Am I supposed to feel this "crappy?": Hi all. I... - PMRGCAuk

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Am I supposed to feel this "crappy?"

montebello profile image
53 Replies

Hi all. I have not written for a while, but read each comment every day. I was diagnosed with GCA in mid August, started on 60 mg PRED per day, and am now at 17.5 mg -- following the tapering schedule of my rheumy. I started keeping a diary in mid October to record how I felt each day -- and also graded each day from 0 to 10, 10 being GREAT. I just finished reviewing the diary, because I've been feeling quite rotten, and it seems that no matter what the PRED dosage I cannot consistently feel very well. Recently, I've been hovering around a 5. The highest I've gotten are random and rare 8's. The lowest is a 3. My main problem is awful fatigue, but also GI issues -- either constipation, or diarrhea, or pain in my back and even chest (I even went to the ER once to rule out potential cardiac issues -- which have been ruled out).

Yesterday, I went for another blood test and for the first time since August my CPR and ESR's were both elevated. My rheumy suggested that I go back up to 20 mg per day and to call him if I am still feeling rotten. But I've been feeling rotten since this whole thing started!!

Now I know that we're supposed to watch out for headaches, jaw pain, etc. so I'm not talking about those things. What I am wondering is this: Are GSA sufferers supposed to feel more-or-less okay when they've found the right PRED dosage -- OR are we supposed to feel quite crappy until this stinking disease burns itself out?

53 Replies
PMRpro profile image
PMRproAmbassador

What other medications do you take besides pred? How did you feel in August on 60mg and how long did you stay at 60mg before starting your reduction? These are important bits of information for us to comment.

Not that a lot of rheumies these days seem to understand, but the idea really is to stay at the starting doses until your symptoms are really well under control and the blood markers are considerably reduced and, preferably, heading for the normal range. If you are allowed to do that, the way you feel at that starting dose forms an important reference for the tapering process. You are looking for the lowest effective dose - the lowest dose that works as well as that starting dose did. You should never feel worse at the end of a taper step than you did when you embarked on it. You too have to do your part - being on pred is never a passport to return to your previous normal life and level of activity. Pred CURES nothing - it is a management strategy and part of the management strategy is in your hands with pacing, resting and adapting your lifestyle appropriately.

My suspicion is you have been reducing far too fast - most people would take 6 months to get from 60 to 20. Not 3 months. And there are probably other factors.

montebello profile image
montebello in reply to PMRpro

Thank you for the fast reply. I am taking no other medications aside from PRED. I started on 60 mg for 2 weeks, then 50 for 2 weeks, then 40, then 30, then 25, then 20. My inflammatory markers went to near zero immediately after the 60 MGs. I felt like superman, and admittedly overdid it. But then it hit me -- the fatigue. Bad and strong. There's no way I'm overdoing it now because I can hardly do anything. I wasn't keeping the diary when the fatigue hit, but I'm thinking it was somewhere around the 25 MG dosage.

I do read all your messages and I do understand the need to not overdo it. But again, there's no way I'm overdoing it.

Thanks

PMRpro profile image
PMRproAmbassador in reply to montebello

With that speed of reduction - your body has never had a chance to adjust to the current dose - and that also plays a part, The underlying autoimmune disorder is still active, it tends to make you feel as if you have flu. And pred does nothing for that.

montebello profile image
montebello in reply to PMRpro

Well, even according to you, I have been following the standard taper routine -- so now I'm confused (which is not unusual).

PMRpro profile image
PMRproAmbassador in reply to montebello

I don't think I would EVER say that was a standard taper routine. Two weeks on a dose at that level is never enough.

This is more like what I'd support:

rcpe.ac.uk/journal/issue/jo...

montebello profile image
montebello in reply to PMRpro

Well nuts. But thank you for this, although I don't know where to go from here -- and I'm sure you know what will happen if I confront the rheumy with this information. So bottom line, as per my question, is that I should NOT feel this crappy if I'm at the right PRED level, right?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to montebello

“So bottom line, as per my question, is that I should NOT feel this crappy if I'm at the right PRED level, right?”

Correctamundo!

I never felt that crappy at any dose….. but didn’t taper as quickly as you.

