First dose taken

[Poppylop]

Firstly can I say Thank you so much for everyone's comments and support, it really means a lot to be able to speak to people that know what I'm going through. I still feel a bit emotional this morning, I feel like I could cry at any minute, hopefully that won't last long. I took my 8 tablets last night and felt a little bit weird after taking them, my legs felt a little bit wobbly and I felt a bit sick, I took them with food, but I'm notoriously bad at taking new medication, I always feel a bit off with them. I went to bed really early for me at 9 and had about 9 hours sleep which is totally unheard of for me i normally have 5 or 6, I woke up a few times with really bad sweats, is this normal?, When I got up this morning i got out of bed without my usual moaning and groaning, I also managed to sit on the toilet, get in and out of the bath and dress myself a lot easier, I still have a headache though, can you take painkillers with steroids?, Thanks again for your replies x

[Hidden]

Hi poppylop, sleep will do you good. Did your Dr recommend you took pred at night? It's normal to get night sweats. For most of us it's a combination of PMR/GCA and pred. You can take paracetamol, but I hope and suspect that as the pred starts to clear the inflammation your headache should resolve a bit. Just rest if you can despite the sleep!

[Poppylop in reply to Hidden]

Hi poopadoop , the doctor suggested i take them as soon as possible after eating, so I said I would take them after my tea and she said that's fine, when do you take yours

[Hidden in reply to Poppylop]

It's usually first thing on a morning but Dr right to tell you to take asap with GCA. And as long as you sleep.... Are the pred uncoated (white) or coated (coloured)? The white ones work within a couple of hours because they disperse in the tummy - hence with food. The coated pass through the tummy and disperse in 4 to 6 hours (that's why jinasc suggest 2am as the inflammation starts 4am-ish). This is because pred can cause stomach issues. If you have uncoated you might ask for coated in the next prescription. It saves taking an antacid/ppi. If it starts to impact on your sleep a lot then the time you take it can be adjusted but come back to us and keep us updated. 🌻

[Poppylop in reply to Hidden]

I have the white ones, I will have to keep an eye on that because I already have ibs and ulcerative colitis, the doctor has given me a prescription for 4 weeks, which is over 300 tablets

[Hidden in reply to Poppylop]

Have them with food for definite. But pred might help UC.!

[Thelmarina in reply to Poppylop]

Others will have said this - but just in case - taking the Pred alongside some natural or Greek style yoghurt can help the tum

[Poppylop in reply to Thelmarina]

Hi, thank you, I bought some today, don't really like it but I will make myself eat it

[Thelmarina in reply to Poppylop]

I pop in some blueberries to make it more palatable 😄

[PMRpro Ambassador in reply to Poppylop]

Try Greek yoghurt - it is not as sour and more like cream than yoghurt. The earlier in the day you take the pred they less it may affet your sleep.

[Choco-Holic in reply to Poppylop]

I used to take mine at teatime and was ok, but rheumatologist suggested taking them after breakfast to help with insomnia which I had really bad. Nightsweats were with me pre diagnosis but some people get them with prednisolone. They have got a bit better as dosage is reducing (I now have head sweats during the day - great for frizzing your hair NOT haha)

[dillydally1 in reply to Choco-Holic]

frizzes my hair too x

[jinasc]

Poppylop

Pred (8 tablets of 5mg is 40mg) should be taken in the morning. The reason is two fold, one the normal time for your adrenals glands to work is sometime around 2am and they make enough cortisol for the next 24 hours, unless you get into a fight or flight situation and then they quickly provide more. Replacing the normal function means that you no longer have the 'fight & flight' so do your best to avoid stress. In fact, treat yourself like a Precious Princess for a while.

Taking them as early as possible, anytime after 2am is ideal..........but you do not have to put an alarm on...............just if you wake up any time after 2am, say for the loo, a cuppa tea and slice of bread or a yoghurt and take you pred tablets, never on an empty stomach.

They are enteric coated, this allows the time for them to get working. Go back to sleep - when you actually get up a warm shower will help - don't bother with the soap. Do not take calcium tablets with them ever. They can cancel each other out, so Pred for breakfast, Calcium for lunch.

The 40mg will eventually control the inflammation and hopefully the symptoms will subside. Remember the pred you are taking will protect your eyesight.

Now I am not going to say it is a doddle, it is not...........................but relax a bit, your eyesight is protected, listen to your body, expect highs and lows, it will all settle down a bit, but slowly.

Have a good howl when you want to...................does you the world of good. I did many times in the first few weeks, till I got my head around it all.

BTW, were you prescribed AA?

You will come to terms with it all and everyone on here is behind you and will pick you up whenever you need it.

[Poppylop in reply to jinasc]

Hi jinasc i was prescribed AA, she told me to take it once a week sitting upright for half hour

[jinasc in reply to Poppylop]

You probably don't need it and you should ask her for a Dexa Scan in about 3 or 4 months time.

