pmr diagnosed with normal bloods

[jennycat]

hello. I am new to the diagnosis of PMR in myself but as a nurse have met people with it and have always had a lot of sympathy for them as it did seem to be a difficult diagnosis to cope with at times, especially as many of them were still juggling working. I am having difficulty allowing myself to accept the diagnosis as my bloods were normal even though the steroids have had ( or did, until I started tapering!) a life changing affect. Is there anyone else here with normal bloods?

[SnazzyD]

Well I had GCA (PMR’s ugly sister) with normal bloods and negative biopsy, both possible with the condition. Plenty of people have had the same issue. You are lucky your GP wasn’t one of the Dr’s who take the normal result as proof of a negative diagnosis, leading to much suffering on the part of the patient. Yes, it is a leap of faith that you do have to take the Pred, especially when in some respects it can make you feel worse. However, no matter what the evidence you want is, the justification is in the fact that symptoms return with too fast a reduction after a good result initially.

I was 54, very fit and working when I was struck over a weekend. Went to work on the Friday, 60mg Pred by Monday. The Pred is brilliant at reducing the inflammation of your autoimmune condition, but it isn’t curing it. A resolution of symptoms doesn’t mean it is ok to go back to normal unfortunately, especially vigorous exercise, due the effect of both the Pred and the PMR. Repetitive strenuous movements were the worst for me. Your body desperately needs to rest even though the Pred gives you go juice and can hide the fact that you are ill. The more you over do it, the more Pred you are likely to need until your autoimmune activity starts to wane appreciably, which is unpredictable. What you do need to do is avoid reducing too fast and/or over doing it and ending up going back up in dose, only to repeat the cycle. They don’t call it life changing for nothing. It does get better but initially it requires one hell of an adjustment and buckets of patience, something most of us have in short supply.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

A few on here with no raised markers, and studies over the years have showed that up to 20% of patients don’t! Which is why we always say symptoms are the key!

You might like a look through this - and unfortunately working and PMR don’t make the best bedfellows.. but many do continue as they have no choice.

healthunlocked.com/pmrgcauk...

Please keep in touch -always someone around to help -on all sorts of subjects.

[nicpatan2 in reply to DorsetLady]

My bloods showed PMR when I was first diagnosed 11 years ago. I had 2 relapses but bloods were relatively normal but doctor said that clearly PMR had returned. Kicked steroids in March this year after 10 years but this week diagnosed with GCA. This time markers raised and doctor is sure it is GCA. Feel somewhat gutted but I suppose it is what it is. Catherine

[DorsetLady PMRGCAuk volunteer in reply to nicpatan2]

Sorry to hear about your GCA- so what dose are you now on?

[Fatsiajaponica]

Hi Jennycat, sorry that you have joined the PMR club but we are all here to support you through this with a mixture of expertise and experience.

It is tough is you have to continue working but so important to have as much rest as you can, not to taper too quickly to avoid the rebound effect i.e needing to increase the steroids and start again tapering. I notice that the steroids were working until you started to taper? Can you tell us what dose you started on and how you have been advised to taper? If the symptoms are returning you may be tapering too quickly before the inflammation has been cleared out. Often we are advised by GPs to follow an unrealistic reduction and start to feel unwell again. Few GPs have much experience with this illness and just follow some basic guidelines which often do not fit with an individual.

With regard to the bloods, mine were within normal range but I was fast becoming quite disabled. The rheumatologist did not prescribe and spent months trying to rule out everything else, in the end saw another rheumy who immediately prescribed on the basis of history, symptoms and a trial on prednisolone.

Anyway, keep us updated, best wishes.

[PMRpro Ambassador]

Hi and welcome.

I was 51 when the symptoms started - and my GP was baffled because the bloods never showed anything and I finally worked out what it was after several weeks intense online searching 5 years later!! Up to 1 in 5 patients have blood markers "in normal range" - but it doesn't mean they aren't raised FOR THEM. My natural normal ESR is low single figures. it ran at 16-18 for weeks during a massive flare when I could barely move. But that is still at the upper end of normal so no-one even twitched. The normal range isn't a range that is normal for a single individual - it is the range of readings found in 95% of a large population - 10,000 is a usual sort of no of normal nominally health subjects used to collect the results. 2.5% are lower, 2.5% are higher. Unfortunately - only the lab people seem to "get" that!

