GCA and weight loss

[Gran6]

Had GCA confirmed late September 16 put on 60 mg steroids reduced to 40 mg after three weeks now on 30mgs ,not seen a consultant until 21Nov,have lost my appetite and lost a stone and a half feel good one day rubbish the next aching in my hips neck back Anyone else feel like this.

[DorsetLady PMRGCAuk volunteer]

Hi Gran6,

Sorry you're having problems. Most people find their appetite increases with Pred rather than loss of it.

Would think your current aches may be because you have decreased your Pred quite quickly, which could also account for your feeling okay one day, rotten the next.

As you haven't yet seen a Consultant does that mean your GP diagnosed and prescribed reduction plan - if so, think you need to speak to him. Bit concerned you may have something else going on besides GCA.

Hope you soon feel better.

[PMRpro Ambassador]

How was the GCA confirmed? Did you have a temporal artery biopsy? and I'm appalled you haven't seen a rheumatologist as an emergency.

As DL says - I think that is maybe a bit precipitate reducing and you might well be better at 40mg still. Most people just want to eat on pred - my daughter and I are the opposite and DON'T want to eat. There are a few people on the forums who have had severe weight loss with pred so you aren't alone.

And do your bad days come after a good day where you have then done too much? This is a serious illness and you need to rest. If you do too much - it will bite back. The speedy reduction may have led to steroid withdrawal rheumatism -which would account for the aching. 10mg is far too much at one time for most people - 5mg is more than enough. But don't reduce again until you have seen the rheumy.

[Gran6 in reply to PMRpro]

Thanks for this ,I did have a biopsy and it was GCA ,going to GP Tuesday bloods done last week and first appointment with Rheumy 21st .I do tend to rush around and the next day feel rubbish. I do have to make myself eat I used to have a good appetite but I am shore it will come back.

[PMRpro Ambassador in reply to Gran6]

Read these - especially the second one.

healthunlocked.com/pmrgcauk...

High dose pred makes you like the Duracell Bunny - and then you get payback! Slow down, rest - you are not a well person! Your body needs some help to heal - and rest is a good start!

[DevonMichael]

My own GCA experience was the Duracell Bunny when I was on 40mg and need for very little sleep. Both of these have normalised now I am down to 15mg. My appetite also increased but sadly has not diminished and there is now a well stocked fruit bowl to snack on rather than biscuits!

Good luck with your recovery!

[Gran6 in reply to DevonMichael]

Thank you DevonMichael ,I will see what happens at GP on Tuesday.

[HeronNS in reply to DevonMichael]

I was getting curious about the Energizer vs Duracell Bunnies. en.wikipedia.org/wiki/Energ...

[HeronNS in reply to HeronNS]

en.wikipedia.org/wiki/Durac...

[Longwilloe]

I'm a bit relieved to hear that you are also losing weight and on steroids, wasn't sure if this was part of the early day symptoms or due to the stress of the condition resulting in a detachment of emotional eating. Any other time I would be delighted but playing a waiting game just now. Early days I was diagnosed 2 weeks ago.

[Gran6 in reply to Longwilloe]

I am now eating normal but I have not put on any weight,I feel much better with a few aches here and there and on 20mgs of preds but you must rest when the feeling comes over you I have learnt that if you don't you will feel rubbish the next day it's early days yet and like me you are still in shock to find out you have this illness,this forum has been my life line and when I found it I felt I was not on my own and so many question answered I also have a thyroid problem which I have had for twenty years so weight has been a bit of a problem ,but having lost a stone and a half it has stayed off which is good for me. Hope you feel better soon it took a good two months and a better understanding the side affects of the preds which has helped me. Good luck

[Longwilloe in reply to Gran6]

I was the same completely new to this and not many answers to our questions from our medical advisors just now. I'm on 70mgs preds to find out that you've lost weight as well is a bit of a relief if that's the right word for it. Yes, I was thinking the same, that it is shock. This site is definately a lifeline. I've been using the app PatientMpower. It doesn't have the hospital I'm with just now but I think the app company are adding hospitals gradually. The reminder to take meds is extremely helpful. Do you work, I have been missing my work, but know I am definately not work ready (understatement really) but I think this may be stress related as well and my gp has signed me off for a while. Thank you so much for your support . Good luck with your ongoing recovery.

[PMRpro Ambassador in reply to Longwilloe]

Some people lose weight on pred - everyone is different!

[Longwilloe in reply to Longwilloe]

Such a relief to hear that, I was getting very confused!

[Gran6]

I think stress plays a big part in this as I had a new roof put on in August 16 and it should of taken two weeks but turned into five didn't think it stressed me but I think it did and this started September.I am retired but I have two springer spaniels that are full time so I walk every day which I think has helped me .Keep in touch

[Longwilloe in reply to Gran6]

Are you able to take them out for walks now, I've another 7 years before pension age completely makes sense about stress. Think I've been stressed for quite a long time now workwise but who isn't part of the job isn't it. Looking forward to more answers this week. Found out at the hospital on Friday from a doctor that my muscles may be painful and to take paracetamol and co codamol, we didn't know that would definately be happening to me. I knew other people with this condition had extreme pain but no two people are the same. Life is so much easier when we share information especially with rare disorders.

[Gran6 in reply to Longwilloe]

I have always walked them even at the beginning I have muscle pain in my shoulder and neck and front of my chest I take tramadol which helps it a lot ,it get a little worse when I reduce the preds but it then gets better again. Make sure you reduce very slowly .Take care