This will then have given the pred time to work and it will show you your bone strength. The medics they tend to give you it as a 'just in case' and it is something you do not need to take if your bones are OK.

If they are not OK, then that is a different story and you then go to the Royal Society for Osteoporosis website and look at the different types on offer and make your own mind up............knowledge is power.

If it is possible, could you take some sick leave for a couple of weeks? The GP could give you a sick note, if that is what they still call them...............this would then give you time to get used to pred and your new situation. Stress is to be avoided, if at all possible and this is a stressful time for you until you get a handle on it all.

Poppylop, I just noticed you still had a headache............that should go completely within two or three days, if it does not..................you need to speak to your medics, I am presuming a Rheumatologist. You may need a higher dose to get the inflammation under control with GCA.

[Poppylop in reply to jinasc]

Unfortunately we are so short staffed at work as someone has left that I couldn't be off, though I have got a few days off to go to Bournemouth in a couple of weeks, I'm a florist and we only have three people working there at the moment so sick leave would be a bit of a problem

[Hidden in reply to Poppylop]

Just make sure you get some rest. You don't want to wear yourself out to the extent you have to be off work for months and not just weeks (got that t shirt). It helps if you enjoy the environment, perhaps try for later mornings (to allow the pred to fully kick in) or leave early some days (if you find it wears off in the afternoon).

[PMRpro Ambassador in reply to Poppylop]

No employer will erect a plaque saying you gave your all for them. You have a serious systemic illness and if you need to have time off - you need to have sick leave. No ifs or buts ...

[SnazzyD]

All sounds normal to me. I took mine in the evening because the initial

Pred effect with each dose was to make me really wobbly and woozy. I’d then go to sleep easily but wake very early when the stimulant effect kicked in. You must have a lined stomach with Pred, so a decent meal is good. You’ll get used to the rhythm and flow of taking Pred and adapt to it; I napped a lot. The emotional stuff is normal too and gets better as the dose reduces.

[Marilyn1959]

Your response to pred seems to confirm diagnosis of PMR. Pleased it is making a positive difference already. Paracetemol is fine as a painkiller alongside pred.

[CSMM]

Hi Poppylop , you will feel like a new women a week today honestly it’s like day night from how your feeling now I was like a spring lamb first week 15mg in morning then 20mg after that as Doc said I wasn’t free from pain i didn’t know what to expect but 20mg I was made up felt better than I had in 10mths. Sweats is something I had undiagnosed and then with Pred and reducing to fast . I take Paracetamol for pain I remember the sleep I had with first week on Pred unfortunately it’s a memory now as sleep isn’t something you do very well on this journey. Hope your feeling much better by weekend. Your same age as me which is something else we have in common 👍

[DorsetLady PMRGCAuk volunteer]

Hi,

You are bound to feel a bit weird on new tablets - and 40mg is quite a hefty dose.

Morning is usual time to take them; if you take them before bed they are likely to disrupt sleep - I know they didn’t last night, but they may well do in future.

Any particular reason why you took them at nighttime?

Your headaches may take a few days to resolve, but you can take paracetamol with Pred if necessary. However if they are GCA/PMR related paracetamol won’t help anyway.

Sweats, and tearfulness are pretty much par for the course unfortunately. Some get them worse than others, but if the sweating continues there are plenty of posts on here about that just type in sweating, night sweats or similar in the search box.

[Poppylop in reply to DorsetLady]

Hi Dorsetlady the doctor told me to take them as soon as possible so I asked if I should take them after my tea and she said yes, Im a bit worried about taking them in the morning because of the weird wobbly feeling as I am usually at work, luckily it's my day off today, I still feel a little wobbly and have noticed I have a very red face, is that normal?

[jinasc in reply to Poppylop]

I think the' weird wobbly' feeling will go once you take them at the right time for you.

I had feelings that were 'highs and lows' and they do settle down.

GCA is much more worrying than PMR. I did not have PMR I had GCA only, I am in remission 8th year............it ook me 6 months with the help of another lady who had both PMR & GCA to get my head around it all. This site was not around in those days.

[Poppylop in reply to jinasc]

Hi jinasc, what dose did they put you on at the start for GCA as reading on here mine seems to be very high at 40mg, I'm struggling with it still, I havn't got the runs now but feel sick and still have the indigestion pain , I'm struggling to eat as I'm trying to cut out carbs and sugar to avoid weight gain which is almost impossible for me because that pretty much makes up most of my diet, I looked at the low carb tips on here but most of it I don't eat, my husband has always said I'm a fussy eater, yesterday I hardly ate because I'm trying to eat stuff in not keen on while feeling sick, it's really making me miserable, I should be happy that I have no muscle pain but Im not,I just feel misserable, Also how long do you think I'm likely to be on the high dose for x

[jinasc in reply to Poppylop]

60mg and I was there for quite some time. I was retired so it was easier(❓) to cope. It was essential, it saved my sight.

