I'm writing this because I know you will all get it and I'm struggling- massively.
I'm 46 and GP diagnosed PMR in January. Fast forward to rheumatology who was questioning the diagnosis and wanted to exclude other options too due to my age. Hence rapid taper from 15mg to 10mg immediately for 2 weeks then 5mg for 2 weeks, 2.5mg then off. I'm at 5mg due to drop to 2.5mg on Thursday but the pain. Omg the pain. I feel like I've been hit by a car everyday. Working mornings only but struggling to do even that now.
I need to get to 2.5mg at the most to allow them to order a PET scan to look at whats happening. She's worried about vasulitis.
I'm hanging in there because I can't run the risk of having to go through this again to get a diagnosis but it feels like a long slow torture.
Any hints, tips or anything would be gratefully received at this point.
Thanks all.
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Thanks Dorset Lady. Work have been fine really and my sick note is until April - I can work work mornings or take the time as sick so no pressure really. I've managed to stay working for now.
I might take the time off and not worry. At least you can do whatever you need to help if off work. Got bath certain it helps as does walking.
I would be calling her and tell her the pain and situation. The new guidelines for PMR brought the age down to 50 and the new guidelines for GCA have also been brought down to 50. I wonder if she knows? That battle to get those age ranges down was a hard fought one by Patient Representatives.
How long have you been on pred? Looks to me longer than two weeks and at a higher dose.
Normally PRED is not given for longer than two weeks at a time and, as far as I am aware, no more the 10mg per day for those two weeks.
I do not want to add to your pain and worry, you need to talk to your GP and tell him/her exactly what is going on and get some answers. And ask about the possible problems with a fast reduction as you have been on a high dose for more than two weeks.
I would be asking those questions as soon as possible.
Many of us have been arguing for years that PMR is not only a sister illness to GCA which is the biggest member of the Vasculitis family, but so is PMR.
My management is now with the Reheumatologist and not GP and I'm sure she is aware of the new guidelines. They have a helpline which I have used, they are happy with progress but it really is the only way to get a definitive diagnosis via PET scan. Rheumy is being very thorough and I'm thankful really. So we may end up with a clear PMR diagnosis anyway. Which would be better than active cancer.
I was on Pred for 5 weeks at 15mg - would have just started to slow taper if we were happy it was PMR. I'm not sure what you mean by being on Pred for no longer than 2 weeks? PMR treatment is 15mg for 4 weeks or so then taper slowly or so I was.led to believe from my reading.
jinasc means the usual way of using pred is short-term - and many doctors seem to think they can manage PMR the same way and reduce the dose in a similar way however long the patient has been on pred. She is just concerned at the speed of reduction after you have been on pred for a year. Think I might be too!
Thanks for explaining. I'm concerned too given the symptoms 🙄.
But I'm glad I have access to the experts via a helpline- I suppose that's the main thing, that we have access to that sort of advice in this circumstance.
I was given 25mgs which took a few days to work, so 15mgs isn’t full proof. I think it depends on how much of the steroid your system actually absorbs 😀
I find heating packs to help with stiffness. Not sure about your pain but worth a try. You are without a doubt in a miserable place 😘 Hope you quickly find answers.
I know I empathize so much because you are right it does feel like slow torture when you have to taper off the thing that's helping you to confirm a diagnosis.
It needs to be done sometimes , you know that , but it's horrible , the only thing that I can say to give you some relief is that this time will pass and when you have the test done and are back on the right treatment things will be easier again.
DL has given you great advice , the only way to cope with this Pre Diagnosis wait when your inflammation isn't being managed by your Meds is to take the time off and get more rest . Scale back on your domestic and social activities too , it's all about keeping your body and mind calm with TLC.
If you are doing that last step down to 2.5 this is the time to take that leave . And as you begin let the Rheumatologist know you are now beginning the dose they require and ask them to book your that Scan , as it could take a few weeks for the appointment to come through and you want to have it as soon as you are allowed .
I will ring the helpline again and ask for that scan to be booked so at least theres not too long a wait.
And I got a cleaner for the next month so have some help there. It hasn't helped that my partner broke his ankle last week so between us we are a right pair.
Know how you feel - part of the reason I haven't started reducing is because OH was in hospital and is still back and forth for tests/monitoring. He's wearing a corset because of a spinal fracture - can't bend, can't lift anything, walking isn't easy so it is all up to me ...
I am about to have a PET-CT to see if there is anything like that going on after another flare, the most like the start yet but when I asked about the pred dose was told by the rheumy 10mg would be OK and the nuclear medicine person seemed to think even more wouldn't matter - though I am less confident his advice was correct. I will reduce quickly immediately before the test as advised by the rheumy to as low as possible. I'm working on the concept that if you have symptoms then something must show up.
