Hope you are all doing well. My rheumatologist is impatient that I stop prednisone, I’m currently at 3mg. She says more than two years without being able to stop is not a landmark of PMR. She insists it’s seronegative RA, but I have no hand or feet involvement. “All her patients are able to eliminate Pred at two years max.”
Last visit she mentioned spondyloarthritis as the label of my disease.
I’m increasingly uncomfortable with this doctor, since she wants me to start on Biologics but I’m worried of the infection risks. I have to care for my mom in a hospital environment very soon and honestly, I’m afraid of COVID, among others things. She doesn’t seem to understand my point and has become a little hostile, if you will.... I’m definitely changing doctors.
Please, your feedback will be greatly appreciated.
Hugs!
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Alliswellforever
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She maybe talking about Tocilizumab/Actemra. It has been proven to be effective in GCA. I have been on it for getting on for a year. I have PMR/GCA and it enabled me to decrease my dose of Pred from 40 mgs to 10 mgs where I am stuck. I don’t think I would have accepted the drug if I had managed to get down to a relatively harmless dose of Pred though. It has its own side effects, as you are no doubt aware. I have had my diseases for 5 years. Very few people are clear of them in 2 years - I fear for her patients! Professor Dasgupta is a renowned expert in our diseases with an international reputation. As a matter of policy he keeps some patients on 2-3 mgs for life because he has found that this prevents them from relapse. My faith in your doctor and her changing diagnosis would be weakening. The important thing is how are you? If you are well on 3 mgs after 2 years then that’s where I would choose to stay ( and you are lucky). If however there are symptoms to suggest that RA is present then I would consider the damage that might be doing. I would research everything and perhaps seek a second opinion. Let us know what happens. You need to consider your Adrenal function which has been repressed by steroid use, at this stage a Synacthen Test would be sensible to ensure that they are capable of working. 3 mgs may well have been holding things together, irrespective of your accurate diagnosis, this will need attention.
Hello dear, your response has enormously helped me to keep analyzing my situation and looking forward to seeing a solution or new path to take. Thank you. I have been on Prednisone for three years now. Also with Fibromyalgia, so symptoms overlap frequently. I’m a 5 out of ten right now in terms of wellness. Always tired exhausted, but functional at 50%. The adrenals is a big mystery for me, since I haven’t done testing. Looking forward to see new doctor. Take care!!! ♥️
Well - there are quite a number of us that have had PMR for WELL OVER 2 years (I'm in my 9th year, others 5/6 up to 14 years). My doctor told me a couple of years ago that I would probably be on Pred for life now. So be it!
To offer a biologic when down to 3 mg, well it beggars belief....do it your way, and with a different Rheumatologist especially with what might be added stress for you....good luck....
Prof Dasgupta says he keeps many of his PMR Patients on 2/3mg indefinitely to keep the PMR at bay.
To introduce a biological or even a DMARD at this point is seems unnecessary as anything below 5mg many Consultants are ‘happy’
Did you see the recent Zoom during PMR Week? It was extremely interesting & talked about long term suffered of PMR. There are many of us on here who have been on much higher doses for a lot longer.
Yes there is a train of thought that ‘Long Time’ PMR Sufferers may well have something else going on alongside PMR such as RA but if 3mg of Pred is holding your pain at bay you are right to question the introduction of a biological & therefore ask for a second opinion.
Your Consultant can’t simply put you on a Biological as it has to be funded & it isn’t cheap, l’m not sure but l think you’ve had to have a DMARD first wether it’s RA or not as well as PMR. You need blood tests to establish if you have the RA Factor (even though she is saying seronegative RA) plus X-rays to show joint involvement.
l’ve just re-read your Post & see you say Prednisone so l’m guessing your not in the U.K? Where the prescribing rules are different but even so l’d want a Second Opinion.
First, THANK YOU! Second, I didn’t mention that my inflammation markers remain elevated (CRP and ESR) even with Prednisone. They have never been normal since the beginning of treatment, maybe that’s her reasoning for Rx Enbrel. I have it covered in my insurance, and that’s a miracle...Haha! She Rx Cimzia first but it was not covered. This is my third doctor, since I have moved, yes, I live in US. I don’t have any tests that suggest I have RA. Everything is normal. So... let the fourth doctor begin. Thank you dear, and take care! ♥️
Better than mine! The doctors did try initially to do something for me as every now and then both go over 100. They just don't bother now. In a way it does worry me as I would like to know why it is happening.
