New pmr awaiting esr and other blood test results

Hi and welcome!

You say you have all the symptoms - and a few others? What are the others? And what do you mean by "popping ears"?

I'm sorry - I'm all questions as the other lady who has posted for the first time today will be thinking! But the more we know about you and your PMR the more help we can offer you between us all.

One reason I ask is that sometimes ear problems can be associated with PMR because you don't have just simple PMR but also have a related illness called giant cell artertis. In its severest form it affects the temporal artery (the one along the forehead close to where the sides of glasses sit) and that can affect your sight but before it gets to that stage it can have an effect on your ears. I had uncomfortable ears - can't really explain what I mean - but they did feel blocked sometimes, especially at night. That all went away eventually after I was put onto prednisolone.

By the way - I'm saying this just in case: if you have the symptoms of PMR but your blood tests come back with normal levels for the ESR and CRP results, that doesn't mean you definitely don't have PMR. I have had it for several years and my blood tests for everything are absolutely normal. If you have the symptoms your doctor shouldn't rule it out. Lots of GPs seem unaware of the fact that about a sixth ofpatients with PMR don't have abnormal blood results.

Do let us know how you get on,

Eileen

Thank you,my popping ears are like when you fly. This is becoming quiet uncomfortable, plus I find myself getting louder to compensate. As for other symtoms they are change in vision like strobbing,dry eyes, tenderness down right side of face.However I dont have a tender scalp or pain in temporal area.Will see GP tomorrow for results and have a 4page list of questions and symtoms to discuss.I have read loads on PMR and hope the gp says its chronic wind!!!!!and not PMR with GCA.If it is just have to get on with it. Many thanks for info and support.

I also had the eye problems and they did improve a lot with pred although I still occasionally find them itchy and contact lenses are a problem now again - heaven knows why! I reacted very badly to a "new improved" version of the solution I used whilst suffering from undiagnoses PMR so it was nothing to do with pred and since then have really stuck to daily lenses and use them very intermittently.

The tender scalp and temple pain aren't actually as common as some doctors would have you believe. However, I note in a medical article I was reading the other day that sometimes the blood supply to the trigeminal nerve can lead to symptoms that are often confused with trigeminal neuralgia so that might be worth bearing in mind.

Have you found the national charity site and - more particularly - the northeast support site, pmr minus gca minus northeast dot org dot uk (if I put the site address as a link this post may disappear for a few days) where you will find a lot of medically approved info and the guidelines from the British Association of Rheumatologists for diagnosis and treatment which you can download and print off for your doc if he's interested plus stories from people who have been there, done that and got the t-shirt - not to mention the film ;-) as there is a DVD to explain to both the patient and their family and friends what is going on in your life.

Wouldn't we all like the doc to tell us it's chronic wind!!!! Chronic it certainly is! Best of luck tomorrow with your doc and then - in the event of it being decided it is PMR - see you around here or the other forum (devoted to PMR and GCA) when you have any questions or whinges or real "I want to scream" days

Eileen

welcome not sure anyone wants to belong to the pmr gca club but if it is diagnosed we will support you in the long road ahead ,its always easier finding out from others who have already walked this road so keep in touch i am sure help will be around carok

Hello,started pred tues afternoon on 15mg daily, oh boy on wed morning head moves, legs move, arms move got socks on!!!!!! just keeps getting better.Theres a mad woman in my home who is constantly giggling now dont burst my bubble, this will not last forever. im still stiff and sore, but the flu has gone for now. Hope to get back to yoga and tai chi next week!!! Maybe running before i can walk.Does anyone think im delusional, yes i hear you shout, but it is so good to feel this way again./many thanks for info and support.Senga

Senga - Yes! Result! Sounds very PMR-ish to me. Yes - it is wonderful to feel good again, no wonder you are excited - after all, it might not have been PMR and the pred might not have had that fantastic result. And you should improve more with time so there is more to hope for.

Now, I'm not going to burst your bubble because as long as you are on an adequate dose you will be able to move and feel pretty much human, but I'm giving you two warnings for the moment - the rest will come with time. This might sound a bit premature but the next step will be to gradually reduce that 15mg dose to the lowest dose that will control your symptoms. Don't allow anyone to rush you into doing it 5mg at a time - the most likely way to success is 1mg at a time. Too big drops are fraught with the risk of the symptoms coming back. And if they tell you you'll be off pred in a year or so - it ain't necessarily so! So if it takes longer - don't panic, get depressed, feel you have failed, because we are all different, react differently and take more or less time to get to any stage of recovery.

The other is - DON'T RUSH OUT AND DO ALL THE THINGS YOU COULDN'T MANAGE! The dust will wait a bit longer. If you go and overdo it straight away you'll suffer for it! Yes, try the tai chi but it may take a bit longer for the balance to come back. I don't know what sort of yoga you do - be gentle!