In the 5 years I went through PMR before diagnosis and pred I found that warmth BEFORE getting out of bed meant I could get dressed more easily - we used to suggest an electric blanket before getting out of bed! I went to the gym most mornings - there was an aquafit class in a warm pool and after that I could move enough to do a Pilates or Iyengha yoga class. Obviously that isn't practical for you - stretches in a hot shower immediately after getting out of bed would be a start though. The steam room or sauna helped a lot too. And I would sit with my back against a radiator in the afternoons. I did notice that I felt a lot better in the evening after a glass of wine - vasodilation I assume.
But really - there is very little that helps significantly I'm afraid. Though I suspect it may not get much worse - not being on enough pred is not being on enough pred however you look at it. You need enough and once it isn't enough the inflammation mounts up steadily like a bucket being filled up by a running tap. Which I hope I can set free quickly in the next 10 days. My only real concern is how I get to the hospital for the scan - it is 70km away, a short walk, 2x trains and a bus. It won't cost me anything using my regional travel card but can I manage!
Our public transport is superb and integrated. But I will probably ring the White Cross - as a member I'm entitled to 6 free transports to hospital when public transport isn't really an option. There is also a minibus service for patients to Bozen - but not sure who provides it if it isn't the WC. I'm looking at a day trip by the time I get there, have the test and get back - no-one I could ask, everyone works except one neighbour who has also just been in hospital!
Oh dear the effort just for tests...too much sometimes...I feel "safe" tucked indoors in so much pain....the thought of going to hospital on Thursday to see yet another rheumy, seems too much, but needs must I tell myself. If he suggests a CT-PET scan, what does that show different to xray or MRI?.....
Ideally it would be done in everyone, despite the radiation load, but it is relatively new and expensive and not available in every hospital. The waiting times are a bit high too - it is used for cancer diagnosis and they, rightly, get priority.
An all dayer can be a bit too much at the best of times - so let someone else take the strain! ...you know it makes sense....and hope everything's okay.
Yes, I know I will feel bad enough going to Llandudno in the car on Thursday , I couldn't imagine doing the trip on the buses and trains from here and then having to go through all the prodding , poking and questioning .
By the time you've managed to wait for the meds to work and get ready it is a full day job for something that may last an hour at the most.
How are you doing , I'm surprised Physio starts so early , I hope it goes ok for you xx
Bit of a change of plan - tomorrow instead of today - ceiling collapsed in physio Dept in local hospital (following wind damage to roof);- so have to go a bit further afield - not much difference!
The local hospital is brilliant - park at the village station, train to the hospital station which is at the back door! If only they had thought of that in Bozen!
Oh flipping heck, you're doing similar. I agree with the bucket analogy, it does feeling it's building and going to over flow pretty soon. Interesting your rheumy thought 10mg was ok. I have to admit, I didn't have enough symptoms at 10mg mind so that's helpful for future tapering potentially.
I do most of those things you suggest, stretching (even though it hurts) makes it feel better. I still go to Pilates and do what I can. Teacher is brill and he can offer many alternatives.
The only thing I have worked out that seems to contradict a lot of you all is that alcohol makes the symptoms worse. Unbelievably worse and that made me think about allergy or something similar. It doesnt matter if i drink one glass of wine or three.
Good luck getting to the scan. I will have to do similar to get there given that my partner has just broken his ankle. Its aboit 15 /20 miles for me (I think. Haven't got the address yet but know it's Leeds)
Best of luck to you too. Let get this done asap 😖🙂
I can't drink either , feel like I've been run over by a truck or a steam roller if I have more than one so I may just try a glass at Christmas or a little cider at a BBQ in the Summer but I always regret it in the end . I can't drink regularly . I think we are all just very different when it comes to alcohol.
( I do suspect mast cell activation syndrome in your case just because of the other auto immune diseases you and I share. ED, and Sjögren’s. Alcohol is a known trigger for degranulation of mast cells.)
Yes , as we always say it isn't always about the PMR, GCA or Pred .
But most of us seem to have something that makes our path on the drugs or with the condition an individual journey . Just adding PMR and it's drugs on top of something like BP issues , skin issues, other pain conditions or OA can just tilt us past the edge of enjoying the things we could before the PMR.
For some who have more delicate stomachs or need the PPI and have GERD on top , the alcohol or spicy foods can also make mixing alcohol and steroids a rough ride.
Our home caught fire ( Behind wood burning fire place-our 18 year old high school senior was home because the school would not excuse his absence) while my husband and I were away at my sisters funeral. ( December 8 2019)
Very thankful no one or pets hurt.
