New to this disease: Just diagnosed this morning... - PMRGCAuk

PMRGCAuk
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New to this disease

Dot-69
Dot-69

Just diagnosed this morning after raised infection markers in blood and extreme muscle pains since February. Is polymyalgia an auto immune disease? And can it cause nausea sometimes and an irritating kind of throat cough where you keep clearing your throat? All this will be uncharted waters for me. Thank you

103 Replies
oldestnewest

Welcome Dot 🌸

Sorry to hear your diagnosis, you are among friends here & we’ve had quite a few New Members recently, so that will be good for you to share your journey.

I’m an old hand, unfortunately & some of our Members will be along shortly to Guide you.

Please ask any questions you may have and please rest & give the Medication time to work, l’m presuming your Dr has started you on Prednisolone?

I’ll pop in later to catch up.

Kind Regards

MrsN

Dot-69
Dot-69 in reply to MrsNails

Hi, thank you for replying, yes prednisolone came today, seems I need to take them after breakfast so I'll start tomorrow. I thought it was a return of the M.E. I was diagnosed with back in the '90s, because I had a strange virus last January that started all this. I knew it was worse then the bouts of occasional M.E.

HeronNS
HeronNS in reply to Dot-69

I got my first tablets on an afternoon. I couldn't wait. I had my afternoon tea and took my 15 mg the moment I got back from the pharmacy. I did spend a couple of days moving the time back through the day until I got to the breakfast time slot but someone told me later I could just have taken my second dose that first morning at breakfast time.

Dot-69
Dot-69 in reply to HeronNS

That's interesting, the pharmacist said they can interfere with sleep, it was nearer 1pm when I got them so thought tomorrow will do. I have to take 20mg daily for 2 weeks, then 15mg for a week then 10mg for a further week followed by another blood test. I remembered you have to be weaned to a lower dose as I had them plus cortisone when I was 17, came out of hospital with a face like a full moon!!

HeronNS
HeronNS in reply to Dot-69

By the time I got my pred I didn't care about sleep - I wasn't getting much anyway as every time I moved in bed pain woke me up. But you are right, it is advised to take pred at breakfast time so you a) are having food and b) it's far enough from bedtime to not have an effect on sleep. So I'm really only saying you can take your first dose now (with food).

And I did sleep better from then on. When a few months later I learned about not taking pred and calcium together I switched my morning dose to bedtime (and a little yoghurt or kefir) and discovered calcium is a terrific sleep aid for me. I am no longer a lifelong intermittent insomniac!

Polypoly
Polypoly in reply to HeronNS

Hi there Heron, thanks for posting your info to help Dot-69 with her recent diagnosis of PMR, so sweet of you.

Dot will find much guidance here in the Forum and I wish her comfort in the fact that she has such friendly help.

I Post you here, as I have never seen any advice regarding not taking Pred and Calcium together?

I have had PMR for 25 years ongoing with just mild symptoms only now, just in my right bicep & shoulder, but can’t seem to ever get off Pred for more than 2 months before a recurring flare, hence my Doc’s plan to stay on a low dose for relatively safe control of symptoms.

That’s working fine.

I always take my (long term continuous) dose of 2.5 Prednisolone and one Accrete D3 (Calcium 600 mg/Colecalciferol 400 IU) together, with a Banana and a cuppa before rising daily.

My second Calcium/Vit D is taken without Pred at suppertime too.

I’d be pleased to hear your further comments on the recommended pred/calcium taking method.

Thank you 🙂 S.

HeronNS
HeronNS in reply to Polypoly

I didn't know either when I started pred, although I did find out about 3 months after starting pred. I found out from the forums. Neither the doctor nor the pharmacist alerted me. Both just said to take pred with food.

I seem to recall reading somewhere that the strongest effect pred has on our bones is in the early months of taking pred. Whether this is because our dose is highest then, or whether it means our body gradually adapts I don't know.

Polypoly
Polypoly in reply to HeronNS

Thank you for your info, I’ll ask my GP next time I’m in a state of collapse!

