Hello - I am new here: Hi there. I was diagnosed... - PMRGCAuk

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Hello - I am new here

Goldfinchs profile image

Hi there. I was diagnosed with PMR in April 19. Had been exhausted, losing weight and then had chronic pain in my neck which was diagnosed as PMR. Pain went within 24hours of taking Pred. Since then tapered, flared, tapered etc. Have Cushing symptoms - miserable on Pred - hair growth, round face, weight gain etc. Saw rheumatologist in March who advised speedy taper to get me off Pred. After reducing from 18 to 12.5 in 2 months am having symptoms of fast reduction. Have to sleep every afternoon - totally exhausted. Don’t want to increase Pred again - lock down giving opportunity to taper and rest. Need advice how to lose weight and how to exercise. Quite sure I am extra sensitive to Pred hence the side effects. Think exhaustion etc is lack of cortisol. Adrenals not yet fired up. It is making these special years of life difficult to say the least.

23 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Think you ought to read this for starters - it might help you understand the illness a bit better.

healthunlocked.com/pmrgcauk...

You’ll see that the side effects you have are quite normal albeit unpleasant.

Your adrenals won’t start working again until you get below 7mg or so.

I don’t think your Rheumy is doing you any favours by trying to get you off the Pred quickly - if you need the Pred to control your symptoms- you need the Pred.

Yellowbluebell profile image
YellowbluebellAmbassador

Your rheumy needs some lessons on how to taper pred. Firstly with pmr there is no such thing as a fast taper. Pmr lasts up to 6 years and pred manages the Inflammation caused by the autoimmune disease. All the symptom you have are also the symptoms of pmr not just pred.

Your exhaustion is not caused by your adrenals not working as they wouldnt start to work again till you get below at least 7mg and for most people a lot lower.

The only way to manage weight gain on pred is to cut carbs. I was warned to but if ignored the advice and put on two stone. I have now cut my carbs and have lost a stone. It really is the only way. The moon face is one of those things and most of us have it but just have to put up with it till we taper down on pred. I am only just at 7.5mg nearly 2 years after starting pred and my gp and rheumy advised a slow taper which is what a decent doctor and rheumy should do and not reccomend a rapid taper. I am sure others will be along in a bit to give you more advice but you need to take control of your diet and probably try and get s rheumy who has experience of pmr. Good luck.YBB

Hi and I hope I can help. My mindset was if I get to zero prednisone I will be better. So for the first three years it was up and down crash and burn. I got depressed and ate my way to comfort and 80 lb weight gain. The closest I got to zero was 7 and then back to 30.

I was finally diagnosed in Dec 2015 and at present am still on 15 mgs. I have a new rheumatologist and she has ordered actemra but now that I have been struggling with diverticulitis she is unsure if we will ever start it as bowel perforation is a known side effect or at least that is what I thought she said.

I said all that to say this. Your life has changed and it will be easier on you if you find your limitations and try not to push them. For instance In my previous life I would spend all day in the garden. Now I am overjoyed when I get two plants into the ground. I have had to change my whole mind set or I would just get depressed. I now give myself permission to be what I would call lazy. I tell myself I am retired so if I enjoy getting out my bird book and binoculars then so be it. I do my painting and play with my stamps. My apt is never as clean or tidy as I like but then who cares.

I have learned to break up chores and know I will never get them done in one day. Because if I did then it knocks me down n I am in bed for a week if not more.

So today is clean the bathroom. Tomorrow will be the kitchen etc.... just make it fun on planning and don’t push yourself. It doesn’t help.🦋

Maisiek profile image
Maisiek in reply to

Well said - I totally agree. X

SheffieldJane profile image
SheffieldJane in reply to

Sound advice Lin! X

Yellowbluebell profile image
YellowbluebellAmbassador in reply to

You sound a lot better lin. How are things going with antibiotics?Xx YBB

in reply to Yellowbluebell

I have 5 more days of antibiotics have been tired so I sleep. I was so freaked out at first by Cipro but then realized it didn’t help to be afraid. The cramping is a lot better but not all gone.

I have been being entertained by afternoon thunderstorms and showers with hail on occasion. We had a weird wind storm with hail blowing at 45 degrees so weird to see then found out our town next door had major damage with roofs blown off and trees down n electric out. I think HAARP is playing with the weather again. EU told them to knock it off but boys with toys and all that...

Yellowbluebell profile image
YellowbluebellAmbassador in reply to

They were supposed to be opening to the public again this year but guess covid put paid to that!!YBB

Hello and welcome Goldfinchs.

