PMRGCAuk
7,240 members11,799 posts

HELP!

I had to go to my GP last night to get my prescription. Could feel the panic coming as she went on about me getting off the Pred in a month or two at the most. (Consultant already took me off a few months ago with distrous results) I came out feeling very down and panicked. Last time they took me off it I was in a severely bad way. I only take 2 mg - I tried taking the 1mg but it didn't work out - how on earth do I get past this - she was going on about getting the bloods done - I KNOW they'll be ok - they've been ok since I started the Pred 18 months ago. I can't make her write the presctiption. Sorry - trying to keep this short. I mean I didn't want to go on it - I was in her office pleading with her to find something else at the time - now I can't get off the thing and she's talking about stopping it. How do you make them understand. I'm barely functioning as it is.

47 Replies
oldestnewest

Oh powerwalk that must have been a really harsh meeting. I am sure someone will come along with better advice than I can give. However.....i can't understand why the urgency. Have they checked your adrenal gland and production. I know in circumstances it is hard to find energy to dig in but I would ask for test and I would have another go at talking to Dr once you feel able. Explain that it is causing you stress and making you worse. My sympathies. 🌻

1 like
Reply

Thank you. No I've never had adrenals tested. Yes maybe nearer the time if nothing has changed I'll try talking to her again - she was talking about looking into whats causing the pain if the CRP or whatever is still down. That means another load of Consultant visits and all the expense that goes with it - really for nothing at the end of it. Meanwhile I'll be left in an appalling state like a couple of months ago til I went back on the Pred.

Reply

I think some of pmrpro's material that has been posted explains that a certain percentage of pmr/GCA suffers never show raised markers. I would print off and show to Dr. Should treat symptoms not lab work. I would insist on test to adrenal. The rheumy I am with will automatically rest once under 7mg.

I will keep my fingers crossed. 🌻

4 likes
Reply

Totally agree Poopadoop...

Reply

You know - she actually said herself a couple of months ago that not everyone has raised markers!!!!! So I don't know where she is coming from with all this. They were very high alright at the start - but have been down since being on the pred. Thank you.

1 like
Reply

Is there not another GP you can "interview"?

After only 18 moonths and at 2mg - there is a VERY high chance that you are simply at too low a dose to manage the pain. Some people don't develop the acute phase response while still on pred - no-one knows why, it is just so.

Why on earth do doctors diagnose a patient with PMR - and then ignore all the known facts and try to get the patient off pred too fast because they are scared of it?

Where are you?

2 likes
Reply

Im in Dublin - yes to be honest I had to increase it a bit a week or two ago and it was better - but there's just no way she'd entertain anything more than 2mg. I've been trying to manage on the small dose - kind of holding it together - but in my heart I know about 5 mg is much better. Now this - off it completely in 8 weeks at the most - I just can't fathom it.

2 likes
Reply

Dear powerwalk, I feel so sorry for you. It is so difficult to fight a doctor who is so certain about their ideas. I really don’t know what I would do in the circumstances short of lying on the floor screaming in pain. Eighteen months is very fast to have got down to 2mg, your doctor must know that.

4 likes
Reply

Oh she thinks it should be doable!!!

Reply

That always makes me laugh. Given that doctors are said to be worst patients would she assess it as doable if it was her doing it.

To be honest if I get to 7mg with symptoms controlled I would be ok with that. At 2-5mg like ypu seem to be stuck at is less than natural dose.

3 likes
Reply

She blatantly obviously does not understand the nature of the beast. It is a chronic autoimmune disorder - and NO-ONE knows how long it will last. The pred doesn't cure it - it manages the symptoms. You keep trying to reduce in small amounts - and if the symptoms don't return you can try a bit lower. Rinse and repeat. Until eventually you get to zero. But you can't say for sure when it will be.

Would she tell her RA patients they could get off their DMARDs altogether because they are in remission because of them? Or expect a diabetic to stop the insulin at some point? It's the same as putting a patient with high BP on medication which brings it down and then saying "you are cured - stop taking the medication". The BP would just shoot back up again.

5 likes
Reply

That is such a good response, if she were my doc, I’d put that to her and make sure she gives a proper answer .

Reply

I agree with piglette - and I know what I woud do: find another doctor. There is no point being on a dose that is too low to manage the symptoms.

However - I wonder if this might make her a little less paranoid:

practicalpainmanagement.com...

It is from one the world experts on PMR at the Mayo who is concerned about this fear of using low dose pred in PMR patients and leaving them in pain unnecessarily. Low dose pred does NOT cause increased risks compared to an age-matched cohort.

