Pmr

[Tarzan2]

I got diagnosed with pMr 8 maths ago since then my doc has sent me for pysio and amotripdiline tablets but I am in pain with my ankles

[DorsetLady PMRGCAuk volunteer]

Hi,

Bit more info would help. What dose of Pred are you on, starting dose etc. What dose did ankle pain start?

[Tarzan2 in reply to DorsetLady]

The doctoreason gave me 15mg of presidone another doctor took me off them and said I needed to try physio and amotripdiline

[PMRpro Ambassador]

If you really have PMR neither physio nor amitryptiline is the correct approach. The standard (and only so far) medications for PMR are corticosteroids - and if your doctor can recognise PMR, he should be well aware of that.

But as DL says - more info please.

[Tarzan2 in reply to PMRpro]

He gave me presidone and another doc took me off of them have me physio Co codomolecular nowith amatripdoline

[Tarzan2 in reply to Tarzan2]

Co codomol sorry but I am in pain very stiff my doctor don't seem to bother after diagnose me what can I do

[PMRpro Ambassador in reply to Tarzan2]

Did the pred work? If it did, then what you can do is find a doctor who will decide what you have.

What did the first doctor say? And what did the second doctor say was his diagnosis and why did he stop the pred?

[Tarzan2 in reply to PMRpro]

First doctor did blood told me to raisend you arms up and bend over them he said polymaligiant my other doc took me off steroidal and sent me to physio

[PMRpro Ambassador in reply to Tarzan2]

You need a sensible doctor.

You didn't answer my question as to whether the pred worked?

[Tarzan2 in reply to PMRpro]

I was on it for 3 week it seemed to work I had small pain at first but it disappeared dOctober Epson for taking me of premium he said it can cause other problems the steroid

[Tarzan2 in reply to Tarzan2]

Sorry it seemed to work only took the steroids 3 weeks doctor said steroids can cause other problems

[PMRpro Ambassador in reply to Tarzan2]

They do - but if you have PMR it too can cause other problems when not treated and pred is the only option.

[Tarzan2 in reply to PMRpro]

I will try get my doctor to listen

[DorsetLady PMRGCAuk volunteer]

Hi again,

The original doctor who diagnosed you obviously had good reason for suspecting PMR, so I guess you had classic symptoms and raised blood markers - he did test inflammation markers?

As PMRpro says if the Pred worked then that indicates his diagnosis was correct, so I don't understand why second doctor took you off Pred - did something happen to make the original diagnosis void?

Do you have any other symptoms apart from your ankles?

Think you need to see original doctor again, if that's possible, or if not, again as PMRpro suggests, see another one who can give a definitive diagnosis.

Sorry to keep asking more questions, but we can't really help if we don't have all the info.

[Tarzan2 in reply to DorsetLady]

No nothing happened my second doctor it was telephone appointment but I am scared

[DorsetLady PMRGCAuk volunteer in reply to Tarzan2]

How strange! A telephone chat cannot diagnose, or undiagnose an illness. Or am I missing something?

If possible, think you need to go back to original, or at least see another one within your surgery. Realise that may not be easy nowadays, but you do need to see someone who will listen to your symptoms, and make a sensible diagnosis.

Before you go (take somebody for moral support if you wish), list your symptoms, severity and times, and explain what effect the Pred on them, and what's the effect now you're off them. Doesn't need to be War&Peace, but you do need to get them across. If you have them written down, you don't forget them, and try not to let the doctor railroad into something you don't want. That's why it's useful to take someone with you, especially if they can corroborate what you say.

Good luck.

[Tarzan2 in reply to DorsetLady]

Thankyou

[Tarzan2 in reply to DorsetLady]

The telephone chat was after diagnosed with pmr

[DorsetLady PMRGCAuk volunteer in reply to Tarzan2]

Hi,

Yes I realised that, but my point was how can a chat on phone make the second doctor pronounce you don't have PMR.

Having read through replies, would agree that at your next appointment you -

take a note of pains you've had/are having,

take someone with you,

request another trial of Pred, saying you'll monitor results,

make follow-up appointment for say 3 weeks (if it doesn't work by then, it's probably not PMR, and you can stop Pred without problems).

As others have said, Pred does have side effects, which is why some doctors don't like them, but if it is PMR then your body is being damaged anyway, so you need something to control the inflammation. Unfortunately, whether the doctor likes it or not Pred is the only drug that works.

Good luck at next appointment.

[Tarzan2 in reply to DorsetLady]

That's the thing he didid not say I did not have it all he said on phone was the doctor should have tried other things first to be honest the doctor that I usually see did not know I was on pred till I told him I am so confused Dorset lady

[DorsetLady PMRGCAuk volunteer in reply to Tarzan2]

No wonder, poor you!

