I’ve been having a “flare” for about a month, I was at 9mg and eventually GP suggested going back to 10, didn’t help, 12.5mg… then 14mg and then 15mg although the GP said himself he didn’t really know much about my condition and “googled” it there and then when I went to see him 🙄 told me to stay on 15mg and to come back to see him in 3 weeks also got bloods taken! Well fast forward 3 weeks 15 was better but still not pain free.. so I went to 16mg and I’ve been ok for the last 2 weeks, review appn today… wow 😡he’s told me 16mg is too high and the max they can prescribe me is between 10-15mgs…😮💨😤 told me he wasn’t sure what to do and that he’d call me back once he’d talked to a pharmacist!?!?!? Wtf? I’m just at my wits end now what am I meant to do?
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Mercat
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Oh dear! He is wrong. Some people need 25 mgs to obtain relief from symptoms. At least he’s trying, I suppose. Steroids really worry the medical profession. I am not sure why, they are such a necessary and effective drug and the side effects are not as alarming as a lot of the newer drugs and many of them can be mitigated or treated. They are the only drug that works for us, you need the correct dose and once your symptoms are under control, then you can think about tapering down to a lower dose. Have a look at FAQs ( accessed on this page on my iPad) to learn more about it and so that you can educate your doctor. PMR is normally treated at primary care level but with your doctor, I might be tempted to ask for a Rheumatologist referral.
Thank you for your reply 🥰 I’ve calmed a bit down now from this morning I was just so upset and feel like I’m doing this all on my own! Yes I got the impression from him he was pretty much out of his depth and somewhat raging I’d gone up 1mg more than he suggested! He went through all the bad side effect from long term steroid use to me!!’ Yes I know I have read all these but what else am I meant to take if that’s the only medication that helps!?🙄🙄
He tried to call me and left a voice mail to say he’s not referred me to Rheumatology and to call back if I need any further advice !?!? 🤔
Tell your doctor that you know a person that was started at 80 mg/d! I usually don’t get emotional, but I did after I was prescribed 30 day supply of Pred. at 60 mg / day after day 2 @ 80 mg and given the name of a Rheumy to manage me. Called number given, Rheumy can’t see me until 90 days out. I call my New GP (prior to episode my “New Patient” physical was scheduled 45 days out) and couldn’t get an appt before then. Called my son-in-law’s mother and got her Rheumy info. He couldn’t see me for 120 days! None would consider renewing my Rx at end of month until they saw me😳 I called the GP Office back, apologized and told this assistant the run around I’m getting and knowing my New GP (via my wife) I can’t believe she wouldn’t work me in IF she knew my circumstance. In less than 5 min I had an appt with her in 3 days, and then she arranged an appt with a Rheumy the next week!
So, that made me a bit emotional. The disease didn’t after the pain got knocked off. I started reading everything I could and increased it as I saw fit. My mindset being if some knucklehead doctor didn’t hesitate to give me 80 mg, that me increasing my dose by 5-10 mg as I was tapering from 60 mg to control the pain wouldn’t kill me. As to side effects I also had reached out to my Optometrist letting her know about the Pred and she put me on a 3-month routine visit to monitor. My Rheumy got a little miffed, chastised me saying to call him first. Of course when I went off “his” schedule it was always on a weekend his office was closed, so (ok, so I fibbed, shoot me). But I wasn’t really concerned I knew if my Rheumy ever refused to renew my Pred Rx my GP would fill it. I mean that is really the worst potential outcome. I read in one of the publications it’s recommended not to exceed 24 grams total accumulated dose. That’s 24,000 mg. Even starting with 80 mg/d and tapering down & up for 2.5 years my total was 18 grams. 5-6 yrs is now the forecast average life including a year to address AI (I had no AI issues with the DL simple taper and following the max 10% decrease as low as I possibly could (0.25 mg was the smallest step I could do. This step was probably really 0.25 +/- 0.7 mg. Have you ever tried cutting a 1 mg tablet in quarters.🤷🏼♂️😄
Um - I'm pretty sure I am well north of 24g accumulated dose!! In just the 2 years from just before Covid until just after my husband died it must have been over 10g, another 6g plus in the following year - and that is just 3 years in a pred career of 14 years in which I was only below 10mg/day for a relatively short time.
…and yet you’re still alive and functioning! Just goes to prove a point that Pred isn’t as dangerous and doctors portray, or statistically speaking you’re an outlier in the data pool? That’s probably what my Rheumy would say. Lol
and a more recent treat to target paper from the same lead author backs the use of the dose that is required to be symptom-free though it doesn;t discuss dosage and refers to the first paper,
Thanks so much for these links I’m going to print them off and take them with me or maybe send them to the GP!
