Appointment with my Rheumatologist tonight has totally disappointed me! I came out wondering whether to get another opinion but that's probably because I didn't want to hear what he was saying to me! Having got down to 1mg (and in self denial that the pain was coming back) I reluctantly had repeat bloods only to find that my ESR had crept back up to 27 and CRP borderline at 5. My Rheumatologist put me back up to 5mg daily and symptoms subsided. He has now told me I need to taper 1mg every 2 months (initially he said 3 monthly but when he saw the look of horror on my face he changed his mind). Question is "Do I trust him, or is it just because I don't like what he's telling me?" I don't like taking prednisolone because of the side effects and the fact that I am on meds and anticoagulant for Afib. I understand that If you don't stay on the dose long enough after symptoms disappear you are more likely to relapse and the more relapses you have the less chance of cessation of prednisolone
Slow slow taper after appointment with rheumatolo... - PMRGCAuk
Slow slow taper after appointment with rheumatologist
"I don't like taking prednisolone because of the side effects and the fact that I am on meds and anticoagulant for Afib"
So am I - I don't find it a problem. I have one or more tablets to take 5 times a day and they give me a pretty decent QOL.
I think you misunderstand the nature of PMR. PMR isn't the disorder, it is the symptoms caused by an underlying autoimmune disorder. As long as that remains active you will need some pred to manage the inflammation it causes. If it is still active, even at a low level, if you stop the pred then the inflammation will build up - like a dripping tap will fill a bucket and eventually it overflows. It can continue for some considerable time - about a third of patients get off pred because the autoimmune disorder has burnt out and gone into remission in a couple of years, but the majority take longer.
This isn't an illness where you take a dose of pred, it cures the inflammation and you stop taking the pred. You take a dose that is plenty to clear out the accumulated inflammation and then you taper the dose of pred to find the lowest effective dose for you at any particular time, a process called titration. A small number of people are able to taper the dose steadily to zero and stop - but they are the exception. Most people get to a lower dose of pred and then at the next taper step the symptoms start to reappear. Then they go back to the last dose they were OK at and let it settle down again. Then they try a 1mg or 1/2mg drop again to see if it works now. If it does, they can try another drop a few weeks later. If it doesn't, they go back up, wait a bit and try again. It will work eventually for the vast majority if people.
You are lucky in having a doctor who understands how PMR works and is not forcing you to get to zero pred come what may. There are a lot of people who will envy you!
What side effects of pred bother you? Most of them can be mitigated or avoided altogether when you know how. If you tell us, we will try to help you deal with that aspect of life with PMR and pred.
Thank you PMRpro, you make me feel souch more confident ♥️
I think you should trust him, as he sounds like a good doctor. When I got to 5mg pred, my Rheumatologist suggested I tapered at 0.5mg / month and I arrived at zero 10 months later! This was after 6 years of PMR and several flares requiring increases in dose of pred - not to mention the fact that GCA appeared 3 years in..... Like PMRpro, I am also on meds for Afib. (Have a look at a couple of my posts with graphs of my ups & downs in doses and blood levels!)
Wishing you all the best and trusting you will get there in the end.
Rugger what a lovely response, thank you. Sometimes I just feel so alone having the 2 conditions and I am scared of a stomach bleed
Think you might be surprised how many of us have both. My a/fib is due to the autoimmune part of the PMR having damaged the electrical cells that govern heart rate.
Thanks PMRpro. Another question if I may? I went into afib in the early hours of this morning which is still going on. I tend to be very symptomatic for up to 36 hours which really stresses me. I am not sure what triggered it this time, either the covid vac last Saturday or the fact I had to double mask at a work event last night and I was struggling to breathe and talk. I also ate a fair bit of chocolate 🍫 Why does afib nearly always kick off in the night and do you have any tips on how to Sleep, I am dreading going to bed tonight
With episodes that long you should be considering a visit to the ED. Mine rarely last more than a couple f hours and even that is long. Are you supposed to be controlled with medication? If so, t needs tweaking.
I find a dose of a liquid magnesium supplement will often abort an episode it taken at the very start.
It might be worth keeping a diary of food/drink and episodes to identify your trigger. Chocolate and alcohol are common triggers.
My cardiologist noted I am a "nightbird" - or was at one time, Now it is more likely to be the early evening.
PMRpro, my EP said sit it out. I really don't want to be in A &E there has been 23 hour waiting here in the Midlands and people sitting on ambulances for over 4 hours. I have been told to take an extra Sotalol as a PIP (I currently take 40mg 3 times a day) he also said I could take 80mg twice daily instead but ai am nervous as this I think is a high dose. I am going to ask to be put on the waiting list for an ablation as I know it's a long wait! I am supposed to be going to Yorks on Saturday. I am sick of living in fear of the next episode it's controlling my life.What risk am I taking by not going to A & E I thought some people are in afib for days or permanently?
