I am 20 months into the PMR journey. Pain isn't so much an issue anymore just occasionally as well as some stiffness. I am 5 days on 11.5 this week having dropped from 12 using the DL plan. This is the lowest I have ever been able to get to. My current problem for the last two months has been terrible fatigue which never seems to lift. I have cut back hours at work several times and now work 5 a day, which may go to 4. Yesterday came home after 2 1/2. Previously I could pace myself, resting in between anything physical and I would bounce back. MB mentioned once that he figured he operated at 50% both physically and mentally. That's where I was and it was tolerable. Now I am at 25% and it is very discouraging. I feel like a deflated balloon.
I have been at this low point for about 2 months. At this time I started back to work 5 days a week after working 10 hours a week during the summer, have had cataract surgery on both eyes, ( which healed perfectly) went without glasses for 2 months while my eyes healed (glasses which I have worn all day every day since I was 4 years old). Does any kind of physical healing just absolutely flatten us for a time? Once again I am trying to make sense of what this disease is doing and what is my part. I have also been to the GP for blood work of all sorts, a general overview and thyroid and all was normal.
I just don't know what else to do. I feel that I am getting worse and not better. Suggestions dear friends?
Bunnymom
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bunnymom
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Perhaps you have reduced too quickly and gone down to where the amount of pred is not controlling the inflammation, remember pred is not a cure, there is none, it is to enable you to manage the inflammation.
I hesitate to say this, but you could put' The Spoon Theory' in your search engine and read it, it might just help you to understand fatigue better and how to manage it.
Also there is this:
Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago.
Finally you will get into remission but we just do not know how long it will take so, in the meantime, treat yourself like a Precious Princess for a while and do something you would really like to do, me, I curled up with a book and an Irish Coffee. Let others do the reaching and fetching whenever you can.
I would guess you’ve probably answered yourself. The last couple of months have been stressful, in different ways, so no wonder you’re feeling down at the moment.
Don’t think about reducing any more for a while, just get yourself together again. Hopefully things will settle, and then you’ll feel more able to cope, but as jinasc rightly points out you may have been trying to do too much!
Don’t despair, just ride it out, and as much TLC as you can get, I know that’s not always easy, but you must take time for yourself.
Think you have to get back to what you consider a dose you can function at. Sorry not very good English, but you get my meaning.
You do seem to be one of the unlucky ones who doesn’t get the full benefit of the dose, not sure what to suggest, other than to talk to doctor/Rheumy about it.
Dorset Lady, you have heard it all over the years! Did you ever have to tell someone that they had better taper...they are not tapering fast enough😆 I think there is a common thread here...
Thanks my GP would support that but not my rhuemy. It's funny that in reading about chronic illness the first thing mentioned it to get strong medical support and that is what's so difficult isn't it. I end up going in and telling them what to do. I am going to give it a few more weeks and then consider seeing my GP and increasing.
Hi bunnymom, In my view you are doing a great deal. Perhaps you are making an unfair comparison with the old you. You have also had the stress and worry of two eye operations. PMR is like learning about being a whole different you for a while. Things we used to breeze through floor us now. Sometimes I feel bleak and realise that I haven't eaten, then I eat and I'm ok again. No proper signals like hunger. Same with utter exhaustion. For some reason, getting up, having a shower, getting dressed, taking my tablets utterly wipes me out. All I want to do is lie down for a bit and as I'm retired thankfully, I often do. I could not handle any of the former jobs I did, physically or emotionally. I guess I'm lucky that PMR happened at this point in my life. Although it feels a bit unfair. I can relate to PMR being a daily puzzle. Occasionally I have a great day and try to analyse how I achieved that. Sometimes it's as simple as emailed photos of my grandchildren with them sending hundreds of emojis telling me a story and that spurs me on to activity and I end up having a good day.
I am 18 months diagnosed and on 7 mgs and also feel deflated.