I spoke to someone recently about her experience with Leflunomide, which I am about to start on for 'long PMR'. She was put on it by her rheumatologist because a scan (presumaby PET but I don't know) showed quite clearly she had LVV even though she is symptomless. High CRP can be an inidicator I've heard from others who have LVV so worth investigating?
I am trying to avoid my GP as I seem to have got into this tests loop and I am so fed up of them. If I had LVV for six years surely there would have been some sort of symptom.
Only once in all the years I've been on pred has my CRP ever got to a really acceptable level, and it didn't stay there. Unfortunately it's either/or CRP or ESR, not both in the same test cycle. But in earlier days, before we switched to CRP, the ESR never got properly down either. Doctors who have treated me (2 gps and a locum) have all said to go by my symptoms, not the numbers. If pain and increased numbers happen to go together, as they did a few months ago, then I know I really have to give in and take more pred.
I wish I and my doctors had known that years ago! (go by symptoms). In my case it was symptoms plus moderately high CRP, yet doctors were insistent PMR burns itself out after 2 years so must have gone away and now I was just addicted to steroids, not that I had it anyway because I was too young to have it at 51 etc etc. My CRP never got down below about 16-20 from a starting point of 28, so queried whether that meant I needed more Pred not less. But my ideas were dismissed for years until I insisted on taking more control over what dose to take and got a new rheumatologist. Mine is a long and complicated story. I was tapered down to 5mg Pred within 6 months but absolutely crippled, hardly able to walk. I kept trying to get below 5 as I knew no better (in fact I was told by doctors to get off steroids asap) but it always resulted in flares. Again I queried whether that meant inflammation was still active, but my ideas were dismissed. It wasn't until I found this forum after about 3 years that I realised EVERYTHING I had been told about PMR by doctors was wrong. There are glimmers of hope that things are changing slowly, well some doctors anyway, but more needs to be done to educate both GPs and rheumatologists
It is not just PMR doctors need to be taught about. I have just been out to lunch with an orthopaedic surgeon friend and his wife a gynaecologist and they were telling the most awful stories!
She is crackers if she wants to use biologics instead of 3mg pred! Prof Dasgupta told us last summer he often keeps patients at 2-3mg pred long term as he finds it reduces the risk of relapses. She's also out of touch with current thinking that not only does PMR last longer than 2 years but it is also very heterogeneous in presentation.
is an article and link to a study from the Mayo in Rochester that found the median duration of pred management for PMR is just under 6 years. There are 2 or 3 other studies from the UK and Germany (I think) that established similar timescales but I don't have links for them. My own rheumy says he has a lot of patients on pred long term - most of them at low doses like you - and he isn't worried.
Before I would accept her putative diagnoses, I would want rather more evidence than she is offering. And anyway, you still have to reduce down that 3mg slowly for return of adrenal function.
Thank you Pro for all your valuable information, as usual. Yes, I will be seeing a new doctor soon. I still have CRP and ESR elevated, just like the beginning, even with Pred. Maybe that’s why the Biologics is offered. I am just so tired of dealing with her attitude and her disbelief of my PMR diagnosis in the first place. I was 51 when I was “diagnosed”. So , I am excited and nervous about the new doctor.... fingers crossed 🤞!!! Take care💙
Really it's about quality of life, and if, like me for most of the past six years, your low dose of pred gives you that, why try to fix what isn't broken? A number is a number. Your quality of life, including symptom control, is what counts.
“All her patients are able to eliminate Pred at two years max.” has an arrogance and a threat about it! I would definitely seek a second opinion. I have had PMR/GCA for 7 years. When I arrived at 3.5 mgs Pred. following the very slow taper found on this forum, my rheumatologist informed me I no longer had PMR, that 3.5mgs Pred. would be doing nothing and that I must stop within 2 weeks. This was 3 years ago. The ensuing flare was so much more intense even than the onset and it took a few agonising months and a visit to a rather bolshie Locum to have Pred. reinstated and relief within 7 hours. My own GP did not seem to want to contradict Rheumatologist and prescribed Amitryptiline and codeine. Since then, I have been unable to get below 7.5 and am now taking Methotrexate too - to no apparent advantage. I would be really wary especially especially from the tone of the quote🙄Is it a competition? Hope you get some more patient, thoughtful advice - surely even if it is one of those other things, a gradual Pred. reduction will be the less potentially harmful route?