This isn't a cure, the pred is controlling the swelling that is due to the underlying inflammation and so it all hurts less. How did your doc tell you to take the pred? The recommendation is for you to take it in one single dose with your breakfast, as early as possible in the day, 8am at the latest. That helps with the side-effects and with a bit of luck won't stop you sleeping (that is a problem for some people and at higher doses).

Don't disappear now you have the pred - there is a long learning curve ahead of you as you learn to manage it all and the others here are waiting to help ;-)

We love a success story - looking forward to the next instalment!

all the best,

Eileen

so pleased you have got such a good result from 15mg ,I am the last person to burst your bubble but eileens words are from years of experiance read and learn about pmr etc dont run before you can walk ,rest is as important as exercise be kind to yourself this is a long road if you get through it without a hitch we will be the first to congratulate you but if you falter we will be here to help carolk

Thanks,wise advice, on 5mg three times a day,(locum doc) not to take to late in evening, trying to leave 5 hrs between dose however feel stiff neck etc after 4hrs.

Yes the dust can wait! my hands feet knees ankles back all still sore, so like you say little steps. Will see my named GP next tues he has all the jen.Drew yoga very gentle to be honest its more of a social thing coffee cupcakes cant wait for the class to finish. I do have lists of questions for you, however that can wait, im new to this tinternet malarky again thank you all very much for replys senga

most people take the 15mg together in one session with food before 8am ,this is one time when spacing the doses is not ideal carolk

If you take the dose all in one it tends to have a better effect on the stiffness - probably hits the inflammation over the head a bit harder! I've had PMR for rather longer than you really want to know at the moment - but I take 16mg of Medrol on alternate days (it's supposed to be stronger than pred and I'll tell you more about the rest some other time) but taking 16mg every other day is far better than taking 8mg every day. I put it down to the antiinflammatory effect of the double dose being that much bigger. Some people find the effect doesn't last as long as that and are already stiff the next morning - and a few then find if they take 2/3 of their total dose in the morning and the rest at night they get a good result. It all depends on you.

Gently does it - enjoy feeling better :-)

Eileen

Wow! Right diagnosis then! So glad to hear the Pred has worked its magic.

As the others have said, it is usually recommended to take the complete dose first thing in the morning with breakfast. Our adrenal glands normally produce their own natural steroid (cortisol) in the very early hours of the morning. However, that natural supply will now be reduced by the action of the Pred so a a big boost of Pred as near to that time as possible is better for controlling the inflammation.

I have been doing Tai Chi during most of my time on steroids, but do take things very slowly at first and give those steroids a chance to really get control of that inflammation - they are not curing the PMR but just damping down the inflammation to relieve the pain.

Best wishes for a smooth journey to recovery.

MrsO

Good afternoon fellow pmr. 2 weeks on pred, scary!!!!! been reading alot

about this pred stuff. Good results- stiffness, flu symptoms, pain all a great deal less. However ear popping less often but comes for hours and is very painful, asked doc to check but had so many Q's both of us forgot.Tayside health board dose regimen works out as 80 weeks on pred. Managed in primary care. I should be so lucky !!!Gp changed time of pred to take 15mg @ 7/8 am. This works out much better for me thanks for the heads on that one. Lots of info on anti-inflammatory foods its all good advice most of the foodstuffs I like, perhaps Im answering my own Q's on amounts - honey is a teaspoon in porridge enough? 2teaspoons turmeric in rice? 5 walnuts per day Is it just commen sense with amounts or can you overdose on certain foods HELP. I would rather not start taking supps as I have more than enough tabs to take and if its for the long run I know it can become very difficult for me.Any food advice would be magic Iv lost my app and found a horses. No hay recipes thanks.

hi re food its as you say commen sense obviously you could go mad on something and it might no suit you but most things would not be harmfull ,unless you hit the cream cakes etc !i do hope the one supplement they have put you on is adcal which is a combination of calcium and vit d these supps are essential ,i take two a day one after lunch and one after evening meal . i realise the write up on steroids is not happy reading but providing you are tolerating them and they are working just try and accept this is what your body needs at the moment . if you were a diabetic you would not hesitate to have insulin so see this as i need it so i must take them ! good luck keep asking ?? its the only way to be in control and there are many very clever people on this and the other website that have helped me through my first year and i know they will help you carolk

Thank you Carolk, yes on 2 tabs daily for vit c/d.Do you take them right after meals?, Iv been given different instructions. However this would be much better for my lifestyle gonna try your way. I had a break-out of spots and mouth ulcers very unusual for me all clear now, put this down to stress and new meds.Otherwise still feeling very positive re pmr got to take each day as it comes learning to pace myself, my dogs and garden dont mind thanks for your advice and support.

i take them after my meal but when it suits providing stomach has some food in it but not two together re absorption problems, so i take one after lunch and one after evening meal . you are more likely to get things like mouth ulcers etc because your immune system is compromised but things tend to settle down after awhile ,get them to test for anaemia every now and again because steroids can affect absorption of iron .good to hear you are feeling positive you will get ups and downs but learning to listen to your body is the key so enjoy your dogs and gardening carol k