HeronNS
HeronNS in reply to Dot-69

I'd be very concerned about the 5 mg drops, especially the one from 15 to 10. To drop from 20 to 10 in three weeks seems precipitous to say the least. I started at 15 and stayed there for four weeks. As 20 is near the upper end of starting dose for PMR I suppose an earlier drop (after a fortnight) is going to be fine, but dropping from 15 to 10 after only one more week is a further 33% reduction, only half your starting dose after only three weeks. We have found that 10% at each taper is safer and less likely to lead to flares, and it is standard to stay on the starting dose for at least four weeks, some recommend six weeks.

Dot-69
Dot-69 in reply to HeronNS

Oh, the pharmacist and doc explained it all and it's printed out on the label because they are in 5mg packets and pharmacist told me to take all 4 in one dose for the first 2 weeks

diana1998
diana1998 in reply to Dot-69

I was on 30mg for 6 weeks and then dropped to 25mg. Had to drop very slowly as pain was horrendous. Don't drop too fast. Dr's, pharmacists etc all want us to drop fast and it doesn't work.

Dot-69
Dot-69 in reply to diana1998

That's odd isn't it, I looked it up yesterday and they do drop you faster for some problems or when it's a short sharp course it seems, I hope this doesn't cause more problems than I've already got.

PMRpro
PMRproAmbassador in reply to Dot-69

Most places will tell you about tapering pred doses for infections, asthma and other acute conditions. PMR/GCA are chronic conditions and the tapering is a process called titration - reducing the dose in small steps to identify the correct dose for YOU, not for Mrs Brown, Mr Green or whoever. And in the first 6 months you are likely to need much more than later on. A big problem is that if you overshoot and the patient develops a flare in their symptoms they may find it harder to get under control again, leading to a large dose of pred overall in the long term. We see it again and again.

Dot-69
Dot-69 in reply to PMRpro

Oh thank you, that's a bit worrying, you expect the medics and pharmacists to know what they are doing, would it depend on how long you've had PMR for?

PMRpro
PMRproAmbassador in reply to Dot-69

They haven't had PMR most of them. The lower the dose the smaller the drop should be: never more than 10% of the current dose maximum. And below 20mg many struggle with that.

HeronNS
HeronNS in reply to Dot-69

I don't think it matters how long you've had PMR. Dose is very individual, especially as we taper down from initial effective higher dose which is always going to be more than you need longterm. I think it depends a lot more on how efficiently your body metabolizes the pred. Some people need more simply because they are only utilising 50% of the dose. Others metabolise a larger percentage and tend to find it easier to taper, at least initially. Some people find their dose carries them through 24 hours, others find over time that they are better with splitting the dose. And you've no way of knowing ahead of time which camp you fall into. Follow instructions to begin. Eventually you will become the best expert on your particular manifestation of PMR. And the best doctors are the ones who are confident enough in their patient's good sense and allow them to tweak the tapering to manage their individual symptoms. I always ran things by my doctor, sort of along the lines of "What do you think of this" tapering plan, or whatever. "I'd like to try it as they way we've been doing things lately isn't working so well." Enlist your doctor as an ally. I was lucky because the doctor who finally diagnosed me and is now my GP told me right at the beginning that eventually I would have a lot to say about how the tapering would be managed.

Whitner
Whitner in reply to PMRpro

Which is what happened to me! I did a slow prednisone taper but when some symptoms returned, I should have stopped tapering and stayed on the dose that was working longer. I was down to 7 mg and had to go back to 15 mg before I got complete relief. Frustrating! Don’t do what I did.

Suffererc
Suffererc in reply to diana1998

When I was on 30 and told to drop to 25 I found it very painful. The next 5 drop I didn't do I halved it.

diana1998
diana1998 in reply to Suffererc

Yes, I did the same

ChinaWuntoo
ChinaWuntoo in reply to Dot-69

Someone doesn't know what they are talking about (you will hear that a lot here!). Pred. comes in a number of doses in UK. And you can cut them if they are the right sort. Otherwsie why would Professor Dasgupta advocate 2mg long term - you can hardly cut 5mg into 2mg! Try another pharmacist?

And I agree that if you have PMR you are being tapered far too fast.

My own experience (not unique) is that 6 hours after taking the first 20mg pill I was free of the excruciating pain - then I did too much.

I am prescribed 5 21/2. And 1 mg tabs. So I can mix and match

Dot-69
Dot-69 in reply to HeronNS

Maybe he's started me at 20mg because the CRP is 53 and ESR 48, reached those figures since January. I don't get that a lot of GPs don't seem that concerned with elevated CRP, surely we shouldn't have lots of infection in our bodies

HeronNS
HeronNS in reply to Dot-69

CRP and ESR measure inflammation.

