Can someone give me some advise please have I got PR.

Hi all, thanks for your replies. Ears must have been burning yesterday at Maidstone Hospital as they rang me and said they had a cancellation appt they could offer me next Weds, so this time I will make sure I'm ready and armed with my list of questions for the rheumy and this time I'm not leaving until I get some realistic/positive answers.

Ironically, both my doctor and rheumy armed me with pmr info which they obviously got off the net, I wonder whether they'd actually read it themselves!

I'll report back after next week, only hope they haven't lost the last lot of blood results as they did the first lot!

Beautiful sunny day here in Maidstone.

Hi and thank you all for your kind replies.

I went to the Doctor's yesterday after the last test blood test eventually came back, and he said my ESP rate was high, he said I had PMR, the Doctor has started me on Prednisolone 4 times a day, I have had 4 tablets so far two Yesterday and two so far Today, and I have walked up the stairs, and I can actually walk up the stairs without double stepping them I was over the moon. but not there yet as I have only had 4 tablets, but feel a great improvement already.

The Doctor said he is going to manage me with this, I have an Appointment next Thursday he said he want's to see how I am, and he said I will have to have regularly blood Test's, he said I might have to stay on the tablets for a some while and reduce them gradually.

The Lady Doctor I saw last Week was not my Doctor as I went with an emergency Appointment, and perhaps I was lucky that she did say straight away she thought it was PMR, and arranged the blood test that got lost.

I know from reading the answers some of you have not had an easy time getting diagnosed, and feel for the Ladies who had to wait Months.

Thank you everyone who replied to me I am most grateful, because I was feeling really rotten with the pain, and having found this Site has helped me so much, and it was this Site Mrs O and Eileen that really got me to make an Appointment at the Doctor's, and I have to thank them so much, because at first I did wonder if I had strained some muscles.

Can I ask if some foods are better than other's to help with this please?, I am a Vegetarian.

Annie.

Hello Annie

Oh, isn't it so good to finally get diagnosed and treated and, most importantly, to have relief of all that pain from which you have been suffering.

You mention that you are to take Prednisolone four times a day. It is generally recommended that you take the whole day's dose with or immediately following breakfast. If you find you are unable to get to sleep that will be because the Prednisolone taken late in the day is causing insomnia.

A couple of questions:

1) Are you taking 4 x 5mg tablets or 4 x 2.5mg tablets?

2) Has the GP prescribed stomach protection tablets such as Omnaprozol or Lanaprozol? Very necessary for lining the stomach against the steroids. However, one little tip: I haven't been able to take such tablets so instead have taken a live yoghurt with breakfast every morning to line the stomach immediately before taking the tablets and this has worked well for the last 3+ years.

3) You are advised to carry a Steroid Card which is available from the GP or the Pharmacy.

Re your question as to whether some foods are better than others, certainly go for lots of fresh veggies, salads and fruit (not too many acidic fruits such as oranges, though strawberries and all berries are good), I eat lots of beetroot, oily fish such as sardines, mackerel and salmon and herbs such as garlic and turmeric, all being anti-inflammatory (not sure whether you will eat fish as a vegetarian though!)

Do hope this helps but come back with any queries and one of us will, I am sure, be able to reassure you.

Best of luck, Annie.

MrsO

Hello Annie

Oh, isn't it so good to finally get diagnosed and treated and, most importantly, to have relief of all that pain from which you have been suffering.

You mention that you are to take Prednisolone four times a day. It is generally recommended that you take the whole day's dose with or immediately following breakfast. If you find you are unable to get to sleep that will be because the Prednisolone taken late in the day is causing insomnia.

A couple of questions:

1) Are you taking 4 x 5mg tablets or 4 x 2.5mg tablets?

2) Has the GP prescribed stomach protection tablets such as Omnaprozol or Lanaprozol? Very necessary for lining the stomach against the steroids. However, one little tip: I haven't been able to take such tablets so instead have taken a live yoghurt with breakfast every morning to line the stomach immediately before taking the tablets and this has worked well for the last 3+ years.

3) You are advised to carry a Steroid Card which is available from the GP or the Pharmacy.

Re your question as to whether some foods are better than others, certainly go for lots of fresh veggies, salads and fruit (not too many acidic fruits such as oranges, though strawberries and all berries are good), I eat lots of beetroot, oily fish such as sardines, mackerel and salmon and herbs such as garlic and turmeric, all being anti-inflammatory (not sure whether you will eat fish as a vegetarian though!)

Do hope this helps but come back with any queries and one of us will, I am sure, be able to reassure you.

Best of luck, Annie.

