Had to go back

[Flosy]

I had a appointment with rheumatology yesterday,I told him about my headaches I been getting,and aches and pains,he was more worried headaches.so he has put me back up to 20mgs for 2 weeks,then down to 15mgs and on 16th Nov 10mg.would like like advice.

[PMRnewbie2017]

Perhaps he is wondering if the headaches are the beginnings of GCA. This is why he had upped your dose, to quickly dampen down any inflammation. Please don't get into a panic, the pred will do its job. I began with suspected GCA plus PMR four years ago so have been there. The higher doses will give you lots of energy, you may put on weight, you will feel fantastic. But, don't eat more, cut out carbohydrates and sugars, and curb your desire to train for the next Olympics! Switch your dose time to 2 am or very early in the morning. This has benefits for reducing the inflammation but also reduces insomnia (issues with sleeping). If you can, increase your intake of oily fish or take Omega 3 supplements. I took 6 daily in the early days. I swore it helped as I had a really easy ride on this PMR GCA roller coaster. I stopped a year ago and have had good and bad times. I've started again and feel much better, less inflamed, more energy. Avoid worry and stress, easier said than done, but it solves nothing and won't help you recover.

[Flosy in reply to PMRnewbie2017]

OK thank you very much.

[Broseley in reply to PMRnewbie2017]

Hello PMRnewbie2017, I am recently diagnosed and have been on 15mg of pred for 2 weeks upped to 40mg for the last 3 weeks due to suspected GCA (awaiting biopsy result and rheumatologist appointment). I am feeling so fab, like you say above, I haven't felt so good since I was about 25! (now 62) I have so much energy, and I'm hyper chatty and switched-on. Loving life without the pain and exhaustion. (I think I have had inflammatory problems for at least 10 years, starting with tendonitis in one joint at a time - elbows, knees, ankles, shoulders, hips then eventually in June, PMR. I can't take NSAIDS as I'm on blood thinners). I am slightly worried from your reply though. Why cut out carbs? I am partial to a choccie bikkie in the evening and would find it hard to stop! Also what's in store for me? Will this good feeling last, or will I start to get side effects? I'm enjoying life so much at the moment!

[PMRpro Ambassador in reply to Broseley]

Don't get carried away - the euphoria is the pred and it is a false friend!!!

Do go and read the FAQs where you will find a whole range of relevant posts and information.

[Slowday in reply to Broseley]

Broseley make hay while the sun shines. I was put on 60mg over two years ago for GCA. I won a gold medal at the Olympics, scored the winning try for the Lions against the All Blacks, scored the winning goal for Liverpool in the Champions League Final and swam the English Channel every lunch time to get a nice French bread sandwich. I am now down to 0.5mg per day and I haven't the energy to walk round the corner to buy a bloody sandwich. I could however win another Olympic medal if they introduced sleeping as a sport. For me it has been a long cruel journey.

[Nextoneplease in reply to Slowday]

Hi Slowday, I’m sorry to read your very eloquent and moving post. I started at 15mg, then up to 40mg for suspected GCA and am now down to 12.5. Like you I felt much more energetic on a higher dose. I’m not actually in any real pain now, so long as I take it easy. But there’s the rub…..I don’t want to take it easy!! Don’t feel like myself at all….

So I can only conclude that we should make the most of whatever benefit we have each day, be that less pain or more energy…..🤷‍♀️

Wishing you all the best.

Nextoneplease x

PS You’ll never walk alone….. 🧣😊

[cycli in reply to Nextoneplease]

I know exactly how you feel Nextoneplease and I am so sorry.

[Nextoneplease in reply to cycli]

Maybe tomorrow will be a better day - hope so 🤞

And thank you x

[cycli in reply to Nextoneplease]

so much in the head and then it won't stop. The part that drives me is broken and needs repair but the mechanic is on holiday and won't tell me when he's back.

[Nextoneplease in reply to cycli]

He’d better get back soon! Or you’ll need a new engine…..take care

[cycli in reply to Nextoneplease]

I am redesigning the engine to run on near empty for a while resting. When the mechanic finishes his holiday we are going to take out the old broken one and install the new one on new hybrid fuel. We are looking into ways to run it without depleting the total tank of fuel keeping the engine running at more than idle and engaging the gears gradually. If I can keep it moving in forward gear and stop it going into reverse I might get it into 3rd gear. Doubt 4th will be possible now and certainly overdrive can't be engaged. I'm trying to enjoy the designing and planning stage as it takes my mind of the broken engine let alone the chassis.

