Help flare up out of control

[EmmaLaura]

I got permission to raise prednisone to 20 mg. Not stopping extreme fatigue. MD says go to ER. ER is clueless. Tried to get 2nd opinion- on 7 month waiting list. Please give me advice. Should I go up more on my own and how much? I'm not afraid to do so- this fatigue is destroying my equanimity .Have you faced this. What did you do? Thank you

[PMRpro Ambassador]

The fatigue is part of almost all autoimmune disease and the pred doesn't really help. You have to manage it by pacing and resting appropriately, there is no other way I'm afraid. We have almost all been there, some manage better than others.

Follow this link

healthunlocked.com/pmrgcauk......

and you will find a post with more links to useful articles to help you understand the fatigue of chronic and autoimmune illness and how to get round it.

And what on earth your doctor thinks the ER can do about it I have no idea! He could take the time to explain - or maybe he doesn't understand it either!

[EmmaLaura in reply to PMRpro]

It's enormously valuable to hear your information. Thank you.. I'll read your sites. Has anyone had experience with the super caffeine drinks? I have two relatives I have to help, can't pass it off- Other family in Costa Rica and New Zealand, not Florida

[PMRpro Ambassador in reply to EmmaLaura]

I wouldn't touch them with a barge pole - they can be dangerous even for healthy people. And we aren't.

[SnazzyD in reply to EmmaLaura]

I'll add to the caution about caffeine drinks. I had to call a ambulance for a healthy young man at the surgery I used to work at, after he took a couple of high strength caffeine drinks to get through something. He felt unwell because his heart was under severe stress that needed the cardiac Dept. PMR/GCA is a condition affecting the circulatory system so it is far from healthy and putting a massive strain on it could be a big problem.

I'll echo what the others say, you can't tough this out and keep pushing through because you think you have to; it'll almost certainly come back to bite you. Bodies tend to stop you if you don't listen, eventually.

[piglette in reply to SnazzyD]

I believe a sixteen year old died in May this year from drinking three high caffeine drinks. He was perfectly healthy apparently.

[PMRandRA in reply to SnazzyD]

My late partner was a Red Bull junkie!

Accent on "late"!!

He died, brain haemmorhage and enlarged heart!

[SheffieldJane in reply to EmmaLaura]

Hi EmmaLaura, Do you have to help your relatives every day? I am able to support my daughter with her baby ( born prematurely) and her toddler by resting a lot the day before and then afterwards. It is all about pacing and not fighting being a different you. Creative solutions will come to you when you accept that for the duration of this disease you can't do everything you used to do. For instance if you are shopping for an elderly relative, can it be done on line? Once you start thinking outside of the box different ways to help will occur to you. But you must rest and not drive yourself or you will be no good to anyone.

Thinking of taking a massive dose of caffeine is just mad and you know it is!

[EmmaLaura in reply to SheffieldJane]

My 93 year old hubby just entered a memory loss , assisted living facility 2 weeks ago- I need to take things often to him- hour round trip. 90-95 degree F weather. My physically disabled daughter moved back in February, when hubby seemed fine ( vascular dementia. I am the caregiver. It's a reality. Plus I'm so sad about my hubby, it was a great second marriage- 17 years. We never expected me , much younger, to get these auto immune diseases. We were both happy and active .

[SheffieldJane in reply to EmmaLaura]

I am sorry that life has dealt you these blows. Of course you are feeling sad and helpless and maybe even guilty, although none of this is your fault.

In all this though you must care for yourself. At least the disease we all share will go at some stage. The more you are able to pace yourself the sooner you will heal.

There is no reason why you cannot continue to be happy now. Just be aware that in common with many of us you are grieving for your old life and all change is hard. Your marriage sounds lovely, you'll find a way.

Sending you a hug, you sound lovely.

[EmmaLaura in reply to SheffieldJane]

Thank you. Brought tears to my eyes

[EmmaLaura in reply to SheffieldJane]

I've given up that idea.

[piglette]

Hi Emma, I am sorry that you have got PMR. As PMRPro says increasing the pred will really not help the fatigue. PMR is life changing, we do not get back to normal just by taking steroids, we do have to change the way we live. Rest, rest, rest is important. Don't overdo things, PMR is very intolerant. The trouble is doctors give the impression that by taking steroids you can just carry on as normal as if nothing has happened. They don't have PMR. I find it very frustrating as I have to say No to things I want to do.

