Forgot my prednisone for 6-7 hours and ended up with a whacko body for 5 days.

[grannma]

I was under stress when I forgot to take my prednisone and then when I remembered, I started having original symptoms, but not as major. Scared me; I called the doctor who said to take it now instead of waiting till next dosage. I then talked to rheumy. He was lowering my PD by 5 (40-35) but decided against it for two weeks to see blood work. My SD had gone up from 5-16 after lowering my PD from 50-40. I am just new at this (3 months) so I have not idea what to expect. So many questions, so many things happening; just reading all your information and praying!

[lucky12]

Morning grannma try not to worry you are on the right site lots of people to help you.It takes a while to settle your meds then VERY SLOWLY REDUCE. I know PMR volanteers will help you. Kate Gilberts book Polymyalgia Rheumatica and Giant Cell Arteritis: A SURVIVAL GUIDE is brilliant I keep mine by my bed and can look things up when I am concered. I am going away soon but will not go without my book.

Wishing you good luck and things will settle down Kathy

[grannma in reply to lucky12]

lucky 12 WOW a book! This is the first of I have heard of a book! I will definitely buy it. Isn't is amazing that a disorder, that has very few studies, can be so alive and disabling to some? I was told 1-2 years and am now hearing some have 9 years. I just continue to walk, read, and pray! Have a beautiful Sunday!

[5lupins]

Good morning , I hope today will be a bit better for you. I feel sure everyone will have felt like you do many times. The meds are difficult and it was and is a mental and physical struggle for me. Having only recently found this site I feel more confident with every aspect of the GCA. Take care .

[grannma in reply to 5lupins]

Thank you! I am better! Stress seems to be a really big factor for symptoms recurring or tiredness. Anyone else experience stress reactors?

[Annodomini]

One thing is certain - you won't repeat the mistake, not that this is much comfort to you now. I keep my pred at my bedside with a banana or cereal bar, so that I can take it as soon as I wake in the morning. I also have them in a box with individual day-marked compartments just so that I can be sure I didn't dream I'd taken it! I wish you good progress and better health.

[jinasc]

grannma

A Dossett box is a blessing and they are not expensive. They come in weekly and monthly sizes and have separate compartments for different times of the day.

One thing, are you taking Calcium (ie Calciches) if so, the rule is Pred for breakfast and calcium for lunch. Never at the same time.

You might like to take a look at this website, pmr-gca-northeast.org.uk.

There is a DVD available on that site.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hi sambucca,

I know you shouldn't take Alendronic Acid (bisphosphonates) and calcium (Adcal D3 - calcium & Vit D) together, but I've never been advised not to take calcium and Prednisolone together. Where does this advice come from and what is the thinking behind it? DorsetLady

[PMRpro Ambassador in reply to DorsetLady]

It has been known for a long time that pred and calcium containing food taken together can reduce the amount of calcium absorbed so it is better to take the calcium at least 3 hours post pred so the peak blood level of pred has passed - most old-fashioned pharmacists know and tell people if they think about it. Younger generations have probably forgotten/don't think it is important.

[daveD]

Morning Grannma. like you I am new to this strange illness, I had no knowlege about it my Dr just did not seem to be much better informed.I then found this& other Forums Bingo. i sat back & took all posts & replys in.I now have a set routine.morning 5ish PRED with yogurt + fruit. I also mark dose taken every day in ledger along with any symtoms.I also keep important info in my fav bar ie the now famous pred plan,which up 2 now serving me well. Please excuse spelling as i have what i think PMRpro described as Fluey head.IT is raining hence resting.All the best 4 your journey. Dave

[grannma in reply to daveD]

dave D - morning! well, I am back on my schedule, but it took me a week of 'old symptoms' recurring to finally get back. I still have the itchy head and some pressure behind my eyes, but my energy is coming back. Hard lessons of life The doctor was going to try 35mg. but decided against it with my symptoms. What is the SED rate doctors are shooting for?