[Nextoneplease in reply to cycli]

I love this cycli 😂

Enjoy the design and planning, keep ticking over while resting and give that mechanic a nudge when you can. I look forward to hearing when (when) you’ve got the engine in gear 😊x

[cycli in reply to Nextoneplease]

Will do, but he's out of contact at present just taking messages. I'll have to wait till he's back in range and replying. Meantime I have to recharge and try again tomorrow.

[Nextoneplease in reply to cycli]

Me too 😊

[Slowday in reply to Nextoneplease]

Believe me you'll have no option but to take it easy if you are ever to wean yourself off those horrible wee white devils

[Nextoneplease in reply to Slowday]

Thank you Slowday 😊

I’m kind of coming to that conclusion! But what’s the point of life if you can’t do anything? I hate taking it easy and I have to say it’s really getting me down 😟

[cycli in reply to Slowday]

thanks for that Slowday. I needed a laugh and that has me chuckling still. It is such a cruel disease. I'm a bit conflicted and low today as you've probably read elsewhere. We all have those days. Congratulations on reducing I think. What's the prognosis re. remission?

[Broseley in reply to cycli]

Yes, I'd be interested to know about remission. Surely the dose is too low if you're feeling so exhausted? Excuse my ignorance.

[cycli in reply to Broseley]

The exhaustion is the adrenals restarting I think and that is a slow and uncertain journey Broseley. That's the other end of this roller coaster of an uncertain life you now have to adjust to. When you have read enough to make you kaugh and cry come back and share. If you are not conflicted or confused it will both please and surprise me.

[PMRpro Ambassador in reply to cycli]

Not adrenals at the dose you are still on . That isn't a factor until10mg or so. The fatigue is part of the autoimmune disorder - common to almost all a/i disease.

[cycli in reply to PMRpro]

Slowday is down to 4mg and reducing at 0.5 steps PMR pro...thought adrenals might be kicking in there that'swhy the fatigue I thought . Not Broseley whose just started on the euphoric journey

[cycli in reply to cycli]

If that reply is to my fatigue then yes I understand. My legs are dragging me down wherever and whatever I try at the moment. Just trying to find a way through to a better function.

[PMRpro Ambassador in reply to cycli]

The confusion of the way HU nests replies!!!!!! No logic to the order at all

[cycli in reply to PMRpro]

it is ok. it's fun unpicking them.

[Broseley in reply to PMRpro]

So am I correct? That the pred keeps the exhaustion away? Or does it come back anyway?

[cycli in reply to Broseley]

the more you do things while euphoric and depending on the level of energy expended the likelihood is you will reap some payback Broseley. Just enjoy feeling pain free and don't get to feeling everything is back to normal or better. We've all had that feeling and it is wonderful. It's the pred. masking the pain as PMRpro said. It is just trying to reduce the inflammation by pumping cortisol into your system, more than your adrenals usually produce.

[Broseley in reply to cycli]

What do you mean "reaping payback" exactly? Do you mean I will benefit from it? My physio has given me some much harder exercises to do.

[cycli in reply to Broseley]

sorry , but if you do too much and that depends on each individuals ability to exercise, you will use the store of energy you have and you risk what is termed a flare which is a resurgence of the inflammation. This may then require an increase in prednisone to compensate. Without that the pain from the inflammation can reduce you to crawling through the next few days. Sorry, but it is just one of the delights of this disease we all face each day. Some days are very good and some not so. I produced an exercise regime for base exercises to build up from the lowest base. No idea what your doctor has advised or you are able to do.

[Broseley in reply to cycli]

Thanks for clarifying. One has to have hope though! I'm not overdoing it, but the physio seems to think that I'm cured. I told him how people get symptoms again when they taper, and he said that shouldn't happen if it's done properly. I've not had any advice from GP. She's put me in the hands of rheumatology but I have to wait a month.

[cycli in reply to Broseley]

These delays , misinformation and lack of explanation are common and disturbing. We all have had them. With GCA it is DANGEROUS. Read up on here Broseley and come back with questions. There is no cure only remission. We all have this now and have to MANAGE it not CURE it. you cannot expect nor should you, to revert to what you did before. I want to as does everyone with this disease. You simply CAN'T. Take each day as it comes, work out what you NEED to do and then plan around how to do it without overstressing yourself. If you have energy over then decide what you want or would like to do. Maybe push a bit harder and experiment to see how much you can take without or with a reaction. The attempt is worth the knowledge. It will help you move forward with a measure of confidence and control as much as this disease will allow us.

