1st month of Pred.

[Sue8]

Well today I went to the doc's for a review on the Prednisolone. I have had a month of 20mg and he has now dropped it to 15mg. I asked what it would be next month and he said hopefully down to 10mg. He then followed by saying lets see how the 15mg goes though as we might have to go slower. (phewww) So not got to hassle him thank goodness. Also had my hb1ac results for my diabetes and it's down to 6.6 so the Pred is not doing to bad with the diabetes even though my blood sugars are all over the place. I have to go back in 2 weeks for a blood test to see if my C-reactive protein is dropping as it is 24 at present and has been as high as 29. So fingers crossed.

I asked if I would possibly be eligible for a blue badge but he said he doubted it cos PMR is treatable and that they are very strict now on who can get a blue badge. So I won't bother trying.

I am having palpatations but he did not think it was the pred causing them though my headaches maybe a different matter.

And that was about it really, just got to accept it he said so I will and get on with it. Though I have to say I DON'T LIKE IT.

[Annodomini]

Down to 15 is progress! I found very little difference going down from 20, so I hope you will feel the same. Further down the dosages, although the CRP is well down now, I'm back with the aches, though nothing like as dire as the initial symptoms.

Unfortunately your doctor is right - you have very little chance of a blue badge. They have made it harder to get, ironically, just as most supermarkets have expanded their disabled parking capacity!

[Sue8 in reply to Annodomini]

Lets hope it makes little difference with me as far as pain goes also. Got up this morning with a very numb arm and hand and pains down my back but easing now so will be better once had the Pred. Like my doc said some of the bits with PMR we just have to accept and live with.

As I have a large family and the youngest is only 6 I have no time for this illness or the diabetes but will learn to cope..

[Celtic PMRGCAuk volunteer]

Sue

Well done and good luck with the first reduction. However, thinking ahead I wouldn't even consider trying to do the GPs next suggested one from 15 to 10mgs - 12.5 would be far wiser. Back to the present though, you've probably already heard the advice to take it very easy for a week or so following each reduction, bearing in mind that if you do have a slight recurrence of symptoms in the first few day that can simply mean that you are experiencing steroid withdrawal pain. If the pain continues for much longer, however, it could mean that the inflammation is not yet under complete control and you might have to increase back up slightly. Take it very easy though and fingers crossed all will be well.

[Sue8 in reply to Celtic]

No I had not heard of taking it easy after reduction so Thank you for the heads up on this. The next reduction I am worried about but the GP does not want me on them for long if it can be helped due to my diabetes. Swings and roundabouts really, treat one and get probs with the other.

[meggies]

Hi Sue,

My GP asked whether I had applied for a Blue Badge. I hadn't, but I then applied & have got one.

Regarding your reduction. 10% is pretty much the max you should reduce at any one time. The lower the dose you are on, then you should take longer each time on the 'new' dose before reducing again. I only manged to get to 16mg & had a flare, so I only reduce 0.5mg per month & get bloods checked first. Also, I reduce the 0.5 every 4th day, every 3rd/2nd etc until on the new dose every day. Not everyone needs to be quite as slow as me!!

Most people take about 2 years before they are able to stop preds - some more quickly, some more slowly & others have to stay on a low maintenance dose for life. Very fast reductions are associated with more flares and also a greater risk of a 2nd bout of PMR later. It is definitely the tortoise, not the hare that wins this race.

There are rheumatology guidelines which say about reductions - I know several people have printed them off for their GP's benefit.

Hope things settle down,

Margaret

[Sue8 in reply to meggies]

I was unsure of weather to ask to be referred back to a rheumatologist. I had seen one a couple of years ago and he did a scan on my hand and found nothing as it was not flared at the time. He never mentioned PMR and discharged me with ibruprofen. I now can't take this cos of diabetes and the Pred. Not sure what a rheumy can do more than the doc to be honest. I have started with palpatations over this last weekend and they are driving me nuts I also keep getting shaky. Hard to know if it is the pred or the diabetes.

[meggies in reply to Sue8]

Not sure what to say about referral to rheumy -I'm lucky my GP is very good. Your GP is right, the preds won't help your diabetes at all, but reducing too quickly means you have to increase the steroids if you have a flare. Unfortunately, there is no actual test for PMR and it can be a while to get diagnosed, particularly if younger. Another GP I was seeing for over a year, said I was too young at 58 for PMR. I wish!!

Do you have one of those testing kits for use at home? Maybe could help determine if palpitations are steroids or diabetes.

