I paid to see my old, now retired rheumatologist for his opinion as my NHS rheumatologist has been faffing about telling me I’m too young for PMR which caused a 7 month delay in a diagnosis. He finally ordered a pet/Ct scan which confirmed PMR but I thought I’d go and see the private Rheumy anyway as I have Ankylosing Spondylitis.
i wish I hadn’t. I wasted £280. Long story short, he said he wouldn’t want to label anyone as having PMR let alone someone my age. He said “we aren’t even allowed to diagnose it in people age under 50”. He said that he felt my problem is perifieral AS. He said he wouldn’t have prescribed methotrexate for it. I showed him the pet/Ct scan where the results were an emphatic “this is PMR”. He said, “well it doesn’t matter what you call it, that’s just academic”. He said the other Rheumy shouldn’t have stopped the biologic injectable I was on because that would have dealt with it if it was AS or PMR. He told me to go back to the original Rheumy and do what he says.
So, I saw the original Rheumy. I find him difficult to work with so I didn’t tell him I’d seen the other guy. I asked if he felt that this could be periferal AS. He laughed and said no, it’s PMR, it’s definitely PMR because the pet/Ct is the best test we have fit it and the result is definitive. He’s in his late 50’s and he said he’d never seen PMR on a pet/Ct scan in such a definitive way in someone so young. When I first went to see him about this PMR , he said it definitely wasn’tPMR because I was too young.
Anyway, the end result is, he wouldn’t give the biologic drug back even though my CRP was starting to fall after 6 jabs. I can’t tolerate the steroids so the next step is Methotrexate which I’m going to have as an injection. I’m terrified of it but I’m practically bedbound, so…. The leaflet said that Pantoprazole is contraindicated. He said, don’t worry about it. Will it be ok?
I’m 100% convinced this is PMR. Although the stiffness is similar to AS, the pain is completely different and nothing like my AS.
thanks for reading my whinge!
x
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Bramble2000
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Your former guy sounds a bit out of touch, your current one a bit of a twit in people-relations. On the other hand - he has accepted the lesson of the PET-CT.
"shouldn’t have stopped the biologic injectable I was on because that would have dealt with it if it was AS or PMR."
Sorry, no it wouldn't. AS is managed with anti-TNF biologics and they are expressly warned against in PMR because they have little or no effect but considerable potential adverse effects. It is possible that they might have some minor effect in some patients - there is some evidence there is a bit of a role for TNF (tumour necrosis factor) in PMR but very small,
What were you on? Humira? Humira plus MTX might work though and worth trying.
Sorry , you probably talk about it in previous posts but could you say , were you taking the Biologic for the AS and what type it is?You are , as DL says, between a rock and a hard place as it appears from this post because you need to treat both your AS and your PMR at the same time. As even if it is PMR which is causing the primary cause of your pain and inflammation at the moment , the inflammation and symptoms caused by AS will also be present and adding to the overall picture both now , and as you try to maintain your treatment.
Which , like you , makes me a bit confused that they think it is necessary for you to stop the Biologic treating one condition because they need to start Steroids or MTX to treat the PMR.
Biologics as far as I know can be , and is often, taken at the same time as steroids , and/or MTX, especially if you are using it to help you taper off steroids and control the illness you took those for.
The Biologic , depending on what it is , and what it was for, would not necessarily be the right type to treat your PMR. From my research into this for someone else I know that the best Biologic for AS is not the same as one you could use for GCA but that would not mean that you would stop this treatment for one condition just because you may need to start steroids or MTX for another one . In fact , the supervised treatment of both conditions at once is surely more likely to produce a more successful response and help manage both of your conditions.
There does appear to be one Biologic which can be used for AS which has also shown to give improvement in very small studies for GCA ( although it's not generally the first option for either condition). That is called Etanercept . Of course , no biologic is currently approved for treating PMR alone , but it may be an option worth discussing with your Rheumy before beginning MTX (or trying alongside it) because you are not only treating one condition and you were relying on , and , getting a good response to a biologic treatment prior to the PMR diagnosis.
It's one fight that I personally find most frustrating while dealing with my own treatment. Why do they think that we can only have one condition causing an issue at a time and a new diagnosis means that they only treat that and not the whole body . If you have lifetime conditions like AS they need to be managed all the time and prevented from being triggered or getting worse when a new condition appears , not just suddenly ignored or forgotten . Especially if while trying to find the best option to treat your AS you proved that you don't respond well to steroids , and you may not be able to cope on MTX alone. Just stopping your biologic to replace it with something they assume will help both of your health issues really doesn't show joined up thinking or consideration if how these changes will be effecting you.
Did they give you a medical reason for this biologic therapy removal?