If the heart rate gets too high then you are at risk. I don't go to the ED here for the relatively short episodes I have but I did go once after a couple of hours when I felt really unwell. By the time I got there, it had calmed down! Typical. I have a pulse oximeter and if the heart rate was in the 130-140 range for long or if the episode lasted 24 hours I would be seeking medical advice. Any chest pain or severe breathlessness should send you to the ED too.
But from what you say, your medication needs sorting out
Thanks PMRpro, it has slowed down considerably but still feel it's irregularities. I feel fine apart from this but it does keep waking me in the night when aI eventually get to sleep that is. If you don't mind me asking how frequent do you get episodes and what meds do you take? I will call my EP to get an appointment but last time I asked I couldn't get in until February and that's private. Not be sure where you are but we can't get doctors appointments here and consultants you would be waiting over 6 months on the NHS . Thank you, you really help me
I get short episodes for a few days in a row and then may go a few weeks before another one. They tend to be late afternoon/early evening, just when I should be cooking tea! Or sometimes about midnight,
I take Pradaxa as an anticoagulant, bisoprolol to slow the heart rate down in general (and have a pacemaker so I don't need to worry it might slow too much), and propafenone which reduces the likelihood of the arrhythmia. I also take magnesium supplements - the ones I use are small sachets of liquid magnesium which they use in the hospital for patients having arrythmias rather than setting up a drip which they use if it is bad, They prefer not to do ablations here unless they must because the results tend to be a bit hit or miss and the a/f comes back.
I'm in northern Italy - staying here too until the NHS gets sorted out a bit!
I can see that your meds are very different to ours. Do you originate from the UK? Ablations are very popular in the UK and there is a new procedure just in the news last week that uses mini shock waves instead of cryoblation.
I live in Italy. Perhaps one of the problems with the NHS is that they spend money on procedures that don't have a lasting effect. However, I do know that my friend with a similar a/fib history was put on Flecainide by her cardiologist after other medication failed to give the desired effect and its dose was later adjusted to improve control. The anticoagulant bit can vary quite a lot but is an essential part of management of a/fib.
frontiersin.org/articles/10...
suggests recurrence can occur in up to 30% of cases and that the alternative methods aren't significantly better. The line taken here is that the procedure is associated with serious risks even if they are rare and they prefer to reserve that option. Of course, things have improved in the 7 years or so since mine was diagnosed - maybe they have changed their opinion in that time.
I think there a fair number of users here who would like a Rheumy that sounds as good as yours. I think you need to trust what he says and look at ways, if possible, to mitigate the side effects you get.
Bcol, thank you
He sounds quite eeasonable. Unlike others who say things like it doesn’t matter that you are in pain or your bloods are rising!
Cranberry thank you
He does sound quite sensible to me. 5mg is not a high dose. If you have problems just discuss with him. You could always reduce a little if you felt OK anyway.
Piglette, thank you
I hope it helps you to hear the positive thoughts about your rheumy and that there are many people in the boat with multiple health issues.
I tell you this only to help you~ I have GCA and was diagnosed in 2019. It would not quiet down. They had me up to 125mg daily but didn't want to give me Actemra since I had bleeding ulcers, another bleed from too much Ibuprofen, and diverticulitis. They started me on it three years ago and I haven't had a hitch! I also take heart meds, meds for seizures (seizure free 40+ years), BP, tremors, and three asthma. I'm down to 5 mg of pred now, and my rheumy thinks I may need a 1-2 maintenance dose. That will be ok with me. No gold star for me; I'm just an example of what the body can tolerate.
My quality of life is pretty darn good for 82. Some things cannot be cured but have to be managed and I know you will manage just fine now that all your 'buddies' have chimed in and you're not alone in the boat.💞
Aaaaaarh thank you Grammy80
Hi, I don’t like taking Prednisolone either. (I have GCA) My Doctor actually said to me that they don’t like prescribing steroids as they cause Havoc with your body!! I have been to hell and back since taking them, with chronic back ache, my knees are like footballs, my hair is like straw, and the weight gain is awful!! I haven’t seen my Consultant since last April and think they have forgotten me!! My G.P and I have come up with our own plan and I am tapering at the rate of 1/2 a milligram every month. I have succeeded to get to 2mg from 40mg and am hoping to be off them in February 2023. My CRP marker is 7! and I was told they are quite happy with that!! I elected for the decrease by 1/2mig myself, as slow is definitely the best way to go for long term success.
Cutting carbs is a good way to mitigate the weight gain - how much you need to cut depends but it really does work.
I wish you the best, I got down to 1mg and then had to go back up to 5mg. My CRP was borderline at 5mg. What is your ESR?
I have no idea what my ESR reading is, I never get told anything. I haven’t seen my consultant in 8 months! I had a blood test last week and asked for CRP reading otherwise I wouldn’t have been told that. I will know next blood test, to ask for both readings. Thank you for the information.
Does your surgery have a app you can log into and access your medical records including results of blood tests et ? If not you can download NHS app and get same information.
Thank you for your help.
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