Finally had a consultation today with Dr Max Yates here in Norwich. We got on fine but I did feel that he had moreorless decided (having read my notes before I went in) on the course of action presumably unless anything I told him raised a flag. he did a general exam and
He was quite brisk and although I normally can keep up quite well, I did feel a bit 'lost' by the time I left. The things I am certain of:
He wants to get me off Prednisolone (currently 8mg) and to consider joining an upcoming clinical trial. Of what I am not exactly sure. He mentioned biologics(?). I asked him to explain but I couldn't really follow the answer. I asked where I could find out more and he said that the trial team would contact me. I presume that I have just agreed to getting more info rather than actually taking part. He also mentioned Methoxotrate as a possible alternative but we didn't talk much about that.
That he is keen on clinical trials that will help research generally - not sure how much how it affects me counts but benefit of the doubt and all that, I will give the trial a fair hearing.
That he said that the long-term use of steroids might be what is causing the stiffness rather than PMR
That I need to continue/increase my stretches (only 70% flexibility of my leg)
That I should try and decrease steroid dose as soon as I can even if my eg muscles are stiff
Anyone know about the biologics?
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marionofnorwich
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Currently the only biologic that has been trialed in PMR is tocilizumab/Actemra and even those studies are relatively small - it is unlikely that the company will fund fund scale clinical trials because it is now out of patent so they won't get their costs back from all the very expensive process of applying for approval. I'm not in the UK and I am on it because I was stuck on well above 15mg after 13 years of pred - in the 4+ months I have been on it I have got to 10mg pred without problems so far. They aren't a cure but they work directly in the process that creates the inflammation and in many cases that does seem to encourage remission of the disease process.
I know another pharmaceutical company has something in the pipeline but I didn't think it was that close to that stage. Maybe there is another. You won't get any worse treatment than not being on the trial, if you see what I mean. Usually they are blinded trials - neither you nor the doctors etc know whether you are on pred alone or the drug they are trialing. If you are on the placebo then usually you are switched to the "real" stuff later. I think there are a few people on the forum who participated in the tocilizumab trial for GCA and they could tell you about the procedure.
What does happen in clinical trials is that you are monitored very closely - you won't have any trouble getting in contact with your medical team!!!
He did say that the trial is due to formally start later in the year and also he mentioned something about the drugs being out of patent. Anyway, I will no doubt hear something more about it. I don't think he said which biologic - so presumably I continue on Pred but try and reduce, with or without the support of the biologic, which I don't mind trying once I know a bit more I guess
Oh - it may be an extension of the Germanic and French studies already done with tocilizumab. Look forward to hearing more about it. My rheumy was part of the Germanic study - based in Vienna or Graz, not sure which offhand. That was in newly diagnosed PMR but there is a French study in hard to treat/relapsing PMR which has yet to report butis looking good he says.
When you think how long I have been on pred there has to be a role for biologics in PMR even considering their cost when they claim such downsides to pred.
Glad all went ok. Be assured everything discussed, and treatment or trials will be sent in writing to GP and you within a week or two....Good luck.....
To be honest, I am not sure. he definitely said something about drugs and patents but in which order, I don't really know! I expect it will become clear
I hate coming out of a medical appointment feeling stupid and bemused. I hope your guy was just having a bad day. My Rheumatologist is a great communicator but like many of us I have “ Pred Head” a kind of brain fog that interferes with absorbing and retaining information. I was concerned about my most recent Rheumatologist appointment, I wanted to maximise the benefit . I had a lot of issues to raise and was concerned about going to visit family in Australia for 6 weeks. I got my husband to jot down the issues, he kind of interviewed and prompted me. He then accompanied me to my appointment and was made to feel very welcome. This rehearsal really made the appointment useful, she even took his notes away, to help hers ( he’s very concise and to the point). I was satisfied that I had received sound advice on everything that was worrying me. She has also arranged a couple of investigations. She gave me advice on the long haul flight too. I was walking on air, but she is special.
It must be a Tocilizumab trial! I was on it for 12 months and reduced from 40 mgs Pred to 10 mgs in a short period of time. Unfortunately I had to terminate the treatment due to diverticulitis.
