Fatigue : Dear Everyone, I have not posted on the... - PMRGCAuk

PMRGCAuk

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Fatigue

PatB1948 profile image

Dear Everyone, I have not posted on the forum for some time. Diagnosed April 2017 with PMR/suspected GCA and started on 40mg Prednisolone. I have been tapering and had managed to get down to 11/12mg Pred per day but reducing further was very difficult and I had some flairs so ended back up again to 16/17mg daily which is what I was on when I saw rheumatologist at the end of Dec '19. She suggested Methotrexate weekly injections as I have stomach problems. I started the MTX at the end of February at which time I was taking 14mg Pred. I have been alright with the MTX injections and have managed to get down to 8mg. In the last two weeks, however, I am suffering from severe fatigue. I am wondering if it is my adrenal glands not kicking in yet and would like your thoughts on this. Also if it is this, what is the treatment. Sorry for the long post.

Thank you, Patg

39 Replies
PMRpro profile image
PMRproAmbassador

It could be - and the only solution is patience! Only keeping going on a lower dose of pred than your body needs will persuade the whole set-up that produces cortisol (the natural steroid) to wake up and get its act together.

It is less likely that the fatigue is due to the mtx because you have been on that a fair time now - but that is also a possibility.

PatB1948 profile image
PatB1948 in reply to PMRpro

Thank you, PMRpro, I shall persevere. I am only reducing by 0.5mg every 4 to 6 weeks and not having many PMR pain, in fact, I was feeling quite good until this fatigue kicked in.

SnazzyD profile image
SnazzyD in reply to PatB1948

Yes, that’s the annoying bit!

PMRpro profile image
PMRproAmbassador in reply to PatB1948

I know the feeling!!!!

Italy2 profile image
Italy2 in reply to PMRpro

How do we know which it is - a) not being on a high enough dose of pred that causes the pmr fatigue or b) that we should stay on the lowe dose and wait for adrenal glands to kick in? When do we give up on waiting and go on a higher dose of pred, or could it be the pred causing the fatigue and we need to reduce !?

PMRpro profile image
PMRproAmbassador in reply to Italy2

You don't really do you? More pred is the answer either way!! I'd be inclined to think that if it is the PMR causing it it would tend to worsen, poor adrenal gland function it might improve. Depends on your situation I suppose. If you HAVE to be able to function, then you would be more likely to give in. Surely if it was pred was causing the fatigue it would have been worse at higher doses?

tangocharlie profile image
tangocharlie in reply to Italy2

Good question! The first time I had adrenal problems I pushed on despite the fatigue because I was assured (wrongly) by doctors that my PMR must have gone away as I couldn't still have it after 5 years and what I had was steroid withdrawal pains. Luckily someone on here told me about adrenal problems and I recognised that was what I was suffering and managed t get referred to an endocrinologist, who stopped the Pred and switched me to hydrocortisone until the adrenals started to recover, about 4 mnths I think. But the hc wasn't a strong enough anti-inflammatory as Pred so I didn't know if the fatigue etc was coming from lack of adrenals or uncontrolled PMR. Eventually I had to go back on steroids. So as PMRPro says, it's difficult to know the source of the problem. You have to ask your GP or rheumatologist to refer you to an endocrinologist if you suspect you have adrenal problems, which you can find if you Google Secondary Adrenal Insufficiency.

Yes, this is a difficult bit and as PMRPro says, you have to go through the adrenal challenge in order to make them wake up. I found around 7mg to be the neither here nor there stage where not enough Pred but no action from adrenals. I just had to keep going down 0.5mg per 6-8 weeks so as to push the adrenal system without tipping into insufficiency problems on a bigger scale. It wasn’t easy and the new fatigue and emotional ups and downs was a disappointment; I expected at least a bit of an easy life.

PatB1948 profile image
PatB1948 in reply to SnazzyD

Thank you, SnazzyD. See my reply to PMRpro.

Roy46 profile image
Roy46 in reply to SnazzyD

Oh how I agree that the 7mg mark is the crunch.