It certainly worked when one person showed it a similarly intentioned doctor who wouldn't let them take enough pred to manage the pain.

2 likes
Reply

Oh I will print that out. thank you.

1 like
Reply

Are you seeing a rheumatologist too or just a GP? I’m in Dublin too, if it’s your GP, I’d be inclined to ask her to refer you to a rheumatologist or someone who is familiar with PMR if she can’t or won’t treat you.

Does she not understand that the reason your bloods are ok is because you’re on Pred? Sorry, but this attitude that some docs have really drives me nuts. I really hope you get help from someone who know what they’re doing! X

1 like
Reply

Oh well it gets worse GerriMc - My Rheumy took me off the pred altogether - about 3 months ago - havin been on pred for less than 18 months. It was an unwholly disaster - could not use my arms at all hardly and in agony and my legs just about packed in - could barely walk with the pain. It was this GP that allowed me to continue on a low dose but now is obviously going the route of getting off them. Just never ending this whole thing.

2 likes
Reply

was it a man or woman you saw - the Rheumy - not sure you wish to use names. Mine ws a woman in the Bons.

1 like
Reply

Prof Kane in Tallaght.

1 like
Reply

I find him v good.

Reply

Oh that’s awful! I guess I’ve been lucky. I’d be inclined to print off the info on here about pred reductions and tell them to read it. Or ask them if pred is so bad, why did they give it in the first place... because you were in pain... you’re still in pain.

I really hope you get some help soon. X

1 like
Reply

Powerwalk - I really feel for you. Three times over the past five years I have tried to get down below 2mg - Initially, not knowing anything about Pred or PMR and determined to stop taking [evil] steroids a. s. a. p. Next two occasions I tapered and seemed to be doing ok but in fact wasn't. I started feeling exhausted, getting ocular migrains and gradually pain built up. In both cases I put it down to a stressful years - and unbelievably didn't see the writing on the wall. Finally my GP decided to 'try' putting me up to 15mg and the Pred miracle took place. This time I am doing a dead slow taper, down by .5 mg a month, and if necessary longer. With pacing I am doing OK, and I have finally accepted that I may get stuck at 7 or 5 or with luck 2 for the rest of my life, but I have NO intention of accepting randomly that I no longer need them. My GP is not as bad as some, but knows a lot less that I do about the complexities of PMR. Good luck - its your body and your life, be brave !

1 like
Reply

Thank you. Unfortunately it seems most of the medical profession don't know enough abut all this. It just adds to the stress of it all - not to mention the pain and mind blowing exhaustion. Good luck to you.

2 likes
Reply

I feel your despair. I'm so sorry you have to go through this.... it sucks! I recently tapered down from 60 to 45 mg an thought I would die. I'm back up to 60 and going to Rheumatologist tonight. Hang in there. Hopefully you will succeed in tapering off.... I'll keep you in my thoughts and prayers.

Reply

thank you.

Reply

Good luck with your appointment tonight!

Reply

Greetings Powerwalk

Sorry to hear about your experience with your GP - I had a similar run-in with my temporary GP a few months ago, when she was adamant that I should 'get off' the steroids asap.

First, I would suggest writing formally and urgently to your GP Practice Manager expressing your dissatisfaction with your GP's recommendations and her attitude towards your obvious difficulties in reducing the steroids without returning symptoms, regardless of the level you are at.

Also, you should state that you understand (from this forum) that 'normal' blood markers can be misleading in terms of recording an absence of, or low inflammatory activity since that's exactly what the Preds are intended to control! (if I'm correct about this).

I would also refer your GP PM to / send them a copy the British Society of Rheumatology / Professor Dasgupta's (?) guidelines which recommend (sic) that 'due to the heterogeneity (i.e. variability) of PMR disease, management with glucocorticosteroids should be tailored to the individual patient's circumstances and jointly agreed with their medical practitioner' (or words to that effect).

I.e. there is no 'standard' approach to reducing the Preds, despite what the GP is saying to you.

I did the above and it worked - I then got a consultation with a different, senior GP who was far more sympathetic, listened to me / my concerns, and agreed that I am capable of making my own judgement about the rate of reduction, even at 2 mgpd.

I'm sure the experts (Aunties) will be along soon with their thoughts, but I hope this helps in the meantime.

Try to keep positive ;-)

MB

Dx PMR 2015, now at 2 mgpd pred and reducing VERY slowly...

