An up date to my post 2 months ago ( what is feeling normal)

[mad-country-lover]

Good afternoon

lovely people , I am in need of some advice before seeing the private Rheumatologist on Saturday.

My first post on here was ( what is feeling Normal ) I had loads of helpful advice and information . I was also confused about having a high white blood cell count as had been told by the Rheumatologist that is all part of PMR ……. my second blood test the white cell count was back to normal and inflammation counts were good, I did see a private Rheumatologist as at the time I could barely walk , He said the diagnosis of PMR was correct, He did listen to my symptom's and advised me to increases the Preds from 15 - 20 mg per day , after seeing both sets of blood test results, He advised me also to split the Preds dose . that seemed to work better for me . I also had some sort of DNA blood test that came back negative . the in creased dose controlled the sand stinging in arm and leg joints only. groin stinging , muscle stinging remained the same

So I kept my appointment 1 month later with the original Rheumatologist, 2nd February who's manner was far better , and her advice was also to increase the Pred's to 20 mg she gave me a follow up appointment which was last week.

I have been on a roller coaster in-between the appointments , and kept notes which revealed a bit of a pattern, I also developed an eye problem , and a red face after sitting in the sun for half an hour.

I would have a couple of goodish days, then 1-3 feeling very unwell days, followed by a 1-2 day faire up.. Some flair ups I can put down to stress or trying to walk to far. but the feeling unwell days has increased to 3-5 days , my left eye sight went very blurred with shooting pains behind my eye and a sensitivity to light, I also had the red face . I did read quite a lot of info and posts on here, and decided to up my dose by another 2.5 mg per day making it 22.1/2 one week later I felt the same so increased it again to 25mg per day. at this point I was actually able to get my knickers and trousers on without the kerfuffle and pain, movement had improved and I could get up the stairs using my left leg first . I treated my eye for an infection the pain went but my sight is still blurred.

The rheumatologist was not interested in any thing I had to say and was clearly not happy that I had increased my Preds to 25mg. she gave me a good pulling around checked pulse areas on my head , said red face was normal told me to book an eye test. and a diabetic test. her prescription was to reduce the meds to 22 1/2 for 1 week continue the reduction weekly until down to 15mg . needles to say that caused a flair up which has got worse this week.

I went to see my GP and he agreed not to do that yet, He gave me a prescription for another full blood test . oo la all white cell counts are way up again inflammation only slightly. potassium is in the red. he was more worried about potassium level and again said the high white blood count is down to taking Preds ???? So is not a problem ??? the diabetic test is well low. So now I have the unwell feeling as well as a flair up. I will be questioning the private rheumatologist about my white count, but is it normal to keep feeling so unwell with all the other symptoms and how long does a flair up last with you chaps, I know we are all different.

I am also very worried about starting to reduce the meds feeling like I do and will be taking a copy of the dead slow program xx sorry for another chapter and verse again but I would welcome any advice in preparation for my appointment on Saturday

Take care xx

[PMRpro Ambassador]

What is the pattern of the good/bad experiences? One reason is doing too much when you are feeling good - the PMR comes back to bit and you feel bad, then you have to rest and have a few d=good days, Rinse and repeat. Keeping a diary might help you identify links.

Blurred vision can be due to pred - but the unwell feeling is more concerning. By now and at that sort of dose you should really be better able to function. But a weekly reduction is crackers and probably the reason you aren't doing better. The high potassium is concerning - maybe a bit more salt would help balance that out. Has your GP checked a blood test called creatine phosphokinase? There is something else that can cause PMR-type symptoms but leads to damage to muscles and that would possibly increase the potassium and also this other test which should really be done on anyone with ?PMR to be sure.

I think you need to explain clearly to the private rheumy what is happening and how you feel. And probably rest rather more:

healthunlocked.com/pmrgcauk......