My GP and ophthalmologist were ultra cautious ( for obvious reasons ) and GP & I decided together when I reduced, based on how I felt and results of blood tests.

Took me 24 weeks to get from 80 to 20mg - with 8 weeks at 60mg along the way - that was the real game changer.

montebello profile image
montebello in reply to DorsetLady

Correctamundo! Ha! I love it. Thank you

PMRpro profile image
PMRproAmbassador in reply to montebello

Right!

piglette profile image
piglette

I think one of your problems is that your adrenal glands are having to wake up again and they don’t like it. I was like a zombie around 5mg.

PMRpro profile image
PMRproAmbassador in reply to piglette

They are currently at 17.5mg. After 3 and a bit months ...

piglette profile image
piglette in reply to PMRpro

I think I must have been reading a totally separate post! I need that new Alzheimer’s drug.

tempusfugi profile image
tempusfugi in reply to piglette

Not at all, Piglette. Think you focussed on how montebello was feeling, via his diary. He mentioned 5 in that section!

piglette profile image
piglette in reply to tempusfugi

Thanks for sorting that out. I was starting to panic that I was reading things that were not there!!

montebello profile image
montebello in reply to piglette

I thought the adrenals started waking up a lot lower than 17.5 MG?

piglette profile image
piglette in reply to montebello

Sorry about that they start waking up at around 7mg.

PMRpro profile image
PMRproAmbassador in reply to montebello

She needs new specs ...

SnazzyD profile image
SnazzyD

Hello, sorry to hear you are feeling so rubbish. I don’t know what your expectation was, but I fear you may be aiming a bit high. You are about three months in and this autoimmune condition burns out when it’s ready, usually quite some months from now. Prednisolone is not the cure, it only deals with the inflammation caused by your condition. Meanwhile your immune system has still lost the plot and thinks it needs to attack its own tissues, in your case certain arteries. This alone can make you feel pretty rough. Add in steroids themselves and steroid withdrawal from a fairly brisk reduction plan and you’ll feel even worse. Debatably your reduction plan was too fast for you too and needs to be tailored more to you. This is a serious systemic disease and you are ill; it isn’t a case where you get your pills and get on with life. Many have come before you with the same dismay. It does get better in time but rarely at the speed we are led to believe or would like.

montebello profile image
montebello in reply to SnazzyD

Thank you SnazzyD. You know, if I'm supposed to feel like this then that's fine. But if I'm not supposed to feel like this, because I'm at the wrong PRED level (or decreased too fast), then that's not fine. I guess there's no definitive way to know?

PMRpro profile image
PMRproAmbassador in reply to montebello

Only really if you try a higher dose and you feel better.

SnazzyD profile image
SnazzyD in reply to montebello

I felt weak, tired and very slow. I felt buzzed yet exhausted. My brain raced but couldn’t hold itself together to keep a train of thought. I had to take mine at night because two hours after taking it I felt drugged and uncoordinated for a couple of hours. Oh, and then there’s the sleep deprivation from Pred which is the cherry on top . After a reduction, even smaller ones than yours, I usually felt fluey and had to go to bed from day 1-4 for up to a week. In the early months or above 20mg it is hard to know what is ill, what is Pred and what is withdrawal. As time goes by and with long enough between drops to work out what your new normal is and whether symptoms are coming back, you get to understand a bit more.

montebello profile image
montebello in reply to SnazzyD

Very helpful! Thank you

SnazzyD profile image
SnazzyD in reply to montebello

The trouble is that doctors don’t seem to have the foggiest about the actual experience and seem to have tunnel vision with getting Pred down asap. All this sort of stuff is learned from others and trial and error. Make sure you are eating potassium rich foods (unless you have conditions that affect this) because Pred depletes this. Low salt and low carbohydrate to keep your fluid retention in check and blood sugars/weight averaging normal.

montebello profile image
montebello in reply to SnazzyD

Thanks! Will look into potassium

Blearyeyed profile image
Blearyeyed

You do seem to have been given the usual advice about tapering but , one size doesn't fit all , and most people need to reduce the dose based on their symptoms not by a timetable. When do you take your steroid , do you find that taking it then gets you through the day ?You did say somewhere that you aren't taking anything else. Have you been given any medication to help reduce side effects and deficiency like Adcal D3?

