PMRGCA

[Stavrou1]

Hi all. I apologise in advance as I am dyslexic, so I may not explain myself well..

I am a CLL patient , been in remission since Dec 2023 after year long treatment . Was very hard going .

Than more problems.

I was diagnosed with PMR last August was monitored PMR levels for 3 months before put on Prednisone I am now on 8mg . Constant headaches , heat in several areas , generally feel ill and tired . I am still gaining weight .... is this a common problem with 8mg daily ??. With weight issues ??. finding it hard .

Should I be referred to a specialist ?. I asked my doctor, and he says there is no need.

[PMRpro Ambassador]

Hi and welcome - and in return, if we say something you don't understand easily, say so and we will try to put it another way!!

Well I disagree with your GP - you are a complex patient and in your situation I would want a specialist on board. And particularly in view of your complaint of constant headaches and unwellness which COULD be suggesting GCA,

What do you mean by "heat in several areas"?

With regard to the weight problem - try cutting out carbohydrates from your diet, especially processed foods and added sugar for a start. Don't eat too much fruit as that has lots of sugar and limit root vegetables. That often helps a lot - how much you need to cut varies though so you have to try and see how you get on.

[Stavrou1 in reply to PMRpro]

Hi and thank you for your welcome for quick reply and putting me st ease if don't understand. I don't do processed foods at all . Interesting about root vegetables , something I 🤔 didn't realise. My fruit is very limited and sugar as I also have accident reflux ...

My thought entirely about GP !! . I have a appointment on Friday, and going to ask for referral again !! .

Do you mean Giant cell arthritis!!

Heat episodes daily around neck and shoulders knees , upper thighs. Aswell as pain and hips .

[PMRpro Ambassador in reply to Stavrou1]

You mean sweats? Or just feelings of heat?

Not artHritis, artEritis - but don't worry, we have come across healthcare professional who get it wrong!! I think it is just not right that the two words are so similar!!!

ARTHRITIS is inflamed joints

ARTERITIS is inflamed blood vessels

Sounds like your diet is well on the way to being good for PMR and pred.

[Stavrou1 in reply to PMRpro]

Oh I see they are so similar. it's inflamed joints. When I am in bed , the heat on shoulders , back and thighs & knees are worser.

[PMRpro Ambassador in reply to Stavrou1]

The pain is in the joints? It is difficult to sort it out - in PMR the shoulders and hips hurt and are stiff but it isn't really the joints that are inflamed, it is where the muscles and other soft tissue is attached to the joints. PMR and GCA are at opposite ends of a spectrum and the common factor is inflamed blood vessels - so it can be very confusing.

Giant cell arteritis is due to inflammation in the arteries, artery-itis, -itis means inflammation.

[Stavrou1 in reply to PMRpro]

Sorry little confused , have I been misdiagnosed!! Is it not PMR and should not be on pred !!

[PMRpro Ambassador in reply to Stavrou1]

It is difficult to say without seeing you - are your joints hot and swollen and painful?

Or are your hips and shoulders stiff, especially in the morning? Did your aches and pains improve a lot and quickly when you started pred?

But it is said that a lot of diagnoses by GPs are incorrect. You have something and if pred helps that is OK but there might be something better if it isn't PMR.

And it is why you really might be better with a rheumatologist.

[SnazzyD in reply to Stavrou1]

PMR and GCA are related and both need Pred. You can have one or the other or both. PMRPro is just describing that they affect different parts. GCA requires higher doses than PMR so it is very important that they get the diagnosis right.

[SnazzyD]

Hello and welcome! To help people reply, some details on the dosing will be useful.

Am I right in understanding that you were diagnosed in August and then monitored for 3 months before you were given Pred?

By any means, to be on only 8mg by now is too fast and your dose is likely not high enough.

What dose were you started on and when did it start exactly?

What dose drops did you do?

[Stavrou1]

Hi thank you also for reply . Sorry , I was monitored monthly with bloodtes for 3 months .

Roughly started about 24 August I started on pred 15 than a few weeks drop down to 12.5 few weeks after dropped down to 10 than to 9 and 8 .

[DorsetLady PMRGCAuk volunteer]

As it seems a bit unclear as to what you actually have, then you do need the input of a specialist, so please discuss with your GP…. I think he’s assuming it’s simple PMR and it doesn’t sound that way.

It might just be too fast a taper if it is purely PMR, but the headaches certainly need to be investigated properly - and the “heat” you refer to is not typically PMR nor GCA.. so there may be something else as well as PMR.

There is a lot of information I could give you but it’s a bit overwhelming at the beginning, so I’ll keep it simple for the moment and just say please ask when you don’t understand what going on.

Please do let us know how things go with GP..

[Fatsiajaponica]

Hi Stavrou1, just wanted to say hi and welcome, this is a good place for information and support. You have already had replies from some of our best so really very little to add except the tiredness is very much part of PMR and prednisolone doesn't seem to help with that.

I hope all goes well for you and that you feel better soon. Sending my best wishes.

[Angelsmummy]

You come across very well Stavrou,hats off to you,and welcome,you will gain many friends on here and lots of support,good luck.xxx💐

[Stavrou1]

Good morning to you all . Thank you so much for replies . This is a great community and thank you for welcome .

I also use it for CLL

I also Have M.E chronic fatigue , about 37 years now! . Anouther invisible illness.

Am feeling really exhausted after anouthet bad night . Any messages will try and pick up later .

[pammy_hyland]

Oh no you poor thing...your dosage is obviously to low and not for long enough before tapering... you need to be stabilised before even thinking of tapering ...I would ask for a specialist as your GP doesn't seem to have much understanding of PMR or GSA ...I was very lucky my GP where I used to live was brilliant so put me on the right road for years on to managing my disorder myself and working with my new GP practice...No need to apologise for your dyslexia I am also a dyslexic too...