I appreciate your empathy but confess that I wish I was at that low of a dose. I agree with Dorset Lady that my body doesn't break down the pred very well. I try to live in today's reality but find it changes all the time
I also try and use the spoon theory but never know the starting spoon count!
If it about absorption then the numbers become meaningless. You may only have the equivalent of 4 mgs inside you. I wish blood analysis was more precise and detailed. I had a horrible Menopause I used to wish that I could be told more precisely what could put me right, instead of just blanket doses of everything.
I could have written Sheffield Jane’s Post!!!! Thank you Jane! I think you are doing a lot too...and then the cataracts surgery! Just the stress of the surgery, even though it is “common” is still stressful. I have had PMR For almost 4 years and I think it is not a good idea to focus on the prednisone dose ( us we do!)....PMR is running the show, accepting that is difficult...rest really help😌 Hope things settle down for you! This forum really helps!!
Hi Bunny, I just want to send you a GIANT virtual Hug!!! And let you know you will get through this time...and will be just fine!
So in the meantime, here is my assessment after reading your post.. you are Wonder Woman!
Two surgeries, regardless of how simple and common they be...are a severe assualt to your physical body! I believe the body needs 6 months (minimally) to return to balance after anesthetic, emotional distress (anxiety, fear, pain, and the other things that accompany surgery.
AND! You are working! AND! You have PMR!!!
Flattened is a perfect descriptor for the feelings you described. I remember the days well, when I could bearly get one foot to follow the other, sleeping poorly, sweating profusely, fatigue next to comatose, and not one spark of enthusiasm for anything!
It passes. In the meantime, be as kind to yourself as you would be to your dearest friend who was experiencing this same set of circumstances.
Just wondering if there's something else going on. Are your iron levels good? Vitamin levels, especially the B vitamins? I think your doctor should investigate because your increasing fatigue may not be directly related to pred or PMR. All the best.
Well I guess the good thing is those problems have been ruled out, and the bad thing is you still have fatigue. Do be kind to yourself, as you would be if you had a visible ailment, like a broken leg.
"I have been at this low point for about 2 months. At this time I started back to work 5 days a week after working 10 hours a week during the summer, have had cataract surgery on both eyes,"
Take a step back and read this with an open mind. If you read this in anyone else's post what would you think?
If you are honest, don't you have to agree that it does really sound as if going back to 5 days a week is simply too much for you? And because you are overdoing it and tired you are upset and probably just a tad depressed about it? That is as much part of PMR as anything else I'm afraid - the loss of the old you is a harsh reality that you cannot escape from and it hits you on top of the depressive mood that is there in PMR for many people.
I initially went back to work full time after being diagnosed with PMR, then reluctantly dropped one day a week... then realised that I was having a miserable time and it really wasn't working well for me (or probably anyone else), so am currently on long-term sick leave. It is quite a pain chasing sick certificates every three weeks (my GP won't provide them for a longer period), attending Occupational Health reviews every six weeks and attending meetings with my manager every four weeks. I'm currently on half pay until the end of January 2018, at which time my pay stops, but at least I won't have to chase certificates or attend meetings when my manager asks me "when are you going to get better...?" I have no plans to retire and am hoping that my job will wait for me.
Taking time off sick isn't the end of the world, although I've had some "wobbly" moments when I've wondered whether I'll ever get back to work. Do consider going off sick, but don't retire unless it's the only option; although you have to have a strong backbone to cope with the meetings, reports, letters (often inaccurate and always impersonal and stern - "just following policy..."), reviews and sick certificates (now called Statement of Fitness for Work). I've been convinced, on occasions, that they're trying to send me round the bend, as sometimes I've received several copies of the same correspondence. Just for good measure I get them by email too!
Don't be disheartened about your Pred dose - I'm 14 months into the PMR journey and juggling between 10.5mg and 11mg... and I'm not working.
I am in the US. I don't believe I would want my job held as I have to train someone to take on my responsibility and who knows for how long? I am 61 so I could just be done. I work 4 or 5 days a week for 4 or 5 hours. Has become increasingly difficult. Can't take the smallest stresses. A lot of it is psychological for me.
