What is feeling normal

[mad-country-lover]

This is my first post, so I hope not to chapter and verse ..

After a stressful year followed by a trip to the UK where I caught what I thought was a cold the end of September ,2 days later I had flu symptoms and could barely use the muscles in my legs , GP prescribed anti-inflammatory meds and a blood test …. Blood test could not be taken unless I stopped the anti-inflammatory meds for 5 days Which meant I could barely walk? .

Blood tests results were dreadful (normal white count here is 10-45) mine came back at 275. My first appointment with the rheumatologist was on 5th of December, she diagnosed PMR and prescribed 15 mg Prednisone , she wanted another blood test taken 5 days after the last anti-inflammatory that I had been taking for 2 months and before starting the Preds.. That was barbaric I did not think I would see 2019.

I had another blood test before my 2nd appointment with her on the 15thof January the blood results were amazing white count had gone down to 49.9, But I was still in pain which does not ease off after moving around, there were still so many things I can’t not do for myself, so the Preds were increased to 20 mg per day, and was told I would be feeling normal in a week or so. That was ten days ago. The ground glass feeling in my hip and arm joints are better, I still have the stinging type pain in my hips and arms, that feels like acid is being poured into my muscles . I am walking for 15-20 mins on good days; I still can’t touch past my knees.

I know everyone is different… My question is apart from the side effects of the Preds. do all symptoms ( should all symptoms ) of PMR go , before tapering off the meds .

I have learnt so much reading your posts and had a good chuckle on my naff days, I love the humour. x

[PMRpro Ambassador]

Welxome to the club no-one wants to join!

No - you may have the wrong end of the stick I fear: all pred does is manage the symptoms of an underlying autoimmune disorder, It doesn't cure anything, it only manages the inflammation. First you take a higher dose to clear out the inflammation and then you taper the dose to find the lowest dose that manages the symptoms as well as the starting dose did, that was your guide. Some people get pretty much free from pain, others don't. There is no way to forecast which you will be.

But I'm a bit mystified: it isn't usual to go by the white cell count in diagnosis, that rises in an infection and PMR isn't an infection although white cell count may be slightly raised. And you seem to suggest that NSAIDs helped - which is also unusual in most people. ESR and CRP are the diagnostic blood markers in PMR. Do you know what they were?

[mad-country-lover in reply to PMRpro]

Hi PMRpro

I started off with stiff muscles in my legs, DR prescribed Celecoxib 2 days later I felt good, until I stopped them for the blood test

first blood test came back ( this is French I have tried to translate the high readings)

Leucocytes 10.28 ( 6 months before 3.78)

polynucleotides neutrophil 7.083 ( 6 months before 55.2 )

Monocytes 0.750 ( 6 months before 7.4 )

urique acid 145 ( 6 months before 165 ) that went down

white cell 270 ( 6 months before 47.6 )

GP said it all pointed towards a rheumatic problem but had to be diagnosed by a specialist

so I went back on the anti inflamatories for 2 months before my appointment with the rheumatologist .

who prescribed the 15mg preds and said I would feel much better in a couple of days ????

I am now on 20 mg and am getting around but with difficulty, the Rheumatologist seems to think I should be feeling normal blood tests results are good.

I have my next appointment with the rheumatologist the end of March.

I have just read some more posts on here and did not realise that the problem stays with you the meds just clear the infection, this answers quite a lot of my questions , ie I have a feeling not well day or two then it feels like a new area has been targeted.

There is so much to learn

thank you for your support x

[SnazzyD in reply to mad-country-lover]

Hello, just read your reply. I think you’re getting infection and inflammation confused. Perhaps it was a typo. What Pred does is clear inflammation, not infection which is the proliferation of an agent like bacteria. The inflammation with PMR is from the body’s immune system attacking its own body’s tissues as if it were an infection. There are some theories that it is triggered by infection, making the immune system go haywire and it doesn’t know who is the enemy. Raised white cell count may be due to concurrent infection going on as well. There are lots of autoimmune conditions where different specific areas are attacked that aren’t PMR. It’s all a bit of a minefield.

[mad-country-lover in reply to SnazzyD]

Hi SnazzyD

The infection levels in my first blood test were correct . I was told by my GP and the Rheumatologist that it is all part of PMR , I knew no different until posting this.

My infection levels have gone right down to near normal.

But I certainly will be asking more questions at my next appointment in March.

This is really a mine field

and i'm so lucky to have found this group

[SnazzyD in reply to mad-country-lover]

The usual blood tests they use are called ESR and CRP which are for inflammation. If they are raised, the docs like to see them go down to normal because that means the Pred is keeping it at bay. If it’s white cells you mean, they can go up with infection. Not everybody gets raised levels of any of these with PMR.

