Visit to rheumatologist: I see a rheumi every nine... - PMRGCAuk

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Visit to rheumatologist

5lupins
5lupins

I see a rheumi every nine months so very lucky. I have a real problem telling her just how I feel. Many days I feel as though I have been beaten, everywhere hurts and although I am able to do many things it is only for short bursts and really struggle lifting etc. Her report to gp says no sign of gca or pmr but she wants me to stay on 10mg of methotrexate and 2mg of steroid. I am just managing at this level and don't ask for other treatment as feel I can't risk any problems. OH having chemo for non Hodgkin's lymphoma. He is doing amazingly well but they have found a patch on his lung and he has to have a non cancerous growth off of his neck. Tricky has he has very low platelets and may need infusion. I am so grateful to our local hospital. Every Doctor and nurse has been so good.

In my report my dexa scan is,lumbar spine -1.1 and hips -1.0. Rheumi said osteopenia so try and keep a careful watch on calcium and Vit D will check in two years. Are these ok for now?

9 Replies
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Hidden
Hidden

Oh 5lupins

Sending Hugs to you & your husband, is you Consultant aware of your husbands condition or that you are really barely managing? Try writing a note in your diary of what kind of a day you’ve had so you can show your Doctor/Consultant. You may only need an extra Mg or Two of Pred to improve things, it’s most definitely worth discussing.

Kind Regards

MrsN 🌷

5lupins
5lupins in reply to Hidden

Thanks Mrs Nails, I'm not very good at saying how bad I am and bloods are ok. I have had X-rays and echo scan twice so I feel she is not too bad. I find it easier when they can see something. She still wants me to remain on medication so fingers crossed if oh remains ok I will manage.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Agree with MrsNails, it’s no wonder you are only just managing.

Is it worth speaking to GP - he obviously knows all about hubby and stress you’re under - and suggest you raise Pred just a little.

5lupins
5lupins in reply to DorsetLady

OH doing really well and GP knows I put steroids up to 3mg when things are difficult. I'll be glad when he has had the growth removed next week. Surgeon says it is a cancer but99% sure it is not malignant. I still worry about sepsis after three episodes. Luckily John is not a worrier and easy to live with. 55 years this year. Whew !! Jen

PMRpro
PMRproAmbassador

Your rheumi wants a clip around the ear - sorry , but to tell you you have osteopenia with those readings shows she doesn't understand them! They are as good as someone in their 30s. A score of -1.0 is normal - the -1.1 IS osteopenia but barely different from the other score - it remains osteopenia until they get to -2.4 ...

medicalnewstoday.com/articl...

Do you feel better at 3mg? Or must it be more? I know what you mean about feeling as if you have been beaten all over. I felt like that during January - all down to stress and too much walking etc with a husband in hospital. Now things have eased I feel so much better - still knackered but don't hurt as much! I upped my pred - and felt rather more human. On the way down again now.

Thanks, that is good news about dexa scan. I do feel better at 3mg but try and manage on 2mg. This year ha s been hectic though and with outpatient appointments and chemo full days we are always at the hospital. Not grumbling as it is better than it has been.

I think the constant worry beats your body up more than you realise then the pain kicks in and knocks you sideways. Hope you are a bit better. Jen

PMRpro
PMRproAmbassador in reply to 5lupins

No, no "Try and manage" - anything under 5mg is a very low dose, far less than your body needs to function properly and if you take less your body simply has to make more of its own natural steroid, cortisol. You NEED it to cope with stress, if your body is lagging a bit, take a bit more of the tablet variety, At 55 years married you are obviously a bit ahead of me - there is no virtue in struggling at your age and that level. I don't and I need lots more pred than you!

Hello Jen,

I agree with the others. I wouldn't put up with feeling beaten , everywhere hurting and "just managing", for the sake of an extra mg or more! If we don't tell doctors how we feel and hide the truth of the matter from them, then they can't help us to best effect. Like you, I am so grateful to have my GP and Rheumatologist, but I do tell them how I am feeling!

You are amazing looking after John through his illnesses, but you also need to look after yourself!

'Pep talk' over! Take care. x

PS Congratulations on your anniversary when it comes and on your DEXA scan results!

Thanks Rugger, John is amazing, apart from fatigue he just takes it one day at a time.

I don't know just what to say to Docs as my symptons don't fit the PMR or GCA pattern after ten years. They do not however want me to reduce meds or take more than 2mg of pred. But I do have a repeat prescription for 3mg so have a bit of leeway on the quiet!!

Hope you are feeling ok, take care. Jen

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