[mad-country-lover in reply to PMRpro]

Thank you PMRpro

Over doing it.. is difficult as I live on my own. some days I am ok for a couple of hours then I just don't want to do any thing so I don't.

Other days I do push my self beyond that, by changing the bed, or sweeping the floor etc.

I do need to sleep every afternoon, if not I don't sleep well at night, this is still a learning curve for me .

I have looked at my blood tests CPK was done in 2016 the result was 55 and again on 6.11.18 it was 28 , (the guide lines here in France are from 29-168) so last November it was highlighted but just below. it has not been tested since.

I have looked at Potassium which has always been on the high side , now it is 6.1. in 2014 it was 5.2 and has remained around the 5 mark ( the markers here are 3.5-5.1 )

Sodium levels have steadily increased over the years from 138 to 144 ( markers here are 136-145) I was told to avoid all salt when diagnosed with PMR initially, I have gone all out avoiding salt. every thing is fresh and made , and I use salt free products when cooking. but my sodium level has still gone up.

My GP prescribed me Kayexalate to reduce the potassium level ???? he said mix a tea spoon in water, I asked when to take it, was told in the morning … it came in a pot no directions etc, so I did as he said on Tuesday morning, due to feeling un well on Tuesday night I decided to look for user guidelines on line. which clearly states it should be taken a few hours after other meds as it would coat other medication making them ineffective ie blood pressure meds and pred,s . so something else I have learnt.

take care x

[SnazzyD in reply to mad-country-lover]

Hello. Pred normally depletes potassium and magnesium and causes a rise in sodium. If your potassium is going up in spite of Pred I’d be a bit more enquiring if I were the doc and look a bit more at your renal function at the least.

A weekly reduction will just make it impossible to know what is withdrawal and what might be a flare and you’ll feel rubbish. On the higher doses I did one domestic thing a day other than food preparation. The family ran out of socks a few times. I made the afternoon nap obligatory even if I thought I could go without it.

[mad-country-lover in reply to SnazzyD]

Both my sodium and potassium levels have gone up, last night I looked back at older blood tests and potassium has been going up for a couple of years, I did question him 2 years back about that. he said it was due to the bloods being transported to the lab, but my last tests were done at the lab, it was after that he prescribed meds to bring it down. and a weekly blood test at the lab what a malarkey , but I will be asking .

Take care x

[PMRpro Ambassador in reply to mad-country-lover]

I worked in the labs in a former life - transportation should have nothing to do with it if it is done properly and the level shouldn't get that high. And if there has been an upward trend - he should have registered that fact. He must seek a cause.

[SnazzyD in reply to PMRpro]

Quite. The couriers who used to pick up our bloods drove samples from one surgery to the next for an hour or three. Then they were left for a while for processing at the hospital. Some of the samples sat in the bag for 4 or 5 hours before pick up. Potassium levels did not keep coming back high.

[mad-country-lover in reply to PMRpro]

I forgot to answer the pattern

if I have done to much I will feel exhausted for a day or so.

But also have for no reason I can put a finger on , a few days of feeling ok, then out of the blue I just feel unwell, after a day or two the inflammation/ pain comes back in but moves around my body each time this happens, this week it is from the waist down to my knees.

I have not started tapering the pred,s and also think her directions are ridicules, I do feel sorry for the older folk round here who would take the Rheumatologist's word as gospel

x

[PMRpro Ambassador in reply to mad-country-lover]

I think you need to see another doctor. There must be a reason for a potassium level that high - top of normal range is 5.3 - and it could be causing some of the symptoms. I suspect here where I live in italy you would have been admitted to sort it out and find out why.

bpac.org.nz/BT/2011/Septemb...

Hyperkalaemia is towards the end - does any of that fit?

I'm not convinced what you describe is PMR as we mean it and you should be investigated for other forms of inflammatory arthritis - especially as you are needing so much pred.