Mi_49
Mi_49 in reply to Dot-69

Hello Dot, I’m just starting my PMR journey too. Your story is so similar to mine in that I had a mystery virus in January and was diagnosed with PMR on 1st May. My story differs in that I’m now being treated with 40mg Pred as I’ve had various head issues, possibly GCA but not definite. The Rheumatologist isn’t convinced but you can’t take chances. I hope you’re starting to feel some relief.

Weebaxter
Weebaxter in reply to Mi_49

Hi there and everyone else. My husband is still in limbo after 2 years btw we are in Australia. He had Glandular Fever 4yrs ago and had never been right since. He can hardly walk due to pain. He feels like he is getting the flu all the time. He has not worked for over one year and only 48. He struggles every day. He used to be a gym fanatic now he barely walks to end of street. We are at our wits end. Rheumatologist says ME CFS I keep thinking he has PMR. Any help would be awesome thank you

PMRpro
PMRproAmbassador in reply to Weebaxter

If this came on in his mid-40s after glandular fever then the ME CFS diagnosis is much more likely than PMR which is rare in under 50s although it does occur. Most rheumatologists will say that in a younger patient the likelihood of another diagnosis is much higher than one of PRM.

But if you want more opinions then I'm afraid you need to post this as a new thread - because of the way the forum works few people will see this response in the middle of a sub-thread in an existing thread.

Dot-69
Dot-69 in reply to Weebaxter

I'd agree with PMRpro because of his age and the fact it was glandular fever which is one of the known triggers for ME/CFS. I was diagnosed with ME in the '90s when I was in my 40s, it used to do different things, like caused slurred speech, or a kind of drunken walk, brain fog, fatigue like nothing you've ever known before, unable to lift up your arms as they felt like lead. I thought I had a relapse of the M.E. but it wasn't the same feelings, much more pain and rising CRP and ESR in the blood tests and I don't remember that happening with M.E. which is what prompted me to keep on at the docs and I finally got this PMR diagnoses. You will probably find loads of help on the M.E./CFS portion of this website, that's where I first began. I took evening primrose oil capsules for the M.E. which I'm convinced helped a lot. Hope you find help x. Oh bother! Now I'm not sure whether it was thyroid that brought me to this whole website!! I seem to have a big brain fog going on this morning 🙄. If there isn't a dedicated M.E./CFS portion there are Facebook groups that are very helpful too.

Weebaxter
Weebaxter in reply to Dot-69

Thank you for your reply I will look nto the ME posts just hard when there is not enough sympathy and understanding for the struggles with ME

PMRpro
PMRproAmbassador in reply to Weebaxter

Don't imagine it is significantly different with PMR. Especially when you are on corticosteroids and develop the round rosy cheeks! "But you LOOK so WELL!"

Dot-69
Dot-69 in reply to PMRpro

Very true. These are hidden illnesses, there are lots of them, lupus, sarcoidosis even forms of autism. I think there are badges etc available that inform people of that, one of our daughter's has Asperger's and a badge, takes the stress out of everything.

PMRpro
PMRproAmbassador in reply to Dot-69

Do people take notice?

Dot-69
Dot-69 in reply to PMRpro

Yes I think they do, she has a lanyard which is much more noticeable

Hi Dot and welcome.

Yes PMR is an autoimmune illness.

I don’t get nausea with it or the cough, but someone will be along to tell you I am sure.

All the best with your PMR

Dot-69
Dot-69 in reply to Koalajane

Thank you

Hi Dot. I’m less than a week ahead of you so can offer very little advice. But it seems we are not alone and this forum is really good.

I found I wanted to actually talk properly to a person who understood so rang the charity helpline. It was just what I needed and the volunteer I spoke to was really great.

I’ve been coughing a bit but never thought it was a connected symptom but who knows?

Take care and look after yourself.

Thank you for your reply, this is a really painful thing, I remember searching all the symptoms months ago when it first started and it ticked all the boxes. Hope you are feeling a bit better

I searched for all sorts of things but never came up with PMR

diana1998
diana1998 in reply to Dot-69

I knew I had pmr as my friend had it before me. But I was formally diagnosed in A&E. They gave me lots of Xrays and blood tests and I was there all day. Really thorough. But even the rheumie there expected me to drop far too fast for my body.