My taper has been half a mg every 6 weeks. Through swings and roundabouts I got to 7 in February. By my taper method I should have reduced to 6.5 end March. But I wasn't up to it, so stayed at 7 until July, a long slog. Thought I'd then try 6.5 and hope the adrenals were with me. They were for 10 days and then, no, so back up to 7.5. A week later and I'm onto 7 and monitoring. Suspect I'm there until Christmas,

7mg should be christened THE BRICK WALL. Get over that and who knows.

SnazzyD profile image
SnazzyD in reply to Roy46

I decided to push on because it felt like a no man’s land from which I would never emerge. However, some on here have stuck at 7mg for a bit (that scientific unit of time) having failed to go down, to find that their body becomes reasdy.

PMRpro profile image
PMRproAmbassador in reply to Roy46

One very good PMR rheumy keeps patients at 5mg for up to 9 months - of course you have to get there first!

I have a very similar story but not offered Methotrexate. I too suffer from varying levels of fatigue. For me it is part and parcel of the withdrawal process. I started on 50mg Oct 2017. Now down at 7.5mg with several ups and downs physically and emotionally resulting in increases back up above 10mg. I’m suffering every day with fatigue just now more than pain and stiffness. I’m going to give it another 2 weeks on 7.5. That will mean 4 weeks. At that point I will need to consider consulting with Rheumy about what to do next. I’ve also been diagnosed as having fybromyalgia too. It was indicated that this may account for the increased fatigue factor but they don’t know for sure. Hope some of that is useful. Wishing you well.

PatB1948 profile image
PatB1948 in reply to Singr

Thank you, Singr. You can see my reply above to PMRpro,

I had dreadful fatigue with pred but no MTX. It started about 6mg in my case and I was totally washed out, it was even an effort to lift a spoon to my mouth. I am much improved now but it took quite a while. I think it was adrenal glands having to wake up in my case.

PatB1948 profile image
PatB1948 in reply to piglette

Thank you, piglette, hopefully it will get better.

Devoid profile image
Devoid in reply to PatB1948

Hi I have found the fatigue with methotrexate builds so not too bad initially but as the weeks go on it gets worse, of course this is only my personal experience

PatB1948 profile image
PatB1948 in reply to Devoid

Thank you Devoid, that is interesting, I may have a word with rheumatologist about about the MTX.

Devoid profile image
Devoid in reply to PatB1948

Hi I hope your rheumatology team listens better than mine. I have just had somewhat of a battle as even though the problems I’ve had with methotrexate haven’t been gastric they have wanted me to swap to the injections. Initially I agreed to try but after further reading and consideration I refused them yesterday, so not sure what the response from the consultant will be as I spoke to the nurse yesterday. I am down to 3mg of pred and weekly tocilizumab injections which whilst I complete the 12 months in November the funding has been extended to April next year due to covid.

PMRpro profile image
PMRproAmbassador in reply to Devoid

Same for me - but it started the first week very mildly and the second week was noticeably worse already. By 4 weeks I couldn't face more ...

I am exhausted daily. If I leave the house I have to take a nap when I get home because I'm wiped, even if I don't do anything. If the grandkids stay I sleep for a day or so!

I can relate to just about all these comments. I am on six and a half mgs pred. I was diagnosed with PMR in May 2017. This is the lowest pred dose I have been on. I did try MTX for a short time but experienced awful fatigue

I find that I get up (after not sleeping that well due to aching ) around 7a.m and have an energy burst for a few hours, then around 10 a.m a wall of fatigue hits me and that's about it for the rest of the day. I rest, do a few things, rest again etc etc. I want to try and stay on this dose of pred but obviously will raise it if I have to. I think being patient while the adrenal system wakes up is key.

Good luck all of you!!!

so helpful to find kindred spirits out there. On 6.5mg and overwhelmed by fatigue (especially in the afternoons), in a way that I wasn't before. Following diagnosis in December 2019 on 60mg. Also dizziness. Have to work but need naps now to get through 5 hours work a day. Everything feels a real struggle at the moment...but NO pain! So I guess I'll stay on the 6.5 (I only reduce 0.25mg every couple of weeks).

sending the best of wishes

Were you diagnosed with GCA as you were on such a high dose?

You have done very well to get so low in such a short period of time.