Fatigue goes hand in hand with autoimmune diseases, please allow yourself to be ill and take your time to heal. It is likely that your disease is still pretty active, particularly if you under-treat the painful inflammation. These special years can be even more special if you accept the disease and cultivate gentle pass times that you may never have had time for. My painting and drawing has crept back, having lain dormant for all the years as a full time working mum, gardening and nature have become so meaningful. Oddly ( your name) I have so many goldfinches at my feeders and living in my Laurel tree. It is like watching a soap opera. Enjoy your restoring naps, eat a healthy diet. The face goes down again and in my case back up again due to GCA after PMR. Stick with us, it really helps.

Sounds pretty normal for Pred; you just haven’t been informed by your docs so it feels abnormal and they also don’t seem to be realistic about the timescales of reduction. This is a project of years not a few months. Going on an ultra low carb diet will stop the weight gain. I was on 60mg Pred for GCA and didn’t put on any weight by eating no pasta, rice, potato, flours, maize etc. I had plenty of veg, protein, fats and some fruits especially berries. Low salt stops the fluid retention.

The idea behind tapering Pred isn’t to get off it pronto but to find the lowest point that will help your symptoms. Hurrying off and then having to go back up really needs to be avoided because you end up taking more Pred than if you reduce slowly.

Sleeping in the afternoon is also par for the course with autoimmune conditions and Pred withdrawal. The facial changes and hair are normal and temporary. Again, you’ve not been given a realistic picture. It does get better and again, is quite normal. Your adrenals are not a consideration until you get well below 10mg. Right now, your adrenals don’t need to work because you have more than enough cortisol in the system, so don’t worry about that. Right now, you need Pred to keep inflammation at bay while your body decides when to stop attacking itself.

I see you have already gotten some advice from the best....I wanted to say welcome but mainly I am so happy you found this forum, it has made all the difference in the world to me just having the availability of these wonderful people sharing their knowledge and giving their support. I do not have PMR, GCA, but am personally not driven to get to 'zero', I just want good management and to feel well. I'm only 11 months into my steroid journey.

Again...so glad you are here~! These folks 👩🏿‍🤝‍🧑🏻👩🏾‍🤝‍🧑🏻👨🏿‍🤝‍👨🏾👨🏾‍🤝‍👨🏾👨🏾‍🤝‍👨🏾👬👬 rock~! xo

Yellowbluebell profile image
YellowbluebellAmbassador in reply to Grammy80

No rush just take it slow and steadyxxxYBB

Count my memory...GONE!! I think it was two days ago I started one of the UK/Dorset Lady plans. The calendar is taped to my cabinet door in the kitchen to avoid any errors. So far so good....and also count me THANKFUL~! xo💖

Thank you very much, everyone. So appreciate you taking time to respond. It is so helpful to have contact with others who are on this journey.

I have read much previously. It was very interesting to hear the issue with my own adrenals won’t be an issue until I get down to below 7 mgs.

Many other interesting and helpful comments from you all. I need to do my best to get my health into a better place - gentle exercise - I can no longer walk or cycle for long. And I need to adjust my diet. It is very hard when you feel completely exhausted - the desire for carbs to give energy is very strong.

Have a good day all. And thanks again.

Grammy80 profile image
Grammy80 in reply to Goldfinchs

You are doing just fine...and now you are not doing it alone. All of the things you mentioned...diet, exercise, general health..are important for sure. I have found it was just asking too much of myself to work on all that stuff at once. Resting when you need it or just 'feel it' is so important...that was stressed to me by a long time patient. I do try to take a little walk every day, even just for 15 minutes to remind my muscles what their job is.

For me...eating properly is still a challenge. I'm not ever hungry and until recently was not motivated to cook anything. Just try to eat vegetables and some fruit...maybe some yogurt. That is easy....and then it isn't something else you are 'working on'....but yourself some slack and take your time...all things in good time, not all at once. xo

Glad you’ve made it to this group as it can be so helpful and supportive. Cutting the carbs is the most effective but I couldn’t quite face that early on so I lost my weight through Weight Watchers. Now they are doing Zoom meetings so that might help too. Keeping mobile is good but don’t overdo it (so easy) and take regular rest. The folks on here can offer excellent advice and this group has seen me through some difficult times. You will get through this but be easy on yourself. Don’t rush to reduce the Pred - it’s helping you get through this condition. One lesson I learned is that PMR will not be hurried. Take care x

PMRpro profile image
PMRproAmbassador

Adrenal function shouldn't actually come into the equation at this stage - as long as you are on above 10mg you have more than enough corticosteroid available so they don't need to make more.