I hear you and feel the pain and hostility you have been through. You are absolutely right in saying if it’s a competition, and pointing out her arrogance and threat. So on point! Thank you dear for your input. Hope you are able to feel better. Take care 🌹
Yes, it was a well-intentioned effort on my doctor's part to try to get me off pred a bit sooner than I was comfortable with (to that point my taper had been uneventful and I had just reached 1.5 I think). Unfortunately for me this provoked a flare and I honestly think that never since then (several years now) has any of my tapering gone so well as it did in the first couple of years. Had it not been for that hiccup perhaps I would still be on pred but quite possibly at only 1 mg or so. Always trust your instincts.
Are you in the US? It was just that I was wondering what biologic she was thinking of for PMR on the NHS. As the others say 3mg is a tiny dose. Your rheumatologist does seem pretty inept and who wants a hostile rheumie? If you leave her she will probably include you in her statistic of all her patients get over PMR in two years.
You may be right, what a waste of money. She sounds like one of the pretty bad rheumatologists, I just wish there were fewer of them. Lucky they aren’t surgeons.
Enbrel has some nasty side effects. I don’t know how much it helps PMR, if at all. I think you are very sensible looking for another rheumatologist, one less hostile and less inept!!
You are at 3 mg? What's your doctor's problem with that? my doctor told me she was happy with me at 3. I was able to get lower, but now I'm back up higher, sort of at 4 I think, and I now have 3 set as the benchmark I want to get back to. I've been on pred since 2015 and most of that time was actually around 2 mg, sometimes lower for long stretches. Doctor was fine with that. No second guessing the diagnosis. In fact it has been new doctor who strongly encouraged me to increase pred dose as much as I needed when my inflammation markers went high a few months ago.
If the diagnosis is being questioned I would be tempted in your situation to try to get a second opinion if it means alteration in your medication, especially if the low dose of pred has been adequate.
I wish I was as lucky! She is mad at me because, first, I wanted to be able to develop a “good” COVID-19 vaccine response, and I decided to delay the Biologics, then I have to care for my mom’s surgery, I’m an only child and I have to fly overseas to help her. Not every hospital has the hygiene and protocols that exists in the US, that is the reason I wanted to delay it as much as I can. I get extremely anxious in a hospital because of germs etc. She was such to even say, “ it is what it is you wear a mask and be careful “ when I was explaining to her my reasoning... imagine THAT
Well..after more than 9 months of differing levels of Prednisone for PMR without ANY reduction in symptoms, I found another Rheumatologist who agreed I was “textbook” PMR. She increased the dosage to 15 mg./day (when my previous doc had me at 10 mg. for months and one of our brilliant Ambassadors informed me that was too low a level to help. She was right!) Yet, when I began taking 15 mg./day for two weeks, there was no effect…. I had MRI’s, x-rays and blood work performed. Her preliminary diagnosis is spondyloarthritis, along with osteoarthritis of the SI joints. She believes I have Ankylosing Spondylitis.
I had two infusions of Simponi Aria (TNF inhibitor) at a cost of $35,000 (for both), yet, again, it did nothing to help my pain. It is frustrating but I am currently down to 3 mg./day of Prednisone and am reducing by 1 mg./every two weeks (with her blessings). The side effects of Prednisone were too much for me, especially considering it never helped anything. I believe in second opinions and while I understand that adding Biologics decreases our immune system drastically, I hope you will do what’s best for you. I think we just have to keep searching for the right diagnosis and medication. I wish you well on your journey. It’s not for “the faint of heart”! 😘
A... thank you so much for your sweet wishes. Same back to you. I am sorry that your case appears to be quite complicated. These immune conditions are very tricky, even for doctors. But we as patients know a different angle that doctors don’t know... we experience the illness. All day. Every day. And that is what gives us a little bit of more insight in our own health. Hoping you get your diagnosis and the best treatment. Take care🌹
Thanks for your well wishes! I WILL get to the bottom of it… Our bodies are complicated and I know my issues are mechanical (due to auto accident injuries) as well as physiological. We just have to take it “a day or a moment at a time”. Enjoy the good moments and sleep through the rest? Blessings to you!
