Do you get increased side effects from Pred when you up it to deal with a flare? (GCA)

[HappyDiamonds]

I have increased my Pred due to a flare (from 10mg to 30mg) which I have now been on for a week and I'm sure I'm not imagining it but the side effects seem worse on 30mg now than when I was tapering down. Im not feeling at all well, very fatigued and shaky and not too good on my legs in fact a bit doddery although no pain or stiffness. Once I get outside walking steadiness improves. The 30mg has helped the pain in the back of my head and shoulders, tops of arms but although I have no headache I am aware that I have GCA with discomfort in the temple/ear/eye/sinus areas but its not the awful original pain before diagnosis. Until the flare I didn't have any discomfort at all and was able to fully enjoy my usual life within reason. Anyone else found this please? I would love to feel as well as I did in January on 12.5mg

[DorsetLady PMRGCAuk volunteer]

The higher the Pred, the more likely some side effects are more noticeable for sure. Are these the same side effects you had at this dose before or completely new ones?

You might have felt well on 12.5mg in January, but obviously trouble had been brewing for some time without you realising - until as PMRpro describes it “the dripping tap into the bowl of water suddenly causes an overflow”

Would have hoped after a week, you would have got rid of all GCA symptoms- but maybe it will take a little longer......if it doesn’t resolve within another week, you need medical advice.

[HappyDiamonds in reply to DorsetLady]

I didn't have these side effects at 30mg before although I have always had a sort of shakiness inside on higher doses but to a much lesser degree. Can honestly say I feel 20 years older today than a few weeks ago. Thanks for the explanation, makes sense now. I have a phone appointment in 2 weeks time but should go down to 25mg after another week on 30mg.

[DorsetLady PMRGCAuk volunteer in reply to HappyDiamonds]

I think you may need another appointment before you decrease - particularly if you don’t feel any better.

[PMRpro Ambassador]

By the time you got to 30mg on the way down the inflammation of the GCA was probably well under control - this time it isn't and that is why you have been told to increase the dose again. And that will probably make you feel pretty ropey until it is under control again. It is often difficult to tell the difference between the illness and the pred effects I'm afraid.

But as DL says - speak to the doctor if things don't improve soon.

[HappyDiamonds in reply to PMRpro]

Thank you. Ropey just about sums it up! I have a telephone appointment in 2 weeks time and already stressed that I want to go down much slower but they are going to push me hard for MTX . I am now considering it and read my Kate Gilbert book again who suggested GCA patients to try it. I would value your opinion and Dorset Lady's on both how I should taper down from now on and whether to give MTX a try so soon. The more info I have for my appointment the better.

[PMRpro Ambassador in reply to HappyDiamonds]

There seems to be some agreement that MTX works best when introduced early, especially in GCA. I don't know - I just couldn't cope with it for several reasons.

I don;t think you should be made to taper down until you feel reasonably well and there are no signs of GCA symptoms but certainly you would need to speak to someone if you don't feel rather better by the date you are to go down to 25mg.

[Kendrew]

Can't help you with the tapering but might be of interest if I tell you that the side effects I experienced on higher doses of pred as I tapered first time around, returned the second time around (after I had to increase back up to 15mg from 2.5mg after my first flare) but with much more effect!........'jelly legs' felt weaker and more wobblier, fatigue was more severe, moon face developed, more hair on arms, quicker weight gain & more 'peach fuzz' on sides of face. I was expecting the side effects to return but I wasn't expecting them to be more pronounced! They are beginning to subside with reduction of steroids.

[HappyDiamonds in reply to Kendrew]

Thanks Kendrew. It seems wrong to say Im glad you experienced it too but I'm sure you know what I mean. Its lifted my spirits a bit this morning as I was beginning to think I was becoming a wuss and hypochondriac! I was so disappointed to have to increase back to where I was last August. Thank you too for giving me the perfect description "jelly legs" to mention to my Consultant at my appointment I just couldn't put a name to it. Sort of matches my new jelly belly unfortunately 😀

[Kendrew in reply to HappyDiamonds]

Haha! I have that jelly-belly too!😄 I know that disappointment of having to increase my steroids only too well. I think that although it's important to be aware of side-effects and symptoms as they emerge it's also important to keep them in perspective. I sometimes feel like I'm waking every day with some new sensation or feeling, and I could easily become a nervous wreck contemplating what everything is, but I try for the most part to go with the flow and accept that its all part of being on pred! You can analyse things too deeply and that just breeds fear and anxiety and causes the body more stress. The longer I have this condition, the more I recognise what to be concerned about and what to dismiss and just be patient about. Don't sweat the small stuff....it's still frustrating, but much better to be focusing on the real concerns....like any return or increase in head, neck shoulder pains, visual problems, loss of mobility etc. Much of this passes and what doesn't can often be sorted or at the very least, managed . 🙂

[Hidden]

I have felt shaky ever since starting on Pred in Dec 2019...horrible side affect. I didn't realise that so many symptoms of GCA are the same as PMR, so can be confusing. At present I'm alternating days by taking 9mg one day and 8.5 mg the next. Can't wait to see how I get on with 7 mg which I will try on the 1 April. Or maybe better to continue to alternate and take 8.5 mg, then the next day 7 mg....trail an error I suppose but going slowly is the key. I'm lucky as I've never felt fatigue, so that's a bonus. Do hope you start to feel better soon. Such bad luck you having to go up to a higher mg again.