All I can say, as others have - keep notes of symptoms so you can explain to whichever doctor you see next time! Plus the fact that other options i.e. co-codamol, amitryptoline haven't worked. I know - been there!

As we've all said - IF it is PMR then only Pred will work, but lots of doctors don't like it.

Hope you get things resolved next appt.

[Tarzan2 in reply to DorsetLady]

Thankyou it's the thought of losing my sight scares me I am 50 yr old

[DorsetLady PMRGCAuk volunteer in reply to Tarzan2]

Yes I can well understand that. But it's UNLIKELY, although not impossible - you usually get some warning signs - headaches, blurred vision etc, so if anything like that occurs then get yourself to local A&E dept soonest.

In the meantime stop worrying- that doesn't help if it is PMR.

[Tarzan2 in reply to DorsetLady]

Thankyou

[TerryOR in reply to DorsetLady]

Wise advice.

[Tarzan2 in reply to DorsetLady]

It's fine I am OK with questions I never heard of polymaligia before he diagnosed me

[Tarzan2 in reply to DorsetLady]

Other symptoms are pain goes threw my upper back neck my hips and I am limites in movement my knews always stiff ankleso are worse and I am so tired

[Tarzan2 in reply to DorsetLady]

It's always different docs

[Tarzan2]

Let me explain I went to doctors for a year oround more feeling aches n pains very tired he did bloods prescribed b12 on 2 occasions then I had pain like fog going across top of my back then my arms go heavy it's a horrible pain comes sudden n goes sudden . Then a local doctor diagnosed polymaligia gave me steroids I still had pain managed to get a phone appointment with my regular doc told him about the pain he prescribed me naproxen I went bk once more was a locom doc again she gave copper codomol and said I wud feel stiff from day to day different after that I gt one more phone appointment he gave amitripolene and pysio I am so confused

[DorsetLady PMRGCAuk volunteer in reply to Tarzan2]

Me again!

Have answered above, but naproxen neither co-codamol will help PMR. As we said only Pred hits the spot.

Most is us had never heard of PMR or GCA before diagnosis, unfortunately that would appear to be the same for some doctors!

Lastly were you tested for inflammation - ESR and/or CRP initially. If not, then request blood test. Unfortunately they don't always confirm the diagnosis, but they should be done.

Think you're going to have to keep pushing on this, you shouldn't have to - many have been in your situation before, myself included!

You might like to tell the doctor if PMR goes untreated it MAY morph into GCA, and then your sight could be affected. If that doesn't galvanise him I don't know what will!

[HeronNS]

Tarzan2, have ANY of the medications helped your pain go away?

[Tarzan2 in reply to HeronNS]

No not as yet nothing takes it away

[HeronNS in reply to Tarzan2]

Then,like Dorset Lady says, you'll have to push harder. Is there someone you can take with you to your next appointment? It's so easy to forget things and having someone else there, who knows what you are going through and what you need to ask the doctor, would be very helpful.

[Tarzan2 in reply to HeronNS]

I can ask a friend but I am worried if they not taking it serious I cud go blind

[PMRpro Ambassador in reply to Tarzan2]

If 15mg of pred didn't work they should have tried 20mg. If that didn't work then it probably ISN'T polymyalgia. How long were you on 15mg pred?

It does sound as if you have got some sort of autoimmune arthritis but what it is is difficult to say. If I understand what you are saying correctly you have short periods of pain which then go away?

You need to get an appointment with your usual doctor and discuss it properly - it won't matter if you have to wait a week or two to see him. You need to keep a diary of your symptoms and write down what happened when you were on the 15mg pred - did the pain improve and so on.

But they sound a right lot!!!!!

[HeronNS]

If the prednisone didn't help, it either isn't PMR, or you weren't on pred long enough or at a high enough dose. If it isn't PMR, then the doctor owes it to you to find out what the cause of your pain is. It isn't good enough for him/her to prescribe different kinds of pain drugs if they don't know what the cause of the pain is, and they are not doing further tests to figure it out.

[Tarzan2]

I have appointment 24 July so I can talk to my doctor about what's happening to me . I am going to write down everything before I go

[TerryOR in reply to Tarzan2]

We are thinking of you, let us know what happens. It sounds like wise advice, and writing it all down will help you. I hope they find out what it is, and if it is PMR you get the pred. It is really helping my friend. Try not to worry , get tested, ask questions, and they will figure it out. We are all here behind you.

[Tarzan2 in reply to TerryOR]

Thankyou