Margaret

[Sue8 in reply to meggies]

what testing kit????? I am only 48 (49 a week on Friday) but have suffered for at least 3 yrs. I have had a raised CRP for a few years now highest was 29 and it is 24 at the moment. Getting it tested again in 2 weeks. My Doc is very nice and very thorough and I trust him.

I just want to feel "normal" again

[meggies in reply to Sue8]

Sue, the thing you prick your finger to test your blood sugars. My sugars were very erratic on higher preds, but have settled down now. I used the test kit a lot in the beginning & it helped me learn what & how much I could eat.

You will feel 'normal' again, but unfortunately it can take time. It can also take time to adjust to the changes that PMR & steroids bring. I'm 7 months since diagnosis (and a year with symptoms prior) and I hate the steroids - raised sugars, cholesterol, stomach probs and have osteopenia so need the bone protection too, plus the 'cosmetic' effects. But, I remind myself that how ill I had become pre-diagnosis - couldn't walk by then and that the steroids significantly reduces chance of developing Giant Cell Arteritis. So steroids it is. I am nowhere near my pre PMR fitness, but my quality of life is much better than it was and fitness improving slowly, despite the side effects. My mantra for PMR became: Patience Must Rule.

Margaret

[Sue8 in reply to meggies]

yes i do self test my blood sugars though as I am type 2 I have to pay for the test strips which are £25 a pot of 50 which don't last long if you test several times a day. I test if i don't quite feel right. 2 weeks ago I felt really odd and thought my sugar was high, tested and i was in hypo at 3.6. According to the doc and pharmasist this should not happen on my meds for diabetes but it did. Then Sunday I was off all morning and eventually tested and it was 12,3 so obviously coming down from a hyper.

I am happyish to be on the pred as no way do i want GCA. I had lost just over a stone until put on the pred. Not put any back on yet so hopefully if I curb my eating I won't but if I do it is little price to pay for less pain.

[meggies in reply to Sue8]

Hi again Sue,

As far as I am aware, there is no set policy that Type 1 gets them on prescription & Type 2 don't. There has been a lot of concern expressed by Diabetes UK about restricting testing kits as a cost saving exercise.

Here is the link about it & tells you what to do.

diabetes.org.uk/Documents/H...

If you look on page 7 of this, it says that there is no national advice on restriction and any health care provider is going against the N.I.C.E. guidelines. In your case, there is more reason to provide the strips as you are on steroids & have a busy life.

Hope the above helps.

Margaret

[Sue8 in reply to meggies]

~I pleaded my case with my doc as both the chemist and optician said it is good that i test to keep what i eat in check and so prevent future problems but he won't budge.

[meggies in reply to Sue8]

Sue, that's not good enough. Have a good read through the Diabetes UK pack - there is a standard letter you can print off and use.

Good luck,

Margaret

[Sue8 in reply to meggies]

Will do Thank you.

[Hidden]

Hi Sue.

I think the drops in pred are rather steep, but see how it goes. After all we are all different. Lots of luck anyway. Pity about the blue badge. Personally, I think you should have one in you present state of health. I was thinking of applying for one myself.

Have just read about your palpitations and headaches. I wonder what your GP is thinking of. In my opinion, you need a specialist's advice.

Pats.

[Sue8 in reply to Hidden]

GP said they are getting strict on the blue badges and only get one if you can't walk further than about 50 yards.

I wonder if anyone else gets palpitations or the headaches?

If you do apply please let us know if you were successful.

[meggies in reply to Sue8]

I got my badge no problem & the council asked me if I wanted a 'Disabled Bus Pass' too for free bus travel. I do know quite a few other people with PMR (not only in Wales where I am) who have got a Blue Badge. ???

Margaret.

[Sue8 in reply to meggies]

trouble is if I apply then they ask doc he prob won't put anything helpful but I don't know. It says in the criteria that they can ask for a medical to be sure of your condition. I can walk to town but have trouble getting back it is just under 1 mile and takes me about 20 mins going slowly. Then that's it for the day I will have to rest. Don't know wether to try or not.

[Hidden in reply to Sue8]

Hi Sue,

yes, I certainly did get them, particularly on the doses above 20mg, but also on the medium doses below 20mg. I could sometimes hear my heart beating in my head. When it first happened I thought someone was hammering on the wall outside. Pretty scarey, but it was not a constant thing. Just now and again.