[EmmaLaura in reply to piglette]

Thank you all. Very helpful. I'm getting it slowly

[EmmaLaura in reply to EmmaLaura]

These doctors are anti prednisone which seems like magical thinking when I have GCA and had to have IV prednisone, in hospital, to preserve my vision within last year. Generally how long does the fatigue last in a flareup? I never had this fatigue before. Thanks for your answers

[PMRpro Ambassador in reply to EmmaLaura]

The fatigue really is part of the disease - and I suspect yours is so obvious now because you simply are trying to do far too much as well as adjust to the new situation of your husband being in the next town not the next room.

I do understand - but the reality is that if you try to do too much you will end up being no use to anyone. TooSore has made some really good suggestions that must be worth exploring. And do discuss it frankly with the facility he is in - they can't expect you to run around after him. The good point has to be that at least you are driving there - thank goodness for aircon in the car!

[EmmaLaura in reply to PMRpro]

AM. Never was so hot in fla before or I'm more sensitive to it this year?

[PMRpro Ambassador in reply to EmmaLaura]

I think PMR/GCA does do something to our temperature control - I was always too hot! While my husband was turning up the heating I was opening the windows. In the middle of winter! Then, all of a sudden, I was cold. After 3 years of bare feet and shirt sleeves in the house in January - I needed socks and a sweater...

[TooSore]

Try your local church for some help. Mine has a committee that will help with driving, home repairs, sewing, and keeping people company. Another option is your local high school. Many require the teens to do a certain number of community service hours. Does your daughter require help with self care? If so, a visiting nurse association can have someone come to the house. Any kind of respite will help so that you can have a bit of time each day to rest. Over time, I found the fatigue eased. It would come back with stress, cold temperatures, rainy days, or if I did too much but then it would ease again. Never stayed constant and is much better now that I'm at a lower dose. Hang in there. It will get better.

[EmmaLaura in reply to TooSore]

Dgh has professional care giver and quite independent with that but I have to monitor. Last night I learned at 9:30 pm that she didn't have Meds programmed and was not going to tell me. I had to deal with it at that late hour and felt insecure about my knowledge Just ongoing things. My dog walker / feeder is on vacation starting today and I have to care for those 2 standard poodles whom we love. Don't know if I can do it but will have to.

[EmmaLaura in reply to TooSore]

I successfully walked the poodles today ( more or less- they are happy).

I believe those community helpers you mentioned have disappeared in the USA, except perhaps rural areas, as citizens look for entitlements to grab, rather than feeling a need to help others. I see this as secularism run riot, possibly. God Help us all!

The times you mentioned when fatigue returns are very helpful. Thank you! 🌹

[TooSore in reply to EmmaLaura]

I'm in the states but am in suburban New England. A young teen would love to help with the dogs!

[Patience_1]

Hi EmmaLaura, welcome to the forum. I've found it incredibly helpful during the past 9 months since I was diagnosed with pmr.

Given the very difficult time you're going through, it's not at all surprising that you are feeling so wiped out. I personally have found that higher doses of pred cause more of the intensely fatigued episodes, and now that I'm down to 11.5mg they're not quite so frequent or extreme. I think, though, that an even better explanation is that I'm better at managing my pacing and forcing myself to take frequent short breaks and sometimes even a nap during the day (not something that comes naturally to me!).

I've also found that any stress (and nowadays it can happen that even the slightest and seemingly trivial things can bring on the fretting and tears) sets me back. At first, once the prednisolone had worked it's magic on my pains, I thought I could carry on as normal, but gradually I've come to realise that's not so. Very hard for you, when you have such important commitments and worries. But, it really does help in the long run if you can get the hang of taking care of yourself - that way you can hopefully carry on being supportive to your husband and daughter. In our situation, it's not being selfish to take care of No. 1.

This is a great place for getting support from people who really understand. I do hope things begin to improve for you soon.

[Gaijin]

After reading all the wonderful responses , I have nothing to add except that extreme fatigue was my biggest complaint since I have PMR..it took me months to understand pacing and overdoing and that it's something you have to learn to live with.

No doctor I've seen has given me any satisfaction when I've complained of the extreme fatigue.I think they don't want to deal with fatigue because there is really no meds that the can push on you to aliviate it.

Sorry to hear about your husband, I'm in the inicial stage of the same game and already grieving the partnership I've lost.

Hope you can find how to cope with the fatigue through the the information on here, for me it's been crucial.