[mad-country-lover in reply to SnazzyD]

Hi SnazzyD

Yes it is white cell count, here in France mine was 55.2 last year, the new count came back at 783 last December, January's they are back down to 47

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

It is not an infection - inflammation comes from other things as well. That is what the blood markers are showing,

[HeronNS in reply to mad-country-lover]

Pred doesn't "clear the infection" - it clears inflammation.

[mad-country-lover in reply to HeronNS]

I now understand that due to the information I have here, but did not at the time.

And just assumed it was all part of PMR

[SnazzyD in reply to mad-country-lover]

The tricky bit with all these bloods tests is that they don’t tell you exactly what is doing it, just that something is. The symptoms are then used to narrow down the likely cause and the trouble is when different conditions have pain, so then the pattern and location of pain is looked at. Still, sometimes it isn’t obvious.

[piglette]

What is strange is that I think you are saying that the anti inflammatories were working really well. I assume they were not pred. It is very unusual for anything to have much affect on PMR apart from pred.

[mad-country-lover in reply to piglette]

The anti-inflamatories worked when I first took them, stopping them abruptly before the first blood tests sent my condition into over drive. this is one huge learning curve, I had never heard of PMR before. . I am also having a DNA blood test next week so perhaps something else might show up on that. I know every one is different but most here seem to say the are more stiff in the mornings , mine gets worse the more I do which is confusing.

[piglette in reply to mad-country-lover]

Hopefully the DNA blood test will come up with a clearer picture. I had never heard of PMR either until I got it. I remember reading about it on Dr Google and trying to convince myself that I did not have it. My useless GP did not diagnose it, I even asked him if it could be PMR, I had to go privately to a rheumatologist in the end.

[mad-country-lover in reply to piglette]

The anti inflamatories worked when I first took them back in September for the stiff leg muscles, when I stopped them everything escalated .

[SheffieldJane]

What a perfect description. My pain did all go, it felt miraculous, and I stayed on my start dose,20 mgs, for about two months. I tapered down really slowly, stopping at the first sign of pain. It has been almost 3 years I am at 6 mgs. Fatigue is my main problem. I think you may need 25 mgs, PMR responds badly to pussy footing around.

[PMRpro Ambassador in reply to SheffieldJane]

Yes, but your pain went with pred - as I understand what MCL is saying the pain went with Celecoxib, which is a COX-2 selective NSAID, and doesn't usually help a lot in PMR. It DOES work for inflammatory arthritis. And a raised white cell count is also found in about a quarter of rheumatoid arthritis patients.

[mad-country-lover]

Sheffieldjane

That is a good way of putting it ( pussy footing and messing around ) I think if treatment was quicker for me It would never have got as bad as it did, I wish I had seen a private rheumatologist to begin with, it just never entered my head I felt to ill at the time.

[SheffieldJane in reply to mad-country-lover]

There is no guarantee you’d get a wise one, they are thin on the ground. If it is PMR, it’s like a baby and likes a fairly regular, predictable, routine in its management. I do heed PMRPro’s advice though. She’s consistently on the right track. My first thoughts were exactly as you say.

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

In case you don't see my reply to SJ:

... [her] pain went with pred - as I understand what [you] are saying the pain went with Celecoxib, which is a COX-2 selective NSAID, and doesn't usually help a lot in PMR. It DOES work for inflammatory arthritis. And a raised white cell count is also found in about a quarter of rheumatoid arthritis patients.

I'm really not entirely convinced by the rheumy's thought process - unless she is using pred to rule PMR in or out or just hoping to give you some relief from the pain while she does more tests. The length of time you have had PMR doesn't stop a good response to pred - I'd had it for 5 years without treatment and in less than 6 hours after taking 15mg I could move freely and a lot of the pain had gone. However - if she is doing a "DNA blood test" it sounds as if she may not convinced either. I assume you mean an anti-dsDNA test which is done if lupus is suspected.

[piglette in reply to mad-country-lover]

I went to see a rheumy privately at the beginning, mainly because my GP kept saying I had a virus, which seemed to go on for months. The rheumy was not that great but at least he diagnosed PMR and gave me pred.