But do tell us a bit more about your first year on pred - to still be on 18mg after 11 months does seem a lot because most people would have started at 15-20mg and remained there for not more than a couple of months before starting to taper slowly. And that is where you probably were sent off on the wrong path. SLOWLY is the secret.

And cutting carbs - that will probably help the fatigue. Has your GP been checking blood glucose and Hba1c levels over the year? We really DON'T need sugar to provide energy. Moderate amounts of complex carbs at most - but the human body adapts to what it is offered, even no carbs, though we don't recommend that necessarily. It is very possible that if you are eating lots of simple carbs that is contributing to your fatigue as the blood sugar level sails up and down like a rollercoaster.

Goldfinchs profile image
Goldfinchs in reply to PMRpro

Hi. Thank you for your reply PMRpro. I started on 15mgs in April 19. Reduced according to Drs taper guide. Got down to 9 then gasps a flare so went back to 12.5. Gradually back to 9 but fatigue awful. So recommended to go back up a bit. Dr recommended I went back up to 15 because of extreme emotional stress over Christmas and New Year. Mid Jan had major flare so was advised to return to go up to 20mgs. Went down to 18mgs mid Feb, saw consultant mid March who advised immediate reduce to 15mgs and on down from there.

The fatigue is not peaks and troughs of blood sugar. Am monitoring blood sugar and it remains consistently on low side. Have had blood tests for Diabetes but all well. The fatigue is almost other worldly!! Like all my energy drains through my feet - always between 1.30pm and 2.30pm. Mind goes into a fog and body feels like it’s closing down. Have to drag myself to bed. Usually sleep for up to 2 hours and wake refreshed.

One big problem is PMR has not been taken into consideration by friends and family. I talk about it but somehow it’s not considered. August to December was exhausting in the extreme with work and family then December to mid Jan emotional and heart rending with various losses. How do you convince family and friends that you are ill when you don’t look it?

Thank you again.

PMRpro profile image
PMRproAmbassador in reply to Goldfinchs

Have you tried resting BEFORE you crash? The fatigue is a natural part of almost all autoimmune disease but isn't improved by the pred - it must be managed by pacing and resting. I found that preempting the fatigue made a big difference and made less of a hole in the day,

healthunlocked.com/pmrgcauk......

has a set of links that may help you identify and possibly manage aspects of fatigue. And may be useful to show family - especially Spoons. But when it comes down to it, you have to be strong minded and just say no.

I fear your GP didn't help you by allowing/encouraging you to get into a yoyo pattern with the pred dose. You need to get Occy Health onside with work for adaptations to make it easier to continue working. And possibly look at sick leave to get things a bit better under control - because if you are exhausted and force yourself to keep going then you never do recover, you are always playing catch-up.

Goldfinchs profile image
Goldfinchs in reply to PMRpro

Hi PMRpro

In previous posts you have mentioned you have lost a significant amount of weight while on Pred. Please could you share how you did that? Was there a particular programme you followed of what to eat and how to exercise?

I am continuing to gain weight, am struggling to exercise because of fatigue and lack of energy. Really concerned where this will end if no intervention.

Thanks so much

PMRpro profile image
PMRproAmbassador in reply to Goldfinchs

I cut carbs - drastically. In order to lose weight I have to be down to 20g carbs per day although I do maintain weight a bit more easily. Snazzy is the same. No rice, pasta, cake, biscuits, fruit, small amounts of root veg in winter but mostly salad and above ground veg, protein and good fats.

Originally I couldn't exercise - I was on crutches because of an achilles problem. Any amount of movement is a start and I walked to the village and back, a few hundred yards, on the crutches.

dietdoctor.com/

is a good introduction to what to eat and not eat. Most people who struggle doing it haven't given up fruit - a lot of hidden carbs in an apple! It doesn't have to be keto - that is next to impossible when on pred because the liver is triggered to release glucose in random spikes whatever you do. And it really does pay to keep a record at the start unless you have a brain like mine that looks at a food and just knows it is solid carbs!!! Too many years in the biology and physiology labs ...

Goldfinchs profile image
Goldfinchs in reply to PMRpro

Thank you for your support. I will head the way of cutting carbs low as poss. 😃

Sorry about the typos and odd words! Time for rest!!

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