Appointment with rheumatologist today. Not the same one I had seen on last two occasions. I started ny saying that though I had been initially diagnosed with polymyalgia rheumatica I felt my condition was more like palindromic rheumatism - which he ignored.
When he heard that I was still on 15 mg steroids after a bad flare just before Christmas he went ballistic. Much too high a dose he said, go down to 10mg tomorrow and then reduce by 1mg per month.
He them wrote a lengthy latter to my GP - probably accusing him of overprescribing steroids and prescribed a once a week bone strengthening tablet.
He then got me to have quite a fewf blood tests taken too.
To say I am not a happy bunny is quite an under-statement 😢
Edit :- I am typing this whilst I can. Although the Rheumy told me to go straight to 10mg from 15mg, I just dropped to 12.5mg starting Wednesday 09th Jan.
So this morning I woke up about 5.30 absolutely freezing and went to the toilet - by the time I got there my body was shivering all over. I brought another blanket to lay on the duvet and turned on the heating, got back to bed and warmed up a wee bit.
So I got up and when getting dressed noticed mild pain on the outer part of my hands - the sides with the little finger. Oh oh I though, this is typical of the way flares start for me, a mild pain which grows to incapacitating pain and then returns to a mild pain again - when it may move to another part of my body.
So I drove to town for supplies - cause if the pain grows I will be unable to drive. Bought what I went for and noticed the pain increased whilst using the handbrake and gears. Got home and changed into elasticated trousers and slippers (just in case).
So sitting here typing and hoping it goes away. Still feeling feverish. Will continue this later ................................
Later - the pains in the side of the hand increased a wee bit and I waited for the flare and then the pain subsided. I did get aching dull pain in places where I flare - backs of hands, thumb pads, groin, shoulder, knees - but this was just minor pain, certainly not incapacitating. So there was I in my elasticated waisted trousers and slippers all ready for the flare and it didn't materialise,
Yjis morning the backs of my hands and my groin are a bit niggly.
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Perhaps we shouldn't let our docs get away with treatment like this. If you have a question concerning your condition and you need the input of a specialist. Ignoring the question is not an answer. Perhaps you could politely insist to hear his opinion. What your doc writes to your GP is information you are entitled to and it is important as well. You should not ever be kept outside of the loop. Did you know your GPs plan concerning the steroids? Evidently your rheumy was not on the same page.Something you also needed help in understanding. Evidently you didn't get any information why the blood test were ordered? The doctors should be ther to help you understand what the treatment is about and why things are perscribed. Perhaps we should just glue ourselves to the chair until the doctor has been clear enough 😊We need not and should not become the helpless patient, it's simply not good for us!
Actually I think he sounds great, high steriods have risks and include broken hips. And most definately Adcal or something like that as Oestoporosis is another huge risk. I'm on high dose steriod therapy 90 mcg daily and its not good, never mind weight, spots its being unable to sleep and so wired its awful. I've been on them now for a month and it will continue but would never just swallow the stuff and my blood is monitored every fortnight now, down from once a week to ensure the therapy is working on my kidneys. Please make sure you carry your blue card and get the bloods done.x
It's not so much reducing steroids as the Drs manner in doing so..All that needs yo be said is a lower dose is required, calmly explain why and write to GP. He sounds an arrogant sod.
It's a bit like that I'm afraid. I have got a bit more feisty and upfront. There is one rheumatologist I absolutely cannot stand. I always groan inwardly when I get her. She a condescending cowbag frankly.
Quite different over in gastro. Always see same person, never rushed, answers all questions. Just seems a lot more compassionate in the gastro department. Couldn't fault them. They must be as equally rushed as rheumatology.
I know you are really wanting an instant diagnosis, but AI diseases aren't simple to diagnose.