Well done.

suspected GCA...PMR diagnosed and treated very effectively with 20mg prednisone. 1 week later had very odd visual disturbances went straight to A and E and within about 3 hours I was on 60mg. 5 days later had an ultrasound and biopsy which showed nothing but was kept on 60mg for 2 weeks then ...the usual decrease...stayed on 40mg for a while because of odd head pains...but here I am on 6.5 and would like to feel a little triumphant ...instead feel like I am at least 90 years old.

I have been exhausted for about a month! Fatigue. It's awful. I am down to 8mg of Pred now. I had a full blood count test this week and it is OK. Last week I had a test and I was showing Anaemia! This week I'm OK. I had T2 Diabetes for a while now and that to has gone....

I hate this fatigue! Any tips???

The fatigue is so hard to manage. I haven't been able to find a pattern to mine and am trying to work around it - luckily able to work from home at the moment. I have random bouts of dizziness (1-2 a day) which have preceded falls - GP has suggested walking stick. I am on 22.5mgs of Pred at the moment.

This is such an unknown illness, I really appreciate the knowledge and wisdom of people on here, thank you.

PMRpro profile image
PMRproAmbassador in reply to SanG55

I'd be more impressed if your GP did a long term cardiac monitor! My similar episodes were due to bradycardia (slow heart rate) with very occasional long pauses. I complained for months but short term monitors showed nothing and at the time they didn't have the fancy external loop sort that provide a trace retrospectively. I was about to get one when I collapsed and they found the 7 second pauses while I was in hospital - they certainly got a move on then!!!

SanG55 profile image
SanG55 in reply to PMRpro

Wow, that sounds scary. I never know which things I should be worried about and which are part and parcel of PMR. My eyesight is the other thing I really don't understand. At some points in the day, I can barely see small print (?steroid fogginess). I've had my eyes tested but optician had no idea about PMR(or GCA), even though I had checked before making appointment(slightly frustrating, to say the least). I'm now wondering if I should get a second opinion. There are so many 'bits' to PMR.

PMRpro profile image
PMRproAmbassador in reply to SanG55

I often get foggy vision - mainly when I have been working at a constant distance like reading or being on the computer for too long. Part is dryness - we tend not to blink as much and dry eye is common in autoimmune disorders.

You could ask to be referred to the falls clinic if there is one locally. But dizzy spells leading to falls need a bit more attention than "get a stick"!!!

SanG55 profile image
SanG55 in reply to PMRpro

Thank you

I am on prednisone, 4mg at this time. I did get down to 3.5, but had to go ack to 5mg and gradually work down again. All along te tapering I have had fatigue in the afternoon. At first, I would lie down to read and drowse for hours. Now I make myself get up after an hour, or little more, and do something. Doing this actually makes me feel better, and at 4p.m., which used to be my low point of the day, I now feel somewhat invigorated

I had a lot of trouble in the 6 to 8 mg range both with fatigue and flares. Once past that level it was almost clear sailing to zero. Good luck on the rest of your PMR journey.🙂

PMRpro profile image
PMRproAmbassador in reply to Michdonn

Have you got to zero Mich?

Michdonn profile image
Michdonn in reply to PMRpro

Yes, it took me 4 years, but now zero and working out 6 days a week getting myself back in shape. 🙂

PMRpro profile image
PMRproAmbassador in reply to Michdonn

Brilliant - I still remember your first post shortly after the wheelchair period!

Michdonn profile image
Michdonn in reply to PMRpro

Yes, PMRpro it was a long painful period, but I never miss a season instructing skiing, maybe not doing as well as the in past, but stayed active and positive. I must admit there was a time when I could walk I was real down! But doing fine now! 🙂

PMRpro profile image
PMRproAmbassador in reply to Michdonn

It just doesn't seem a year since we met in Albuquerque - so glad to hear you are still doing so well!!

Currently at 1.5 mg, dx GCA March/19. Fatigue is definitely there, try to do usual chores, look after the dogs etc. Moving end of the month....... really trying to battle thru, no pains just tired. Rheumy called for scheduled appt a few wks ago. Said he was "delighted" I was doing so well. Commented on my last blood test as "couldn't be better" and hung up after saying he would call again in MARCH. So funny really! Well I think it has actually gone pretty well, thanks to all of you on this forum. Do not know where I would be without you all, it has been pretty lonely. Thanks again Joan

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