[PMRpro Ambassador in reply to Broseley]

Repetitive and difficult physio exercises are poison in PMR - and NO, your physio obviously doesn't know ANYTHING about PMR. It is a chronic condition - ask them if they tell their RA patients they are cured? They ARE correct that you won't relapse if you taper properly - but I don't think they realise you aren't tapering to zero, you may well need a low to moderate dose for years, and that there are a lot of doctors who think PMR/GCA has a finite duration so they can force their patients to reduce to zero according to a timetable and it will be fine, It won't.

[PMRpro Ambassador in reply to Broseley]

No- not exactly. The fatigue is there for most people most of the time, pacing is the only really way to manage that. However, at higher doses pred can cause euphoria in some patients who, when given oral corticosteroids develop a sense of wellbeing that is 'inappropriate' to improvements in physical health. Some doctors think this happens to everyone - it doesn't - but when it does happen, then patients often set out to do all the things they couldn't do before diagnosis and pred. The pred has cured nothing - the actual, almost flu-like attack on the body is still there, you just don't feel the effect and so your body doesn't tell you that you are asking too much of it until it is too late. Some people get as far as collapse - some just develop all the same sort of muscle pain and think the pred isn't working , even doctors may think the same and increase the dose of pred even further or, maybe worse, decide it isn't PMR/GCA at all and stop the pred. It is actually DOMS (delayed onset muscle soreness) of the sort you get after any over-exercise. It will take much longer to resolve than you are used to after exercise when healthy - sometimes weeks or even months and if you try to do things with the sore muscles in the meantime it just makes it last longer.

Management of PMR/GCA is a combination of things, pred to manage the inflammation to relieve symptoms, lifestyle adaptations and pacing - doing things in small bites until you can work out your limitations. They may be quite generous before you suffer payback - but to assess that you need one day of moderate activity followed by a rest day until you find your limit. You must learn your limits and you must stick to them or you will more than likely struggle your way through your illness and feel permanently stressed and miserable. When you accept this is a different life to before and seek ways to accommodate it, you will often get back to close to the before state. You will at least be happier.

[Broseley in reply to PMRpro]

Thanks, I have had to pace myself for several years due to all my tendonitis problems so I'm used to it. I was never a very fit person anyway, so hopefully I'll be ok. Thanks for the helpful advice.

[Slowday in reply to cycli]

Problem with me is that a year after the GCA I had a stroke or now they think it might be FND (Functional Neurological Disorder). There is a high chance of a stroke after GCA so I'd get on blood thinners or talk to your GP at least. So I'm fight two battles with the exhaustion and the need to exercise the paralyzed side of my body. Hopefully I'll be off the Preds in a month's time and all the accompanying meds that go with it so I might start to see the wood for the trees. The good thing is I can still drink pints of Guinness with my left hand!!

[cycli in reply to Slowday]

Thanks for the heads up Slowday. Had full blown PE in October before being diagnosed in June this year so had been suffering from both PMR and GCA long before and probably impossible to ascribe anything to anything.,so on blood thinners from that time and doubt I'll be off them now. As your profile says it's a shock to find ourselves where we are now given what we expected to be doing. Totally get it. Raising a glassof tipple to you now.

[cycli]

Hi Broseley. Are you sitting down because I think you had better. Please have a read through the FAQ section and I think you will find very many comprehensive answers to your euphoria. I have both and yes you do feel on top of the world. Also on blood thinners. Enjoy, but don't overdo it because you now feel good. It will bite you back. There's lots of good advice about how to manage from here. Have a good read and then come back a I can guarantee you will. Welcome as we all say to the club no one wanted to join.

[cycli]

Hi Flosys, I hope all this banter on your thread is of some informative interest and helping you understand what to expect as your post seemed to require.

[Elbowpiece in reply to cycli]

Can we send the posts above to every rheumy and gp with apologies to the enlightened ones. If l had to join a club l didn't want to join it would have to be this one. So much support and helpful information

[cycli in reply to Elbowpiece]

Hi Elbowpiece..I would like our charityPMRGCA to make representation to their professional body with a reasoned and properly supported argument detailing the various concerns we all share. I have written personally to mine and also prepared an analysis of the improperly followed pathway for referral at our local hospital. There is a clear lack of accountability for what appears to be negligence at best and needs addressing. I cannot understand how they have so lost track of their purpose. Oh and can you fill in your profile, as it would help .