That is partly the autoimmune disorder that is still chugging along in the background and partly the pred. Your adrenal activity is compromised and can't react to stress. It is probably the greater problem when working - at higher doses there is often brain fog which impairs judgement (and it can also be due to PMR itself too) but the ability to cope with stress is there a lot of the time.
Bunnymom. . Depletion is enough to tip the scales into depression. Also pain can cause depression. We don't need to look further than those two factors. Those are purely physical reasons. Also feeling stuck and overloaded no how much you try to PACE yourself can pile on top.
I notice that you live in the US. Have you spoken to your Rheumy or your GP about Actemra? I don't know if you've been diagnosed with GCA as well as PMR, but from what I've read here it can be quite helpful if you've been stalled a long time in your taper.
Perhaps one of your doctors might be open to prescribing it. It is FDA approved for GCA. Hopefully it will be FDA approved for PMR alone soon. It is being worked on.
It treats the dysregulation of the immune system that causes the inflammation. Pred treats the inflammation. It's a bit like treating a brain tumor with pain meds. The pain may go away, but until the underlying tumor is treated, it will come back again as soon as the aspirin is stopped.
You can search here for actemra and read some posts.
I am sorry you feel so low but it's interesting because so do I
Have GCA since April 2014 and have managed to stay positive most of the time until like you I had both cataracts replaced. Other than having to have a general anaesthetic for the second because I kept coughing, both operations were extremely successful and I now longer need glasses.
I am down to 4mgms tapering slowly and I am fine, just sunk into deep depression.
Maybe as Dorset Lady says we expect too much of our bodies and two operations in quick succession has just been too much.
I am going to Majorca for the weekend perhaps a bit of sunshine will help.
I suspect we are just too hard on ourselves
When I used to lecture,I always used to say that when climbing a mountain you should look back at how far you have climbed not how far it is to the top.
Go back up on the pred a bit, tell your doc that the current dose just ain't hacking it...I can't believe your working feeling like that..but..if you have to you have to...needs must be met financially!! I am only a couple months into this PMR thing and at 20mg..started at 15 felt crappy, people on this forum said I wasn't on a big enough dose and sure enough I wasn't...I've also had very bad days, not so much pain, but fatigue and I guess you would call it frustration or despair...can't tell the pred side effects from the PMR...but now I'm trying hard to have a better state of mind and realize that everyday I will have some stiffness and not be the same person I was a few months ago...I'm lucky I'm retired so I have learned the hard way to take rest when needed..I never was a napper..thiese good people on this forum know and taught me almost everything...one more thing that has helped me...I purchased some good quality fish oil, some good quality turmeric (has to be good quality or your wasting your money) and I was already taking Norco (ohhhh I know, an opioid) for OA, as needed, it sure helps me through some rough patches..I don't ever over do it, one a day at most...and make sure your thyroid is working well..some Dnr's don't not know what the current standards are for a good TSH reading..if it's above 2 I would question that and have a goood thyroid panel taken..have a good day! (All this from a guy who a week ago was going to quit taking every thing I was so frustrated..haha) and i still may seek out a second opinion and very good physical at a major medical center like Mayo's or U of Mich medical center..
Well, I feel the same as you, having Polymyalgia for 17 months down to 51/2 on prednisone. I have heard it burns out or one has it for life. People that do not have it do not understand and tend to think you are lazy. Depression is very common but nothing seems to help. Just letting you know you aren't alone
"I have heard it burns out or one has it for life"
Well yes - you either have it or you don't! But it burns out in up to 6 years for 75% of patients and only about 5% have it for life, it isn't that common.
You sound like me! My biggest complaint is being so fatigued all the time. Guess it’s part of this PMR/gca. I am wondering if it’s from tapering down to quickly. I will be seeing Rheumatologist for time this week. So hopefully she will have some answers
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