Do you take your dose with something like yoghurt and honey or a PPI to reduce gastric symptoms?

Have you had your vitamin and iron levels checked recently ?

Especially Vitamin D , Iron/ Ferritin Panel , Folates and Vitamin B12?

If you get low or deficient in these , which can easily happen when dealing with a chronic health issue ( even with a good diet and daily combined supplement ) it can make your side effects , digestion , fatigue and pain worse.

It might be a good idea to get these checked and get a baseline now so you know if you need extra supplements.

Many people require extra Vitamin D , K2 and Magnesium each day to help reduce symptoms and fatigue , on top of their other supplements. 200-300mg of Magnesium is one of the recommendations I have read and followed to help reduce neuropathy and osteo aching.

Vitamin B 12 and Folates are needed to help your metabolism and improve digestion , liver function and the nervous system. A B complex can make a big difference to Fatigue , numbness and gastric symptoms.

Hydration with the recommended daily fluid intake also helps fatigue , digestion and pain as the body needs plenty of water each day to cope with processing medication and healing.

Diet changes can also help like reducing white carbohydrates, processed food , refined sugar and , if you are intolerant gluten or lactose. Lots of variety in vegetables and fruit and soluble fibre and healthy protein foods can also help to improve your sugar balance and prevent insulin resistance which can be a side effect of steroid use. Probiotic yoghurt and fermented foods can help the stomach and acid that can cause chest pain.

Gentle stretches and little strolls , even in the house , on bad Fatigue days help reduce aching and stops the Fatigue taking over. Try relaxation techniques and if you have trouble sleeping create a good sleep plan.

You may also be expecting too much from yourself , and possibly not quite be at the point of Acceptance of the New Normal while you have GCA. Many of us think we have slowed down , for Us , but often that isn't enough for our bodies under the new strain. Look at what you try to achieve each day and see if you are pacing activity and rest enough. None of us did early on. Getting the balance right often makes a big difference to our Fatigue and Positive mood . We may do less but feel better doing it.

I felt like poop many times with GCA , especially if I got other symptoms like constipation, nerve pain, fatigue and normal migraines , and if I had an infection, or my nutrition was suffering , I would also get a flare. If you feel generally unwell it's better not to taper on regardless even if all the symptoms you are getting aren't typical GCA or PMR, because , doing so inevitably causes a flare and a lot of yo-yoing of the doses.

It can be better to return to a dose you last got good daily scores on , get those health checks done , make the adjustments you need to , and give you body time to recover and heal from symptoms before you taper again.

A slower taper can mean a smoother recovery and the consistency can end up meaning you are on steroids for less time over all.

Remember, it's the slow and steady tortoise that wins the race , not the hectic hare.

montebello profile image
montebello in reply to Blearyeyed

Incredibly helpful. Thanks so much. BTW, non on my Healthcare providers have mentioned anything about taking supplements, but I'll be chasing that down. Also, interestingly, I feel great when I wake up and drink my coffee, but after taking the PRED I get weak, a bit dizzy, and the fatigue sets in. Who knows! Thanks again

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to montebello

".. but after taking the PRED I get weak, a bit dizzy, and the fatigue sets in. Who knows!"

For how long? Perhaps you need to be discussing with medics... and consider taking them last thing at night, or if you wake up at night for comfort break - may help...

Please don't assume that supplements are a magic bullet - if the issue is with the Pred...

montebello profile image
montebello in reply to DorsetLady

Hmmmm.... not a bad idea to take PRED before bed. Oh, and as for supplements, I'll consider them but I've been down that road before with PMR and they didn't do too much good. Thank you

Blearyeyed profile image
Blearyeyed in reply to montebello

Yes , the supplements and things like Adcal are not a substitute for any medication in any chronic illness , but an add in, to help the body remain healthy in general and cope with the illness and side effects of the steroids.DL has just mentioned the answer that I was wondering about when I asked when you take your Pred.

Consider the option of taking a gastric resistant (slow release) steroid in the evening so you are past the side effect stage when you get up. If you consider you are still feeling sickly after trying a different time , you could try another brand in case you have an issue with tolerance of something else in the pill itself, or look into treatment options like steroid sparers like , Methotrexate.

montebello profile image
montebello in reply to Blearyeyed

Thank you blearyeyed. BTW, I just read your bio. I feel for you, and now understand the reason for your "handle."

