I’ve been trying not to push myself.
I had to leave work early again today because I felt so tired and weak. I have absolutely no energy.
I’ve been on steroids for about 6-8 weeks I think, so I don’t think that’s the problem.
My blood pressure has been fluctuating like crazy.
I’m about at my wits end with this.
I’ve never experienced anything like this in my life.
So sorry you are having such trouble. Do you have GCA or OMR or both? What is your dosage.? How well are your symptoms co trolled? Are you tapering? If so, at what rate?
What does your GP say?
PMR. Was on 60mg, cut back to 40 last week. The pain is much better. Just the extreme fatigue, palpitations and the blood pressure issues are the worst.
I really feel for you Dejon73. You haven’t even got a clear diagnosis from your Rheumatologist and yet you are being treated quite aggressively with high dose steroids as if you have GCA. This seems to have led to a hike in your blood pressure so you’re on a lot of meds for that. No wonder you feel dreadful and weak. Prednisalone doesn’t deliver “ wellness” at high doses, it just banks down the dangerous inflammation. The treatment can make you feel awful.
Is there any chance of obtaining a second opinion from another Rheumatologist? Your treatment doesn’t seem satisfactory to me.
I think you need to go off sick until you are on an even keel. Your health has to come first. You deserve to understand just what you are being treated for and all the thinking behind it, so that you can work with your doctor to get well. Wishing you so well! All the positivity in the world cannot make this go away, it is what it is and it’s serious.
PS. I have just seen your reply to Hindhags. Your dose is really high for PMR. The usual start dose is 25 mgs to 15 mgs. Most people at 20 mgs. Once the pain has settled, then a very slow taper down to the lowest dose that controls the symptoms. Mine appears to be 7 mgs after 2 years. I still get dreadful fatigue but my flexibility is really good. I am not clear why you have been put on GCA doses. Have they explained?
No, they haven’t.
I feel like I’ve left so many things up in the air. I’m hoping I can get my husband to go with me Wednesday. He is very concerned as well.
Thanks so much for listening. I’m really starting to freak out about this.
Stay calm if you can. Yet another side effect of Pred is anxious feelings and feeling muddled ( Pred head). Good idea to take a spokesman, a prompt and a listener with you, your husband will be able to do that. Jot down your questions too. Good luck, This is not your fault, you haven’t been communicated with very well.
You poor thing! As others have said you are on a very high dose for PMR, and that dosage in itself makes many people fee rubbish.
But PMR itself makes one feel very fatigued. I was lucky enough to be able to retire, and felt so much better a couple of months after that.
You may need to go off sick at the moment. Many people with PMR cannot work as many hours as they could before. Talk to HR at work. Others who have needed to do this or who used to work in HR will be along when the UK awakes up. Talk to your doctor as well this week.
This is a serious disease and you need to rest at the moment until things settle down a bit.
Good luck
Hello,
40mg made me feel anxious with racing thoughts that I couldn’t get hold of in the brain fog. My muscles were weak (no PMR just GCA) and I felt breathless without being breathless. The hunger was awful, but I ate loads as long as it was protein, fruits or veg and this stopped me gaining weight and stabilised the blood sugar swings which also affects mood. If you have either of these conditions, you will feel very tired indeed and the Pred is not a fix so you can get on with your life the same a before. It is like a plaster cast for a broken leg, it holds the bone together while it mends and you can limp but not walk. Either is a serious condition that will go into remission when your body is ready to stop attacking itself. Usually people have to make big changes and hunker down for a few years. Some do work but I gather their recovery is more protracted and they can need more Pred for longer. I was 54 when this hit last year. I was fit and worked. I was forced to give up work and suddenly stop my life of a perfectionist who could everything for everybody. It has been so hard but also the best thing I could have ever done. Mainly, I learned to be kind to myself.
‘Hunker down’ - I really like that description.
Hi Dejon73,
Looking at your last post, which was only a week or so ago, you said then you felt good. Since then you’ve dropped 20mg, would say that has a large bearing on how you are feeling - too much for the body to cope.
As Jane says, you really need to be off work whilst you are like this, there’s no way you can function properly.
Blood pressure is likely to be Pred side effect, but also anxiety. Fatigue is likely both Pred and underlying illness whether that be GCA or PMR.
You really need to get some answers from your GP, and yes get your husband to go with you, two people very often galvanise their minds!
Take care.
Hi Dejon
If l had my time over again, I’d have taken off sick from work instead of soldiering on. Husband had to drive me in & pick me up after l’d had to leave my car at the office.
You really do need to get settled & luckily you’re seeing you’re Consultant again this week.
If you cannot manage to work full time for a while go to HR or Occupational Health for input & advice.
I had to retire early in the end but l really do wish l’d taken time off at the beginning & the outcome might have been very different for me!
Best Wishes
Good Luck For Your Appointment 🍀
Mrs Nails 💅🏼
Thank you so much 😊
I can only agree with what's been said so far. Whether you have PMR and have been put on far too high a dose, or you really do have GCA and are on the appropriate dose - high dose pred and work are not good bedfellows. Both the pred and the underlying illness affect you physically and mentally - judgement can be impaired for one thing - and you need to have the opportunity to rest when required. Which you can't do at work.
Hello Dejon73
I am only 52, and have always worked hard and push myself everyday. Since last September I was diagnosised with PMR and it has been a challenge working everyday. I have just organized a modified schedual working 21/2 days per week, and have compensation with my insurance plan and HR has been very supportive. I was trying to reduce my prednisone and at 9-10mg felt as symptomatic as last Sept. So up the dose back to 20 and then 25. This is when I decided I need to "SLOW down, in order to HEAL faster". Even though I know it need to run its course, over doing it one day does make you feel worse the next day. Take it easy, as we all are having to do things now in moderation.
JG
Hmm? Oddly Dejon73, I felt MUCH worse after I started taking steroids than I did before... Have you started to taper down yet? I was on 60 when I had a failed taper down... put up to 80mg! Then tapered again... I NEVER felt as bad as I did as when I was on 80mg! Not so great on 60 mg, either.
Me too! Started me on 60 then down to 40. My headaches and upper chest pain has stopped. My biggest issue is the fatigue, dizziness and heart palpitations. Finally got my blood pressure under control. It’s been off the charts! Yesterday morning it was 117/82 then last night it was 154/86, which is closer to my normal. I’ve had blood pressure issues most of my life.
I see the rheumatologist tomorrow. I’m hoping he will cut the prednisone down more.
I’m trying really hard to stay positive. But some days it’s very hard.
Good luck, I hope they manage to sort out blood pressure... Hang in there! I cant imagine how hard it is.. I had high blood pressure for a few weeks when I was at higher doses... scared the crap out of me. Try 7/11/.... breath in slowly for 7 seconds. Hold. Then breath out slowly for 11 seconds... repeat.
It's very calming.
Good luck
Hi Dejon, I've been struggling to work these last 3 weeks, utter exhaustion everyday and it just seems to get worse. I took the plunge Tuesday and visited my GP, she has signed me off for a month. The relief I feel is terrific, it was a hard thing to do, I've always (I'm sure like yourself) been a doer BUT the truth was i couldn't. First and foremost you have to be kind to yourself. Good luck.
Some vacation, thank you PMR
Sort of flu
Coronavirus
Hello from someone new to all this PMRGCA stuff