I wear a knee high compression hose all the time period they have firmer compression on the instep and inkle with more flexibility around the calf. That makes some much easier to get on. They will increase you're endurance with the little ones. Sometimes I wear a velcro wrap on my right leg. If you want information regarding either let me know.💕
They do ones that look more like men’s socks on Amazon. Ensure they mention flights and have some medical credentials . I believe that flight socks are different from something you might wear following a varicose vein operation Or similar. I read that while researching. I paid £21 for thigh length open toed flight stockings from a reputable company. I could have got something much cheaper. It was the fact that they were stockings above the knee.
I'm just hoping I can manage a flight to Cairns, Australia to see my daughter and sparkly new granddaughter. Recommendations please..... I am dwelling on going for a month and staying in a hotel with my dear Liz for a quiet week and then unleashing the awake version of me....
Oh wow! The happiest days are when babies come. Congratulations Grandad! 💖I asked my very experienced Rheumatologist about my long haul flights. The biggest danger is deep vein thrombosis, blood clots which can kill. She advised good quality, thigh high compression stockings for flying, reputable make, no wrinkles in them. I am getting footless ones - less claustrophobic. She also advised moving the ankles and getting up and moving when you can. We are at a slightly higher risk with Vasculitis.
We have opted for Business Class. Eye wateringly expensive but possibly a life saver, enabling you to get your feet up. If you shop around you can get bargains. Korean Airlines has been fantastic in the past - half the price of the others. Not so much this year. Singapore was the best we found. Staying there for 2 nights and Sydney for 2 nights then on to Coffs Harbour on an internal flight.
Thank you for your advice Jane Yes it really is lovely having a Granddaughter. We get the video clips and often use Facetime or Facebook to chat and get gurgling noises back!
We haven't been to Cairns yet as life has been up and down since we left America. Just way too much on but luckily that's settled now.
It wasn't so much that I felt stupid or bemused more that he talked about things that I didn't know about (such as biologics) so I couldn't keep up. He did listen to me but as I say I think he already knew what the outcome would be and really most of what I told him was irrelevant, genuinely although it holds many clues for me personally. Sorry to hear that you didn't tolerate the treatment well though
Good luck to you and I sure hope you get to participate...I would in a heartbeat. Biologics, Actemra, have done wonders for me; takes time and patience.💕 I've been on Actemra for three years, stubborn case of GCA and wouldn't be down to 6 without it. I also have diverticulosis but it has never bother me, never know.
Gosh! Mine is in some degree of hurt every day. They only saw “ age related diverticulosis” during the colonoscopy I had about 6 polyps removed and apparently it is a side effect of Tocilizumab and you shouldn’t have it if you have Diverticulosis because of the stomach tear danger. This is the advice I received. I cannot eat or drink so many things. I still have Tocilizumab ( Actemra) in my fridge. I tried one dose after the diagnosis and experienced significant extra pain. I hope I am correct. No extra tests were done. Do be careful!
Initially I felt excited and positive. I hadn’t expected the colon side effect with an injection. I am still glad that it reduced the steroid burden though.It must have been a frustrating experience for you.
Good morning, l saw my rheumatologist last week and agreed to take part in a research that is being done in partnership with Oxford university. I have some information that l have yet to read about it. Maybe yours is part of the same research.
Is that the research Fran Benson was asking for volunteers for? I am excluded because I am a patient of Dr Mackie. I always volunteer, it’s the least we can do to fight this disease and raise awareness in my (humble)opinion.
Me too Jane. I take part in all research I’m eligible for. The latest one eliminates us as we’re patients’ of Dr Mackie’s. Have a great trip to Oz. Wish we could go.
good morning sorry for the delay in repreplying l have been a bit out of things due go a steroid reduction and waking up at 2-30 am. The study is UKIVas and is the university of Oxford and University hospitals Dorset. Looking at Vasculitis susceptibility and patient outcomes study. They are recording data to record information about potential disease risk factors including genetic and environmental outcomes. They say it will be the first patient registry for systemic vasculitis in the UK and Ireland. They say they hope to better understand vasculitis and identify the difference in predisposition to disease.