Hi Dot-69. Welcome. Yes. PMR is an auto immune disease. Am not aware of an irritating cough being associated specifically with PMR symptoms, but I could be wrong.

Nausea could be a reaction to new drugs. If you let us know what meds you have been prescribed it might help our 'expert' members to provide more informed support.

Meanwhile, you have joined a very active and supportive community by joining us. I am sure you will find it most useful throughout your PMR journey. The important message at this stage is to rest as much as you can, listen to your body. Get your head around taking life in the slower lane, even on the good days. Pacing is key. Best wishes.

Dot-69
Dot-69 in reply to Marilyn1959

Thank you for replying, the nausea has been coming and going along with loss of weight and appetite and all the muscle aches since February after I recovered from a really strange virus. My iron is apparently low so doctor started me on Ferrous Fumarate a couple of days ago, yesterday every cooking smell would start me gagging, today seems ok, long may it continue 😁

SnazzyD
SnazzyD in reply to Dot-69

Could that have been Covid?? Not everyone can get on with oral iron supplements, though I know the fumarate is supposed to be ‘kinder’ than the sulphate.

Cough could be early GCA which I had, Covid leftovers or certain bp meds.

Dot-69
Dot-69 in reply to SnazzyD

Well I wasn't going to mention covid in case people worry. But at least 2 medics, all the family and a neighbour all think it was covid. If the antibody test is rolled out to everyone who had symptoms I'd be interested in that

PMRpro
PMRproAmbassador in reply to Dot-69

It was my first thought I have to admit - even though it was January and the received wisdom is that is "too early".

Dot-69
Dot-69 in reply to PMRpro

I think they will discover it was here earlier than they thought

PMRpro
PMRproAmbassador in reply to Dot-69

Oh absolutely. My nurse daughter and her entire endoscopy department in Scotland went down with a "cold thing" brought back from Italy after xmas, one after another. Not Lombardy, NE of Venice. No-one was tested. There is evidence of it being spread in California in late November - someone caught something from a Chinese businessman and it spread though the entire family before one person was checked.

Dot-69
Dot-69 in reply to PMRpro

Very interesting. It's the way it's so contagious, if it's just a cold or a flu that's been round one or twice I'd have thought more people would be immune. I've got to have an endoscopy at some point, iron levels are low so consultant wants to have a look round! Not looking forward to that at all!!!

diana1998
diana1998 in reply to Dot-69

Ask for full light 0sedation then you won't know a thing about it! I came round after a couple of minutes.

Dot-69
Dot-69 in reply to diana1998

That's interesting thanks

diana1998
diana1998 in reply to Dot-69

Sorry, meant sedation of course!

Suffererc
Suffererc in reply to diana1998

What is that please

Peptink
Peptink in reply to Dot-69

I just read today that they are pretty sure it was already in Italy in December.

Constance13
Constance13 in reply to Peptink

They say "it started here" - "it started there" all the time. Everyone trying to put the blame on some place or another!!

PMRpro
PMRproAmbassador in reply to Constance13

It must have been in China long before December which is when the doctor noticed it and tried to warn people. Once it was there - say even as late as early November, people travelling could have taken it all over the world and one person gave it to a few on the plane, in the train, in the hotel. And it developed in a lot of places and in parallel.

Welcome,like you I am new to this forum.I started my journey in December last year strangely enough just after a supposed 24 hour noro virus bug that lasted four days.I also had my flu injection then and thought it might be connected to that.Since then I have given up looking for a connection as it drives me nuts.

I don't have the cough as such but when I cough/clear my throat something irritates it so spoke to my G.P. who couldn't find anything.Weird thing is that since starting medication,Fluconazole, for oral thrush it has eased up a lot.

As someone above says,one of the many more knowledgable members will be able to help. Take care.

Dot-69
Dot-69 in reply to yorkieme

Thank you for replying, that's interesting about the virus. This all began definitely after the January virus, dry cough that went on for weeks, low grade fever, husband had it first and shared 🙄 I got it worse followed by all this. And yes all the checking up, although it can be helpful, is exhausting and you begin to wonder if you have something even worse

PMRpro
PMRproAmbassador

I have PMR (as far as we know that is) but I do also have an almost permanent tickly cough and (sort of) post nasal drip. Cough and sort throat CAN be seen as a symptom in GCA - something I didn't know some 16 years ago when my journey started. I repeatedly asked my GP - he could see nothing.