Dorset Lady, Snazzydee and Poppylop are giving you good advice.

The one thing I would say is about omaprazole - on the side effects it can and does cause aches and pains........one consultant we know.............will not prescribe it at all. He uses the oldest one, Ranitidine, but I know nothing about IBS etc and it might not be suitable............

Please don't try to do too much, let the dust settle, then we can help you with the other things that might arise. ie weight gain etc.

Rely on your Pharmacist and every time you are prescribed a new drug, for any reason whatsoever, check with them for contra-indications. They train for 7 years, and know more about drugs than anyone else. Mine saved me twice from and the prescription was changed when a call was made to the GP. Do not think I would ever blame the GP. They are not Pharmacists.

You will get through this, it just takes time and when you are at the beginning it is hard.

[DorsetLady PMRGCAuk volunteer in reply to Poppylop]

I think the weird feeling will go once your body is acclimatised to the drugs - as I said 40mg is a high dose - so some adverse reaction is bound to happen.

Think red face is fairly common- can’t recall I had it though!

[Poppylop in reply to DorsetLady]

I've also had a bad upset tummy today, I suffer with ibs and ulcerative colitis, I'm assuming I can still take imodium

[DorsetLady PMRGCAuk volunteer in reply to Poppylop]

There’s nothing to say there is a reaction between the two drugs - but best to check with pharmacist in case you need to aware of timings.

[jaycee444 in reply to Poppylop]

Poppylop I have Ulcerative Colitis as well as PMR. Not sure if you are on a maintenance dose for your UC. I am on Pentasa Granules which are PH dependent so I need to make sure I dont alter the PH in my stomach. This means I cant take a PPI to protect my stomach so I take my Prednisolone in the morning with a big bowl of thick greek yoghurt as was recommended on this website. I also take Calcium Citrate rather than Calcium Carbonate as you will need some extra Calcium. Taking medication for UC complicates things somewhat for me but at least the Prednisolone has helped the UC as well.

[Poppylop in reply to jaycee444]

Hi jaycee444, I take slow release Pentasa 500mg, and also omaprazole, I've been on the Pentasa for donkeys years and the omaprazole on and off for years, they control everything quite well but my ibs plays me up a bit and I think it's playing me up now with the steroids, I feel quite sick and have had an upset tummy, also got an indigestion type pain in the middle of my breast bone at the bottom of my ribs, hope this will go as I get used to the tablets, I've got a follow up appointment at the doctors tomorrow to see how I'm getting on so will mention it if I'm no better x

[SnazzyD in reply to Poppylop]

Pentasa is a Salicylate based drug isn’t it? It may well be incompatible for the stomach given that aspirin and Non-steroidal anti inflammatory drugs are not advised, so do speak to the doc. For some Omeprazole isn’t ideal either and can cause a converse affect so it might be worth suggesting something like Ranitidine as a trial.

[jaycee444 in reply to SnazzyD]

Its whats calles a 5ASA and both Poppylop and myself are on slow release which means it doesnt activate till it gets into the small intestine where the PH is more alkaline. I was told not to take antacids or use a PPI as would interfere with the slow release and would not do its job properly. Renatadine still interferes with the acidity in the stomach so I avoid that too. I try to manage mine without changing the PH in my stomach by taking my Pred with yoghurt and using calcium citrate rather than carbonate which in itself is used in antacids. Having to juggle medications with two different complaints is a pain but a neccessary evil .

[SnazzyD in reply to Poppylop]

On high doses I had the runs every morning but it got better as the day went on and reduced with dose. Others have noted the same so it might be a response to Pred rather than the U.C worsening if you see what I mean. Keep an eye on it for now.

[Hidden in reply to Poppylop]

I have spend a life time as a sallow person so was surprised how red my cheeks were. It usually results in people telling you how well you look when you feel horrid!

[PMRCanada]

The night sweats are common, mine I suspected were either due to pred/PMR or menopause. Recently started estrogen (not the oral kind), and it relieved some other symptoms, but not the night sweats that continue. I have a fan running all night and sleep with 100% cotton bedding, which helps.

I don’t have GCA, but others who have/had, have responded with some great feedback. Early days yet, eventually you will get more familiar and comfortable with your new medication which is key to reducing inflammation and symptoms. It may take a few days for your headache to subside. If it doesn’t, I would contact your doctor accordingly.

Try to stay calm (easier said than done), and rest between work times. I was retired (just 18 days), when PMR hit. I can’t imagine having to work through these conditions.

[HeronNS]

Keeping well hydrated may help the headache a bit. I know it's rough right now but it sounds like you're on the right path. If you do decide to take your pred in the morning, take it at your usual time the day before, don't wait it out over extra hours.

[sondya]

We've been there . . . scared, desperate to feel better . . . wondered if we ever would. And so glad for the advice and friendship on forums.

All the best - cheers from New Zealand.