2 likes
Reply

Thank you so much. The support fro everyone helps so much. What on earth would we do if we had to do this alone!!!

3 likes
Reply

Hang-on in there powerwalk, and remember the old saying: 'Don't get angry, get a RESULT!' If you put your experiences, concerns and request for an alternative GP's professional view in writing to the surgery PM he / she will be obliged to act on them ;-)

2 likes
Reply

Most us "oldies" did have to do it alone - which is why we are here. In the hope of saving others the agony. And in the case of GCA - any more people losing their sight.

8 likes
Reply

And we are so grateful!!!

6 likes
Reply

so, so Grateful- it makes one almost Sane!!!

4 likes
Reply

I agree with Uncle Mark: document in writing using facts.

I'd find everything I could regarding the treatment of PMR, highlighting the areas that speak about 2+ years of treatment. I'd also find everything I could that states that sometimes sed rate/c-reactive protein rates aren't elevated. Then I'd use them and site the source of the information, ie. British Society of Rheumatology, etc. and send in a letter to the practice manager.

I'm a firm believer in documentation. It's much more powerful to have documentation backing you up than just "I feel....."

Here's something you might be able to use from the American College of Rheumatology:

rheumatology.org/I-Am-A/Pat...

(under how is PMR diagnosed and treated):

"In PMR, results of blood tests to detect inflammation are most often abnormally high. One such test is the erythrocyte sedimentation rate, also called “sed rate.” Another test is the C-reactive protein, or CRP. Both tests may be very elevated in PMR but, in some patients, these tests may have normal or only slightly high results." and..

"When your symptoms are under control, your doctor will slowly decrease the dose of corticosteroid medicine. The goal is to find the lowest dose that keeps you comfortable. Some people can stop taking corticosteroids within a year. Others, though, will need a small amount of this medicine for 2–3 years, to keep aching and stiffness under control. Symptoms can recur. Because the symptoms of PMR are sensitive to even small changes in the dose of corticosteroids, your doctor should direct the gradual decrease of this medicine."

and more documentation:

jamanetwork.com/journals/ja...

Review

June 14, 2016

Polymyalgia Rheumatica and Giant Cell Arteritis: A Systematic Review

Frank Buttgereit, MD1; Christian Dejaco, MD, PhD2; Eric L. Matteson, MD, MPH3; Bhaskar Dasgupta, MD4

Author Affiliations Article Information

JAMA. 2016;315(22):2442-2458. doi:10.1001/jama.2016.5444

“Constitutional symptoms and elevated inflammatory markers (>90%) are common in both diseases”

“Glucocorticoid dose tapering should be individualized according to the clinical course (Figure 2). Treatment of PMR and GCA is usually required for 1 to 3 years but frequently longer (often with glucocorticoid doses of 1-5 mg/d).”

Hope this helps! Best wishes!

4 likes
Reply

Thanks and very well said, Insight :-) (Some) GPs / medics take note!

Reply

I was just adding to what you proposed -- which was EXCELLENT!

1 like
Reply

Ahh.. Bless :-)

1 like
Reply

Thank you all so much !!!!!

Reply

Hi Powerwalk you have obviously been seeing my Gp!! I am on 2mg of Pred,she wants me to reduce to one every other day then stop and have blood test and see her 😳She's only given me enough pred to do this.I can't get in to see another Gp for weeks.So what about the aching arms and thighs?Its probably something else she says😡So I'm going to try and reduce and see 😂😂

1 like
Reply

Oh I know - its very stressful the whole thing. I was told my pains in my legs are Fibro - but the other night I said to her - Fibromyalgia does not respond to pred - but this is - to which she said "yes it doesn't" - so no-one is coming up with any answers to anything. As I said - all my shoulders and arms get worse as I reduce. So not looking forward to next few weeks. In fact I actually took an extra dose this morning to try get things calmed down. Good luck with reduction - hope it works out. Let us know!!

1 like
Reply

I have difficulty in accepting what many of the doctors say I feel that I should have the right to determine what I need in the way of medical care to manage pain and maintain function of my body.

It seems like these days we are slaves to the doctors. It is my body. If I want to use more prednisone I should be free to do so as long as I am willing to accept the consequences. If I had reduced to 10 mg as my last doctor had wanted, I would probably have killed myself. I have no desire to live when I am in that much pain. Most of us now live in countries were medicine and other things are too regulated.