Blearyeyed profile image
Blearyeyed in reply to montebello

Thanks , hope things improve for you. Don't forget although you started on a dose for GCA that is very high , and you may have tapered below 20 mg too quickly you are still on a high dose at 17.5 mg and the side effects are as big as that dose as it is for people just starting their steroids with PMR.Although , you can get the classic symptoms of the GCA or PMR under control with the steroids , you are still unwell and will continue to have side effects and not feel yourself.

PMRpro profile image
PMRproAmbassador in reply to montebello

Other than calcium and vit D I have never taken any supplements. You don't need them unless you are proven to have a deficiency and a good diet supplies most things plus your body does better on nutrients suppled naturally. You are unlikely to find a doctor who supports large amounts of supplements as magic bullets - if they do, they are most likely to also be selling them.

montebello profile image
montebello in reply to PMRpro

Thank you!

Cantfindanam profile image
Cantfindanam

Hi there you sound just like me I can only speak for myself and say I have no idea if we are supposed to feel OK when we find the right level of pred. All I know is that I was Euphoric on 60mg but never slept,like yourself had hospital emergency visits when reduced down to 17.Many other problems on my journey.

Am now on 6m ,everyday my body aches and I am overwhelmed by fatigue .

I was diagnosed in April 2021 with GCA

I wish you,myself and anyone else suffering as we do a little respite.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Cantfindanam

At the risk of sounding boring -too fast a taper for you - GCA never fully under control, and now at 6mg your adrenals stuttering -which is no doubt causing the fatigue.

arvine profile image
arvine in reply to Cantfindanam

Curious, after thinking I knew what GCA symptons were, jaw pain, headache etc, what symptons did you have to be diagnosed with GCA, and how did dr diagnose, what tests were ivolved please, thank you

montebello profile image
montebello in reply to arvine

For me, a strange, strong headache over my right temple area that would not go away, weight loss, GI issues, jaw weakness when chewing, and finally a positive temporal artery biopsy. Hope this helps.

Cantfindanam profile image
Cantfindanam in reply to arvine

Jaw pain especially on chewing Headache over left temple that persisted neck pain. Bouts of Extreme fatigue.I had Blood tests CT scan .Elevated levels shown in one blood test the other was borderline. These levels have remained the same at each blood test.

montebello profile image
montebello in reply to Cantfindanam

Do you mean that your CRP and ESD levels were elevated, but never decreased even after treatment with PRED? Could you say more?

Cantfindanam profile image
Cantfindanam in reply to montebello

Sorry to sound so dim but I know I don't ask the right questions when I get my results. I am told that one is slightly raised the other is now within acceptable levels.Don't know which one is which.

Bluey-1 profile image
Bluey-1

Keeping a diary is a good idea. I have been doing the same. I started on 60 mg pred at the end of June 22 for GCA. Felt as you describe from the start. Tapered too fast and had a blip at 17.5 mg, back up to 20 for 6 weeks. I felt normal for a while on holiday. I have felt quite depressed and grieving for my old life so, maybe unwisely, following a viral infection, decided to go on holiday again and struggled. By now I was back on 17.5 but on holiday had headaches and jaw tension on one occasion. Rheumie advised to go up to 20 and have bloods on return. All good and I have been on 17.5 now for three weeks. Bloods due on 16/12. I feel rubbish at the moment but I think that is mostly another cold which I’ve picked up from my husband this week and awful pred induced insomnia. I feel so much better when I get sleep. After much discussion with my GP, I am now on a course of anti depressants which are helping sleep and my anxiety. It’s hard to unpick what is what with this insidious illness. I seem to be susceptible to whatever is going around, even though I’m not going anywhere at the moment. I think I’m finally realising that I have to give in to it but I’m not a happy bunny. I can’t see the end. I do appreciate people here like DL who has been through so much and has hope for us that things will get better. I hope you improve soon, can appreciate those days that are an 8 and that you have many more of them.

montebello profile image
montebello in reply to Bluey-1

Thank you bluey! Hang in there.

Bluey-1 profile image
Bluey-1 in reply to montebello

…and today is a better day! Hope yours is too.