I'm not surprised you are confused , I certainly would be.
Maybe a second opinion from an NHS Rheumy would also help , or with the Rheumy whom was originally involved in your AS treatment with the Biologic ( if that wasn't the retired guy with the outdated knowledge of PMR!) I think it really needs more discussion.
MTX is often used together with a biologic because it reduces the likelihood of the biologic stopping working, or at least, extends the time until that happens.
I’ve had 5 biologics before and never been given methotrexate. I’m going to have to try the M because I can’t take the Pred. I’m no longer on a biologic.
the biologic was for Ankylosing Spondylitis but in recent ish previous MRI, it’s not active in my SI joints, hence it being stopped. I think there’s a lap over however, I think primarily my problem is PMR at the moment because it was crystal clear on the pet/Ct scan. So, because I can’t take the steroids, the next thing is Methotrexate which I don’t want to take but it seems I don’t have a choice. It’s incredibly frustrating that two different rheumatologists in the same NHS trust have come up with two different answers though.
I guess that the only option is beginning by taking the MTX and keeping a really good symptom and side effects diary as you go.If it's not helping much , or you don't feel you are tolerating it you will have been put through the mill but you will have that evidence there to prove you need extra help.
You could always bring up the possibility of taking Etanercept then , especially if you feel that the PMR is triggering an increase in your AS activity again as time passes.
Or even discuss the Etanercept/ MTX combo to start from the off if you feel confident enough to do that , as they say , there's no harm in trying .
Take it easy and I hope you do get better results from MTX than you did on steroids , many do , and it will help your stress levels and ability to cope with the new treatment if you can relax and try to concentrate on the potential positives rather than the negative as you begin.
Only vaguely related to your question, but I thought pmr was a "diagnosis of exclusion" - I had no idea it could be detected from a PET scan. That's interesting.
It can indeed but from what I understand from my rheumatologist, it’s quite rare. This was ordered because my rheumatologist thought I was too young for PMR, I’m 52 now and mine started at age 50.
I started age 51 and it’s certainly PMR! Why are you unable to take Steroids, that’s unusual? Many of the side effects can be managed with diet, some supplements and some activity changes. I am currently on Actemra which has worked very well for me. However I don’t think you can get that for just PMR in the UK.
May I ask what side effects you get with taking oral pred, please? I’m wondering if it’s possible to do something about the side effects so you can take it! I think it may help others on this site to help you, too. Thanks.
Drenching sweats, a sort of internal buzzing feeling, inability to sleep more than a few hours, intense feeling of doom, blood sugars doubling, the munchies.
oh…OK…but you’ve probably realised by now, reading this forum, that lots of us have those same problems. The munchies…I’ve put on 3 stone (& was overweight), the drenching sweats meant I go out with a tea towel wrapped round my neck hunt theyve lessened since I got to 4mg pred. I don’t sleep more than 4 hours a night. I was pre diabetic, blood sugars issue, still over the mark in my latest blood tests. The feeling of doom, yes, been there, too! If you look at the FAQs, you will see lots & lots of people suffering all those things!! But I appreciate it’s different for you…I guess you would rather avoid those things than be able to do more in life. I think most of us have found that, although those side effects are lousy, not having pred was much worse, & left lots of us virtually bedridden. Pred has been described as a near miracle by a lot of PMR sufferers, as it enables us to walk, to be alive, to do things we couldn't have before we were diagnosed. I guess you will say that we chose the side effects!! No, we hate them, but in this forum we are all together in our hatred & manage to jog along (not quite jog) & at least do more, despite the side effects…my worst one is the ‘deadly fatigue’ that a lot of us have!! Personally, I am likely to be asked to take methotrexate soon (diagnosis of RA), & the side effects of that drug sound worse!! Lots of info about methotrexate in the FAQs, btw…I’ve been reading it up! Life is all about making choices, I’m not criticising you for yours,nor saying mine are better…but “practically bedbound” is not good at all! Take care!
my bucket is full. Recently, I’ve been through something that I would describe as one of the worst things a person can go through. I have also been homeless with my son. I’m pretty sure all this is what’s caused my PMR. So, my bucket is full. When I take the steroids, my bucket overflow and everyone around me gets wet. I’m also a full time Carer for my son who is 18 and has severe ME. He’s arguably in a worse state than I am and he’s completely reliant on me. I cannot function on the steroids. I will try Methotrexate. Beyond that, who knows. All the best to you. X
Sympathy, it must be hard being your son’s carer when you are virtually bedbound. I hope you are getting all the help you are entitled to…not just allowances, but medical help, for him. Sad that his life is so sad at his age. Good luck with the methotrexate, hope it works for you. S x
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