Interested though in your ME in the 80s - I had something in my mid-20s that now would be diagnosed as ME, it ticks all the boxes. That resolved after about 4 years and then another few years later, in my mid-30s, I was put on HRT by my gynaecologist because he thought I was perimenopausal, with sweats and fatigue. I stayed on HRT until one scare too many persuaded me to stop but it was apparently not perimenopause - that didn't happen until I was 57 and shortly before I worked out what I had had for the last 5 years. The PMR symptoms had appeared a year or so after stopping HRT. Were they all connected?

Dot-69
Dot-69 in reply to PMRpro

I got the M.E. after truck loads of stress, it was the time it was being called yuppy flu and was all in your mind, I had a very good GP then who did lots of research and suggested evening primrose oil capsules which I'm sure helped. I've also got the pain points of FMS, in the end who knows what's what. Joining the dots is a nightmare

Meggsy
Meggsy in reply to PMRpro

Interesting about the cough and throat re possible link to GCA. I had both prior to PMR diagnosis and they persisted for quite a while. During the first twelve months of PMR I had a few things occurring around my head at different times - soft tender lumps on temples and scalp, tender spots on scalp, mildly painful jaw from joint to back teeth, fleeting shooting head pains. They would be gone the next day and I used to wonder whether GCA was trying to get a hold. Thankfully I haven’t experienced any of them for quite some time now.

PMRpro
PMRproAmbassador in reply to Meggsy

Sounds familiar - and there is a theory that GCA can start up but abort before it gets too bad.

Umufu
Umufu in reply to PMRpro

Yes, that is exactly what happened to me. PMR started in March 2018 but refused prednisolone, in May same year had shooting pains both side of head that came and went for a couple of months and responded to ibuprofen 200mg mornings and evenings. Until the Great Showdown in February 2019 with 4 episodes of dark curtain coming down on my rt eye

Ophthalmologist sent me off with a list of procedures to be done and since then I have joined the pred journey starting with 60mg.

I have been doing quite well and was pain free until i got to 10mg, when Rheumy phoned with instructions to taper down 1mg per month.

Having read and learned so much on this forum I tapered only 0.5 mg but had to pay for it when reaching 8.5. Back to 12 and trying all over again.

Here is my question : why do some of us listen to the doctors when we know that is not right for us? Is it my age? 80+, I belong to the generation that was still whipped in school...

Sorry about my long epistle...I don’t write often but am a keen reader and appreciate all the good work of you wonderful people. It has helped me so very much. Thank you all and stay well.

Sigrid

PMRpro
PMRproAmbassador in reply to Umufu

No idea to be honest - although your generation probably still has more faith in the medical degree! I went to med school to do my degree - I saw them getting drunk. They are humans too even if some have delusions of grandeur ;)

Umufu
Umufu in reply to PMRpro

Yes, true, some of them, I come from a family of doctors, father, brother, husband, son... so if I continue doing it My Own Way what is the worst that The Establishment can do to me? Am in their bad books already for refusing statins, AA. Biopsy after weeks on steroids...oh dear!

PMRpro
PMRproAmbassador in reply to Umufu

Well you are condemned aren't you!! Like me ,,, ;)

Umufu
Umufu in reply to PMRpro

🙉

Welcome Dot. I also had a coughing virus late January through Feb. Coughed for 3 to 4 weeks. Husband also. There were no identified cases in Australia at that time but it was before closed borders and there were lots of international visitors. Wondered about Covid.

With regard to PMR, I developed a croaky voice and the throat clearing thing during the 5 months prior to diagnosis when my PMR symptoms were gathering. My singing voice was also affected. Also, when eating I would often have a fit of coughing with food/saliva going down the wrong way. Two and a bit years down the track and thankfully that has all gone. 🌻

PMRpro
PMRproAmbassador in reply to Meggsy

Have you ever discussed that with your doctors? There are quite a few of us with the sore throat/voice problems/choking on food - but I never see it mentioned under symptoms.

