Doctors appointment today (update)

[skibarski2]

Hi Everyone

Well today was my first week in on steroids for the PMR, I have been writing more or less daily asking questions U finding answers, also suggestions from some of you on the sore head I have had for a long time, which left on the first day of taking steroids 15mg a day. But returned with a vengeance on Wednesday.

Anyway, doctor gave me a thorough examination at appointment, asked me several and all relevant question a thought. But ruled out GCA, saying I had muscle spasms in my neck, (I do have two large muscles appeared on either side of my neck) & this is what she said was causing the headaches. She showed me on the skeletal man she keeps in her surgery, what happens with the spasms and how they travel up the back of the head, then branch off to the side of the head.

She did prescribe me more prednisone also gave the the steroid carrying card, prescribed calcium + Vitamin D. Saying I could be on the steroids awhile, no upping of the dosage though. So still the 15mg per day.

AND she threw in diazepam for muscle relaxant.

I go back in 10 days time this time, unless something untoward were to change for the worse.

I have been taking my dosage of steroids as recommended here by you all, in taking them all at once. I have to say I got some good sleep last night, so I shall be sticking with that...

Rather tired today though, could have stayed in bed all day if I did not have the doctors appointment. So I shall be heading off to my bed sooner rather than later tonight.

I hope this finds everyone well, with as little pain as possible if pain. Once again, I am so thankful for finding this place. Thank you all.

Kate x

[DorsetLady PMRGCAuk volunteer]

Hi skibarski2,

Thanks for update. If GP is correct then hopefully the muscle relaxant will help your headaches. If it does, then that should reduce your stress levels - which can only be good.

Take care,

[skibarski2 in reply to DorsetLady]

Hi Dorsetlady

No really bad headache hanging over me this morning when I woke up, it is usually the first thing too kick in. So, so far so good. And yes, anything that reduced or clears pain can only be good for helping ones stress levels.

I hope this finds you well D/lady & your day. As always thanks again for taking time to reply.

Kate x

[DorsetLady PMRGCAuk volunteer in reply to skibarski2]

Good. Long may it continue.

[SheffieldJane]

I am glad you are at last getting some blessed relief. A neck spasm, who knew? I can sometimes feel rope like structures in my neck and I get a lot of pain in the back of my skull. I Wonder if it also neck spasms? Then I can float away for a bit with diazepam.

Still be alert for GCA symptoms though, jaw pain, temple pain, eye problems. I think one in five PMR sufferers can go on to develop GCA and that of course needs immediate attention.

[skibarski2 in reply to SheffieldJane]

Hi Sheffield Jane

Yes, who would have known. Am though watching out for any serious changes in my eyes, I do already have more blurred vision which I did tell doctor about. But when she saw& touched my neck.( Which was more raised on either side of my head) she said my neck was in spasm.

And this she believed was what was & had caused this headache I have had for so long now. The headaches have been with me longer than the actual passion over my shoulders, neck, arms, Hips.

So maybe she is right. But as I said I shall be looking out for more signs just in case. Thanks yo what I have learned here. More GOOD news though, I got the best nights sleep I have had in years last night. I am thinking that has to be down to the diazepam.

I remember my mum many years ago used to take one of those pills every night for sleep. She to had a LOT of pain through her life. So if it was good enough for my old mum, it is good enough for me. Lol. Lol

Once again thank you for taking the time to reply, & I do hope you get some help yourself so you too can enjoy the sleep I had last night. Take care.

Kate x

[PMRpro Ambassador]

I have had the headaches due to neck muscle spasm too - my osteopath and Bowen therapy kept me upright for the 5 years I had PMR before pred. It did improve on pred after some months but returned as the dose went down. Here where I now live it was diagnosed as myofascial pain syndrome and is dealt with by massage therapy (done by a physiotherapist) including manual mobilisation of the fascia in general and the trigger points in particular. I have also had steroid injections into the area of the trigger points (they are hardened areas of muscle fibres caused by local accumulations of the same inflammatory substances as PMR). My experience of muscle relaxant tablets was that everything relaxed except the bits that needed to!

[skibarski2 in reply to PMRpro]

Hi PMRpro

Thanks again for reply, I am hoping the diazepam work's as no way do I want to go down the oath of message. I can NOT bear to be touched. This has been for More or less all of my adult life. I too been that referred to many years ago as molecule pain syndrome. Then it changed Fibromyalgia.