It sounds as if your Rheumatologist is a good sensible guy....taking his time to help you. Nobody wants to get stuck on high doses of steroids......do you realise how long it could take you to get off them if you stayed on such a high dose? I would be happy he cared enough to start to wean you off them so soon.....being painfree on Pred is a fool's paradise......that could come back to haunt you in future years....when you could be diagnosed with osteoporosis.
Never a good idea to suggest what you think your condition is.
Try flattering the doc ....asking what does he think it might be rather than the original PR?
A consultant rheumatologist doesn't take kindly to patient's self diagnosing ......I know we all think we know better than the doctor, but you might get a better reception if you let him get around to deciding what you have.
So when he gets the results of you blood test....try to hear what he advises & by all means ask question, but it's really not a good idea to name a disease you think you might have.
So cheer up....once you have all your test results you will hopefully get the treatment you need,
One thing, 15mg is not a high dose given for a flare . T hadn't been on this dose for very long. We do not know what the GPs plan was. Being on 15mg for a month when flaring is not against any recommendations. So which doctor is on the right track is not that black and white. Good idea to start tapering if flare calmed down, but unfortunately may take longer. I was on 15mg for two months then tapered off 1mg per 2weeks with no problems. One month on 15mg does not weaken your bones.X Simba
I'd not take a chance on that Simba, its the hidden bone damage. I think we are not medically qualified and it might be down to weight, other existing conditions etc. I'm not saying your wrong but its a judgement call and I agree we don't know all the facts and never can. I think he sounds like a twit but on the other hand a highly educated one. My understanding is its a fortnight maximum for oral steriods with Adcal and a slow taper. Something I'm not looking forward too as on 90 a day and its a long haul. x
Lot of research done on this. Not my personal nonmedical opinion.We are also very much aware of the fact that the knowhow of doctors vary. This is why we get second opinions and follow recent research and changing recommendations.When we are talking about high steroid doses for a forthnight, I have understood that the mgs are much higher. I may be wrong but perhaps you have some info on this that I do not know about ? .Simba
Only what the Renal Consultant said. And the spots, moon face and insommonia, then the shakes and fact it makes me so hungry I could eat the plate never mind the food on it. Weight gain and dry skin and its changed my hair colour and its growing very fast. Predisone is the drug of the devil, by injection I never had a problem but tablets its a no from me. I'd not take this stuff unless forced too.
Hi, I am no expert on Pred- I'm going on people I know and those I read about on here who desperately want to come off it....plus of course my own minimal but nasty reaction to it.
It is probably fine to take it under close supervision for a few months, but from what I see and hear anyone would be better off not having to be on it forever-or at all if possible.....I was very lucky as my doctors found alternatives & I am now on just one biologic....but Rheumatologists had more time then.......let's hope moving forward more doctors choose to be Rheumatologists.
I'm definitely of the same opinion. Best to keep away from pred but then again I think its best to keep away from NSAIDs as well as RA meds. When we have a flare, which means we have high inflammation which results in more destruction. We need to calm this as quickly as possible. NSAIDs is often not an option for many because of existing gut problems and perhaps their lowered efficacy because of longtime use. In this situation from what I have understood, a short pred intervention would be the best option. This does ofcourse not mean that you keep on hanging on to pred for long.x Simba
I have been extremely fortunate and have never had a rheumatologist who has wanted to push more and more drugs into me. Saying that - I've only had 2 rheumatologist in 20 years. Even now being on Biologic infusions there's been no suggestion of adding something if things weren't going smoothly ...I don't have Mtx with my infusions not only because I didn't want it, but because my rheumy didn't want to prescribe it.
I do speak up for myself constructively at consultations & luckily I seem to be doing OK at the moment...but TBH,I wouldn't want to go through it all again, just hope I'm not being too complacent!
Original diagnosis was Polymyalgia Rheumatica - done my my original Rhuematologist, I didn't have a flare at the time of the appointment so he diagnosed me through my explanation of pain and flares and slightly raised inflammation markers. It is only during the 10 months since that that I have learned more about my condition through the HealthUnlocked site and others and heard about Palindromic Rheumatism and how it fits my symptoms more than the Polymyalgia symptoms do.