Dot-69
Dot-69 in reply to PMRpro

No I didn't think to mention it, these phone consultations are all very well but they don't really take long enough, I guess all the medics are under lots of pressure right now, if it's still happening I'll tell him at the end these steroids

I get any sort of consultation and I’m so grateful I try to make it really quick. I guess it comes from not wanting to waste their time especially now with COVID. But I found it really useful to write a list of everything to ask. Ticked them off as the doc mentioned them and then I raised most remaining ones.

PMRpro
PMRproAmbassador in reply to Dot-69

Have you ever had a f2f appointment? I was rushed out the door in well under half an hour with the first one - the second took a bit longer as it comprised a repeat of the first with a different doctor plus a short audience with himself because the other guy (a GP with a special interest) hadn't a clue. I suppose at least he admitted it!

In contrast, here my first appointment with the rheumy was an hour. And ANY appointment is half an hour.

Meggsy
Meggsy in reply to PMRpro

No, I have never mentioned these things, I probably should have. Even though they seem to have abated I will mention them to my GP on the next visit, if only to add to his own information on the condition.

Dot-69
Dot-69 in reply to Meggsy

Interesting. I took some cough mixture which seemed to go down the wrong way, coughed for ages. Are you a professional vocalist?

Meggsy
Meggsy in reply to Dot-69

No, just love to sing. I love singing in choirs. My siblings all have lovely voices.

Dot-69
Dot-69 in reply to Meggsy

Wonderful. Music is good for the soul 😁. One of our daughters is a professional singer.

Whitner
Whitner in reply to Meggsy

I too had what I thought was a dry throat that affected my singing voice and talking voice. I can’t remember if it was before or after prednisone. Always so interesting reading about everyone’s experiences.

It is auto immune disease - not sure about the cough

None of us are happy to be diagnosed with PMR, I am 2 years down the track and am feeling somewhat better and not been on Prednisolone for 6 months.

The problem with mosts drugs is that they damage your stomach biome making it difficult for you to absorb any of the elements you need for healthiness. As it is an Inflammatory disease I would look at taking as out as many inflammatory foods as you can out of your diet - Gluten, Dairy and Sugar (especially refined sugar). It may not cure you but I believe that something triggered the problem and Prednisolone is not a cure. It is often said that we are what we eat.

Look at keeping your gut biome healthy so that when you are given iron supplements, the iron is actually absorbed by your body. Eating healthily cannot be a bad thing!

Good luck.

Hildalew
Hildalew in reply to Bignorhill

Can I just put in a 'plug' for natural, live yoghurt. I know it's 'dairy' but I believe it protects, and supplements the good things that protect the stomach.

I will just mention that I have found that my system is intolerant of the cow's milk yoghurt that I have eaten and I eat only yoghurt which doesn't come from cows. I have only recently realised that this category could include 'real' Greek yoghurt, which I understand is made from goat's milk. (I don't know whether the yoghurts made from vegetable or fruit milk have the same level of protective bacilli as the animal-based ones.)

HeronNS
HeronNS in reply to Hildalew

Label shoould be a good guide. Recently a local business developed a drink from kefir which they call Cultured Coconut, especially to avoid use of dairy, and it is so powerful you only need a tablespoon a day! We started using it after my husband had to take a heavy duty antibiotic. Although I think this product is unique, you may find something similar in your neck of the woods.

Best wishes for your recovery Dot, I’m sure with the Pred you will soon feel more comfortable.

All here will testify the relief is so welcome, and I hope you hang in there and get back to normal life without pain.

This Kind forum will assist greatly.

Good luck, x S.

Dot-69
Dot-69 in reply to Polypoly

Thank you very much

Hello Dot and welcome from me, also a relative newbie as I was diagnosed in February 2020 and joined the forum a month later. I’ve found the forum to be a great source of information.

I started on 15mg of Prednisolone daily and as others have said it was like a miracle in relieving symptoms. I was advised to reduce the dosage after a month and blood tests that showed greatly reduced inflammatory markers However a month later after another blood tests the GP rang me to suggest that I stayed at 13mg for at least another 4-6weeks as the markers had elevated again. This I did and am now tapering by 1mg per month and so far feel fine. I’m just glad I’ve got a supportive GP practice who appear to take note of individual symptoms and reactions.

Good luck on this PMR journey.