[mad-country-lover]

After I stopped taking the anti-inflamatories the first time ( in preparation for the first blood test) they only worked around 35% when re starting them again, specialist said they clearly do nothing . The DNA test as I understand it is looking for another hereditary factor. When I get the results of that ( they are posted direct to us) I will be making another Rhumatologist appointment. He is private and speaks English, I think a clearer understanding is needed. The woman I see at the moment ( A) looks like Roland Rat .. and (B) behaves like one and has no time for my franglaise oo la la

[JMTS]

I really sympathize with you I know what you are going through but I still don't really know what it is really wrong with me - Don't let any doctor prescribe you Prednisone or Anti Depressants both are very addictive - My cousin has taken Prednisone for well over 30 years and she cannot get off it as all her symptoms come back. I tried to tell her but she didn't listen. she has tried numerous times - even got down to a quarter of a tablet but it always flares up again. My Aunt was a Matron at a Mental Hospital for many years and she told me once never ever let a doctor prescribe you Anti depressants as she had seen so many people go into the hospital where she worked over the years addicted to them. When you go to the doctor and they offer you tablets for your complaints you should always ask them what side effects will you have from them or can you become addicted. Oxygen is very good for the blood it cleanses it but the doctors where I am are not allowed to prescribe it unless you have bronchial problems which is interesting. It is something in your system that is causing all your problems and tablets are just a short fix for pain they will not cure it.

[PMRpro Ambassador in reply to JMTS]

Pred is NOT addictive - and if you need it to manage the symptoms of an illness then you need it. And that applies to almost every single person on this forum. Without pred we would not have a life at all, potentially being in a wheelchair, and for those with GCA without pred they would very likely be blind. No side effect of pred compares to the ultimate adverse effect of GCA, being totally blind - and then there is the possible damage to arteries including the aorta and potential risk of stroke, even death. If you don't believe me, there are several on the forum who have lost their sight in one eye, there are posts from several family members whose relative is totally blind because their GCA wasn't diagnosed in time and they weren't put on pred.

I have no objection to anyone complaining about the side effects of pred - but what you are saying is totally inaccurate.

[Asbeck in reply to PMRpro]

(NRR_No Response Required) Amen to the Pred. being absolutely necessary for GCA and/or PMR. Well said. Clearly said. I don't know why we resist it.

You and this Website have helped me a lot. Thank you PMRpro.

I am resigned. I need it. (Pred.). That's it in a nutshell. I absolutely have to have it. But down to 4.75 mg. After 5 years it does mess with the HPA "thing," which sucks. Maybe this is what JMTS meant by "addiction." But, as for me, I accept my need for Pred. I can see relatively well, move, go out some, travel, think clearly, etc., and the (many) eye doctors at Bascom Palmer Eye Institute are "letting me go." Now I'm only seeing a (wonderful) Rheumy. This is a good thing. Hopefully that study about a 6 year average, or mean, or whatever it was telling us that many of us will be free of these diseases in 6 years will apply to me. If not, then "some Pred." is my mantra. I'm too far along to risk Acetemra (or however you spell it).

Thank you again.

[Yellowbluebell in reply to PMRpro]

I am sick of hearing that pred is the bad guy! It is the only drug that works on pmr, end of!! Yes it has side effects but most drugs have some and I for one would rather have pred amd live with the side effects than the pain of.pmr.

[mad-country-lover in reply to JMTS]

Hi JMTS

I have never been a pill popping person, I can count on one hand the amount of time's I have had to take antibiotics and only when I have felt it necessary. I have always been a firm believer in alternative therapies , essential oils , meditation etc etc . I live in the middle of no where with forest all around me I get more fresh air in a day then most unfortunate people get in a month, I eat properly etc... But I knew when this condition took hold I so needed the preds and for the first time in my life regardless of any side effects ……

Depression can affect us all at any time in our lives, I have been through a spot of it following different events in my life. divorce, moving country's on my own, the loss of my second husband etc...

My sense of humour has always pulled me through, washed down with a couple of homoeopathic tranquillity pips , since October I have been sucking a couple of them per day, because I have realised you do get low times with this condition , I think it is an individual thing as to how low we allow ourselves to get.

It is going to be a hard road but, Information, positivity and humour I think will play a big part .

[piglette in reply to JMTS]

Who on earth told you that prednisone was addictive? I suggest you tell them that they are wrong.

[HeronNS in reply to JMTS]

Prednisone isn't addictive, but we are dependent on it. If we stop taking pred while PMR is still active we will have a return of symptoms. It can be difficult to taper because we get what is called "pred withdrawal" but it isn't withdrawal because we're addicted, only a reaction while our body adjusts to the lower level. We never "crave" pred. That's why we recommend very slow tapering. We only remain dependent on pred while the disease is active. Once it goes into true remission (between two and six years, usually) we have no need or desire for pred.

[JMTS]

I am very sorry if I have upset people on this website regarding Prednisone - I am only going on what has happened to my cousin otherwise I would not have mentioned it as I feel for people that are suffering as I know only too well what they are going through. especially when Doctors can not diagnose what is wrong with you. It gets frustrating at times especially when they write out a script for a quick fix.

You can take my reply off that I have written to Mad Country Lover - I don't mind

[PMRpro Ambassador in reply to JMTS]

Only you can take off your post - we can't.