So even if it were offered. I would refuse massage of any kind. as that to me is what being tortured feels like.

Right now, I suppose I have to just give this course of meds a fair chance before I shall see any difference, if there is any difference. It is also 10 days before I have to go back to doc. So I am sure I shall have an improvement by then if these diazepam are working or not.

I am not sure, but I think if the diazepam does not work as she Might be thinking it should. Then she maybe is thinking of GCA, as she did say, we may have to increase the dosage of Pred.

Right now I am just hoping the diazepam does it for me.

I am just amazed at the knowledge you all seem to have here on more or less All of the different treatments tried, & meds prescribed. Knowing that you all have probably tried these same treatments yourselves. It's what really helps me anyway.

Hope you are enjoying a good day PMRpro.

Kate x

[PMRpro Ambassador in reply to skibarski2]

I was originally admitted for infusions of steroids and painkillers alternating with diazepam. I had a major reaction to the i.v. diazepam so had to stop but they had at least stopped the worst of the pain - I couldn't move at all. Because of that reaction I had to go the slow way, not massage but very targeted myofascial release therapies in the pain clinic. It was excruciating, I admit that, but it worked. The short-lived, grit your teeth and have a scream if you have to (I respond by laughing in fact) agony was more than compensated for by the longer lasting pain relief. And most patients I know say the same.

[Aleish]

Kate, what was your sed rate at diagnosis?

[skibarski2 in reply to Aleish]

Hi Aleish

I have no idea, infact do not even known what sed rate means. Sorry just learning about this conditiion now, but if I should have been told by doctor about my sed rate. I will certainly be asking at my next appointment. Sorry I am of no help to you.

Kate x

[DorsetLady PMRGCAuk volunteer in reply to skibarski2]

Hi Kate

Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. A sed rate test isn't a stand-alone diagnostic tool, but it can help your doctor diagnose or monitor the progress of an inflammatory disease.

When your blood is placed in a tall, thin tube, red blood cells (erythrocytes) gradually settle to the bottom. Inflammation can cause the cells to clump. Because these clumps are denser than individual cells, they settle to the bottom more quickly.

The sed rate test measures the distance red blood cells fall in a test tube in one hour. The farther the red blood cells have descended, the greater the inflammatory response of your immune system.

Averages (based on 1996 study)

Age 20. Men 12, Women 18

Age 50. Men 14, Women 21

Age 90. Men 19, Women 23

Another study shows slightly difference values -

Age under 50. Men 0-15 Women 0-20

Age over 50. Men 0-20 Women 0-30

Trouble is, as individuals, we don't usually know what our normal is as it's not a test that is done when you don't have anything wrong. Some people's are a lot lower normally than the averages stated.

[skibarski2 in reply to DorsetLady]

Hi Dorsetlady

Thanks again for reply & an easy explanation of what sed rate is. I have to admit, I have never been one for asking question of my doctorS. Either about Myself or what they prescribe meds for. I have always just believed they know best. Being the professional & all. So I guess it is often a case of don't ask & you are in & out quicker eh?

I allowed my doctor to take the lead yesterday, do her own thing as I was happy with the fact that she used her own judgement last week, and that meant I did get a lot of relief.

But once we had finished talking about these headaches and her examination of me. And she decided to try treating muscle spasms. I did mention that I had found a Lot of information online. In a PMRBOCA group.

And that any "out of surgery" help or information I required, I as getting it there.

She seemed glad about that. So long as I ran everything by her she said Before introducing other ways of treatment. I said I would never do that.

But thanks again for a very detail explanation of things in ready to this sed rate.

Take care

Kate x

[DorsetLady PMRGCAuk volunteer in reply to skibarski2]

However ,

No we may say what's helped us in the past, but always with the caveat that you don't do anything without checking with your doctor first.

See reply further down also!

[piglette in reply to skibarski2]

Hi Kate, there are normally two blood tests done for inflammation CRP and ESR (sed rate), although some people just have one done . CRP seems to be getting more popular as giving a more up to date statistic. I always ask for a printout of all my blood tests and consultant letters. I find them really useful over a period of time in tracking what is happening. I just ask the receptionist for a printout. I believe some people can now see them online. I can get my repeat prescriptions on line now but not by blood test results yet.

