advises against this as it pushes the blood around"

Well REALLY? Thought the heart did that!!! Is this your private consultant? Wanting to keep your pain for himself?

Massage may not help PMR itself - but it can sometimes help the add-ons. HOWEVER - beware that sometimes massage can make the PMR feel worse in the short term - mainly because it will release inflammatory substances from tissues into the system and it can feel like a flare until they are dealt with. I find deep massage very useful - but I've been having it for years and know what to expect. Wish I had a friend offering sessions! I would say try it - at a very gentle level but definitely ask him to look for spasmed back muscles and myofascial pain syndrome trigger points in shoulders, about rib level and lower back even if he doesn't do anything much more..

Hello,

i can see you are having a bit of a struggle with the messages coming to you from our forum Pros.

Message #1, stop pushing against the mountain. It ain't gonna move, and you are gonna wear yourself out, with no gain. PMR is a nasty disorder which will outlast your resistance to its limitations. You no can no longer walk 20 pool lengths without 2 or 3 days of pain. You probably can walk a couple of lengths, and gradually build over WEEKS (months) to more distance.

Message #2, PMR is a long term disorder for most of us. I was diagnosed in Sept 2013, and am only now glimpsing the light at the end of my tunnel (I hope), but no guarantees. Others have been here longer than I.

Message #3, patience is your new lesson. PMR will not be pushed, you will pay with pain if you force yourself to go beyond your limit in these early days. Example...the stiffness you are experiencing now.

Message #4, your doctor, very likely, is not an expert of this disorder! In fact, he may know very little about this very complex disorder.

The folks who have answered this post, this morning, are the experts. They have learned from medical researchers and from personal experience of decades, and great cost.

Well friend, I could go on...but you get the messages, I'm sure. You can help yourself by reading archive posts, found on the right side of the home page, and begin to educate yourself about this disorder.

Kind regards, Jerri

PMR Diagnosed 9/2013, currently using 6 mg pred

Reply to you all.

I haven’t exercised since, or tried to. My point was no one told me at the Hospital , or the consultant not to .

So I learnt the hard way.

Regarding seeing someone who knows about PM R : He is a consultant in that field! Who should I have gone to ????

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Stifffingers

A Rheumy is right person to go to, but many doctors are not very good at giving you all the dos and don’ts - even when you are paying them!

Most of us learnt the hard way - unfortunately!

Take care.

I agree with Dorset Lady below - I paid a Rheumy - who basically took me down the road of litrally finishing the Pred in 12 months. So they don't always have the knowledge they should have. She left me in a very bad way - only my GP gives me the prescription now. Not all Rheumys are like this - it is unfortunately the luck of the draw to find someone who knows what they are doing and in my case - waiting to stamp the "Paid" receipt!!! I wish you the very best.

Hi SF, lots of good advice on here with your question. I can only relate to your pins and needles as the steroids become lower in dose. For me, it`s Giant Cell Arteritis. Look it up on your lappy.

I bashed on regardless when I first got this l didn't know what I had and didn't have a diagnosis for a while ,So I persevered in ignorance but I will say with hindsight .Take it easy ,do what you can not what you think you should and be aware this is something you need to learn to live with . It will at some point be controllable but it will change you and you will learn there are restrictions to how you live .I go swimming but I am 5 odd years down the line and hahahaha I didnt go swimming before .This is my excersise now ;-) I swim slowly with a friend who also has problems we walk every 4 th length . We take it easy and it works .Just get yourself in the frame of mind this is not a competition .This is a waiting game .Take care

Very strange comment he made about massage! I'm worried you are not getting the care you need darling xxx

Who the Consultant or the Physio?

Finding a sympathetic, knowledgeable dr really is a crap shoot. Over 4 yrs I’ve seen 3 rheumies and I would have been better served by a chimp. 2 of them were at highly respected hospitals in Boston. Now my gp prescribes and trusts me enough to alter my pred as required. Until the pain is well under control, you have to learn to take things eeeeeezy! Lots of rest with no guilty feelings! It will get better. Please listen to all the great advice on here - it’s free!

Longtimer
Longtimer in reply to Bronni

After 7years and two bad rheumies....now deal with GP only, I do it slowly my way.....I'm convinced most of us know more than them!.....

Hi Stiffingers,

I was one of those unfortunate ones... It took awhile for the pred to work for me too (the doc said I'd feel better the next day but I didn't). And after awhile, I believe they bumped me up to 17.5 for it to kick in. It took months but eventually I got back to working out at the gym, which is now off and on. I also walk my dog 2/day which was really difficult at first but has gotten better. Still have bad days and periods of awful fatigue where I can't get through the day without a nap. Very frustrating for me to not be productive. (Was diagnosed in 2014 at age 54 and was very active.)

I also went through three rheumies before finding a great one that listens. I ended up back at 15 mg after getting down to 2 mg and totally suffering, because the previous docs pushed to reduce no matter what! After seeing in my charts that I have an aortic aneurysm, current doc also diagnosed me with GCA. She put me on Actemra and I have been able to bump down from the 15mg to 5. Trying to get below 5 mg has been very difficult.

I have periods of time where I feel fairly normal and then days where I am wiped out and don't do much. (currently having a week like that while fighting a UTI.) I used to be so energetic but those days are gone and I wonder if I will ever be back to my old self. I find that when I can, exercising helps, since I also have scoliosis and it keeps me from getting more stiff and helps me mentally.

I suggest you keep trying to find a compassionate rheumy, listen to your body, try meditation and be kind to yourself. Also knowing that you are not alone! Hugs.

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