Dot-69
Dot-69 in reply to bluebeam

Thank you. May I ask what your markers were when you started treatment?

bluebeam
bluebeam in reply to Dot-69

Hello Dot-69

I can’t remember exactly The levels and our online system at the surgery is currently down while the practice merges with another so I can’t check, but ESR was around the 100 mm/h level and CRP was approx 90mg/l. Within a week they had dropped a great deal especially the CRP which GP said indicated the the steroid was working and PMR was a definite diagnosis. After 3 weeks they were approaching normal levels but then after beginning to taper towards 13mg of prednisolone they rose sharply up to 45+. So GP called to say go back up to 14mg for 3-4 weeks. Re do bloods. If ok then drop by 1mg every 4-6 weeks but blood test each time before tapering.

So far so good and I’ve just started 12mg per day. My fingers are firmly crossed!!

Dot-69
Dot-69 in reply to bluebeam

Very high numbers, and your experience seems to bear out what others have said about slow decreases. I think mine began in February, that's when all the pains started and the CRP was 9, test last week was 53 and ESR 48 I wrote to them as I wasn't happy just being left, fortunately got results. Hope you stay well

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

You’ve had lots of good advice, but this might give you a bit more info -

healthunlocked.com/pmrgcauk...

Dot-69
Dot-69 in reply to DorsetLady

That was a very informative read, thank you for the link. I'll likely have trouble pacing! But what's got to be done, has to be done.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Dot-69

We all have trouble pacing! - but it has to be done.

Welcome Dot-69. As you’ve quickly seen this is a wonderful forum with some good information from great people. I too hope you start feeling better soon. I started on 20 mg on October 2019 and felt huge relief after about 4 days. I tapered to 7 mg by Early June but shouldn’t have ignored the return of some symptoms at 7.5 mg. Because I continued to taper, my symptoms returned and I had to go back to 15 mg to get relief which is where I am now. My advice is to take it slow and listen to your body.

Dot-69
Dot-69 in reply to Whitner

Thought I'd post an update as everyone has been so helpful. Began June 19 on 20mg prednisolone, few hours after that first dose most pains had gone. First 2 weeks were on 20mg then supposed to drop to 15mg for 1 week and 10mg for 1week. But I decided to drop more slowly by cutting tablets in half. So far so good, I'll do 3 days on 12.5 mg before dropping to 10mg for the last week, then got to have another blood test. There's no pain. Feel a bit more tired than on the high dose, but I'm doing more (while trying hard to pace!!!) Been getting a few palpitations don't know if that's connected or not. And at least I'm eating properly and no nausea! Yay!

Good to hear your progress. I’m only three weeks in and still on 15mg. Reading Kate Gilbert’s book. Cut out most processed carbs. Next job is to read about tapering. I’m loving this forum for all the advice.

Dot, good idea to taper slowly. If I understand your post, you are dropping weekly? I have been dropping monthly although I did do the big drop you describe (from initial 20 mg the first week to 15 mg for the next few weeks). Keep up the good work and I too would recommend Kate Gilbert's book which is available on Amazon, really helpful!

Dot-69
Dot-69 in reply to Whitner

Weekly drops now but the first 2 weeks were at 20mg. Trouble was from Jan to half way through June I had a virus, a UTI, now this, lost all my muscles as I had nausea and had to force myself to eat. I think it's going to take some time to build up again and I'm not really sure what a relapse of PMR is like if it hits. I want to be cautious. Yes I'll get that book you mentioned, everything helps.

PMRpro
PMRproAmbassador in reply to Dot-69

A relapse that is ignored will take you back to where you were at the outset - and it is often harder to get under control again.

I had my first relapse Dot which I am still in the midst of. I got Dow to 7.5 mg of prednisone tapering from 20 mg in October 2019 to 7 mg in May. When I was on 7.5 mg I noticed pain in my shoulders and some stiffness in my hips and thighs and pain in the fingers of my right hand all which I ignored and continued to reduce to 7 mg.....not a good idea. At 7 mg I also had stiffness in my jaw and the shoulder pain was so bad I could not sleep. It wasn’t until I went back up to 15 mg that the pain was under control. I have been at 15 mg for a month and will soon decrease to 13 mg for another month. My advice is take it slow and get plenty of rest.