We are still not back in home- still under reconstruction. Entire roof had to come off -
I told you ... can’t make this sh$@ up.
Unbelievable.
The funny thing is I’ve always prided myself on being a person of , “ no drama in my life...”
Oh good grief , how awful I hope it's not taking too much of a toll on your symptoms and you will be back home soon.
My neighbour had a bit of a fire before Christmas , I was home with my youngest , whom I sent out three times to double check if I was going to have to make the effort to evacuate. I did keep joking that unless the apocalypse arrives I may not think it's worth putting my shoes on.
I thought of histaimine intolerance or MCAS too. I have allergies to all sorts of food and to all smells like perfume, candles, flowers, air freshners etc. Can't have any alcohol apart from prosecco or champagne. Ordinary wine, gin etc makes me very ill even after one sip. I've been battling for a year to get an appoinment with immunology and it's coming up in April. I suspect I may have something like MCAS but I've been warned by people in an MCAs support group not to mention it because the Immunology department at Leeds 'don't believe MCAs exists'. Yet it is a recognised thing in a few parts of the NHS and in other countries like Germany and Switzerland. It's so frustrating. I've been avoiding histamine as much as possible and that has slightly improved things, but it's random smells that affect my breathing - I had to be carried out of a cafe recently because of the aroma of ground coffee, and a violent reaction to someone wearing perfume who sat next to me on a bus. How do you cope with your MCAS, do you take anything?
I had never heard of MCAS, until my specialist Rheumatoligist mentioned it to me. She’s apparently the mast cell, “whisperer...”
Her name is Dr Jill Schofield, our if Denver Colorado. She’s an auto immunologist and Rheumatoligist who trained under Prof. Graham Hughes ( started the London Lupus center, where I also attend clinic.)
My primary auto immune disease is Anti Phospholipid Syndrome.
Dr Schofield has run the data on her patients, and ~50% have MCAS. ( but usually they also have Sjögren’s, which causes many ,” allergies”.
I also have Ehlers Danlos, low Lupus, POTS, Sjögren’s Syndrome, epilepsy... ( apparently Auntie Bea - aka Bleary Eyed- has found a long lost friend in me. She no longer is the only Lone Ranger on here with all the dysautonomia and tummy weirdness...)
It’s mainly the migraines for me- we think, with mast cell.
It came into question when dealing with how to decide which suppress to use for APS. I keep clotting.
Steroids help tremendously with vascular spasms .
I will write to you specifics when I have a bit more time- I just got interrupted- going to send this now so I don’t loose it- I’m not home but on an iPhone
Gosh that's quite a list of AI things going on .... sorry to hear that. Ive hijacked someone eles'e question here I think so will take this offline and let you know how I get on with my appointment. the term 'vascular spasms' I think accurately describes the reactions I get, I'll investigate. Thank you Kelly
I suppose their intention is to do exactly what we don't want and get a good load of inflammation going on for some time to give them more chance of spotting what they want. They are all different about how far you have to go , it's an unbeatable situation to be put in from my experience .
I was in absolute agony , it felt worse than it was when I first began on the medication . As soon as I got a dose back that worked I was nearly in tears with thanks , two days later it was doing its job though and I wish one of the specialists was around so I could punch them for making me go through it.
I've had to do this sort of stupid thing for three different drugs over the years and was kept off antibiotics and stomach meds once for a month just so they could do a breath test for something else 😣😣😣😣
It takes about 2 weeks and the tapering plan was based on getting the symptoms back as quickly as possible while still being safe. They won't book the scan until I'm on 2.5mg and preferably 0 prednisolone so I'm over a barrel. T
At one point the rheumatologist was hoping (and I was too) that the pain I had was post viral myalgia and that it would have resolved by the time the taper started. I did appreciate this consideration because had the pain gone there would have been no need for long term steroids.
Have they actually prescribed you any pain relief alongside the Steroids that would actually help relieve the Viral Myalgia if that is possible , like a Nerve relaxant or antidepressant or Anticonvulsant . These medications can be taken along side your Steroid , often at night . Some of us need both even with a PMR or GCA diagnosis because we also suffer other Pain that Steroids isn't as good at helping.
It may just help get you through until you have your scan even during this few weeks waiting.
I am so sorry, I remember the pain I had before pred! I can understand they don't want to give you a scan that may be inaccurate. If only they would all agree on how much pred would muddy the waters. x
Yes my situation is very similar, as are the timelines. I really do question that doctors are are far to quick to reach a diagnosis on this particular condition and I told my doctor just that. He didn't like it but I told him although the stiffness had subsided with the pred, I was still to be convinced it was PMR and I am very determined to continue to question as we move forward.
