Need to check in with you all

[DogAgilityObsessed]

I know I only seem to appear when I need your help but I do lurk in the early hours as well. As I mentioned before but don't expect you to remember, I have two parents both with dementia - it's getting worse and I struggle to find any time for me!

Anyway, I think I am going to have to see my GP soon as I haven't done so f2f for a year. And I'm now back up to 15mg of pred which is where I was on diagnosis two years ago! I suspect he isn't going to be happy although he has always been supportive of leaving me to manage my dose (I quote from this forum a lot).

I think the 15mg is keeping the pain at bay especially at night and I notice that I'm not walking so like a duck. I upped from 12mg about a week ago but got down unsuccessfully to 9mg earlier this year. But although I had initially thought I would revert to 12mg after this week, the difference I feel makes me think I need to stay there longer. I feel I've been yo-yo ing over the last two years but am no further forward. I recall seeing a post that there could be a danger my cumulative total of pred could be higher if I continue on this up and down path.

My legs are also extremely weak especially the upper half and although I don't understand it, my watch is recording heart rates between 42 and 116 when simply walking and moving around or resting. I do still try to do some agility but after 20 seconds of trying to run (albeit not well at all) I am completely out of breath and my heart rate has shot up. These things are also pushing me to make a GP appointment (when I get some time).

I'm sorry for the moan but just feel a need to speak to someone who understands PMR and what I'm going through.

[DorsetLady PMRGCAuk volunteer]

Hi,

Don’t ever worry about just popping in when you need answers, that’s what we’re here for…and you do need to make time to see your GP..however difficult that may be.

Your heart rate and breathlessness needs to be investigated…it may be PMR related, but it may not. As for Pred doses, you’re under a lot of stress with parents, so for the moment I think you need to say, you need what you need. Get the other issues sorted initially.

Just as matter of interest, you haven’t had covid in the last few months have you?

[DogAgilityObsessed in reply to DorsetLady]

No COVID ever. Test occasionally when I think I may need to.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

No, me neither, just trying to find options to how you are feeling at the moment…..so please get checked…and let us know.

[CarolF1312]

Hi there, we started our journeys around the same time. I'm so sorry to hear you're having a bad time all round. I think its definitely time to have a f2f with your GP just in case the Pred is masking any other problems.I think we tend to put everything down to PMR or Pred !

Good luck and hope to hear you're back on track soon.

[piglette]

I think I got into the yo-yo position due to being forced to reduce too fast by a rheumatologist initially. I find a reduction of 0.5mg over four weeks minimum is best for me. Just take it really slowly. I would try and talk to your GP about your heart rate though.

[PMRpro Ambassador]

Think those cardiac symptoms need checking asap - not when you have time! That alone could make your legs feel like jelly - does me when I'm having one of my paroxysmal atrial fibrillation episodes. I know it is a/f - but you don't know what is underlying your erratic heart rate.

As you know I also had the carer problem - and it meant I needed a lot more pred to cope. I gave up trying to reduce during Covid plus that.

And you know - with that response to an exercise challenge, despite the current status of the emergency services, I would seriously consider a 111 OOH call when it happens and see what they think. It definitely helps them if they can catch it while it is happening. And you do have responsibilites that compound the problem.

[Sharitone]

If you have difficulty getting through to your GP, or getting an early appointment , and cannot get through to 111, could you at least do an e-consult? That way, someone at least gets to see what is wrong within a day, and without it being filtered out by a receptionist.I take it you're getting help with your parents?

[Blossom20]

Hi, sorry to hear you're having a hard time. With all that responsibility and worry about your parents it must be taking its toll. I would stay where you are regarding the pred for a bit. The weak muscles - I get that, I think its either Pmr or pred, but the erratic heart rate needs looking at as others have said.

I wish you all the best. Let us know how you get on.

[Karenjaninaz]

In my case I felt the same- almost like made of cellophane. I found specific leg exercises, walking more, and stationary bike. Strengthened me and boosted my mood. The issue with your parents need some solution I also have asthma with allergies to mold, dust mite and tree pollen. That has not been bad this year. It is so easy, to just relax at every turn. I had to push myself a little more aerobically. Pred weakens every muscle and I recently read info from the Journal “Chest” that respiratory muscles are also weakened. Because I have less room from scoliosis I got so weak I am in O2 24/7 and awaiting pulmonary rehab. I am incorporating exercises I found on YouTube from pulmonary centers.

I can only tolerate 1/2 mgm every month - at 10mgm now.