It doesn't directly come out of your pocket though so it is actually up to the fundholders to work on that. The USA contributes to the high cost of drugs because the insurance companies don't present a united front. One of the big things about the NHS is that it is such a massive purchaser for all sorts of things so can have a big say on price.
Sorry you went down the old rabbit hole. As DadCue will attest, there are newer biological which are Interleukin 17 (IL-17 and IL-35) which are different and may help me more.Due to Medicare in the US, I didn’t pay a penny. But the research costs are prohibitive and, of course, Big Pharma has their greasy little hands in it, too.
Well…my comments about Big Pharma were directed at the prohibitive costs of medication in the U.S. We have to go to Canada or Mexico to obtain reasonably priced medications. I agree the corporations require BIG bucks for research; however, many have tried to get reasonably priced drugs, which were developed years ago, lowered by Big Pharma in our country to no avail. It is sad here. Don’t know about where you live.
I said somewhere else - part of the problem is purchasing power and there socialised healthcare has some plus points since one purchaser negotiating for an entire country does have some clout - more than an insurance company looking after their potential needs.
Found a study showing that in general the profits of pharma companies are higher than other companies. I'm not going to go into any more detail as I've had enough of making mistakes and being kicked for them today, (I've had a brutal headache and should have kept quiet) but we do know for a fact that there are certain individuals involved with pharma who are plain and simply avaricious, If they were not, insulin, for example, would still be an affordable medicine in the US. And we wouldn't even need to have a conversation about making coronavirus vaccinations affordable for the world.
Totally agree. I have a health insurance that has a $15,000.00 deductible. You heard right. I have to pay 15k first in drs appointments etc. to be able to be covered by the insurance... nasty
Hi Alliswellforever, If you havn't done so already, might is suggest that you ask on this forum for recommendations for your next rheumotologist?. I had to move after 2 disasters and from this support group was given some brilliant options- I am finally on the road to proper treatment with the new Dr. Best wishes to you.
Thank you for your suggestion. Thing is I am moving again for husband’s job, but we still don’t know where to. Can’t wait for an update on new direction. Take care 💐
I don't think this is my conversation. We don't have pharmacare in Canada. They do in the UK and probably in Europe, but I don't know anything about that.
Yes, which prevents access to some drugs. And the item I linked to states that generics are more expensive here. I somehow don't think Canada's policies, wth 1/10 population of US, is inflicting much damage on big pharma! However, in the words of the South Park crew "blame Canada". What's to stop US fed gov from regulating prices?
The only thing stopping the US government from regulating prices is due mainly to our legislators receiving “dark money” in the form of support from a well-funded group of lobbyists (I’m talking millions and millions) and drug manufacturers to their election campaigns. Then, they become indebted and are controlled by both the corporations, who enjoy unbelievable profits, and refuse to vote against “Big Pharma”. That’s the “short of it”. (Hence, the reason for SOME of the awful tensions between the Democratic and Republican parties).
I still think you mean these comments about insurance and so forth to be directed to PMRpro not me as I didn't say anything about insurance or purchasing power.... We don't have socialised *pharmacare* in Canada, despite promises by successive governments for decades. We personally have insurance, private, through my husband's retirement plan, for which we pay hefty premiums.
Well it's just that you quoted another participant's comments when replying to me so I have been perplexed! I'm not thinking very clearly today as I've had a bad headache. Probably the approach of Claudette or whatever the tropical storm is called....Time to call it a day. 😴
6mg at the moment, I have taken Pred at around 02:00 ish for a long time now. However, at the moment I also have a poorly bowwow whose medication schedule starts at 02:00 and finishes at 22:00 on pretty much an hourly basis, couple of 2 hour gaps. So life is bit "interesting" at the moment.
We have two and wouldn't want to be without them. Typically, of course, they are both here with me curled up fast asleep and gently snoring!!!!!! Joey, bit of a cross, has an abscess in his left eye and is facing the possibility of losing it which we are desperately trying to avoid. The other is a Border Collie. Both just over 11.
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