Hi Marionofnorwich First I wish you well as you sort through all of this. It's a lot to process. Just make sure whatever you do is what you really want. My comment is of a practical nature. In '85 I had three different viruses Epstein Barr, CMV and a third I could not pronounce. The.symptoms were debilitating...the most difficult my brain..While I knew it was a result of what I was dealing with it was hard to process info and accept. So I recorded doctor appts. and other mtgs so I could go back and listen when I needed to. Just an idea....especially for that doc or other places abundant with details
Thank you all. Thankfully, I don't feel especially 'brain-foggy' it was all just a bit quick. I was in for half an hour or just over and most was me explaining and Max Yates listening which must have been a bit boring for him. Then a quick exam and he explained his suggestions by which time I sensed that we were wrapping up quite briskly. It is common with very bright-minded people as their brain works quickly and needs to move on. I know people (not him) who can barely communicate because their brain works so much faster than their mouth can keep up with! Anyway, I am not worried as I am sure the next stage will give me the time and space I need plus I will be better informed. but it is good to know other experiences and things to watch out for. He did briefly mention 'Sarah' so I take that to be Sarah Mackie but I couldn't swear that it is her study. It is due to start after Christmas apparently
Good tip to record consultations though. I often do that in other situations. Strangely on that occasion I had left my phone at home - very unusual for me to be without it!
I have had 2 years of a 'biologic' drug - Tocilizumab, for GCA-LVV. It enabled me to reduce the pred to zero. I was fortunate in that I didn't experience any ill effects. I had to discontinue it when the NHS funding came to an end.
I am now on Methotrexate. I am aware that a trial of MTX (or placebo) for PMR is due to start in the New Year and that the lead researcher is Sarah Mackie. Before you agree to enter any clinical trial you will be given full details and an opportunity to participate or decline. In a double-blind placebo-controlled trial, those who get the active drug may benefit more than the placebo group, but that is in the nature of medical research.
How are things going on the MTX? Is the LVV and inflammation still staying under control? O've had to abandon it, the side effects were too much for me
It's early days yet, as I've only been on it for 4 months and it takes a while to become effective. We'll see what a series of CRP readings shows. The problem is, I can't see inside my aorta to know what's really happening! I don't feel as well on MTX as I did on TCZ, which is a shame.
I'm sorry it didn't suit you - are you on an alternative?
It is a real shame as the MTX seems to have worked so well for you. I'm seeing SM tomorrow, might give the Hydroxychloraquine a go that I started for a few weeks then chose to switch to MTX instead s I felt it was worth a go. I remember your CRP readings used to be very helpful to you when adjusting Pred dose and knowing what was going on, they are for me too. Will you have another PET or CT scan?
I don't get the bit that 'He said that the long-term use of steroids might be what is causing the stiffness rather than PMR' - that sounds nonsense to me - the fact you are stiff more likely points to the fact that you are not on a high enough dose to control the inflammation? Yes we all want to be on as low a dose of steroids as possible, but our body tells us what we need. Or am I missing something here?
I've known that since finding this forum. They need to be challenged instead of spouting such nonsense. I expected better from Max - I thought he was one of the good guys? If not even he understands the fundamentals of PMR what chance have we got?
I think he is tangocharlie Just that what I was telling him was good for me to express but not really relevant to what he was thinking needed to happen which was basically to pass me to the trials team. To give him his due, he did listen to me and I think had I said anything unexpected, he would have taken notice
I think steroid myopathy might be a factor with me. Although I'm off pred, my muscles are weak and that could be interpreted as 'stiffness', in that I can't do things I used to do 6 years ago.....! 🤣 or should that be 😥?! I'd rather keep smiling, instead of the alternative.
I hope Sarah does more research on it. She started looking at it years ago as part of her PMR research but I don't don't what the conclusions were. My muscles are weaker than they were 10 years ago but I don't know if the steroids are to blame, or lack of weight-lifting or conditioning exercise or just old age. It's tied in with the fact that most of us can't do as much exercise as we'd like when we have PMR, even swimming is difficult. Yet some people with PMR can still do exercise - there are several highly athletic people on here who keep up the running etc, even if at a slightly lower pace than they used to do.
I definitely can't run. If I try anything like that, the muscles in my legs spasm. Even swimming makes them spasm but they are not especially weak. I can cycle but I can't stand for that long and when I do anything more than walk around house and garden I get tired and have to sit down. I don't think it is myopathy though
I'm the same. I do know steroids actually help keep my legs moving, if I don't take enough they are like concrete. If I do take enough I am sprightly and can walk for miles which would indicate the muscles are not weak?
Part of my problem seems to be the pumping mechanism not working well in my legs so the fluid pools around the feet, ankles and calves. But given that steroids actually help and it came on at the same time as the PMR I don't fit the typical picture for vascular problems.
