….this morning, when I woke up feeling as though I had been run over by a bus! Sharp pains all through the pelvic girdle and into the back - just as I had felt pre-diagnosis in early January 2021. At that time my GP started me on the 15mg Pred regime, followed by reduction after 4 weeks to 10 mg. That all seemed to go well and after discovering this forum and reading of other experiences, I then followed my own very slow taper down to 5mg where I had been for a week before this flare and at which point my CRP was down to 1. Very disappointing. After reading various posts on what to do to counteract a flare, it seems that I should now add another 5mg to my existing 5mg daily dose, stay there for a week or two to stabilise, and then try to reduce again very slowly to 5.5mg,and hope that the flare does not occur again.
I should add that over the past couple of months, my husband’s mobility has deteriorated considerably so I have had more stress and wheelchair pushing than before - maybe this had been a contributing factor.
Any advice from all you experts would be much appreciated. Many thanks.
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Greenlife
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It does sound like a flair and PMR feeds on stress of any kind. As you say increase by 5mg for a week or so then reduce in two steps and see how it goes. Good luck.
I do feel for you especially in view of the fact that we have more than enough hurdles to leap over in normal every day life just to get by ,if that's possible with PMR.
I'm not sufficiently experienced enough to advise you regarding your flare or what dose to take but looking back at the two or three that I can recall I think that I took about the same as you are suggesting. I think the trick is to be aware that a time limit doesn't always work,the inflammation will sneak back in and each flare becomes more and more difficult effectively making you feel worse.
I have no doubt that pushing a wheelchair and of course the stress involved caring for your husband will have played a big part,is there anyway that a mobility scooter could help ?
I don't know what your finances are like but have you considered applying for attendance allowance ? This isn't a means tested benefit and can be used for whatever you choose. If you attend your husband throughout the day,or night,then you may well qualify and this would help with the mobility scooter or such equipment as a motorised chair/bed etc, Just a thought. You may even qualify for a carers allowance.
You need to reduce areas such as stress or physical exertion as much as possible.
Well !time for bed for me but I do wish you the best and hope that your flare is short lived.
Thanks for your thoughtful reply - husband finds walking extremely painful and difficult, and although he is pretty independent while we are at home, he needs a wheelchair when we go out anywhere. We live way out in the country so his current round of doctor and clinic appointments has meant driving him to them and then transferring him from car to surgery etc by wheelchair. I’m beginning to realise how loosely the term ‘wheelchair access’ can be interpreted and how few of these medical facilities have accessible wheelchairs for their patients! We have resorted to buying our own and of course since it has to be loaded in and out of the car each time, we have had to go for the lightest possible model which is probably not the easiest to push! However, he does have a motorised scooter for home and this is a real boon, especially during the summer when he can ‘scoot’ around the garden.
I think the others are right. Sounds like right now you have a lot more heavy physical activity and one of the unfortunate side effects of both the PMR itself and pred is muscle weakening which makes one more prone to injury. I hope the wheelchair pushing, etc, is not causing an injurious strain on you. Hopefully the additional pred will get the flare under control. You probably don't really have time right now but if you can find a way to strengthen your muscles (once you feel well again) that might be a plan. Nothing strenuous, just simple exercises to help maintain range of motion, improve balance and even help guard against injury (like a strained back).
There are couple of types of flare, the most common being too rapid tapering. But if the flare is really an increase in PMR activity, which very likely yours is, it may take longer to completely subside. You likely won't need a greatly increased dose for very long, but don't be alarmed or too disappointed if you really do have to stay at, for example, 6 or 7 for a bit longer than you expect. It's wise of you to consider a relatively slow taper back down towards your old dose so if your new dose needs to be higher you won't race past it. You'll get all the way back down and be able to resume your taper when PMR says you can! Good Luck. 🍀
Thanks for your wise words -yes I do think the recent stresses have probably caused increased PMR activity and thus contributed to this flare. I have been feeling the exhaustion for several months now, but just put it down to my reducing regime, and certainly didnt expect such a sudden return of the terrible pains.”” Even though I am now 80 I still feel pretty fit muscle-wise - I have kept up my weekly Pilates session throughout the illness and have been doing the domestic heavy lifting for several years now since my husband is no longer able to. Anyway have just taken the increased 10mg dose and hope it works its magic soon. Everyone has been so kind, helpful and supportive.
The post linked contains advice on dealing with a flare, and would agree that extra stress and pushing wheelchair has contributed to that…..also after the initial increase, you may be able to drop down in two rather than the slow taper you suggest….say down to 7/7,5mg for a couple of weeks then back to 5.5mg.
But if you still have the same stresses which caused this flare, just be careful about reducing further - maybe once you get back down to 5.5mg or 6mg just stay there and make sure all okay.
