The pred story featuring awful gps

[Chittychatty]

I love this forum and reading peoples stories and experiences. My husband has PMR and had awful experience with our drs. Took 18 months to be referred to wonderful general medical dr at hospital who immediately put him on 20 mg prednisone. He was like Lazarus after only two hours after being bedridden and losing three stone. But dr retired so back to awful GPS. They try to get him off preds so we battle and battle. We agreed to drop to 5mg and it's perfect. But still they say oh no you come off them even though he has no problems on them.

The stress is enormous. So bad I became seriously ill last year. I dont see rhuemy till september over 14 months from becoming ill. I know preds help me as a friend lent me some and it was amazing. But they flatly refuse to give me them. They say we dont give them out like sweets. When you are stuck with poor service and nowhere to turn its soul destroying. I lost my job because I felt so ill but they still refuse me any help.

So please folks hang on to your preds. I would swap with you in a heartbeat. Good health to all.

[Constance13]

We hear this type of story/experience

often. You would think the doctors had to pay for the pred themselves.

Some of us are lucky, very lucky - our doctors let us 'self medicate' (on prescription) for as long as it takes.

I have had PMR for 8 years and my doctor listens and helps wherever he can.

[Chittychatty in reply to Constance13]

Hi. You are so fortunate if you get what I mean. We cannot even get a painkiller and they eye everyone suspiciously as if we were all drug dealers. It's a very respectable district so I dont know what's going on. I'm going to go elsewhere after 40 years. They were great back in the day now it's all rules regulations etc. Stay well

[Constance13 in reply to Chittychatty]

It's happening all over. Sooo sorry for you. Big hugs!

💐🍀🍀

[jinasc]

I looked at your profile and it is empty...............could you please fill it in a bit, ie where in UK, etc Thank you .

[Chittychatty in reply to jinasc]

Thanks. I didn't fill in profile as i was looking for stuff for my husband not me at the time and since getting I myself j didn't have much energy. I'll have a look at it. Regards

[PMRpro Ambassador]

Have you really no choice of GP at all? You could insist on a re-referral - and one for you.

Where are you - and is a single private appointment an option?

[Chittychatty in reply to PMRpro]

There is a new surgery about 20 mins drive. I go to this one as I used to be able to walk to it. I was thinking ahead really but now im ready to find a decent one. Ours is the worst in the town according to the last review.

[PMRpro Ambassador in reply to Chittychatty]

Not just the town by the sound of it!!!

[Chittychatty in reply to PMRpro]

Not sure but when they have these reports ours had far too many patients. Some days there is no Dr on duty only two nurse practitioners for a total of over 16,500 patients. You see where I'm coming from.

[PMRpro Ambassador in reply to Chittychatty]

Oh I do - there is no way that is acceptable. A single handed GP here in northern Italy is not allowed to have more than 2,000 patients - and even that is exceptional, it is normally less. And ours have rather less assigned to them, although they also rarely have nurses/receptionists/assistants in the practice either. Nurse services are either at the hospital or at their own separate unit.

[SheffieldJane]

Hi Chittychatty,

More information in your profile will help people to give you relevant responses. I know we are big fans of the efficacy of Pred for PMR and GCA but the fact remains that they are potentially dangerous with far reaching consequences and everyone would love to be off them. You know that sharing drugs is a bad idea. It sounds like your doctor doesn’t trust you now. That makes it very difficult to obtain appropriate treatment. I spent all night sleepless, staring into the darkness. Today I am not a fan.

[Chittychatty in reply to SheffieldJane]

Hi there. One gp was very helpful and ran a lot of tests all fine. But he said its probably pmr or another autoimmune illness. But no medication. I'm sure they do trust me as I'm not in the first flush of youth nor am I doddery. I am very clear minded. I know its risky using others meds but I was desperate. After three days I felt wonderful. Able to walk lift etc then they ran out. So back to the chair it is. I'll see what September brings. Stay well.

[PMRpro Ambassador in reply to Chittychatty]

If he thought it was "PMR or another a/i illness" - why didn't he refer you? If it were to turn out to be LORA then it should be managed sooner not later. Complaint time maybe? Or is the manager as bad as their medical colleagues.

[Chittychatty in reply to PMRpro]

Oh don't get me started about the practice manager she's a total rottweiler. I put an insurance form in regarding my Holiday I had to cancel. She sent me a rude text saying there's nothing wrong with me so book another holiday.

I email her she doesn't reply and the drs say they don't get involved with admin matters. I'm wondering where I go with my complaint.

Ps I'm not on my own with these problems so many other patients go in there in "the old days" with problems that never get resolved.

[SheffieldJane in reply to Chittychatty]

You should certainly pursue appropriate treatment. I just meant that doctors seem very jittery about Prednisalone. I didn’t mean to offend you. Not at my best today. Sorry.🌸

[Chittychatty in reply to SheffieldJane]

Absolutely no offence taken. I'm probably just feeling a bit raw. Down with tonsillitis at moment. And wow they actually gave me antibiotics from just a phone call. Regards

[SheffieldJane in reply to Chittychatty]

Oh you poor thing!

[DorsetLady PMRGCAuk volunteer]

If your husband has been on steroids for 12years, then it’s no wonder that the GPs want him off the steroids - perhaps you should print this off (it’s about long term steroid use) so you, or your husband can discuss it rationally with them - practicalpainmanagement.com...

As for you, you do need to follow this up - not easy at this moment I realise - but if you have an a/i illness then it needs treatment...and not by taking your husband’s medication.

Can you contact your current surgery through the eConnect system? Look at their website - it’s a safe email system. ...you might get a sensible one who answers.

[PMRpro Ambassador in reply to DorsetLady]

I'm just clocking up 11 years - and under no pressure to get off them. And not least, one would hope, because the adrenal situation will be very questionable.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Unfortunately as we both know from reading on here not all doctors are as sensible as others!

[Chittychatty in reply to DorsetLady]

His original "hospital" doc recommended that he reduce down somewhat but to remain on a maintenance dose which is what we fight for. He went from being bedridden to now being active gardening etc. It scares the hell out of us them forcing him to stop. He has absolutely no side affects. Actually my sister's mother in law in USA was on them for same condition for 21 yrs and died aged 89. So we can only judge by our personal experiences. Wishing you well.

[DorsetLady PMRGCAuk volunteer in reply to Chittychatty]

Well, if the hospital doctor recommended he stay on maintenance, why are GPs questioning - it should be in his records somewhere provided Rheumy put in in writing - and not just verbal advice.

[Chittychatty in reply to DorsetLady]

Your right but at every review he sees a different gp/nurse and they all have their own opinions. We feel like we are going to war at each visit. I know they are the experts but it doesnt sit well with me others having dominance over our personal health decisions. They should just listen to us more.

[DorsetLady PMRGCAuk volunteer in reply to Chittychatty]

Agree, they should listen to you, but maybe you are getting yourselves too stressed about things - and your comment “we feel we are going to war at each visit” is obviously not doing either of you any good.

I think you maybe have to accept what they say, or find yourself a new surgery where the GP is willing to treat your PMR.

Unless your, and your husband’s PMR is complicated a GP is quite capable of dealing with it, doesn’t have to be a rheumatologist