MrsO

Hello again

Pleased to hear your Dr is looking after you but I do find your steroid doesage a bit odd I think if you do a poll on this forum you will find that at least 90% of us have been given either 15mg of steroids to start or as I was 20mg These were 4 X 5mg tablets and they were all taken with breakfast Prendisolone tends to disturb your sleep to start with and the earlier in the day you take them the better

One thing I would say to you that I have said to others keep a record of dates and blood test results of ESR and CRP and doesage of steroids and notes of how you feel as this is a long term thing and it helps to look back I didnt keep complete notes the first time I had it but I have with the 2nd bout

Make sure you have a copy of the reccommended guidelines and reduction prog and then if your Dr doesent come up with something similar query it Some people on here have been given very rapid reduction progs which has given them all sorts of problems

As for diet the opnly things I have read about diet and steroids is to avoid too many carbohydrates and eat more protein to avoid weight gain and there are some anti inflamatory foods you can look up and I know someone puts Turmeric ( an anti inflamatory ) on all their food ( You can take a supplement for this ) Perhaps one of our vegetarians can give you more advice as I know one of the thing reccomended is oily fish but that wont help you

Hope you continue to improve and best wishes Mrs G

H there - pleased to hear that steroids already seem to have helped! Going up stairs \"properly\" is great isn't it, after double stepping for so long. I wished I lived in a bungalow at the height of my pains a few weeks ago.

I agree that your dose of 4 times a day is strange - my sleep pattern is badly interrupted, even at 2.5mg, so I think that taking them early as possible is good.

Mrs O's suggestion of yoghurt is excellent - the other thing I find good is porridge with semi skimmed milk. It seems to line the stomach. I was not started on gastro-resistant pills when I was on 15mg, and suffered severe indigestion, until I was changed over, and now the yoghurt or porridge help. I have been almost 2 years with steroid and still suffer indigestion and heartburn if I am not careful with my food - so you might need to be aware acidic or spicy things may cause a problem. I got such bad heartburn one day I thought it was a heart attack!

I also agree about the point of making notes about your dose, pain, stress etc. I came down too quicklyafter I got to 2.5mg, thinking it was so low a dose, it would hardly make difference coming off, and suffered a bad relapse, After 5-6 weeks the pain was getting bad, by 7 weeks I could barely walk on standing, and had to \"get going\", climbing the stairs was a nightmare. My consultant thinks it better to come down and off, sooner rather than later, but not if you end up going backwards and relapsing. I wonder what he is going to say when he hears what I have done. I made a bad decision, and now as I am back on the pills, will certainly be keeping a firmer eye on what is happening and will not rush to get off. I happen to be one of those who doesn't have any raised bloods, but have just had a test - the first in at least 18 months!

I have come to the conclusion I would have no life at all if it were not for steroid and am just relieved that this low dose has worked for me, after being off two months.

I hope that you will settle properly into a regime with your pills, and take my advice, don't be in a rush to get off.

all the best

mariannie

Mariannie here - sorry but I think I forgot to log on for the previous post on this thread - I came up as a guest!

Is anyone finding this daytime sunshine being helpful?? I find the cold and damp aggravate the pains in my knees. forecast is good so we may all have a sympton free weekend! Aha! don't we all wish!

Hi Mariannie

Yes, I find the hot shower and my hot water bottle very comforting when in pain so I'm sure the pain relief will last longer the more warm sunshine we can get on our bodies, not to mention the added Vitamin D benefit for our steroid-racked bones. Apparently when warm enough we should expose at least our arms and face to the sun (without sunscreen) for about 15 minutes each day to benefit from the Vit.D. (I daren't expose much more these days!!!)

As for a \"symptom-free weekend\", if I could I would wave a magic wand for all of us :wizard:!

Hi Mrs O and all.

I looked on the box and it said four each day with food, and The Doctor said take one tonight with your Meal, So I assumed it was four times a day with food, I will check Tomorrow I am positive the Doctor said take them four times a Day.

I looked on the box and it said 5 mg tablets, I have taken five now, but have got some pain in the thigh to knee area tonight, my upper arms feel better though, when I sit down I can raise up without to much pain in the upper arms, but the leg area thigh to knee's I feel stiff tonight and hot in that area and in a bit of pain, I am walking better though.

Thank you for the diet tips, I will get some live yogurt and eat it before taking the tablets.

I will let you know what the Doctor said about the dosage, maybe I got it wrong.

Thanks for your kind replies

Annie

Hi Mrs O

I forgot to say about the steroid card, no I had nothing said to me about a card, and nothing about stomach Medicine, I will ask though thank's for saying about them.

Annie

Hi Annie

So you've been prescribed a total of 20mg a day.