Whilst I'm struggling right now I'm thankful that my Rheumatologist is investigating fully. I think we are right to question, pred will mask inflammation from most (All?) Sources therefore the diagnosis is crucial.
Contrary to a lot of claims, pred does NOT magically relieve ALL forms of pain! Nor does it have the very speedy effect you report at the doses used in PMR in many other inflammatory disorders which is why the moderate doses are so crucial.
It doesn't "mask" the inflammation - it combats it. I don't consider that the same thing. Unmanaged inflammation in the body causes damage and predisposing you to other disorders in the longer term. If all the pred is doing is reducing the risk of those long term problems as well as providing me with pain relief that is fine by me. It isn't any worse than a lot of other medications that people happily pop like sweeties.
It is right that the doctor investigates - but since a lot of that investigation can be done quickly there is no reason why you can't at least have some QOL in the meantime. Unmanaged PMR is said to be 7x more likely to turn into GCA - and if I have any chance of it being GCA and pred stops the symptoms, that is fine by me. I speak with the background of 5 years of undiagnosed PMR - within 6 hours of 15mg pred I could move normally. There are some theories that PMR that is not diagnosed quickly may become a longer term and more resistant condition - that fits.
Well I think you are quite right of course in this important point as 'masking' implies the inflammation is actually still there but at a less perceptible level while Pred actually reduces and hopefully eliminates the inflammation which if left unchecked does even more damage to our vascular systems where you can get a 'circularity'of problems as well.
P yes it is a struggle I am at home now everyone thinks I should go in a home but I don't want to I want to try and manage it home but my legs feel I'm feel like they are just not there
I had that symptom but it disappeared as my dose got lower - I did make sure to walk into town and back every day even if it felt as if I had no muscle in my legs!!
Have you tried Actemra ? I am back on the shots. Restarted yesterday after off for a yr. I really missed them
Because with Actemra I could taper to 2 mgs prednisone. Without them I’m all over the place with pain and prednisone . I’m hopeful that I will be leveling off again.
Dadcue, this is a little naughty 😉🤭... Of course analogies are created to explain complex ideas. I think lifestyle changes are the biggest thing after pred discussions that arise here. Diet, exercise, rest, work changes, saying no, etc. Given that no one knows exactly what causes pmr and pathways for all forms of pmrgca not identified and treatments formulated that truly work for the majority.... Do we just not treat the conditions...just say live well and all will be hunky dory? I am sure you are not suggesting that!?
I am so sorry you are suffering lately and hope changes you see on links like this really help you. And I mean that genuinely you are having a bit of a harsh time at the moment and I do realise that. Best wishes. 🌻
"The predominant effect of corticosteroids is to switch off multiple inflammatory genes (encoding cytokines, chemokines, adhesion molecules, inflammatory enzymes, receptors and proteins) that have been activated during the chronic inflammatory process. In higher concentrations they have additional effects on the synthesis of anti-inflammatory proteins and postgenomic effects.
... In controlling inflammation, the major effect of corticosteroids is to inhibit the synthesis of multiple inflammatory proteins through suppression of the genes that encode them.
... Conclusions
Corticosteroids exert their anti-inflammatory effects through influencing multiple signal transduction pathways. Their most important action is switching off multiple activated inflammatory genes through inhibition of HAT and recruitment of HDAC2 activity to the inflammatory gene transcriptional complex. HDAC2 may play an important role in deacetylating the acetylated GR after corticosteroid binding so that it can repress NF-κB regulated inflammatory genes. In addition, corticosteroids may activate several anti-inflammatory genes and increase the degradation of mRNA encoding certain inflammatory proteins. This broad array of actions may account for the striking efficacy of corticosteroids in complex inflammatory diseases, such as asthma and rheumatoid arthritis, and the difficulty in finding alternative anti-inflammatory drugs."
There is no single way that corticosteroids combat inflammation - but in some cases they do prevent the development of inflammation in the first place. Hence, I imagine, the effect of Lodotra/Rayos being so marked.
Probably - covers all options. But until it becomes clear what the exact mechanism is you can't position the sniper to cover that particular exit. It is obvious that there are several underlying mechanisms in GCA at least - we have the sniper for 1 of them. And at present you can't/shouldn't combine biologics - which is what it would require in some cases.
Yes. After my mri I was glad to avoid the neurosurgeon!
I can only offer you a virtual hug and sincerely feel your pain. I remember the pain before I got a definitive diagnosis...it felt like a hundred lilliputians tearing at me. Hopefully you will be on your way to effective treatment soon.💗
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