Thank you for your advice - I have just taken the increased dose for the first time and hope that does the trick to stop the increased PMR activity before it gets too entrenched. As I said in a previous reply, husband is pretty independent while at home - it is only when we have to go out that things get stressful with heaving wheelchairs in and out of cars and then pushing them into whatever clinics/waiting rooms he is needed. Hopefully the current round of medical appointments will come to an end before long and this extra stress will die down. But as long as they continue I will heed your advice not to reduce too far too soon - I had forgotten how debilitating the pain is until it came back with a vengeance, and of course this just makes the muscles feel weaker. Hey ho!
Good... but you do need to look after yourself to be able to look after your hubby...fingers crossed things soon settle, and you don't need the constant to-ing and fro-ing to appointments for him.
Thanks for your prompt reply. Sadly a motorised wheelchair isnt an option - we live way out in the country so all expeditions to the various clinics and surgeries which my husband needs have to be by car, and a motorised wheelchair is just too heavy and too large to fit into my car. I suppose we could buy a bigger car, but then I would hate having to drive it or to park it. We have opted for the lightest folding wheelchair which I can just about heave in and out of the boot, but of course that is probably not the easiest to push, or the most comfortable for him to sit in for long. It’s a compromise Im afraid, but thanks for the thought. The local hospital car service is very much in demand, and would probably suffer the same restrictions - in the end we prefer to remain independent. Hopefully this bout of medical appointments won’t go on for too long and we can then return to a more relaxed life!
This is interesting. It reminds me that one of the older people in my stepmother's family (her uncle actually) for many years, after his wife died, used to drive people to medical appointments and such, repayment for many kindnesses he had received during her illness. When I started this reply I couldn't remember where he lived, but it's just popped into my head. Axminster.
I'd certainly look to the stress and more physical effort as possible causes - believe me, they can lead to a very increased need for pred to manage the PMR symptoms.
Make sure you investigate ALL possible assistance - as others have said, an electric wheelchair or scooter would help you a lot and it IS possible to get one through the NHS if it is required. If his mobility has deteriorated then you do need to be reassessed and see what is available that would be appropriate.
Thanks to everyone for their support and suggestions for accessing help. I will look into all those things when I can see where all these medical assessments are going.
this is exactly what happened to my husband when he got to 5mg. He went back up to 10mg and reduced by 10% every 4 weeks till he got to 5mg. Once he got to 5mg he reduced every 6 weeks. He’s now on 3mg and been good and about to reduce again. We also know as you say that any physical or emotional stress can make symptoms worse. I hope your soon feeling better and good luck
Thank you - that sounds like a sensible plan that your husband has been following. So glad that it is working for him so far. I will bear it in mind when the time comes for me to start reducing again. It is disappointing when the flare happens but then you just have to pick yourself up and start again.
If I am able to push a man around in a wheelchair when I reach your age I will be proud of myself! I do think that with PMR you should probably try and find a different solution.
I have been where you are and know the difficulties with heaving wheelchairs , scooters etc. While my hubby was alive and well he used to do it for me then when he became ill I had to do it for him and myself. When he died and my back had got a lot worse I realised that I needed help to get my scooter/rollator in and out my car. I did my research and found a mobility company in Colchester who were able to fit a boot hoist in my car. It cost £850 to do but I am now able to get my scooter/rollator or my electric bike in and out of the boot with no strain to me.
My car is a saloon car with a boot which meant a custom solution for my boot hoist but if you have a hatchback it's so much easier to find a mobility company to fit one. They take up very little space too so you have all your boot available. I had a scooter that comes apart for transporting but even the lightest bit was too difficult for me to lift. The company who fitted my hoist have managed to get it so it goes in and out without me needing to break it down. Just the basket and seat to put on now which I can manage.
It's given me my freedom and I wish we had done it earlier as it would have made looking after my hubby much easier for all those hospital appointments etc. I admire you being able to do all this at 80! I am only 60
Thanks for all your suggestions - will look into local community transport as well as a hoist. Everyone has been so supportive. It is so comforting to know that there are so many people out there who will give their advice so freely - thank goodness for this wonderful forum and especially for those who administer it.
Just to add that we have a Volunteer run community transport scheme in our villages, In fact I used to be a Co-ordinator. Recently they drove me to the Eye Hospital on several occasions as I wasn't able to drive after my Op and anyway there is no parking at or near this hospital. I was picked up at my front door, helped in the volunteers car and helped in to the hospital. The driver will wait for up to 2 hours (although most will wait longer) and then drive you home door to door. Often Hospitals will fast track a patient who has community transport, that in itself is a bonus. The cost to me was £15 total and its a long journey, a taxi was £40 each way. Please give it a try if you have a similar scheme it works really well and you have nothing to lose trying it once, you may be surprised how easy it makes life for you. Good Luck
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