Dot-69
Dot-69 in reply to Whitner

That's very interesting. I was doing the dose more gradually than the doc said and began getting very raised veins in arms and hands, then a touch of phlebitis in a small area on upper leg. Was right down to a low dose, didn't know if it was too low and causing this or if the steroids were somehow causing it, I stopped the steroids, few days later awful palpitations and jump hear beats happened, was out of a 12hr monitor, everything normal! Then 2 nights in a row suddenly very cold and shivering, took 2 paracetamol, loads of sweating, temp went up to almost 38 then back to normal. Didn't feel very well for the past several days, slight nausea, not hungry, few aches, so I decided to go back to the beginning and take 20mg again. Hope I'm doing it right, I'm still not familiar with all this really! I'm now going to send for the book that was advised.

PMRpro
PMRproAmbassador in reply to Dot-69

You must never stop steroids suddenly - what dose were you at when you stopped? What you describe could have been an adrenal crisis - how long have you been on pred?

But I am very concerned about what you are doing with your pred dose without medical supervision.

Dot-69
Dot-69 in reply to PMRpro

Started June 19th at 20mg. for 2 weeks, then prescription said drop to 15mg for a week, then 10mg for a week. But popular opinion here was those drops were too fast so I dropped a bit slower, then got palpitations, rang doc next prescription is 3 tablets daily for 2 weeks, two and half for weeks 3 and 4 then reduce to 2 tablets daily which I did. Going to 2 tablets was worse, so was my body producing all it needed and the steroids were causing an overload, or did I need to go up a bit. No idea. Too new to all this. Was ok on 4 tablets per day

PMRpro
PMRproAmbassador in reply to Dot-69

That is absolutely NOT the way to manage PMR - it is a long term illness, it will last 2 years if you are lucky, longer if you are not. You need to start at 20mg for a month, then start to reduce. You might manage to drop straight to 15mg but not everyone does so 17.5mg is better and then you stay at that for a month. Then you reduce 2.5mg and stay at each new dose for a month. until you get to 10mg, IF you get to 10mg. Then each reduction should be 1mg at a time - and stay on the dose for a month.

What was "worse" at 2 tablets - it is really much easier and less confusing to know your dose in milligrams, mg. Your tablets are 5mg.

The pred is acting as an antiinflammatory medicine - your body isn't producing it.

If your doctor doesn't know how to manage PMR then they need to read this:

rcpe.ac.uk/sites/default/fi...

which is one of the better expert approaches to looking after patients with PMR.

Dot-69
Dot-69 in reply to PMRpro

I'll have a read of the above later. Thanks. 2 tablets, or 10mg palpitations and uneven heart beats, that's why the 12hr monitor.

PMRpro
PMRproAmbassador in reply to Dot-69

And did you have palpitations while on the monitor? If not - it is meaningless.

I developed palpitations about the same time as the PMR symptoms appeared, not often and not long each time, but over the 5 years I wasn't diagnosed they got worse, though they did improve when I finally was put on pred. Sometime later I was diagnosed with atrial fibrillation (a/f), it was treated and I realised the palpitations had gone. The cardiologist is confident that it was due to the autoimmune part of the PMR and that the pred now manages the inflammation which makes the a/f worse.

If pred causes palpitations (and it can) then they tend to be worse at higher doses, improving as you take less pred.

Dot-69
Dot-69 in reply to PMRpro

Yes I did have palpitations on the monitor but don't know if they were too faint or too quick to register. Sorry about your A/F so pleased they eventually got it sorted. The pains I had this morning have gone, that's encouraging. And in part way through reading the link which is very interesting.

So...... Started feeling somewhat zonked and hands a bit shaky, and palpitations, no pains though, but I rang doc he's given me more prednisolone as I only had a months worth to begin, I reduced slower than the doc suggested but is this caused by a reduction in dose? I was feeling fine on the starting dose of 20mg. Thank you for all your suggestions and experience

PMRpro
PMRproAmbassador in reply to Dot-69

Oh right - starting at 20mg you need to taper slowly from there - 2mg per month at most down to 10mg. PMR isn't something where you take a dose of pred and taper off and it is gone. I'm afraid it is a chronic illness which lasts years, not weeks or months.

Was your doctor using the pred dose as part of his diagnosis for PMR? i.e. taking it for a short time and stopping it to see if the PMR symptoms resolved fairly quickly and then returned when you stopped it?

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