[daveD in reply to grannma]

Hello grannma, My esr was 49 after first blood test, PMR confirmed. put on 15mg pred for 6 weeks then bloods came back esr 5.I then tapered down to 12.5. I am now tapering down to 10mg useing PMRpro,s soft shoe shuffle down, will go for bloods when i get down to 10mg. So far it has served me well i am on 1day old 4 days new, just a few aches& muzzy head.the thing most annoying at the moment is if i try to sit& read my Eyes just close & ive gone asleep some thing i have to live with .I owe all my progress to the Girls on these Forums.if you have any probs there is always some one to listen.its been a super day 2 day have been pottering most of the day.All the best 4 your journey, try 2 keep records of your daily UPS & downs. All the Best.meant 2 say perhaps one of the Girls will give you more advice on the SED rate?? Dave

[estherdevers]

I was advised to take preds at night. Something to do with them acting better

[jinasc]

DorsetLady

The advice came from a Hospital Pharmacist.

Vitamin D & Calcium supplements should be taken with food or drink with at least a tiny amount of fat - e.g. milk in tea or coffee as Vitamin D needs a bit of fat to be absorbed.

Early am – Prednisolone with food

Lunch time - 1st Calcichew (with food)

As it is so long ago since I was told as far as I remember the explanation is to do with the pred stops the Vit D and Calcium from being absorbed or vice versa. . Check it out with your Pharmacist

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

sambucca,

Will check it out, thanks very much. Trouble is, some of the tablet information leaflets give you too much info, whilst others don't seem to give you enough! Of what you want, anyway! DorsetLady

[grannma in reply to jinasc]

Thank you! This is the schedle I have been following and worked until I forgot. Question: do symptoms come back (head ache, pressure on eyes, temple headaches) normally? Do they reside as the PD is dropped? I am on 40 mg now and dr. didn't dropped PD because some symptoms came back (not bad, just noticlble)? So many questions, so many defferent answers for different bodies. Thank you!

[jinasc]

Yes, I agree, they are only the most common ones.

But you can always ask on here or on pmrandgca.forumup.co.uk , where you can even find ones that are pretty common amongst sufferers but not recognised, ie 'steroid brain fog' or 'treacle brain' days, as some of us have named it. The 'dropping' things which you never did before. Life is not dull with PMR and/or GCA just different.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

sambucca,

Have checked with pharmacist, Pred does interfere with calcium absorption. What a pity my original GP didn't tell me that 2 years ago! Thank goodness for this site and all it's knowledgeable participants. You pick up so much information even when you haven't asked a question. Thnx. DorsetLady

[jinasc]

DorsetLady

Do not blame your GP, it is not his/her fault at all. They are General Practioners. Consultant's specialize as well. I have a brilliant GP and even he slipped up when prescribing an additional medicine for another problem when I was on pred. My Pharmacist spotted it straightaway (I use the same pharmacist even though it is a chain - they have all my records), don't use different pharmacists unless you cannot avoid it, stick with one.

One of the Golden Rules, is always check out NEW Prescriptions, Homeopathic remedies and before you buy OTC's (over the counter) medicines with the Pharmacists, particular when you are already taking medication previously prescribed for contra-indications. Nobody else in the medical profession knows more about drugs than Pharmacists and that includes, GPs, Consultants et al. Pharmacists training takes longer than GPs training and whereas GPs have six months in a Training Practice, Pharmacists have one year under the watchful eye of a working pharmacist before they are let loose and the NCP issue information very regularly.

We have a set of 'Tips and Tricks', which will be published in our Newsletter later this month or early July.

You will be able to read that Newsletter as after hard copies have been issued they are placed on the website.

[Marianthi]

I downloaded a great app on my mobile that reminds me and keep bip until I said that I have taken it. Sure is for people that don't forget their mobile in their bag. But it really helps Because my mind it's not always on my pills