[EmmaLaura in reply to Gaijin]

It's odd because 2 years ago I handled injury caused fractured back and perforated colon without a PMR flare up. Only now have I experienced the fatigue and after a 1 mg taper a month of pred to 12 . Then all hell broke loose. I always rest. The stress has been horrific but I've handled such before. I just don't get it.

[PMRandRA in reply to Gaijin]

Underactive thyroid is a major cause of horrendous fatigue. I don't get the fatigue, tired yes, but not that all encompassing fatigue. My hypothyroidism is sorted with medication!

May I suggest that fatigued people get their thyroid tested? It's an idea and may or may not help!

[EmmaLaura in reply to PMRandRA]

By lab, not low .

[jinasc]

I am not going to add very much, but reach out to voluntary organisations, there are many. Help is available just ask.

Fatigue is something that happens, it is your body telling you.........'give me a break'.

Don't push through it, it makes it worse and it becomes a vicious cycle.

Follow this link and read...........

The Spoon Theory written by Christine Miserandino

butyoudontlooksick.com/arti...

'At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes ...'

[pszak72]

I have had great success with taking turmeric supplements. I take one with a special compound called BCM 95. The supplement is a 95% standardized curcumin extract. After taking this in the am, flares and fatigue are mostly gone for the day. I am surprised that more people with PMR do not take this.

This supplemeny does not interfere with prednisone and was recommended by my Rheumy.

[EmmaLaura in reply to pszak72]

I'll look for the turmeric today. Thanks

[EmmaLaura in reply to EmmaLaura]

I use turmeric tea now with ginger and have not had that fatigue.

[PMRpro Ambassador in reply to pszak72]

It may not interfere with pred - it does interfere with other drugs.

It is hardly the cheapest of supplements though - don't know what you pay in the USA but it is nearly £30 for 60 capsules in the UK. And the dose is 2-4 PER DAY!!! I'm reasonably well off - I couldn't afford that.

[EmmaLaura in reply to PMRpro]

Can't take the chance on interactions but might try one a day. I hate taking pills!

[PMRandRA in reply to EmmaLaura]

you can check interactions online. I have looked and haven't found any interactions so far. But that isn't to say there aren't any.

[EmmaLaura in reply to EmmaLaura]

Using turmeric tea with good results

[pszak72 in reply to PMRpro]

I pay about $28. For what it does it is well worth it. Yes I do take 4 per day.

[Ida-June128 in reply to PMRpro]

Which other drugs might it interfere with please? I seem to have given myself atrilal fibru.....by taking too many tabs for high blood pressure, pulse rate of 140 and rythm like the Dave Brubeck 5. Beta blockers knocked me sideways.

[HeronNS in reply to Ida-June128]

Try this site, Ida-June: drugs.com/drug-interactions...

[PMRandRA in reply to pszak72]

I do. Also take cherry supplement in pill form. Better than Mez whatever and all the other poisons!! Except Pred! ❤️

[EmmaLaura in reply to PMRandRA]

I do take tart cherries in many forms

[EmmaLaura in reply to pszak72]

I'm waiting for amazon delivery of this

[jbarie]

Extreme fatigue may or may not be related to your PMR Dx. The differential diagnosis of fatigue is a long one.... common causes include adrenal deficiency, anemia, chronic fatigue syndrome, Etc.... how does your doctor measure the status of your PMR?.... how about a sed rate?

[PMRpro Ambassador in reply to jbarie]

Hardly an accurate assessment - as long as you are on enough pred to manage the inflammation your sed rate (ESR) will not be raised. And for 1 in 5 of us it is never raised with or without management. But the fatigue persists for most patients. If the dx is PMR, as an autoimmune disorder the most likely reason for fatigue is: the PMR. Followed, for some people at least, by the pred.

[EmmaLaura in reply to PMRpro]

Sed rate really not a factor much for me

[PMRpro Ambassador in reply to EmmaLaura]

Me neither - usually 4 and reached the dizzy heights of 7 at one point!

[pszak72 in reply to PMRpro]

In my case sed rate tells all.It was 52 in March at start of PMR and now at 11, at 12.5

Prednisone!

[EmmaLaura in reply to jbarie]

I'm seeking a new MD. Long wait I sent in written materials and Mayo Clinic sent theirs. They may move me up on 7 to 12 month current wait list. This one was recommended by a specialist.

[EmmaLaura in reply to jbarie]

Send rate is never remarkable for me