I’m going to continue on 16 mgs - he’s referred me to Rheumatology which I think has a 9-12 waiting list for our hospital!? So with no advice from him or what to do in thr meantime I will just go along with what I think is right and taper down very very slowly! By the time I get my hospital appn I hopefully should be a bit more stable!🤔
If you GP is having to ask a pharmacist for advice rather than knowing the right treatment themselves, you need a second opinion from a doctor at your surgery with more experience of treating PMR and more experience and knowledge of medicine in general !!!Ask to see someone else at your surgery , and request an urgent referral to Rheumatology.
I was totally taken aback when he said he’d need to speak to a pharmacist 🤔 he has left a voice mail to say he’s referring me to Rheumatology and to get back to him if I have any questions 🤔 well not much point in that is there because he has no idea!!!🙄
No there isn’t much point! … only question would be “how long before I see a Rheumy” but he isn’t going to know the answer to that either…so best stay with us…
Exaxtly!! Honestly don’t know where I’d be with you you all , knowing your not alone and able to ask for advice from people who understand and know what they are talking about helps so much 🥰
I would give it a week or two for the referral to get through then ring the hospital. They should be able to tell you how long you will have to wait. My hubby went private as our hospital had an 18 month wait! That was on an urgent referral.
I got in straight away because the GP sent me to the urgent assessment centre for GCA so I jumped the queue.
This group was my Godsend. Cut my research time in half or more and learning about and switching to DL’s Simple Taper was the best thing to happen to me! I printed at least 5 papers and gave them to my Rheumy to read. I don’t know if he did. The criteria that worked “for me” was no pain. I found the dose that kept me there. If I felt a twinge, I increased the dose, period. I had a few side effects, all were easily managed. I was retired so, there was nothing that couldn’t wait imo. So, I still did what I always did, but didn’t do it as intense or for as long before calling it quits. No problem. I really didn’t freak out about the disease, more of a nuisance than anything. Fortunately no GCA!
That was my thought , has Mercat got enough Pred at the moment to keep taking what is required , or will they get a problem when they try to get a repeat prescription.I can't believe this , I've never heard of a GP admitting to or saying they'd need to check with a pharmacist before.
That’s what happened to me the GP seemed to have had knuckles tapped re quantum of pred being prescribed and had to go consult a pharmacist apparently 3 times in one consultation re how many boxes of pred I could have. I sensed that there had been some controlled drug review in the surgery. They wanted me to take less to reduce the amount they were prescribing despite the advice of the rheumatologist.
What is that, “…first do no harm?” Putting someone in a situation of harm from a sudden withdrawal of Pred by refusing to refill a Rx? Good way to have lawsuit brought. Think they’d risk it?
Just not good enough is it - is there another doctor you can see ? I've gone through many idiots and totally understand the feeling of being alone in dealing with this. Stick to your current dose for now - as other have said it is probably too low
I’m sorry you’re having such a battle to receive the right treatment for your symptoms. I too had a huge wait to see a rheumatologist (15 months) which seemed forever given how much pain I was in.
It’s not for everyone but I went private (Nuffield). Really was the best £240 I’ve ever spent. Seen within one week. Likely Diagnosis, treatment plan, tests arranged (at GP) and follow up in same appt…. He even gave me a nhs prescription!
When the nhs appt came round I cancelled it and I still have periodic catch ups with private one (telephone) for a minimal charge. He then writes to GP with next steps.. As say not for everyone
I've also experienced similar dismay after doctor's appointments, even after rheumatologist appointments, and left feeling that they haven't a clue, that I am not being listened to, heard or understood either, and that I am doing this alone. If you read the posts in this group, it doesn't seem to be an uncommon experience.
I know what I would do in your shoes and it looks like you are already going to carry on with the 16 mg. I can't see that 15 or 16 mg is going to make much difference in terms of side effects and if that is what you need to have a reasonable quality of life, then that is what you need. What they seem to really not like is when you yo-yo from low to high dose and back again, because it adds considerably to your overall cumulative dosage and may mean that you have to start tapering all over again. But it sounds like you still hadn't found the effective dose for you to control your symptoms yet, so you weren't doing that.
Good luck with the rheumatologist appointment, when that happens.
What a jerk he is and full of it. I started flaring two or so weeks ago and my new GP bumped me immediately to 20mg which is where I started 2 years ago. Her idea. Then after a month drop to 17.5mg. Then another month to 15, etc. Which I think will be ok. I didn't want to argue as it took 2 years on our provincial list to get her. I think the 20mg was a good move, in hindsight. Any chance of you getting a private consultation --or a new GP? We here in Nova Scotia have to put our foot down and advocate for ourselves which I've done. If 16 is your number I would stick with it for now. Sometimes pharmacists know better. Our bodies know best. The "Google" thing HE did in front of you is worrisome. My best advice is to follow PMRPro's advice and not tell him. Keep us posted. All the best.