Perhaps the GP told you to take one on that first evening to try and give you some immediate pain relief. However, you do need to take the 4 tablets in one go with your breakfast. We are recommended to take them first thing in the morning as that is when our adrenal glands make their natural supply of steroids (cortisol).

It is possible that the GP wanted to see that you had a good response to the steroids thereby confirming his diagnosis of PMR before prescribing the stomach protection tablets. However, take that live yoghurt in the meantime to protect you.

I forgot to mention in my earlier post that he should also prescribe bone protection medication, but here again perhaps he was waiting until your appointment next week.

With regard to your continuing pain in your legs, it may take a few days for the Prednisolone to kick in properly to the point where you have about a 70/80% improvement. It is very rare to get 100% relief even on steroids - they are not a cure but simply allow us to have a reasonable quality of life until the PMR burns itself out, hopefully within 18 months to 2 years, but sometimes it takes longer.

Let us know how you get on tomorrow.

MrsO

Hi Annie,

Just a quickie. Just been checking in the leaflet that comes with all medications and for Prednisolone it says [b:f90c6d720a]'Swallow the tablets whole, with a little water as a single dose in the morning after breakfast'[/b:f90c6d720a] and this has certainly always been my understanding. When I was nursing my Mum she often had short doses of steroid and it was always a single dose no matter how many she had to take each day. Just worth checking again with your Doctor. Also worth checking that you've been given enteric-coated Prednisolone (it'll say 'enteric' on the front of the box) because you really need the stomach protection they offer. Good luck with the Doctor and hope you continue to feel better and better. Isn't it great to be able to get upstairs without resorting to the 'front crawl' method!!! Take care.

Lizzie Ellen

Hi and Thanks for your replies

I did check this Morning and yes I got it wrong oh dear, I assumed it was four times a day, I have to take then together four at once, I did this Morning with my Breakfast, thanks Mrs O I would not have known otherwise, I am on a learning curve as it is all new to me at the moment, I felt so rotten the day I had my Appointment with the Doctor he was talking away, and I must have misunderstood when he said about take one that Night, I assumed it was with food four times a Day

Lizzie The box the tablet's comes in is a sort of greeny colour with almus on the side and say's also contains lactose nothing with the word enteric on the front of the box.

I am going to get some live Yogurt as recommend Hubby is picking me some up tonight on the way home from Work I take yakult everyday first before anything, I have done for a couple of Year's, does that help?.

I do feel better I can move my arms so much better today, I still feel hot there though and my upper legs under my bottom and groin area still feel stiff and hot there but I can live with that,I actually put my pants and bra and comfy fluffy socks on this Morning without taking ages to do it, and without all that pain of doing it, and I could actually bend to do it too, I was very happy with that.

This is all new to me, and thank you all for all your help to everyone that took time to reply to me, I know it sounds strange but I felt some comfort for all your help, I was feeling rotten with the pain, but its a start to know what was causing the pain and being diagnosed, and to just do what I can and be positive about it all.

Yes Lizzie it is good to able to walk up the stairs without double stepping, to get out of a chair or bed without crying out in pain,I have always been so active, so now perhaps I will not take that all for granted

Thanks Mrs O and Lizzie and everyone once again for your kind replies

I am so grateful for this Site.

Annie

Hi again Annie

Yes, I believe Yakult will do much the same job as \"live\" yoghurt as they are both probiotics which bosts the good bacteria in the gut. However, yakult has added sugar so I prefer to take the live yoghurt in the hope of keeping my sugar intake to a minimum to avoid the risk of diabetes which can be a side effect of Prednisolone. Live unflavoured yoghurt on its own is not to everyone's taste but I mix it with my muesli, fresh fruit and Manuka honey (great for the immune system) and that's a very satisfying breakfast. My friend adds the live yoghurt to her porridge.

I know that Lizzie-Ellen posed the question of whether your tablets were enteric coated, but as I'm writing I'm sure she won't mind me jumping in! :lol: . My 5mg tablets are red and marked enteric coated. You must ask you GP to change the prescription so that you are having the coated tablets which will help to protect your stomach.

I expect you're feeling totally exhausted with all this now, Annie, but you are on a steep learning curve so remember that no question is too silly to ask - we've all been there and at the start of our PMR journey we were all so comforted to find someone here on this wonderful forum to reassure us.

If you should suddenly feel full of energy and free of pain, just don't overdo things as the inflammation is still in the body and the steroids are masking it.

Lots of good luck wishes Annie.

MrsO

I feel like celebrating! I had never heard of enteric coated Pred. and it has never been offered. Hving taken Pred during my two bouts of PMR for more than five years in all amd with never a bad gut reaction I have at last found something that to which I DON'T react. Amazing. But I'l certainly store the in formation for future ref.

Good luck Annie. Betty