You haven't upset me - can't speak for anyone else though - but on this forum you will find almost all of us are quite accepting of the pred as it allows us a life. It isn't a quick fix, it is the only fix. Many people arrive swearing they will never take pred, seeking other ways of dealing with the disability of PMR. Within a few months they are singing a different tune.

You have your beliefs, if you don't want to take pred, that is fine by me. But I had 5 years of PMR without pred and I have no desire to go back there ever. Now I have a fairly normal and relatively pain-free life. I may well be like your cousin. I struggle to get below 10mg for long even after 14 years of PMR. I'd rather have 20 years of later life that are reasonably comfortable than 30 that are hell on earth. Life in constant pain is no life.

[mad-country-lover in reply to JMTS]

JMTS

You have not upset me either, every one has thire own opinion , My experience so far has been totally different and as PMPro said, I just could never have done with out them... even though for me they are not fully controlling the symptom's

[GOOD_GRIEF in reply to JMTS]

I'm not upset. You just don't know what you're talking about.

People with PMR/GCA need pred to treat their condition. There is no other effective treatment. Left untreated, these conditions can progress to blindness, stroke, and cardio-vascular disease. Long before these life altering and life-threatening consequences occur, very early in the course of our illness, many of us are so severely effected that we cannot walk, bathe, dress or toilet ourselves, brush our teeth, comb our hair, feed ourselves or raise a glass of water.

People suffering from chronic depression need anti-depressants. These also may not change the underlying condition but treat the symptoms, which without treatment can progress and result in life threatening or life ending consequences.

We're treating our conditions with the best modern medicine has to offer. Without these treatments, we become disabled because we are ill. Our treatment gives us the ability to live as much of a normal life as possible within the limitations imposed by our conditions.

These are not recreational drugs. We are not having fun. We are not partying. We are not addicts. We are ill.

If you are unable or unwilling to learn more, then at least refrain from making judgemental statements.

You're not helping anyone.

[PMRCanada]

Welcome to the forum mad-country-lover (love your name). Sounds like you've been through the wringer having to stop medication to get your blood work done. I remember well the 5.5 months I had PMR symptoms but not definitive diagnosis. There are a number of auto immune conditions that seem to have overlapping symptoms. I hope the continued tests shed more light on a definitive diagnosis.

I will share that I started on 20mg of pred on May 1/18 and experienced about 80% relief within 24 hours. Prior to diagnosis I was on 1000mg of an anti-inflammatory (Naproxen) for 5 months and it hardly touched the pain and stiffness.

If you're still experiencing pain/stiffness, I would not begin tapering pred. I stayed at my initial dose for 3 week, and fearful of pred side effects, asked my GP if I could start tapering (he wanted me to stay at that dose for at least a month to mop up all of the inflammation that had built up).

I do hope things go smoothly for you, and feel free to post on here anytime. My experience with this forum has been wonderful given the compassionate, informed, humourous folks. We understand what you're going through more than most others, given our lived experience with PMR/GCA.

[mad-country-lover in reply to PMRCanada]

Good morning PMRCanada

I am Mad by name and a bit Mad by nature.

This malarkey has been a shock to the system after years of being extremely active, I am 64 now , when I was 50 I popped over to France for a couple of months for some time out after an unpleasant divorce . 2 months later I made the decision to stay here ( just for a while ) so brought an uninhabitable property and renovated it my self ( I had spent most of my life sitting behind a desk while in the UK ) My daughters thought I was start raving mad at the time. any way that lead on to taking on renovation projects, decorating , tiling etc 3 years ago I was also managing 4 Gites , initially doing most my self ??due to age wear and tear the old aches and pains creep in, each year I was doing less . Its looking back now I think something has been creeping in , I know I have a good pain threshold due to last years malarkeys, what I though was an age related shoulder problem was a birth defect after a scan revealed my shoulder cups were not smooth and had long ago cut through both tendons that run between the cup and arm bone, the tendons had wrapped themselves around the muscles in by arm band..... so it was not a problem with every ones petrol mowers not starting after all. I had one arm done back in February last year.. the other one can stay as it is its less painful.

so since then a few things have crept in and the Mrs jack of all trades retired from manual labour.

Finding this group has been so informative, I did not fully understand what PMR is or how the Preds work the information has been in valuable , and its a lovely cheery place to be with people that understand each other and share thire experiences and information.

I am finding friends asking are you still taking the steroids .. never mind in a week or so you will be fine.

Or this one made me laugh , I got an email from the UK, ( Have seen cheep flights so about to book them as you must be better by now ?????) My reply was … I cant say at the moment what I will be like in two months time, but I know you can put up with what ever tips up so take advantage of the flight price …..... Hopefully I wont need toilet assistance in two months time and might be wearing underwear by then..... well that got rid of the first holiday maker of the year.

Take care all xx