I really don't have a problem with a doctor googling a disorder - that at least shows they know they don't know it all. In fact - the good doctor in my UK practice who did recognise PMR was in the process of teaching her colleagues how to use google well. Because HOW you use it is crucial.
That's true Pro. I once had a doctor accuse me of googling for the symptoms of a torn retina, which I actually did have. I told him I googled the symptoms I have. It had to be lasered. I will say in his latter years of practice he might have needed the googler as well. Thanks for your POV on this.
So before Xmas I had been ref to Rheumatology… I got a call from GP practice a few days before Xmas saying they’d heard back from Rheumatologist and to make an appn after Xmas!
Decided I didn’t want to see the same GP because basically he hadn’t a clue… so yesterday got an appn with a locum GP who used to actually work in the practice but retired and now is back as a locum 🙄 anyway… letter back from Rheumatology was a tad dismissive!! Basically says I’m too young (50) and my inflammation markers have always been ok… and then gave the GP the “Nice”guidelines to follow… and suggested I be checked for “PMR Mimics” 😳 noted that my Vit D was low,,, and has asked for my Anti-CCP to be checked? (What even is that?)
So GP has said not to get caught up in what my diagnoses is… he’s happy for me to do my own tapering and suggested 1mg at a time, he’s booked me in for “shopping list” of yet more bloods to be taken and sent me on my way….
So I don’t even think I’ll be seen at Rheumatology now 🤔 and once again i feel I’ve been left to get on with things!? 🥺
Apart from the "50 is too young and normal markers" rubbish, it is a fair enough letter. If vit D is low, it can actually cause very similar symptoms so absolutely the first thing to do is correct that with a short course of high dose vit D (8-10 weeks at 60,000 IU per week). Anti-CCP is a very good test for inflammatory arthritis, far preferable to RF (rheumatoid factor) and if it is positive means that it is far more likely you have LORA/EORA (late onset RA) than PMR:
If the GP hadn't done a differential diagnosis.looking for PMR mimics, things that can cause similar symptoms but aren't PMR. then they were remiss in referring you without doing their gate-keeper role. The rheumy departments are snowed under so it is up to the GPs to at least make an attempt by requesting the relevant blood tests that are available to them. Even I could do that!!
There are no NICE guidelines really. Prof Mackie says they are articles written by professional writers which are linked and really don't have much consensual backing.
Yes over all I’m happy , the GP is really lovely and I came out at least feeling that I saw a doc in real life and he did have me in for 30 mins!! I’m just a bit worried about it is PMR I have and not something else 🥺 I had worried about RA right at the start of my symptoms but bloods taken showed I was ok 🤔 I take it this Anti CCP obviously wasn’t taken then? , he has told me not to get caught up in worrying about a diagnoses and to just deal with my symptoms… which at the moment seem steady , hopefully start tapering next week (very slowly) 😊 He’s give me Calci-D (1000 mgs) to take daily… how long would it take to feel the effects of these?🤔 do think that dose is too low then?
Many thanks for your reply PMR Pro I do appreciate all your help 🥰
You won't FEEL a difference with the calcium - is that what you meant? He may be under the mistaken belief that a negative rheumatoid factor means it isn't RA but that isn't the case. All you can do really is to start the pred, see how you do and then how you get on as you start to taper. It isn't a hard and fast rule. but if it is something else it may be harder to reduce the dose and in some cases the response to pred is slower and only partial.
It was the Vit D I was wondering when that would be noticable to me? I’ve been on Pred for over a year now had tapered down to 9mg but back to 15mg now and planning to go to 14mgs starting next week (hopefully) 🙌 just worried it’s not PMR and I’ve got something else 😟
There are no definitive markers for a diagnosis of PMR but if it were to turn out to be something else, there are usually signs in the progression of the taper and control of your symptoms. To some extent it is faith.
The ordinary calcium/vit D supplements are a very low level of vit D and if you have a very low vit D they are unlikely to raise the level much - do you know what your vit D level was?
No I was told end of last year it was low but then told most Scottish people have low Vit D and wasn’t given anything for this? The letter from Rheumatology said he’d noted that my Vit D levels were very low 🤔
Most Scottish people DO have low vit D due to the lack of sun capable to producing it in skin - that doesn't mean it is OK and shouldn't be rectified. What a disgusting attitude!!! It isn't horrendously expensive - I take 4000 IU per day to maintain my vit D level, any less and it slowly falls over a period of months. And I live in northern Italy where theoretically the sun can produce vit D in skin almost all year round. There is still a very high rate of deficiency here because we keep out of direct sun a lot of the time, cover up or use cream to avoid burning - or have a suntan which also reduces the effect!
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