I don't believe he will get back to me when he gets the blood test results, he mentioned he would probably see me again in 6 months.
The 6 months is normal and i'd always go for the qualified informed opinoun rather than anything else. Palindromic i thought just means it moves about like mine does sometimes left hand then thats ok the next time its the right shoulder etc In any event I'd not get hung up on a diagnosis really. As my son said medicine is a science but its not an exact one. So we are all different and i still think that the best measure of a good doctor is one that might not have the best bedside manner anyway but does have your best interests at his heart. AIt might be actually your chap is looking to first do no harm, which steriods definately can do. I'd avoid them iif I could Aged Crone is right they are a feel good fix in the short term, in the long term potentially very dangerous. I do hope you feel better soon.x
Hi ML....My original diagnosis was ideopathic,palindromic ,sero + arthritis no RHeumatoid at that point.....& as you say Palindromc means it comes & goes.....
You make an appointment to see a doctor because you are in agony....48 hrs later you cancel because the pain has disappeared! It is the most frustrating experience, mine morphed into full blown Sero+ RA within two years.
Thankfully my rheumatologist was not a fan of Prednisolone, but did prescribe a small dose...it was a long time ago so can't remember the exact dose, but I had such a bad reaction I was given a different steroid IV & so never got hooked on it & have never had Pred since.
I completely agree that by taking time a Rheumatologist is looking & learning & not filling a patient full of drugs just to appear to be doing something. Unfortunately with so few doctors & so many patients I think the Rheumi's are as frustrated as the patient in not being able to spend as much time as they would like taking a history & learning from it.Who would have thought all those years ago, having Hayfever & Urticaria as a child was a pointer to consider in my diagnosis, but it was...I doubt these days a first consult is anything like as thorough as it was 20 years ago?
So true AG, I've had awful pain etc, sat down in the Surgery and its gone. I was lucky tested posative straight away so agressive medication began that day. I have good GP and great RA people so its never happened to me, I so think your right about time pressures and medication restrictions so the consultants sometimes can't even prescibe what they might know is best for the patient. I know I've always seen someone quickly and around here we only have 2 RA consultants now instead of 3 with a locum and only 2 nurses for a huge population. No wonder they all look so tired but still picked up my problem long before I knew anything was wrong.xxxx
Your account sounds like the two of you got off on the wrong foot! You wanted to be heard and he wanted to impress his opinion on your management which he felt was harmful and didn't listen because he had other priorities.
Unfortunately this means that you will have to be assertive to be heard. Either with this new consultant or another. As a first step, you could write with your concerns and see if that works?
I too have palindromic rheumatism and I understand the pain and unpredictable nature of this condition. The flare ups lasted months. But my Rheumatoid Dr never would give me steroid injections. Can I ask what meds your Rheumatoid dr has you on?
I don't know who you were asking, but with Palindromic Arthritis it all depends on how it develops & what the Rheumatologist finds in the various test results.
Well, my original diagnosis was Polymyalgia Rheumatica (and that diagnosis hasn't changed - even though I think it is more definitely Palindromic Rheumatism) and I have been on steroid tablets prednisolone for that - as steroids are the only treatment for (or the main treatment) for Polymyalgia Rheumatica.
As for the blood tests - a lot of people with PR (There is no specific test for the condition, so doctors usually diagnose palindromic rheumatism based on symptoms.) or PMR (There's no specific test for polymyalgia rheumatica, but it's likely that a series of blood tests will be carried out.) don't have raised inflammation markers either
Saw my GP yesterday and he agrees that it is probably Palindomic Rheumatism and not as originally thought Polymyalgia Rheumatica. So he is going to write to the rheumatology dept at the hospital to try to get me re-diagnosed. In the meantime, start to taper off steroids (again).
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