[mad-country-lover in reply to PMRpro]

Thank you for that information PMRpro

I have read through the information and made some notes, as some is not sinking in so sorry to say chapter and verse again

Looking back I started having problems 5 years ago when nursing my husband with cancer,

I was shocked my blood pressure went up, cholesterol went up, and I started getting leg spasm's, this was while in the south west of France, Dr there started me on blood pressure pills and like they do offered me diazepam.

After my husband died I came back to the mid south of France , went to see my own Dr ( who I still see ) I cant tell you how many tests and specialists iv seen this last 5 years . I had my heart monitored and scanned due to blood pressure, I was given the all clear there and blood pressure has remained good while on candesartan/hydrochlorothiazide 16mg/12mg , I am also on statins due to cholesterol that is ok now, I have had scans and seen a neurologist due to the leg spasms, all he found was a very small amount of muscle wastage and said that was expected for some one of my age ??

I have had every part of me MRI scanned so know I have arthritis all over and thinning discs , but being sensible has never stopped me doing any thing, and rarely would it be necessary for pain killers only after heavy work.

Iv had a camera shoot both ends that was due to acid and am still taking Esomeprazole for that.

2 years ago following flu I had an eye infection which turned out to be dry eye syndrome … that was followed by vertigo , then both tendons snapped in both arms , a bit of a mess but I live with that.

the only thing I could not cope with was the leg spasm's , that was the start of Dr prescribing me anti-inflamatories … which went on to what I have now. But also over the last few years I have had this unwell feeling and no strength that I have put down to getting older etc …. Dr has been quite good I have a check up every 3 months for daily meds and every one gets a yearly blood test, I am quite shocked with him not picking up on my potassium reading, he has been emailing me to make sure im taking the powders to reduce it.

I will be asking the rheumatologist a few more questions on Saturday , then I think back to the Dr,s or see the other Dr down the road.

Thank you so much for your time Pro

take care xx

[Soraya_PMR]

“Sand stinging in joints” just want to say that I recognise that feeling. I described mine as grit in hips and shoulder joints, accompanied by a fluey 48 hour thing (February). This was several months into a slow decline, and after the gritty weekend when I couldn’t bear to sit still and couldn’t bear to move, my decline hastened, and in the April I started pred.

Muscle stinging, not quite, my thighs felt like someone had been at them with a cheese grater! 3am, 4am, couldn’t bear to stand. My groins were a ‘sharp ache’ and my upper arms felt like they were being tightly pinched. So difficult to describe the many types of pain isn’t it, just thought it might help you to know I recognise those bits.

[mad-country-lover in reply to Soraya_PMR]

Hi Soraya

I have also described the joint pain as ground glass , and the muscle stinging as acid pouring out of my joints and running down my legs, it is so hard to describe and some days it feels different .

but since increasing my Preds to 25mg this has eased up . the muscles either ache or its a stinging pain, what a malarkey

x

[Jackoh]

Yes can associate with the acid type of feeling , I thought it was like it was acid rather than blood in my veins! This was when I felt at my worst in a flare. Rheumatologist said he didn’t really know what I was talking about so I thought maybe it was just me!!

[mad-country-lover]

good evening Yellowbluebell

I pop in for a read every day, and gather more information, and often find discussions relevant to me at that moment in time which has been good .

take care x

[mad-country-lover]

I had the appointment with the Private rheumatologist today

He looked at all the new blood test results, we discussed the other Rheumatologist I have been seeing, and her disinterest in my symptoms and was not happy that she has not asked for further investigations , he said I should not be feeling like I do while taking 25 mg of Pred per day and defiantly not be reducing them .

He contacted the main hospital and I am waiting for a call perhaps on Monday to be admitted for PET scan, CT scan , some other one iv never heard of and several tests , he said I should be in there for around 3 days , I think he will also be writing a not very pleasant letter to my GP as well .

Any way it will be good to know what is exactly wrong and get it all over and done with in one

Thank you all for your time advice and help

I will keep you posted

take care

XX