Anne

[SnazzyD in reply to Hidden]

Alternating might be ok for you but at these low doses when the adrenal gland really needs to be kicking in, the lack of 0.5mg on one day can make one feel ropey. The lower you go from 8mg the more likely you’ll notice. I know some docs favour this method as a way of challenging the adrenal gland but it would have floored me (fatigue, aches, shakes, emotional) because my adrenal gland didn’t really start until about 5mg. I introduced each 0.5mg drop in slowly over. 6-8 weeks. You may be fine but if you’re not don’t despair, it just needs a change of tack.

[Hidden in reply to SnazzyD]

Thanks Snazzy.....I'll only drop by 0.5mg and still take it very slowly. I always appreciate any advice given X

[HappyDiamonds in reply to Hidden]

Thank you for your kind words and I agree the shakiness is not nice at all but Im not sure whether its the disease or the Pred causing it. Good luck with trying the next step on 1st April, you must be very organised to be able to alternate Im sure I would end up getting in a muddle it doesn't take much to confuse me these days!

[Hidden in reply to HappyDiamonds]

Haha ! me too, if I didn't keep a note book and write everything down I'd been in a mess. I write down daily the mg I take, side affects and symptoms. I was diagnosed in Dec 2019 with PMR, rheumy started me on 15 mg all was well until 13/3/20 when the dreaded GCA kicked in.I was then increased to 40mg and been tapering slowly ever since.

My only symptoms of that was jaw claudication and tender side of my

head, which soon stopped with the increase. I think GP's and Rheumy's

tend to reduce too quickly from a high dose, but I take notice of the ladies on the forum, they all give good advice as I'm still a novice. I

mustn't be negative, but really hope I don't get problems on 8mg and have to go higher again....I'm taking each mg for a month, albeit by 0.5mg.

Good luck

Anne

[PMRpro Ambassador in reply to Hidden]

Going from 9 and 8.5mg at present to 7mg on April 1st is a VERY big stepdown at this stage.

[Hidden in reply to PMRpro]

What do you think of 8.5 one day and 7.5 the next for the whole of April ? This was suggested by my rheumy.....but it's trial and error I guess. The only bit of discomfort I'm feeling is slight pain in the muscles in both of my forearms when I lift them above my head. No fatigue or any other symptoms....so far !!

[PMRpro Ambassador in reply to Hidden]

Totally unfair on your body. It is still too high to really stimulate adrenal function and lots of people find relatively big swings like that uncomfortable. Try it - but if it doesn't feel right don't stick with it

[Flosy in reply to PMRpro]

Hi.what dose do adrenal start to workAm on 8mg.at mo.started at 60mg in march 2020.been back upto 10mg.twice.any advice for me.thank you.

[PMRpro Ambassador in reply to Flosy]

Depends - you may start to feel the effects from about 8mg as they start to wake up and aren't actually contributing much but mostly you have to get down to 5mg for them to be needing to do alot.

[Flosy in reply to PMRpro]

Thank you.how do you know,when they start to wake up.

[PMRpro Ambassador in reply to Flosy]

You start to feel less tired - if indeed you felt tired due to low adrenal function. Not everyone does - others go through it for a long time. Snazzy could feel the fatigue while reducing from about 7 to 3mg I think.

[Flosy in reply to PMRpro]

Hi.yes I feel very tired every day feel like to stay in bed.is it ok to go for a nap in the afternoon.some days have make myself to do things.is that normalThis site is very helpful.hope I am not being a pain to anyone on here.if so sorry.

[PMRpro Ambassador in reply to Flosy]

You don't have to ask permission to have a zizz!!! And you might find that then you last through the evening and sleep when you do go to bed - remember Gran's "he's pst tired..."

Fatigue is part of almost all autoimmune disease - and I imagine almost everyone would say they have to force themselves to do anything they don't really fancy doing!! Motivation is often very hard.

Have a read of this:

healthunlocked.com/pmrgcauk......

[DorsetLady PMRGCAuk volunteer in reply to Flosy]

I think I’d probably got down to 3mg before they really kicked in.....from 6mg down to that dose I just got random bouts of fatigue, nothing else.

[Flosy in reply to DorsetLady]

Hi.thank for reply.yes I get very tired,find if I go to bed to early I cant sleep.

[PMRpro Ambassador]

No - because dropping from 8.5 to 7mg for a whole week would be far too much.

You know what we all think: no reduction should be more than 10% of the current dose and a gradual introduction works. Trying to rush it NEVER works, especially at this stage. The theory is fine - and might work after only a short course of pred but the practice after a long period on pred is likely to be pretty uncomfortable.

[Hidden in reply to PMRpro]

What would your suggestion be ?

[PMRpro Ambassador in reply to Hidden]

I'd have thought you would know what I would say by now!! Use DL's or my slowed taper to slowly reduce to 5mg. Adrenal function will slowly start to return as you reduce the dose without you feeling too tired or unwell.

[Hidden in reply to PMRpro]

Yes, I did start to use that method but experienced a few problems.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

What in particular? If you tell either PMRpro or myself we may be able to help.

[Ssratha]

Yes. 30mg is quite high, side effects for sure from my experience