Posted , 4 users are following.
Hi got the all clear from the hospital regarding being scanned for cancer thank you all for your support
Could I have some advice please as I have pain in neck and shoulder with big knots again but don't understand how they have come back it feels like I did at the start of pmr not been to the doc as I have been up most of the night with it then slept past the 8 o'clock time to ring up thank you all in advance
0 likes, 13 replies
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EileenH paula21528
Posted
However - you say you have nighttime back pain. When does it start and what improves it? Like getting up and moving around for example?
paula21528 EileenH
Posted
Hi Eileen it there all the time not so bad if I'm sitting with a pillow supporting my neck but it hurt when I move about its in the left shoulder going in to my neck and down in to the muscles down from my neck in to the front of my shoulder thank you for your reply
EileenH paula21528
Posted
Ouch - you have my sympathy.! And sorry - I clicked on reply and then realised I hadn't said about your tests! That is such good news. :-)
paula21528 EileenH
Posted
paula21528
Posted
Hi Eileen went back to the doc today I could on ly see the same nurse as I seen in the beginning the one that wouldn't give me pres in the first onset of per I had a real fight on my hands trying to get her to understand my neck felt the same as when it first began with per all she kept saying is the negative side of sted I was there nearly an hour before I said I need to see a doc she never examined me at all eventually I got her to speak to a doc and take more blood after all that the doc put me up one mg but like a fool I never got a prescription for one mg I only got 5 mg and 2 1/2 mg so I need to ring back up and ask if they do a 1 mg of pred fingers crossed they do
EileenH paula21528
Posted
I get so annoyed with the non-experts who, while they know that pred is the only answer to PMR, spend their time trying to get you off it. I'll stop taking it when MY body and MY PMR are well and ready - not because you think it is a nasty drug. If you think being in constant pain and unable to move is preferable to MAYBE suffering x, y or z - you're wrong. Most side effects of pred can be avoided or managed when you know how!
EileenH
Posted
paula21528 EileenH
Posted
I know what your saying Eileen she got me so mad I was trying my best not to get cross but she was having none of it going on and on about the side affects of pred she didn't even know about the dead slow of reducing she kept on saying once your on pred your body is ok it's not something they want you on long term . I dont want to be on it long term either but my body is in pain she said it not pmr because the pred keep it under control Garr silly woman . Yes it enteric coated . Thank you for your reply
EileenH paula21528
Posted
It is possible to get 1mg enteric coated now - since last August. But a lot of pharmacists and most doctors are unaware. Google "prednisolone 1 mg gastro-resistant tablets" and the links to the datasheet will come up so you can give them the details.
paula21528 EileenH
Posted
paula21528 EileenH
Posted
Hi Eileen still waiting for the 1mg prednisolone every time I ring the surgery they tell me it not on there system so I'm still waiting for it to be prescribed and for them to be able to prescribe it the doc has to ring I'm getting Fed up now grrr I feel like screaming as I'm getting no where stupid doctors
EileenH paula21528
Posted
Have you printed out the datasheet I gave you the link for? It won't be on their system - but all you really need is a hanrwritten script saying 1mg enteric coated prednisolone (the detail enteric coated is important). Then it is up to the pharmacy - who CAN find the info even if the GP can't.
paula21528 EileenH
Posted
I have finally got the 1 mg it's not that they don't have it just that nurse never gave me the prescription then when I rang they failed to get the doc to write a prescription out so I've been on the phone to different people since Tuesday but finally got there in the end it just smacked of incompetence to me but at least iv got it now thank you for replying Eileen