And it's a case of the usual operating silos in healthcare - the people who deal with vascular problems in legs don't know anything about rheumatology conditions and vice versa. One of my unanswered questions is that if things like polymyositis can affect legs then presumably polymyalgia can too? Especially if PMR is actually a sub-type of vasculitis? And you can have multiple auto-immune things going on at the same time. It is wrong to simply say steroids cause the problem especially if they form part of the solution. Might be worth seeing a physiotherapist, they tend to know most about limbs
I have thought about seeing a physio, but rang one once, she wouldn`t see me because I had PMR!.....and often wondered if linked to OA in base of spine....what complicated creatures we are!
I have seen a few physios, one for acupuncture and ultrasound which I think got me out of a real hole when my knee was extremely painful (I think secondary mechanics not PMR), another that sent me an exercise regime by phone app which wasn't really that helpful and another (physical trainer) who was fully briefed but even half an hour of delicate exercise caused a week of repercussion ie very stiff calves and thighs. I did Qigong for a while but ultimately seemed to make things worse but perhaps I need to go through a barrier, like when you start a new sport, or cycle after not cycling for a while - you expect to have a delayed onset of stiffness - just not sure here what is best. I would like to go to a masseur and a physio weekly but it is expensive, probably £100 a week, though perhaps I could alternate and throw my osteopath in there once a month! He is very good on soft tissue and has helped me a lot
I did acquafit to get mobile pre-pred - and it let me manage Pilates and Iyengha yoga. It was affordable because it came in the offer at the local gym I joined because it had a pool when I couldn't manage anything else. Might be worth looking aroun - the instructors were amazing and one actually did rehab for the army,
Yes, I wasn't sure what his take would be. I have been on 8.5 or sometimes 8mg for a few weeks now thinking that was probably a good holding dose until I had further advice but he is definitely keen on finding ways to get me off Prednisolone as I said shall I continue to reduce. I know I have a combination of stiffness and mechanical damage ie at the moment my achilles tendon is hurting because the muscle above it is stiff and tight following some walking a bout 10 days ago - stiffness PMR, tendon mechanical damage as a result. And I know that if I walk or cycle, the muscles response is not 'normal'. Still I am all up for doing more stretches so will see where we go from here
Note for people in the UK, Actemra, as it is known in the USA is called Tocilizumab in the UK and currently only available on trials for GCA or LVV, not for PMR, so is not yet licensed or prescribable yet for PMR and won't be at least for many years, if at all, it depends on the results of trials, NICE guidelines etc etc. Shame, as anecdotal evidence from people who have tried it seems to suggest it would help.
All those things you list can be attributed to steroid withdrawal or uncontrolled inflammation or adrenal insufficency, but if it's from steroid withdrawal they should be temporary? As for mypathy, it is a known side effect of steroids but is also not clearly understood and it's difficult to separate out the effects of steroids vs age and other factors such as lack of use. For people at this stage of the PMR journey it is very complicated to know what is going on and wrong to blame just one thing and/or ignore other possibilities.
Hidden I am relatively simple and until April was reducing steadily and had just gone down to 4mg from 5mg when Covid struck (with hindsight I should have reduced by half a mg but there we go) so I think I was unlucky. The extreme leg stiffness started after that and I did go back up, finally to 10mg after tapering upwards via 6/8/9 then 10 and am now tapering back down again so it is a bit of a Covid legacy and unfortunate in my case. Could be PMR, could be steroids, who knows but still keen to taper back down however I do it without doing it at all costs. As ever, I will take the advice I am offered and process it in my own way - whatever makes sense to me and matches my experience. EG I stopped taking blood pressure medication when it made my legs swell and BP rise in spite of GP prescribing it. I am clearly a awkward patient!
You're not awkward at all, all medical decisions should be made jointly, we can listen to the doctors' advice but they don't always know the answer, or get things right first time or every time. It must be so difficult for them dealing with women of a certain age with different things going on, to try to unravel the different strands, especially as treating one thing can have a knock on negative effect on another. For example the side effects of medication. What I find helps me is to work out what questions need answering in my mind, then research what I can and make a list of questions for the doctors. With you one of those questions is 'what is causing the stiffness/fatigue?' and it may not be one simple answer but a number of factors. Keep going.
And it was a bit of a mutter, rather than a strong statement. I have an update. Shall I start a new thread or continue here? PMRpro dorsetlady1 @tangocharlie?
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Yes it really is lovely having a Granddaughter. We get the video clips and often use Facetime or Facebook to chat and get gurgling noises back! 
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