The blue badge question. I wonder if allcouncils use the same rule. As for walking more than 50 yards. I could manage that on your dose, but my partner often had to carry my handbag. I don't carry very much now on walks, but to go shopping I have to take my car. Does your GP really think you have nothing to do when you go out but walk about carrying or pushing nothing?

Pats.

[Sue8 in reply to Hidden]

I can't carry much as the pain would be unbearable. My trolly broke so waiting for my birthday as the kids are buying me a new one. I don't drive but my hubby does and a few of my kids do. I go with my parents to town usually.

[Hidden in reply to Sue8]

Hi Sue, Let's take it that PMR is permanent. If we are lucky it goes into remission, but it is still there, waiting to wake up again if we overdo things physically or maybe get a virus that really taxes our immune system.

I must stress again that you need to see a specialist. I did. I was referred before the initial blood tests came back. The GP I saw was very experienced and I saw a rheumy a few weeks later. I had been on pred from the start. The Rheumatologist was due to retire and therefore he knew the condition well. He had taught the young rheumy I have now. He said to me that I was classic for PMR. I said that my blood tests were negative and he replied that doctors should no longer rely on blood tests, but evaluate a patient's symptoms and their response to steroids to make a diagnosis.

Although I am down to 6.5mg of steroids now and feeling pretty good I do not push it physically. I can't. If I overdo it I could wake PMR up again and be back to square one!

In our local supermarket I get help to lift and pack my shopping.

I usually shop late so that my partner can load the car and carry all inside at home. By this time he has already done a ten hour day running his business.

I do all the housework and most of the cooking and gardening, but where lifting anything heavy is concerned, I leave it to my partner.

You have to get most of your help from your parents. I don't know what state their health is in, but for all your sakes I think you are entitled to a blue badge.

Pats.

[Sue8 in reply to Hidden]

Thanks Pats. My parents are pretty good for their age. My mum is 69 and has asthma, osteoarthritis which has had her have 2 new knee,s and she is a pre-diabetic. My dad is only 65 (not biological) and has a twisted foot due to arthritis and is in constant pain with it. They have a blue badge. My mum only retired a year ago and dad was made redundant at the same time. They are fab, always there for me.

Maybe I will fill in the app and see what happens after all they can only say yes or no so nothing lost.

[meggies in reply to Hidden]

Another lovely link - very long, but it does explain everything.

It is more complicated than just 'walking' ability, pain is also a factor. People without mobility issues can also get Blue Badges. e.g. people with epilepsy as very dificult to get person back to the car after a seizure, also people with autism, Chrohn's can get them.

The 50 yards is not the criteria, but the position should be permanent. My GP said when she told me to apply. not to worry as she would need to say that condition is permanent. I guess it depends on your GP.

assets.dft.gov.uk/publicati...

Margaret

[Sue8]

Oh bugger, had to get my 6yr old daughter to get my hubby to help me out of bed this morning. My left side had gone completely I think due to tossing and turning all night. Not so bad now but today is the first day I drop my pred dose so fingers crossed.

[Celtic PMRGCAuk volunteer]

Sue

I agree with Meggies - maybe we can walk more than 50 yards but it doesn't mean to say that we aren't in considerable pain whilst doing so.....and no-one can see that pain.

I did get a Blue Badge but don't know how much having spondylolisthesis (slipped vertebrae at base of my spine) contributed to qualifying. I was suffering major problems from both conditions in trying to get back in my car when left with insufficient room to open my door fully and on a couple of occasions strangers were backing my car out for me much to the dismay of my hubby when relating the story afterwards (he had visions of it being driven off)!

Sue, if I was you I would just apply for the Badge and if necessary attend a requested assessment (I did). I don't know if you're able to take painkillers/anti inflammatories (the latter not a good idea when taking steroids though), but I'm unable to take such things because of having only one kidney which itself is not filtering out at 100%. So I was just left with the steroids. Although your GP is saying that you won't get a Badge because the illness is treatable, that really isn't the case - there is no cure, no-one knows if/when it will go into remission, the steroids are purely treating the inflammation not curing the illness.

I suffered palpitations frequently (still do on occasion) especially when changing the Pred dose, either up or down, although I do have an irregular heartbeat and slightly leaking mitral valve.

[Sue8 in reply to Celtic]

I have indeed started the application online saved it for the photo to go on and now can't get back into it.

[Sue8 in reply to Sue8]

And it's done and sent online. Will keep you all posted. Many thanks for you all giving me the strength to do this and making me realise that this illnes is in fact dibilitating.