Some people never have raised inflammation markers which can makes life difficult in seeing how things are going. For those that do have raised levels it is a way of monitoring how well the steroids are working and whether they have got the PMR under control OK.

[skibarski2 in reply to piglette]

Hi Piglette

Thanks for that, I knew I had not heard the word sed rate. I am thinking I did not get a reading or number on that, as all I got was blood tests were "normal" so it we shut instinct on the symptoms I as portraying that the doctor decided to just "treat" me. And see how things turned out. So I guess as I said I am one of those with no asked markers. Just one of the "what do we do with her kind of patients" lol lol

Right now, I can feel the easing of what I called tightness in my neck along the top of my shoulders. So maybe this diazepam will do the trick when it comes it the headache. I certainly hope so. I have No energy today though, so am just enjoying a Lazy day. They don't happen often, so. Don't feel guilty. lol lol

I know so keep repeating myself but I really am amazed at the I formation you all have & share with us newbies to this condition. It really really does help having you so close (if you know what I mean)

Hope you are enjoying your Saturday.

Kate x

[piglette in reply to skibarski2]

Hi Kate, I would definitely ask for the actual results. A GP read my results off the screen the other day to me and managed to get them wrong, it seemed to be a case of dyslexia on her part, but she was basing a decision on it. Another GP told me my CRP had gone down, I had a printout and pointed out it had gone up. She then said it was only a small amount, I pointed out it was a sixty per cent increase, her reply was if you want to look at it like that! I have become a lot more cynical in my old age recently.

[skibarski2 in reply to piglette]

Wow! You do know your stuff eh! How long have you been diagnosed with PMR. I could look at a piece of paper and just agree with them. I just KNOW I would too. Lol lol

Kate x

[piglette in reply to skibarski2]

Hi Kate,

I suppose it was mainly curiosity or perhaps I don't trust people. I have been diagnosed over two years ago and probably read the discussions every day. I had never heard of sed rate etc before I was diagnosed. Since diagnosis I have a spreadsheet with my daily pred dose, blood test results and even how I feel, I am obviously a born nerd. I also became a nutrition fanatic, and must bore my friends silly.

[DorsetLady PMRGCAuk volunteer in reply to skibarski2]

You might at the beginning, but as you get to know your illness you will become an expert.

After diagnosis I always asked for my ESR and CRP figures, not just the comment made by the doctor. That way you can know whether they are up or down from previous readings - a comment such as satisfactory is meaningless really.

Unfortunately my initial ESR reading, a few weeks into symptoms was deemed "satisfactory" - so, not knowing any better I accepted that, and PMR was discounted by GP. However, she was wrong, and despite further classic symptoms never retested, so I ended up 18 months later being diagnosed with GCA having already lost sight in one eye. Had I known what I know now I would have asked for the actual reading and checked whether it was "satisfactory".

That's why we bang on about learning as much as you can about your illness. I knew nothing about GCA nor PMR, unfortunately it appears neither did my GP! It was a very sharp learning curve for both of us.

[Yellowbluebell in reply to piglette]

It’s not just me that is getting stroppy then piglette?!!

[Baileyw06 in reply to piglette]

My Doctor did the CRP test to confirm her diagnosis in April which was 25.Thursday she redid it and it went to 7.So ,it seems the way she is treating me is working .We made one change at 15 mg in the AM which made a huge difference.I was splitting the dose at 10mg inAM and 5mg PM .Saved me from increasing dosage.

[PMRpro Ambassador in reply to Baileyw06]

Yes - a single dose daily is by far the best way to use the pred - although for some people the effect doesn't last overnight so an exception has to be made. But I've always suspected that then you need a bit more.

By the way - the CRP doesn't confirm the dx, it adds to the suspicion/evidence. CRP can rise for other reasons - especially chesty colds or renal infections - so if it happens to rise and you don't have any symptoms don't rush to raise the dose, wait a few days and see what happens first.

[PMRandRA]

hi Kate, glad you have found a remedy. Just a little note for you, do you know that diazapan is the new name for Valium? Just so you can have a choice for if you want to take it.

xxxxx

[Horizon12]

Hi, my husband and I have 2 dobys and love them dearly. I was diagnosed 14 February and am still getting used to the dragon as I call it.