Reply

Yes -live in the awful pain and then tell me not to take the medication. I HATE meds - always did - and there's no way I'd want to be on this if I literally didn't need it. They make you feellike you are asking for cocaine or something. At least I got an extension from the GP - til now! I mean the Rheumy just left me to it - with nothing. Needless to say I won't be returning to her - ever.

Reply

Power, you have a legal right to ask for another opinion from a GP and a Consultant. Should over a period of time nothing come of all this and there is NO improvement in your condition, speak to a solicitor.

Reply

Thank you. Yes if it goes pear shaped - I will ask to be sent to another Consultant. Many thanks.

Reply

I'm usually a 'watcher' on this site ( typical male amongst many lovely ladies ). I have 2+yrs of PMR + pred (20mgpd down to 8mgpd with a couple of 'stumbles' along the way and this forum has been a most informative and reassuring lifeline in my PMR journey and what is more has a great 'atmosphere'. I am most definitely not about to unbalance the guidance of those with far more knowledge and experience in this field than me, however for me the last 2 months have been particularly unpleasant and I gather life-threatening as I have fought to overcome double pneumonia. I must say right away my medical support, advice and treatment has been faultless throughout ( in my view ). The response I get from almost all of my medical team when I ask where this pneumonia devil came from when my OH is as fit as a fiddle in her early eighties when we share the same facilities - you know what I mean - ( I'm marginally behind at 79 ) is down to my lack of immunity as side effected by Prednisolone. There is much I could add and certainly don't wish to distort the opinion of those with knowledge and experience far greater than me but I imagine the average GP would be influence by this risk and do all they could to tread the middle path if there is such. I will do all possible to eliminate pred from my diet as soon as I'm rid of this pneumonia.

Most will be aware of the severe 'winter virus' which has found home in the UK this year and presents a particular danger, they need all protection possible, lack of immunity must be high on the list of risk factors; yes I am having a prescribed high dose ( 30mgpd ) of pred in the extensive cure prescription which will get me back out on my bike again this spring ! Please don't remind me of the horrific pain when it all began - I try to erase that from the memory bank ! Best wishes to all.

2 likes
Reply

Thank you - oh I know what you're saying - nothing would give me personally greater pleasure than to get off this pred - I actually fought not to be put on it - but I just can't function now with the pain without it. I don't think this PMR is gone - unfortunately -I wish it was - as was painfully obvious when I was off the pred for a month. I just need to be able to stay on it long enough on a very low dose to keep me functioning!! Literally! Maybe they'll come up with a magic pill to replace it!!!! Good luck to you - I hope you feel better.

3 likes
Reply

I have had the same thing happen repeatedly over the last 17 years with disastrous results almost every time I tried to even begin following the GPs requirements. I have been on 10-20 mg of pred since 2000 with occasional increases to 40 or 60mg.

I am lucky in that it does not cause a loss of bone density for me. I am 69 and my bone density was high in 2000 and has just increased. I have been told that levels below 5 can normally be tolerated. My endocrinologist said that 15mg was ok for me if it allowed me to stay active. My last doctor forced me to reduce from 20 to 12mg too fast. She wanted me to go to 10mg in 2 wk

I decressed to 12mg in 9-10 weeks

That was much too fast. I lost muscle mass, pain and stiffness increased. I went from walking on rough ground, falling 2x per week to having to use a walker inside, not being able to walk on rough ground at all and falling 3 or more times per day. I went back to 20 mg and found another doctor. I regained some of my strength but never got back to were I was.

I would never recommend reducing to the point were pain rules your life and your quality of live decreases so much. I do not know what your health is in general or how old you are - you have to make decisions based on your circumstances.

Based on my experience, I would rather live 1 yr on higher level than 5 yr in pain. I will save old prescriptions for my dog or go to a different dr in another country or whatever it takes to get prednisone to keep my body functioning and out of a wheelchair.

2 likes
Reply

Oh - sounds awful. I unfortunately do agree with you - I'm really pushing it at 2 mg. - Very sore - feet horrendous - like walking barefoot on pebbles - I don't know if the pred has done something or if I just can't manage without it now. Though I did have some foot/leg pain before I went on it and the Pred just took care of it all as well as the PMR. Honestly I'm really better on 5 - cos I can't get to grips with things since the Consultant took me off it completely for over a month - and it was a disaster. I couldn't even use my arms with the pain -I was doing ok at 2 mg or so til then. I'm only on it 18 months - I'm nearly 59. Its a bit of a minefield. Thank you so much for your reply.

Reply

My sentiments exactly.

Reply

You may also like...