Lilly-Gee profile image
Lilly-Gee

Sorry to hear you are feeling low. All the good advice has been said here to you already and it sounds like you are doing everything the way most of us do with Prednisone (thank goodness for this wonderful site). My only extra advice would be to get some supplements if you don’t already, magnesium is my favourite followed by vitamin d +k2, CoQ10, my hair started to fall out and change so I also take collagen and biotin. The vitamin D helped me feel less unhappy and less tired. I had my level of vitamin d tested about 6months into diagnosis and it was very low. Now it’s good, as weird as it sounds I try to get sun on me for at least 20 minutes in the day which can be a challenge where I live but it makes me feel good. It also means I get outside to exercise. Magnesium will help keep you regular 😋 too. I try to walk everyday and do some easy weight bearing exercise. Look in the files section of this site for info on magnesium and good luck to you 👍

montebello profile image
montebello in reply to Lilly-Gee

Thank you Lilly-Gee. I'll be looking into supplements. We'll see.

Viveka profile image
Viveka

I think it's remarkable you can report any 8s at this stage. As everyone has said tapering too fast can make you feel crap because your body doesn't know what's going on and is in constant withdrawal, and that's on top of the illness which will still be active at this stage. So double crap. UK guidelines would suggest stay on 20 for a month and my rheumy would suggest get bloods checked before going down. Many of us have been put on the too fast taper thing and then had to slow and steady.

What you're questioning is overall level of feeling ok/tiredness through being on pred. So if we take withdrawals and flares out of the equation, I have found that it varies. Sometimes you will feel ok for days or weeks then you don't. You may taper and think you'll feel better but you feel more tired. Then suddenly you'll perk up. From my experience once you are under 20 on a sensible taper, and so long as you don't overdo it you should feel ok/less tired. (Adrenal territory is for the future).

Once you get stabilised, so long as you don't expect too much and you look after yourself, it will improve, but there will be challening times too. It is a brilliant idea to keep a symptom diary because it helps you to know your body. Then there will come a time when you forget to write in it because you are ok.

You are at the acute stage still but this does not last forever and you will feel much better.

montebello profile image
montebello in reply to Viveka

I like your reply because it sounds REASONABLE. It tells me that I should expect fatigue, discomfort, etc. as I go through this, even if I'm doing everything right. It also tells me that if I. I'm tapering too fast, those conditions will be worse. Again, thank you.

Elephants2019 profile image
Elephants2019

hi! I just read this and understand your question! I too never felt “right”, which made me question treatment. Was I on right meds? Was I misdiagnosed, etc. I have begun my third year of dealing with this disease and finally made a turn to feeling “good”…I started Actemra last February, and even then, it was 4 months before I started feeling a difference. I am now down to 4.5 prednisone, the tapering always throws me off for about a week, but finally thinking I can get off this prednisone, and so looking forward to remission. I wish you the best!

montebello profile image
montebello

Thank you elephants. How long were you on PRED before you went on Actemra -- and what dosage were you using at that time?

Thanks so much

Sharitone profile image
Sharitone

are we supposed to feel quite crappy until this stinking disease burns itself out?

Montebello, I am on 1.5mg pred, having descended from 60mg 20 months ago, and I still feel like crap, even with the help of Actemra over the last year. Maybe a teensy bit better from when on 17mg. I hope your increased dose has sorted it out for you, but if not, I can only think it's a question of hanging on in there.

montebello profile image
montebello in reply to Sharitone

Thank you!

Grammy80 profile image
Grammy80

I'm really late to the game here, montebello, but you have gotten some stellar advice. Life has been a three ring circus here but just a few thoughts I hope aren't redundant. It is a bumpy ride, like a wooden roller coaster. I wish I'd kept a diary! I take sulcrafate, a prescription, but that knocked out any gastro issues the whole 3+ years. I'm now at 4.5mg but have been tapering so slowly .5 mg every 4 weeks. Initially, I would get super exhausted but at .5mg, it doesn't seem to bother my body much. Who knows, my adrenals may be working??? You are walking through cloudy and rainy days to get to the sunshine....but it is there. I was diagnosed August 2019. Be a little kinder to yourself.💞

montebello profile image
montebello in reply to Grammy80

Thank you Grammy. I always appreciate hearing from you.

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