You don't tell us how old you are but you are still working so I assume relatively young. It seems more common to find normal bloods amongst younger patients. We also tend to have other atypical things about our journey - often not diagnosed for a long time and that seems also to make the journey longer, One thought is that the immune system becomes entrenched in its misbehaviour and doesn't want to "give up" its learned bad behaviour.

The pred cured nothing - you start on a dose that should be plenty to manage the inflammation, hopefully are left on it long enough for a good springclean to clear out the accumulated inflammation and then you taper slowly to titrate the dose to find the lowest effective dose, the lowest dose that manages the daily dose of new inflammation and the symptoms as well as the starting dose did. If you taper too soon, too fast or too far, the symptoms will return. Unfortunately many doctors are scared of pred and rush you to get to a low dose and the symptoms return.

Tell us a bit more about the start of your tapering - I'm sure someone here can explain what has happened and how to avoid it happening again. Pred is your friend - it will give you a far better QOL if used optimally.

[jennycat]

Thank you for your replies it has really made me feel more supported. I will be 60 in Feb. I started on 15 mg pred and after 10 days went down to 13.5 mg for a week then 12.5 mg for a week then 11 mg for a week. I have just gone down to 10 mg 3 days ago, and I have the pain across both shoulders and stiff fingers which is gradually building up. Like many on here I have always been pretty fit, running 5 k 4-5 times a week and circuit training. Over the last 6 months my running has reduced down to maybe one 3 k a week. Still doing about 10 000 steps a day walking but exercise has gone out of the window.

[PMRpro Ambassador in reply to jennycat]

10K steps is all the exercise you need - why does everyone think steps don't count as exercise????

That is an awfully fast reduction - I won't grace it with the word "taper". You need at least 3 weeks at the starting dose and no taper should really be faster than 1mg a month - because faster than that is predictive of a flare. Which I guess is what happened? When did the pain return?

[jennycat in reply to PMRpro]

it has been complicated by also getting a chest infection and my son, daughter in law and 2 and 5 Yr old grandchildren having been living with us over the last 5 weeks whilst their house is sorted which has resulted in a lot more work and less rest. The pain has returned over the last few days and also the fatigue. I also get headaches most days, not GCA type just top of the head. Visitors should go this weekend and then hopefully I can get things back on track.

[PMRpro Ambassador in reply to jennycat]

Don't rule out a top of the head headache as "not being GCA-type" - scalp pain is a typical GCA symptom. You come first now - you need rest to give the pred a chance and you need ENOUGH pred - and I doubt 10mg at this stage IS enough. Plus as DL has said, one week at a dose at ANY stage is a piece of nonsense, it can take a few weeks before the inflammation that isn't being dealt with each day builds up enough to be felt. You actually have no idea where it went wrong. So you really need to start all over again, as soon as possible, and do a sensible taper. Even the guidelines that are too fast give you 3 weeks at a dose!

And I'm adding to DL's lecture - YOU need to be in control, I get that, but control is taking the correct dose for what you need at present and acceptance is understanding that. You aren't "getting off" the medication - you are carefully titrating the dose to find the RIGHT dose for you. What would you say to the patient with hypertension who stopped their medication "because my BP is normal now"? It is exactly the same - this disorder can only be controlled, not cured.

[jennycat in reply to PMRpro]

thank you, I will slow down the tapering. I'm beginning to realise it's a long term thing not a race😀

[PMRpro Ambassador in reply to jennycat]

it is a race that the tortoise almost always wins!

[Fatsiajaponica in reply to jennycat]

Well JC, clearly the taper has been too fast and I am sorry that you are suffering again now. Given the rapidity it is hard to say where you should be going back up to, I will leave that for others who are more experienced but it looks like you need to increase the pred to a point where you are comfortable. Also you need to arm yourself with information and research to challenge whoever suggested this taper. @ DL and @PMRpro and others will join in and give you the info you need.

Many get off to this kind of start so don't worry, it will help you and the medics learn how to better manage the condition. Hope you feel better soon.

[DorsetLady PMRGCAuk volunteer in reply to jennycat]

As others have said much too fast a reduction - and one week at a dose is bonkers - you need at least 2, sometimes 3 weeks to know current dose is sufficient to control your disease before you drop to lower one.

Suggest you return to 15mg and start again.. at least 3 weeks at each dose, and reduce only 1mg a time..

Not sure where your taper was thought up, but it’s even more rapid than the one in the guidelines, which many find is too quick.

[jennycat in reply to DorsetLady]

one of my problems is I bring a competitive side into everything! If I can taper down fast I see it as a win, having to go back up is a fail 😕 This morning I have partially given in and taken 12.5 mg if this doesn't improve things I guess I'm going to have to try 15 mg and alter my attitude. I guess it is all part of accepting the diagnosis and not feeling like an imposter!

[DorsetLady PMRGCAuk volunteer in reply to jennycat]

It is accepting that it’s not you that is failing because you feel you aren’t reducing quickly enough. As a nurse you should know that any disease need the correct dose of meds to treat it! 😏

So please kick the mindset that Acceptance is giving in - it's actually taking control! And you aren’t an imposter..

Lecture over 😊

[jennycat in reply to DorsetLady]

You are right, I know all this and will take control

[EastMidsLass in reply to jennycat]

I know this is very difficult to accept, but you really must come back from that river in Africa (denial), it will drown you. This is one competition you will not win. You will however have many many triumphs along the way. Love and light ✨️

[Hugh_Marc in reply to jennycat]

Hi jenny. I’m 3 months in. My GP is very good but when he went off for a month a junior colleague reduced me quickly from 15mg to 12.5mg. This was too much to fast because all my pains came back.

The general consensus seems to be that reducing by 1mg at a time is better.

I’m now on 14mg & about to go to 13 mg.

Hope this helps.

[jennycat in reply to Hugh_Marc]

Thank you, I will try to reduce more slowly

[Naim1]

Hi. So sorry you are going through this.

I was diagnosed a year ago.

I have had relentless ' take more- take less' Pred & it has screwed me up.

My biggest issues has been extreme fatigue & cognitive issues.

Every time my pain has been brought under control following blood test that showed raised plasma viscosity., the tapering has been too much too quick as I was told ' the lower the dose, the better the fatigue & cognitive issues'.

Everytime I have had a flare...AND .... repeat!

Everytime my PV levels went through the roof.

Everytime I has said to my GP..." do not crash the pred....it needs to be slower"

Everytime I have been told " Ahh, yes, well, but...." 🤬🤬

All year GP has said " This is PMR".... and I am in total agreement....until late August this year....ANOTHER flare ANOTHER blood test...this time PV levels ' within range'

Was refused an increase in Pred- symptoms got worse...ANOTHER blood test & again PV levels ' within range'

Result?...GP now doubts it is PMR....Pred crashed from 10mg to 5mg....I begged... "NO WE MUST NOT DO THAT"

Reply " If your bloods are normal I doubt it is PMR...so don't want you on Pred....because if we raise your Pred it is highly likely it will take away the pain"

🤪🤪🤪🤪🤪🤪 🤪🤪

🤬🤬🤬🤬🤬🤬 🤬🤬

So I have had a tertible few months....so now all symptoms back as well as the extreme fatigue & cognitive issues & now no doubt my adrenals are struggling at 5mg.

I have now paid private to see a top rheumy next week.

So my bloods are currently showing as ' normal' but I still have PMR & now back to square one. 12 months down the toilet!

[PMRpro Ambassador in reply to Naim1]

I wish to goodness they could explain to me why they believe pred will take away all pain. I discussed it with Prof Mackie recently - pred ONLY relieves pain due to inflammation, nothing else. So if pred relieves the pain, there is inflammation - and the source must be identified, not claimed that pred is pain relief.

[Naim1 in reply to PMRpro]

Indeed.....everything I have learnt & all the information picked up from you good people, passed on to the GP & not taken on board. So frustrating.😩

[jennycat in reply to Naim1]

This sounds terrible. I'll be really interested in what your rheumatologist says next week. Good luck

[Naim1 in reply to jennycat]

Thanks 🙏.... I wish you well.

[Fatsiajaponica in reply to Naim1]

Wishing you all the luck for your rheumy appt.

[Countrykitten]

Yes..As far as my GP was concerned there was nothing wrong with me as no raised ESR..My Orthopaedic surgeon insisted I had PMR, (as did my Osteopath who initially asked GP to test me) He asked a Rheumy colleague to see me privately who confirmed that up to 20% sufferers have no raised markers. He started treating me and wrote to GP. It cost me money to get a diagnosis but if I hadn't I'd probably still be suffering untreated nearly three years on! .Good luck!

[Body_bonkers]

My bloods are also 'normal' and agree acceptance would be a lot easier if we were not repeatedly told by poorly educated doctors and specialists that it therefore cannot be PMR. If they've eliminated other possible causes and there has been 70% + improvement on steroids where painkillers have been pretty ineffective, then it probably is PMR. Seems very few are offered imaging which can also help with diagnosis.